How We Spent Our Summer Vacation

or

Take The Long Way Home

                           August , 2002

 It’s hard to believe that a simple summer vacation can turn into an unexpected thrill ride but that just seems to be a part of Rose’s impact on our lives.  But I’m getting ahead of myself; what’s important is that everybody’s OK now.  Nobody got seriously hurt in the car accident and Rose was, for reasons completely unrelated to the accident, in and out of the hospital, with only a brief, less than 24 hour stay in the PICU.  Rose bounced back from this illness faster than we’ve ever seen her recover from any of her medical challenges.  She really seems stronger and sharper now than she ever has.  I think that, along with the wonderful support we had from our special friends in the PICU has gone along way to healing the pain we feel in our own hearts when Rose is faced with these impossible challenges. There is kindness and support that comes from the most unexpected places to help carry us through our darkest days.

This wild adventure started out all quiet and innocent as our long anticipated, once a year, big family summer vacation.  We had already done one weekend camping trip to the Connecticut shore.  That had gone well but we were really looking forward to traveling to distant, exotic lands of New Jersey.  We chose New Jersey as our vacation destination because of its warm ocean beach that we could reach in reasonable amount of car travel time and the possibility of near by interesting sights.  Erin and Katie do alright in the car on long trips, usually zoning out with their music or books but Rose is a different story, after a short while she gets bored and, much like any little sister, she starts torturing her sisters for attention, she really seems to enjoy the reaction she gets from pulling on Katie’s pony tails.

 We tried to carefully make our plans for the least stressful vacation possible, just drive to the Northern New Jersey Atlantic Shore, keep the total drive time to a little more than three hours, go Monday through Friday to miss the big weekend crowds and go see things that could interest all five of us.  We were planning on swimming in some warm ocean surf, not the chilly waves that are typical of New England, and we were hoping to see the near by Statue of Liberty and take in our first sites of New York City as a family.  

Monday – Going On Vacation

It was a hot August morning when we headed out in the late morning after we finished packing the van full of camping gear.  We were all a little more tired than usual.  We had just been through several days of another one of this summer’s oppressively hot, oppressively humid heat waves.  Rose in particular seemed to be dragging a bit more than usual.  For a week or so Rose seemed to be showing little signs of increasing fatigue, and, of course, it’s easier to see in hindsight now.  She had started taking afternoon naps again, something she had stopped doing last spring when she made the big jump from her crib to a “big girl” bed.  I tried to rationalize to Cheryl that maybe Rose was finally getting used to her new bed and so now she was comfortable enough in her new bed to nap again but Cheryl wasn’t buying it.  She felt something was different, not quite right, but couldn’t quite put her finger on it. 

Rose’s summer schoolteacher, Mrs. H., had commented to Cheryl that Rose had unexpectantly shown an act of defiance.  During the last days of summer school just before our vacation, Mrs. H had offered to help Rose go the toilet.  It had become a fairly regular part of the school routine as she worked with us on Rose’s toilet training.  Most times Rose would accept the offer, sometimes she would politely decline, but this time Rose had an uncharacteristically harsh reaction, shouting our a firm, “No!” and snapping off a hard defiant ‘No’ hand sign in Mrs. H’s face.

Mrs. H had reported this when Cheryl picked Rose up on her last day of summer school, more in the sense that she was impressed with the firmness in Rose’s stance, and not that she was concerned about Rose’s behavior.  Mrs. H and Rose had enjoyed each other’s company for four wonderful weeks of summer school.   

Cheryl and I shared these observations as we drove out of Connecticut.  We thought maybe Rose was off her game a little bit but not a lot.  Maybe she had a mild virus of some kind; maybe she was run down from this last of the many summer heat waves.  We hoped for a break in the weather, maybe that would help; maybe she’d get her energy back.  Rose seemed OK, she really didn’t seem all that different, but somehow still not quite herself.   We hoped it would pass but we both had the vague feeling that something was eluding us.

 The ride down to New Jersey was uneventfully pleasant.  Last year our big summer camping trip to Cape Cod had pushed the limit of our family’s car-riding endurance, the three plus hour ride each way had really strained our nerves.  It was pretty tight fit in our van with the third, way-back bench pulled out so we could fit in a week’s worth of camping gear.  The three girls were a bit crowded in the remaining bench seat with Rose’s car seat squeezed in the middle with Erin and Katie on either side.  Cheryl and I were sitting in relative parental comfort in the front seats.  Erin, twelve at the time, was smart enough to position herself just out of a bored Rose’s grabbing reach.  Eight year old Katie, however couldn’t quiet figure out how to get comfortable and still avoid Rose’s reach.  I think Katie ended up getting her ponytails pulled every 30 seconds.  OK, I’m exaggerating but eventually Cheryl would end up sitting in the back switching seats with Erin and settling 2 ½ year old Rose down.  We made it, we survived, but it definitely left a memory that was part of decision-making process when we were making plans for this vacation. 

But the ride down this summer went OK, we didn’t get lost, we didn’t hit any traffic and we didn’t have to break up any arguments between cranky, cramped kids, a major accomplishment for our family.  Of course, the reason for this is obvious.  Our 3 ½ year old, all-through-with-napping Rose, did sleep, quite a bit.  Uncharacteristically, Rose did take one long nap before our lunch break and another short one afterwards.  We all did notice this as something different but, again, not that different.  We rarely go on long trips as a family, last summer in the car to Cape Cod and last November by plane to Florida were very unusual experiences for us.  Usually, our longest car rides are a 30-minute rides once a month or so, just one or two towns over to visit relatives.  Maybe Rose had changed since lat year, maybe now she was going to sleep on long car rides.

 We started unpacking all our gear out of the van and setting up camp in some of the hottest, most humid weather I can ever remember. We were staying at The Cheesequake State Forest, a small state campground in Northern New Jersey.  It was a short 20 minutes drive to both New York City and the Northern New Jersey Atlantic shoreline.  It definitely helped that Erin and Katie are getting older and much more experienced.  They’re both a big help with setting up our two tents, one for the two older girls, one for Cheryl, Rose and me, and the canopy for the picnic table as well as setting out all the bedding, and getting their tent arranged.  Rose has even started pitching in a little bit on the last camping trip in June or playfully running away when she felt like a good game of chase.  But this day Rose was a little more subdued than normal.  She seemed to want to just sit in one place, actually stay wherever we put her; she hadn’t done that in years.  Still, we were thinking, she’s probably tired from the long car ride or from the hot humid weather. 

We were all pretty tired, too, after setting up camp and decided to keep the rest of the day low key and as simple as possible.  All five of us headed down to the pond at the other far end of the campground.  The water was warm but still refreshing and the beach sand was clean and smooth.  As we’ve found in the past, a warm, clean shallow beach with no surf is the ideal play area for Rose, and this day was no different.  She seemed to perk up and take an interest in playing on the beach at water’s edge.

 After our refreshing swim we headed back to the campsite for a late dinner.  Later, we all spent the evening sitting around the campfire, a relaxing enjoyable experience that comes with camping.  Rose fell asleep in my lap at about 8:30.  This is about her normal bedtime at home but early for the first night of camping.  Normally, all the kids, including Rose, are excited to be camping and have a hard time getting to sleep that first night, staying up hours past their normal bedtime.  That didn’t seem to have the usual effect on Rose this time.  After I put Rose to bed in her hand-me-down Lion King sleeping bag (no port-a-crib this year) I joined Cheryl and the older girls back at the campfire ring.  We talked about our plans for the next day and for the rest of the week, what to do first, what to hold off for later.  Cheryl and I tried to take into account how Rose was feeling; we talked about her low energy level and how much she had been sleeping.  She had seemed to bounce back a little bit when we were swimming at the pond but she was still not herself.  We decided to do the vacation’s physically least taxing activity first; the next day we would go to the Six Flags Safari Adventure.  We’d be able to stay out of the sun in our air-conditioned van the whole day while we toured the animal park. 

That night, as we all slept, we woke to the sound of heavy rain hitting our tents, winds blowing and whipping and an occasional loud thunderclap booming in the distance. The heat and humidity was finally breaking, a cold front was rolling through. 
 

Tuesday – Crazy Baboons

We woke the next day to some the best summer weather we’ve ever had, a clear blue sky, dry air and comfortable temperatures.  It felt like a turn for the better and we would be fortunate to have this weather for the rest of our vacation. The campground was mid-week quiet and we had all slept late.  We had been concerned the day before when we saw signs in the bath-house stating that it would be closed for cleaning from 7:00 to 8:00 am (alright, I wasn’t concerned for myself) but we were all a little incredulous.  “How can they be closed then?  That’s when everybody’s waking up!”  Well, not us, we all slept pass 8:00.  Rose woke us up.  She enjoyed crawling out of her sleeping bag and climbing on top of mom and dad.   

Eventually we all got up and got going, even Erin managed to drag her teenage self out of her sleeping bag, and we enjoyed a lazy camping breakfast.  Cheryl made lunches for everybody and packed a cooler and by late morning we were heading down NJ State Rt. 9 for about a 30-minute drive to the Safari Park. 

We spent about an hour and a half slowly driving through, taking in all the animal sites.  We all enjoyed ourselves very much.  There’s something very impressive about seeing an elephant standing fifteen feet away from your car balancing on three legs so he can scratch his hind leg, or giraffes leaning down to look in your car window, or nervously watching European brown bears stroll past your car, or seeing a pack of antelopes turn their backsides towards you and defecate in unison.  This last one, in particular, caused a near hysteric reaction from Erin and Katie.   

But the grand finale was driving through the baboon compound.  The park does make an effort to warn you before you pull into the baboon area, and there was a bypass road available but nobody was taking it.  We followed the line of cars in through the large chain link fence gates.  Initially, we could see a crowd of baboons climbing all over a sub compact full of twenty-something year olds. They were enticing the animals with potato chops pressed against the inside of the windows.  Foolishly, we almost envied them and all the attention the baboons were lavishing on their car.   

Within a few minutes, the baboons worked their way along and atop the slow moving line of cars and we had our chance.  Erin and Katie again were laughing hysterically as first one baboon, then two and then, finally three baboons were climbing all our van.  One sat on the hood of our car, directly in front of me, munching on something.  I didn’t know what it was up to until it moved off to snack on the other wiper spray nozzle.  As soon as I realized what was happening, I hit the wiper spray button to spray the baboon away, but it was too late, the damage was done.  It didn’t help that Erin attempted to entice him back by spreading out her own potato chips buffet on our dashboard. She, of course, thought all this was incredibly funny. 

Another baboon climbed along the side window.  It was either Erin or Katie’s manic hysterics or it was just the sight of a baboon on the window where Rose had never seen one before, but either way, she was not happy about how things were going.  Rose had a panicked look on her face as she hopped up and down in her car seat, signing ‘off’ over and over again.  We tried to tell her it was OK but she wasn’t convinced. 

At one point we lost track of the third baboon, it was the smaller cute baby baboon according to Katie.  We had a moment when all the baboons were quiet and out of site until Katie spotted a small tail hanging down over our rear window.  We all turned to look just in time to see a small steady yellow stream running down the window.  This is, again, really funny stuff if you are nine or thirteen or any age over three and a half years old. 

Soon we made our way to the end of the baboon compound.  A park attendant holding a large bullwhip managed to scare the baboons off our car and send them scurrying back to the entrance looking for fresh cars to feed on. 

 We were back at our campsite by mid-afternoon.  Cheryl thought Rose still looked a little tired despite the lazy afternoon car ride and thought she might want a nap.  I took Rose for a twenty-minute stroller ride around the paved loop that ran through the campground.  She was asleep before I got back to our site.  Cheryl took Rose and laid her into her Lion King sleeping bag.  We talked for a few minutes about our plans for the evening.  Cheryl thought Rose might nap for a while so she agreed to sit at the campsite to keep Rose company while I took Erin and Katie to the pond for a swim.  After that, we thought we’d find somewhere to eat. 

So Erin, Katie and I headed off to the camp pond.  We had fun playing an underwater chase game that combined hide-and-seek and tag although I always seemed to be ‘it’.  We played for about an hour but it felt strange.  Normally, it seems like the five of us are always doing everything together, especially on vacation.  It wasn’t that unusual for Erin and Katie and I to swim in deep water without Rose but it was odd to not check back on the beach and see her playing in the sand or in the shallow water with her mom.  Now that Rose was napping again, we were splitting up and going in two different directions, at a time when we normally make a special effort to be together. 

We got back to our campsite at the agreed upon rendezvous time.  Rose had just woken up and she seemed refreshed, and in good mood.  We decided to do a little more sightseeing and get our first look at the New Jersey Atlantic Shore while we searched out a place for dinner.  We drove about 30 minutes east on Route 36.  The road had a familiar strip mall, stop and go feel to it but just as we got close to the shore we crested a hill and headed across a bridge into the town of Highlands.  It opened up a sweeping view of the five-mile long Sandy Hook Beach peninsula to the north with the New York City sky line stretched across the horizon and directly in front of us, to the east, were more long runs of beaches and the Atlantic ocean.  It was an impressive, quick glimpse of what we were hoping to explore over the next two days.  We were all excited as the view dropped out of site and we pulled onto the shoreline road. 

 We quickly spotted Gaitor’s, a family friendly looking restaurant, and pulled into take a chance on dinner.  The food was pretty typical family fare and everybody was able to find something to eat, including our finicky kids; Erin’s not eating red meat anymore, Katie, despite her threats to be adventurous sometime in the not too distant future, only eats variations of chicken McNuggets, and Rose has a wide range of two possible food items that are going to be a sure thing; either hotdogs or pasta and meat balls.  Drinks are the same, Erin and Katie we try to steer away from and kind of caffinated drink, believe me, they don’t need any extra energy.  This usually limits them to a Sprite or 7-up, or, if they are feeling especially daring, an occasional Shirley Temple.  Rose prefers milk and we prefer that it came in a covered cup with a straw.  She still drinks mostly through a straw and the covered cup buys us a generous amount of recovery time should she knock her drink over.  Although, I always find it amazing how much milk is still left in a cup that’s been knocked over if you stand it back up quickly enough.  It helps to be quick, that way there’s less spilled milk to cry over, or cleanup.  I guess I’ve done this a few too many times.  Anyway, dinner was relaxing; the restaurant was quiet, the waitress was attentive so we were able to have a comfortable dinner will within the combined range of all our attention spans. 

 As we were finishing up, the waitress offered us the use of the restaurant’s beach just across the road.  We talked about being interested in getting a view of the New York City skyline and she encouraged us to take a quick walk on the beach.  The sun was starting to set as we left Gaitor’s and made our way across the busy beach road. On the shoreline side of the road ran an impressive sea wall, made from large boulders piled over twenty feet high.  We pushed through the gate with the ‘Private Property – No Trespassing’ sign and climbed the wooden steps to the top of the wall.  The five of us squeezed onto the small wooden deck, our impromptu observation deck.  The wind was picking up, whipping down the beach out of the north, Cheryl and the girl’s long hair was blowing about.  It was exhilarating for all us.  Katie and Rose laughed at the thrill of it.  Our short climb up the stairs had given us a beautiful view of the shoreline with the narrow beach running south towards the horizon; the Atlantic waves were pounding on the beach almost at the foot of the beach side of our wooden stairway.  We turned to face into the steady wind looked across the grasslands of Sandy Hook to a wonderfully clear view of New York City just a dozen miles to the north.  The cool break in the weather had brought in clean crisp air and excellent visibility.  The skyline stood out, and with that, we could clearly see the tallest building, the Empire State Building standing sharply above all the others.  It was a bit sobering to get our first, in-person glimpses of this great city’s skyline and to know how much was missing.  Still, to stand on the shore of an ocean, with the sky lit by the setting sun, the wind blowing your hair back and the sound of the surf crashing in your ears is to have your spirit lifted.  The feeling of wellness of having your senses immersed in nature is an undeniable healing force and we could all feel it. 

There was an American flag on the back of the small deck and the wind had it standing straight out, it seemed like the perfect back drop for pictures of loved ones.  The deck was small and only three of us could squeeze into the camera frame at a time, Cheryl was holding Rose, Erin and Katie each jumped in for a picture.  Later, I looked back on these pictures, from all of our vacation photo’s, and realized that these are the last one’s that Rose showed a comfortable, happy smile.   

 We made it back to our campsite after dark.  With Erin and Katie’s help we set about the night time routine; first a trip to the bath house and then attempts to get the campfire lit.  A campfire is an essential part of the evening entertainment out under the stars, and to many gifted campers, the lighting and caring for a campfire comes easily, but sadly we are not one of those families.  Cheryl and I, as the adults in the family have struggled with this responsibility over the many years of our camping trips.  And this has always been a minor point of contention between.  I’ve always been in the lighter-fluid-camp, maybe it’s a little heavy-handed but it’s dependable.  Cheryl has moved into the more patient, natural approach she’d learned through her Girl Scout leader’s training during her years of working with Erin’s troop.  On this camping trip, the lighter fluid had been banished, so Cheryl, with some help from Erin and Katie, struggled to get a fire going.  I sat and watched with Rose sitting on my lap trying to remember if there were any stores open down the road that might have some kind of flammable liquid for sale.  Again, Rose dosed off early, by about 8:30.  I let her sleep for ten or fifteen minutes, enjoying the forgotten feeling of having a small child sleeping on my chest.  Eventually, convinced Rose was asleep for the night, I brought her into our tent and laid her into her sleeping bag.  I rejoined Cheryl, Erin and Katie at the fire ring. 

 We sat up for a few more hours, tending the struggling fire and talking about plans for the next day.  We earlier, had picked up some maps of Liberty Park, New Jersey, at the camp store. Now, we looked them over. Ferries ran frequently from Liberty Park to Ellis Island and the Statue of Liberty.    It looked to be just a shore ride from our campground, back onto the Garden State Parkway,  north to the New Jersey Turnpike, past Newark, off the connector and into Liberty Park.  It looked manageable.  Over the last few days, we had started to become familiar with this part of Northern New Jersey.  This trip looked like it was just a short hop off from the roads we’d been driving on the last few days.  It may seem like an insignificant thing but just getting ourselves, all five of us, to new places is no small task.  It seems like, these days, as parents, we are in a constant state of distraction dealing with Erin’s thirteen year old issues and attitude swings, watching nine year old Katie, following Erin’s lead, determined to grow up even faster and three year old Rose with all her nuances and issues.  I guess, when you add it all up, it’s pretty much like having three kids and we’re pretty much dealing with as many distractions as any other parents with three kids.  But still, the haze of distractions is there, to attempt to go someplace new is a brave undertaking, to think we can actually make it there with ease requires serious planning and bold confidence and to actually arrive, all in one piece, with minimal hassle, is justified cause for celebration. 

Wednesday – The Big Girl

We all woke the next day to another lazy tent camping morning.  Rose was up first again and happily crawled out of her sleeping bag so she could climb on top of Mom and Day.  She was definitely enjoying this new routine.   Rose climbed into the middle of our queen sized sleeping bag and we all cuddled for a while, talking about what we had done yesterday and what we were planning to do today.  Eventually, we climbed out of our tent and got started on a simple breakfast.  Katie soon followed.  Erin, with a teenager’s ability to sleep long into the morning, didn’t join us for quite a while. 

 That morning Rose signed ‘toilet’ so I took Rose for a walk over to the bathhouse.  It wasn’t far, just past one other campsite, and then past the small camp playground.  This was a walk that Rose should have had no problem with, especially combined with her insatiable curiosity about exploring new places.  But she seemed to take forever to cover the short distance. 

Anyway, we made it, she sat on the toilet for a few minutes and then signed, ‘all-done’, it was a false alarm.

In my best supportive parent’s voice, I ask Rose, “OK, are you sure you’re all-done, there’s no hurry”. 

Again Rose signed ‘all-done’ and said “Dah”. 

I reassured her as I helped her get down, “OK, good try.  That was a good try”.

On the way back, I tried to entice Rose in playing on the playscape.  It was about the right degree of difficulty for a three year old and Rose usually loves exploring new playscapes.  She’s all over the two playscapes at our neighbor hood park, both the little kids Tot-Lot and the big kids playscapes, even repeatedly attempting the big kids high steep slide even though she’s crashed hard twice on it.  She still wants to go down it but lately I’ve been talking her out of it.  My nerves can only take so much.  She may be a little thrill seeker but she needs to get bigger and stronger before I let her try that one again. 

But the camp playscape was low degree of difficulty, well within Rose’s climbing and sliding abilities.  I would have expected her to be all over it.  I tried to talk her into climbing up a few stairs on the platform but she showed no interest.  After a few attempts to persuade Rose, I tried to help her, I lifted her over the stairs and put her on the platform, but she just stood there, no interest in moving around at all.  I tried to talk Rose into.  After a minute I picked her back up and carried her to our campsite. 

I relayed the story to Cheryl and she commented on how she had noticed the same thing.  Rose seemed to have lost interest in moving around, instead of wandering around exploring or chasing after her big sisters, she seemed to more and more just stay where she was.  We both knew this was out of character for Rose, but didn’t quite know what to make of it.  Her appetite was off a little, but not a lot, she’s certainly had many swings in her appetite from one extreme to another as she’s gone through various minor illnesses.  She was sleeping OK, actually maybe too well, the extra napping and early bedtimes were out of character.  But we couldn’t tell if this added up to anything to be concerned about.  She didn’t show any signs of having a fever.  Rose’s mood and attitude was still fairly good, despite being a little slowed down by something, she seemed to be enjoying all the new sights and all the concentrated family time.  We were stumped.  We didn’t know what to make of it.  Rose wasn’t herself and yet she didn’t seem to be that sick.  In fact, we really couldn’t tell if she was sick at all. 

 Finally, we got ourselves organized and headed out on the road a little before noon time.  We drove about twenty minutes up the New Jersey Turnpike and made our way to Liberty State Park, only making one small wrong turn, and generally accomplished the trip with minimal aggravation, another little victory for the family with three kids.  We actually had a wonderful day. 

First we took a short walk through the south end of Liberty State Park and took in our first view of all the sites, across the wide New York Harbor we could see the Verazano-Narrows Bridge, the Statue of Liberty, Ellis Island, the south end of the Manhattan skyline and the Brooklyn Bridge. 

We drove to the north end of the park and bought our tickets for our ferry rides to Ellis Island and the Statue of Liberty.  Rose was in her umbrella stroller.  Hopefully, between stroller rides and ferry rides, Rose would have a low energy day and maybe be able to recover from whatever was bothering her.  We boarded the first ferry to Ellis Island.  We sat downstairs, close to the onboard refreshment stand so could grab a quick lunch of hotdogs and soda and water, except Erin, who had a non-red meat lunch item, otherwise known as a muffin. 

We got off on Ellis Island and began to look for evidence of our own family’s passage to this country.  Like many Americans, Cheryl and I are just two generations removed from a life in another country.  Both of us grew up listening to stories of our grandparent’s journeys to a new country and the start of a new life here.  We took some time exploring the exhibits on immigration set up in the main hall.  Erin logged into the Ellis Island database through one of the available computer terminals and found a record of my father’s father immigration from Ireland from over a hundred years ago.   

We walked around, exploring the grounds. On the north end of the island we found a park area with a lower encircling copper wall.  On the wall, we found the engraved names of Cheryl’s mother’s parents, immigrants from Poland from over 90 years ago.  It was a reminder that we were standing, with our children, where our grandparents had passed through when they first set foot into this country almost a century ago.

We found another nice picnic area with a spectacular view of the Statue of Liberty.  We composed a picture with Erin, Katie and Cheryl with the Statue and an open place for me to hold Rose as I set the camera for a timed shutter release.  I pushed the shutter, scooped up Rose and stepped into the picture.  The shutter clicked.  Everybody hit their smile, except for Rose.  We didn’t know it at this time, but she was out of smiles.   

 We caught the next ferry ride to the Statue of Liberty.  This time we all sat up on the open top deck with our backs towards the stern. We were treated to an impressive view of the New York Harbor all around us.  As we climbed off the ferry and onto the island, we walked down a pathway between two granite block buildings.  Ahead of us, framed by an archway we could see an American flag flying atop a tall flag pole in the center of a large brick plaza, it’s colors showing bright and strong on this beautiful August day.  Our stop on Ellis Island had been about tracing our own family’s first steps into America but here, in the shadow of the Statue of Liberty, walking on the brick pathways crowded with people from all over the world, we could feel that we were part of an American experience that includes the diverse influence from so many of the world’s cultures.  Listening to the voices and hearing our language spoken with so many different accents, I was reminded how our grandparents with their Irish brogue and Polish accents were drawn to this country by American possibilities and accepted into the American culture to start a new life and raise their new families.  Looking at our own children, and ourselves, with Cheryl’s Polish-ness and my Irish-ness mixed together we are very much a part of that American culture today.  Our ability and our willingness to openly accept people form diverse cultures will help welcome them and their future children and grandchildren.  Our open acceptance of people that we perceive to be different from us is our most positive contribution to our unique American culture. 

Looking at Erin and Katie growing up in out small Connecticut town, with friends and classmates from a wide array of world cultures, I see today’s American girls.  Seeing their natural open acceptance of a world much different than the one Cheryl and I grew up in, I see the promise for a better future. Looking at Rose,  so much like her older sisters plus one more chromosome, living in a world that amazes her and is amazed by her, that challenges her and accepts her, I see that promise being fulfilled and I see tomorrow’s American girl. 

 As we walked around the island’s perimeter pathways, we were very much taken in by the immenseness of the Statue of Liberty.  We struggled to frame pictures of our family with the close towering statue in the background.  Much to the girl’s amusement, I laid down on the walkway to get a picture looking up at them standing with their mom and Liberty’s torch held high above them.  Rose, was conflicted by this, she had to fight her strong urge to mimic.  If the photographer stands, sits, kneels or crouches, Rose instantly copies and assumes the same pose.  Only with enthusiastic and persistent persuasion from Cheryl, Erin and Katie did Rose agree to stand up even though I was laying flat on the brick walkway at her feet.  Cheryl took a more dignified approaching, kneeling to get a picture of myself with the three girls in front of the statue.  

As we were getting ready to leave the Statue end of the island Cheryl turned to Rose, “So, Rose, what do you think?  The Statue of Liberty is pretty big, yes?”

Rose looked at her mom in agreement, her eyes wide in her excited “O” face.  Her hands swung out flat, thumbs tucked into her palms – Big.  Her left hand closed and came up to her face, the tip of her thumb swept the side of her face – girl.

“That’s right, Rose,” Cheryl answered, “She is a big girl.”

 Later, while Cheryl took Erin and Katie to the gift shop, Rose and I sat on the edge of the large circular flag plaza.  After a few minutes, Rose struck up a quick play session with a little boy that happened by.  His mom told that they were from Germany, they were in the United States for a few months on a work visa.  Rose and the little boy played for a while, the fact that he didn’t speak English obviously didn’t get in the way, they were using the universal language of little kids at play.  For me, it was great to see Rose on her feet running around, ok not running, but walking fast and doing her best to imitate running.  It was an encouraging sign, it was the most energetic I had seen her play in over a week.

 One more ferry ride across the New York Harbor and then a short drive back down the Garden State Parkway to Manhattan and we were back at our campsite bye late afternoon.  Again, Rose took to our tent for a nap.  Staying with this week’s routine,  Cheryl stayed at our campsite to watch over Rose and I took Erin and Katie down to the pond for a swim and a quick hike.  The three of us were getting used to spending afternoons together.  After about two hours, we met back at the tents, Rose was just waking up, refreshed from her nap.   

 We all talked about plans for dinner and decided to head back onto Rte. 36 east and look for some place to eat in one the northern shore towns.  As I drove, Cheryl studied the maps and picked Keannesburg as a potential dinner site.  After a few minutes we pulled off Rte. 36 and drove down along the Keannesburg shore road past the largest, most sprawling, ramshackle, summer time, beach town amusement park we’d ever seen.  Never ones to pass up an opportunity to Erin and Katie were immediately sold on the place.  We decided to park and search out a family type place to eat, no easy task on a quiet Wednesday night in a small beach town in mid August.  Eventually, after some walking for us and strolling for Rose, we ended up sitting in a sidewalk café across the street from the amusement park.  Erin and Katie could barely contain themselves as they listened to the clatter of the roller coaster and the screams of thrills that went with it.  They were already having a great vacation and this was an unexpected bonus.  We finished dinner and headed across the street for an evening of searching out fun and excitement on bumper cars and roller coasters.  But this was mostly an evening of fun for her older sisters.  Rose didn’t seem happy about all the shrieks and clattering from the different rides.  She was almost inconsolable as she watched Erin and Mom ride the big roller coaster, no amount of reassurance could quiet her fears.  Only when Mom and Erin were safe back in Rose’s arms did she finally settle down. 

Rose herself almost made it on to one ride, but not quite.  This was more of a large scale beach-town amusement park probably aimed at teenagers on a summer night.  Rose had done well at our town’s summer carnival last summer riding a few kiddie rides but those were about the right size, or right thrill level for her.  This time, Rose came close to climbing on to a full size merry-go-round but backed off at the last second.

It was a relatively late night for us, after ten o’clock, when we finally pulled back into our dark campsite.  Surprisingly, Rose was still awake and pretty alert.  After the kids were all in their sleeping bags, Cheryl and I talked about the day’s adventures.  In particular, we both thought she seemed a little more energetic, a little more herself.  We hoped these were the first signs of Rose getting over whatever had been lingering on with her all we.  We thought we had paced our vacation week just right so far, and that the next day we’d be ready for a day under the sun and on the beach at Sandy Hook. 

Thursday – A Warm Ocean Swim

We all woke late again the next morning and took a few hours to go through our lazy morning camping routine before we started preparations for a day at the beach.  Late morning Cheryl packed the cooler with lunches and snacks.  Camp chairs and beach towels and sand toys were loaded into the van.  We all changed into our bathing suits and climbed in for the half hour car ride east the now familiar route 36.  It was another quiet, amiable ride.  On a vacation filled with daily car rides back and forth to our place of amusement for the day and most evenings searching our restaurants in new places we had racked up an unusually high number of hours with all five of us squeezed into the van.  But what was even more unusual was how well we had all been getting along, none of the normal sibling squabbling, none of the normal parental fraid nerves.  Maybe we were all feeling some of the effects of a fun, relaxing adventurous (for us) vacation. 

We pulled into the beach parking lot and unloaded all our gear.  With Erin and Katie’s help we made the short walk down the path through the dunes, struggling with armloads of blankets and chairs and one full cooler.  We were greeted with the site of a near ideal beach, clean sand with not too many rocks, a 3 to 4 foot rolling breakers perfect for body surfing, a not too crowded Thursday in August beach crowd and a bath house just off to our left within easy walking distance.  We set up our chairs and spread out our beach towels.  After a liberal application of sunscreen goop we all headed for the water’s edge and we were greeted with the warm waters of the Gulf Stream for the first time in our family’s life.  This was not the bone-chilling mid-50’s ocean water we had swam in off Cape Cod National Sea Shore last summer or off the beaches in southern Maine.  This was comfortable, mid-70, swim-all-day ocean water.  Erin and Katie were especially thrilled with the warm waters, and the slow breaking 3 to 4 foot waves.  They started on along afternoon of working on their body surfing technique and a constant search for the perfect waves.  Cheryl and I took turns alternating between playing with Rose on the water’s edge and swimming with Erin and Kate.  Rose enjoyed the splash of the waves sliding out to the edge of the sand.   

The afternoon was getting on.  I had just enjoyed one selfishly long body surfing session with Erin and Kate.  As I stood up after a surfing run and realized that in our quest for that elusive better wave we had worked our way about a hundred yards down the beach.  Katie was standing along side me, Erin was about 10 yards closer to the beach, having just out distanced us again.

“Erin, Katie,” I called, “We’re pretty far down the beach.  Let’s try to get back closer to our towels.” 

They both looked back up the beach, trying to locate our spot on the beach.  They could see we were further apart, more spread our then we’d been all day.  “OK, Dad,” they answered as we headed back. 

As we waded and swam our way back up the beach through the ocean surf, I could see that Cheryl and Rose were no longer playing on the edge of the surf.  As we got closer I could see Cheryl sitting in one of our camping chairs near our beach towels.  “Erin, Kate,” I said, “You can see our towels? You can see Mom?”

 “Yeah,” they answered

 “OK, make sure you swim right here.  Don’t let yourself go down the beach.  Erin, stay with Kate. OK? 

“Sure Dad,” she answered with her confident girl in charge voice. 

I took the short walk up the beach slope to where Cheryl sat with Rose cuddled on her lap, a beach towel thrown over her for shade.  As I approached Cheryl gave me our old silent hand signal, a hand modeling sleepy eyes closing.  Cheryl lifted the towel to show Rose curled on her chest, fast asleep.  

“She’s been sleeping for a little while,” Cheryl whispered, “She’s wiped out.”  She put the towel back down to shield Rose from the sun.  “I think she’s dehydrated.  She threw up before.” 

“She threw up?” 

“Yeah, I took her to the bathroom before, she said she wanted to drink some water as the water fountain but I don’t think she drank that much.  She hasn’t really been drinking that much all day.  I couldn’t get her to drink much of her juice at lunch time either.’ 

“Well, what do you think we should do?  Pack up? Head back?”  The beach was starting to change.  Stretching out our stay to steal a few more surfing runs was starting to feel a bit frivolous, a bit selfish.  The hot August sun reflecting off the beach sand was starting to feel a little less friendly a little more than Rose could endure. 

“Yeah, I think we should,” Cheryl answered. 

 Rose perked up a little on the ride back to our campsite but she still crashed for one more late afternoon nap with Mom in the tent.  Erin, Kate and I visited the camp pond for our now routine swim and a quick hike.  Back at camp, we met up with Cheryl and a waking up Rose. 

After a brief discussion, we decided on a quick dinner at the Papa Gino’s just down the road from our campground.  We were hoping to get back early for a quiet, low-key evening around the campfire.  Dinner felt familiar with the five of us squeezed into the booth, Rose sat on the bench seat between Mom and Erin, Katie and I sat across from them.  3-year-old inquisitiveness had started to out-quick our ability to keep breakable and spill able things out of her reach.  Rose ended up at the end of the table sitting in the standard restaurant issue wooden high chair, just before the food arrived, just like almost always happens. 

The waitress greeted us quickly and we each ordered our dinners in turn, we’ve learned that a successful dinner out requires us to have food in front of us as soon possible, the less downtime, the less time available for some kind of imaginative behavior from one of the girls and the less Cheryl and I have to dig into our, at times somewhat limited supply of parental patience.  Cheryl and Erin ordered a cheese pizza, Katie ordered the same thing she always does, “Chicken McNuggets.”  Even though we hardly ever eat at McDonald’s this title has stuck with her and she uses it regardless of the restaurant we’re actually eating at.  Cheryl had checked the kid’s menu and spotted two of Rose’s favorite meals, “Rose, what do you want to eat?  Hot dog or pasta and meat balls?” 

Rose thought about it for a second and then answered with her hands, left hand pinching the skin between her right hand’s thumb and index finger. 

“Meat”, we echoed nearly in unison. 

Next Rose’s two hands formed a ball shape in front of her.  “Ball.”  Then Rose’s two thumbs, not pinkies, pointed together and then swept apart.  “Pasta”

“Pasta and meat balls?”  Cheryl repeated. 

“Yeah!”  Rose answered in her sweet voice.

“OK, Rose, what do you want to drink?  Tell the waitress.”

Rose’s left hand reached out in front of her, squeezing open and closed, she turned to look up and watch the waitress’s reaction.

“Milk” we echoed. 

The waitress nodded and scribbled another entry on her pad. 

In an aside, Cheryl asked, “Do you have a covered cup with a straw for the milk?” 

“Oh yeah,” the waitress answered, “The drinks come like that with the kids meals.” 

This is a pretty comfortable routine for the five of us have developed during our almost weekly dinners out.  Usually its Friday night at Giovanni’s the local Italian family-style restaurant.  Often, we’ll have the same waiter or waitress for several visits in a now and like waiters and waitresses with regular customers everywhere they’ll quickly pick up on our routine and habits, from Katie always ordering “Chicken McNuggets” to Rose’s unique way of communicating.  We’ve never had a negative experience.  I don’t believe this is because we’ve had a lucky run, I believe this is because people are basically open and accepting.  Often, after a few weeks of the same waitperson, they’ll start to focus more on Rose’s responses, asking her themselves, relying les on our prompts and echoed answers.  And then they’d leave with our orders and a few casual words for Rose, “OK, Rose.  I’ll go put your dinner orders in now.”  Rose would touch her left hand’s fingertips to her chin and then wave her hand down and out, ‘Thanks.’ 

This dinner went well, too.  The food arrived warm and quick and we were all hungry from our day at the beach.  Rose, too, seemed to have bounced back from whatever had been bothering her.  Her on-again off-again appetite was definitely on.  She ate most of her meatballs and pasta and took several long drinks of her cold milk.  We were a little relieved to see Rose getting her appetite back after her rough afternoon at the beach.  We are always looking at Rose, trying to judge her moods, whether she’s starting to come down with something or whether she’s starting to show the first signs of recovering.  In many ways, I’m sure it’s similar to the monitoring we did and still do with Erin and Katie, it’s the normal parental process of trying to make constant minor adjustments to aid the child’s development.  But admittedly, with Rose, and with all her aspects that are very much like any other child, there can a be a different spin on things brought on by her unique expression of that extra chromosome.  That can be had to interpret and sometimes misinterpreted by her parents. 

Back at the campsite we settled into another evening of watching the campfire or, in our family’s case, struggling to produce a campfire that we could watch.  We pulled our camp chairs, four full size adult chairs and one child size chair, into a circle around the loosely positioned stones of the fire ring.  I sat with Rose in my lap, both of us more that a little fried from the long vacation day.  We watched as Cheryl and Erin and Katie worked to bring our fire to life.  Cheryl had stacked the logs in the center of the fire ring.  Her initial attempts at ignition had met with only a smoldering success.  Erin and Katie were scavenging the woods around our camp for fallen dead wood to use as kindling. 

My love contribution was to shout warnings, “Do you kids know what poison ivy looks like?” 

“Yes, Dad,” came back the answer, more than a little patronizing.

“Well, it’s getting dark.  It’s hard to see.  You need to be careful.” 

This last piece of wisdom was quietly ignored as they searched for more fallen twigs.  Erin came back to the fire ring with the first pile of kindling.  “Mom let me do that.  I can get it started.” 

Rose and I left for the bathhouse as Erin and Cheryl debated fire-starting strategies.  It was my normal responsibility to help Rose through her getting ready for bed routine, just as it had been with her two older sisters.  The bathroom, hand and face washing and tooth brushing routine took about ten minutes.  By the time we got back to the campsite we were greeted with an almost roaring campfire. 

“Dad!” Katie called with pride “Erin did it!” 

I looked into the fire ring, flames were climbing over the logs and a bed of red-hot coals was starting to collect at the bottom of the blaze.  I could tell that this was a serious, well-established campfire.  Erin crouched next to the fire, patiently feeding in more dried sticks. 

“Wow, Erin,” I said with genuine surprise “Nice job.  That looks great.  How’d you learn to do that?” 

“We made campfires every night at camp this year.  We had to do them ourselves so by the end of the week we were getting pretty good.”   

I can’t emphasize enough the importance of a good campfire, it’s the source of the evening’s entertainment, and it provides everything from the basic source of light, to the heat necessary to melt marsh mallows.  The firelights relaxing out of our ordinary routine beauty also provides the inspiration for many casual conversations.  There is something about a sitting around campfire that insulates you from the normal distractions of everyday life and allows for relaxed conversations to start to flow.  Rose also has shown her appreciation for the beauty of a campfire.  She saw her first camp fire about two years ago when she was just 16 months old and on her first camping trip and we could tell it made quite an impression on her.  Last summer, with Rose’s expanding signing abilities, together with more exciting camping trips, provided her with the incentive to learn and express herself.  Even days or weeks after those camping trips Rose would be recalling the fun to us.  She would excitedly sign to us, ‘tent-more’ and ‘fire-more’. 

And we’d answer, “Yeah, the camping was fun.  You liked the fire, Yeah, we’re going to be going again, Rose.”  Saying all of the words and signing the ones we knew.  This camping trip, Rose was enjoying more evening campfires.  She might have been feeling a little sick and not up to her usual energy level but she was still excited.  Rose sat on her mom’s lap as she took in the sight, at first leaning back into her mom to enjoy a nurturing healing cuddle as she did for hours on the beach in the afternoon.

Now, with the cool evening air and the benefit of her afternoon naps, Rose seemed to get some of her energy back.  Rose sat up straight leaned forward and rested her elbows on her mom’s knees.  Her two hands came together, palms up, fingers pointing up and wiggling like flames – fire.  Rose leaned down, looked through her wiggling fingers at the fire.  The flames from the fire lit her happy, excited face.   

Rose started to doze off early again. There would be no repeat of yesterday’s late night.  I carried her back to our tent and tucked the soundly sleeping Rose into her sleeping bag.  I  met Cheryl on the short walk back.  We started to talk as Erin and Katie continued to hover over and tend the fire.  We were struggling to understand Rose and her behavior over the last few days.  On many evenings, Cheryl and I will fall into discussions on our children’s lives, trying to understand what was happening, trying to determine what’s the best thing we, as their parents need to do or can do.  Sometimes it’s about Erin and her teenager issues, sometimes it’s about Katie and her manic artist personality but more times than not, it’s about Rose and her sometimes ordinary, sometimes unique nuances.  Over the last few days, it was clear that Erin and Katie were enjoying a dream vacation.  Tonight’s discussion was all about Rose.

“How do you think Rose is doing?”

“I don’t know. I’m not sure.”

“What was with that throwing up on the beach?”

“I don’t know, maybe she was dehydrated.  She seemed to be better tonight.”

“Yeah, she did but she still doesn’t seem to be over whatever she’s got.”

“She’s just not moving around much.  I mean she just stays where we put her.  On our other camping trips she was always off exploring or chasing after the other kids.  I mean, you know, I can remember spending a lot of time chasing after her.  She used to wear me out.”

“Well, maybe she’s changing.  Kids change.  Maybe she’s changing.  Maybe she’s just not interested in playing anymore.”

“Do you think so.”

“I don’t know.”

“Yeah, I’m not sure either.”

We hesitated, considered the two possibilities.

“It just seems like a big change if it’s just her personality.”

“Yeah, I don’t think so.  It seems like there’s been a few other times we thought it was behavioral and it always turned out to be a health issue.”

“Yeah, I guess so.”

“Yeah, I don’t know.”

“Did you notice anything funny about her breathing today?”

“Breathing?”

“Yeah, it sounded like she was taking really short, rapid breaths with kind of a huh-huh sound.”

“Yeah, I did.  It has to be pretty quiet to hear it.  I heard her doing that when she was sitting at the campfire.”

“She was doing it on the beach today too.”

“That’s new.  Do you know what that is?”

“I don’t know.”

“I don’t know either.  I don’t know.”

“When did that start?  Is that just today?”

“Yeah, I just heard her doing it today.”

“I don’t know what that is.”

“It just seems like, whatever it is, she’s not getting over it.  If anything, it seems like she might be getting a little worse.”

“Do you think we should call the doctor’s office?  Try to get an appointment for tomorrow afternoon?  Is this the kind of thing we call about?  It still seems pretty vague.”

We both thought about it for a second.  It’s a decision we’ve had to weigh many times.  Does Rose really need to go to the doctor’s office?  Is she going to wake up tomorrow and feel fine?  Is this just something new that we weren’t aware of that she’d just have to live with?  Are we being a nuisance?  Or is this something that’s easily treated?  Something that the doctor can spot quickly and provide immediate relief?  If we delay do we prolong Rose’s discomfort?  We considered the question and decided.

“Yeah, I really think we should.  Tomorrow’s Friday, we might as well go in tomorrow.  Let’s not wait until Monday and worry about it over the whole weekend.”

“Well, we have to pack everything up tomorrow morning.  That’ll take about an hour or more.  If we can wake up at a reasonable hour and get moving we should be able to get on the road by eleven.”

“We should be past New York well before rush hour.  That should be no problem.”

“OK, we’ll be back in Connecticut by mid-afternoon.  That should work out.  We can call on the cell phone when we get close and try to get an appointment.  They’re open till five.  We should be able to make it.”

Cheryl and I headed back to join Erin and Katie around the campfire.  We were feeling a little relieved with our discussion and our decision.  With Erin and Katie, when they were sick at three years old, it was much more obvious.  When they were sick, we knew it.  When they got better, they jumped right back into running and playing.  It was a fast dramatic change.  It seems with Rose, we spend a great deal more time in a wide gray fuzzy zone of parental uncertainty.  We feel our way along.  Has some minor illness dragged on too long or is Rose just getting a little cranky?  Are we seeing Rose’s true personality or are her actions influenced by something that’s making her physically uncomfortable.  I think back to the last winter and Rose’s long series of colds and sinus infections.  I can remember Cheryl and I having countless discussions then like this one just outside the campfire light.  As much as the signing has helped, as expressive as Rose is both verbally and with her body language, like with any young child and maybe more so with Rose, it can be very difficult at times to discern her true feelings.  But what’s carried us through, before and now, is just a basic belief in the goodness of Rose’s true self.  As Rose’s parents, we have a view of her life that stretches over the daily ups and downs across the few years of her young life.  Rose has shown us again and again the goodness at the core of herself and her strong urge to thrive.  Her spirit is strong and good and we are learning to listen to her.  This night, we needed to be reminded of that and let the memory of the goodness of Rose influenced our decision, and gave us a small nudge we needed to make the right decision at the right time. It was the touch we needed and it came from Rose and it left us feeling better for it. 

Cheryl and I sat up with Erin and Katie until the last log had been loaded on the fire.  We started to reminisce  about all we had seen and done, the Safari Park, the Statue of Liberty, the amusement park at Keannesburg, the day at Sandy Hook Beach, and even the campfires.  We had seen a lot of new sights, and had a lot of new experiences.  As a family, we had traveled down new roads and shared these experiences and it had gone well.  None of the normal petty squabbles, no over-riding distractions had gotten in the way.  A family peace had extended, uninterrupted throughout our vacation week.  We had honesty enjoyed ourselves and each other’s company very much.   

Friday - Starting Home

We woke the next morning to the pitter patter of Rose’s little feet or, more accurately, the digs from her sharp elbows and knees as she climbed over Cheryl and me to snuggle between us in our sleeping bag.  Rose was refreshed from other deep night’s sleep and was in a playful mood.  Sharing a tent with Mom and Dad was still a special treat for her. 

The day was more of the same beautiful dry perfect August weather we had enjoyed since the thunder storms had rolled through on Monday night.  It was maybe a few degrees warmer that Thursday but nothing like the heat and humidity we had fought through as we set up camp on Monday.  We worked together well as we packed up all our gear and loaded the van.  Erin and Katie alternated between watching Rose and helping to pack.  Rose was still more sedentary than normal but seemed to be in a good mood.  After the last sleeping bag had been rolled up, the tents taken down and all sorts of camping peripheral gear had been stowed in the van.  I stopped to take in one last view of our campsite.  Much of this story I have pointed with much more fore boding then we were feeling ourselves at the time.  Something was bothering Rose, we knew it, but we had talked about and come to terms with it, like we had many other times, or at least we thought so.  Parental talks like that are as much of our lives as late night discussions about whether Katie should play another year of violin or not, how to best handle Erin’s passage into teen hood.  It fits into our lives as just another part of being parents to three girls.  Sometimes it comes easy to us, sometimes it’s a struggle but it’s just part of our daily lives.  I felt it was important to openly recognize how well the vacation had gone, how much we had enjoyed each others company.  I’ve learned in the last few years to really appreciate and acknowledge the good life experiences when you have them.  They are not to be taken for granted, they are to be celebrated. 

To know one in particular, and to everyone I announced, “You know, this has been our best camping vacation ever!”  Katie and Erin stopped to stare at me.  Cheryl was helping Rose into the car seat. She stopped to look up.

“Really,” I went on, “This has been a lot of fun.”

“Dad!” Katie cut in.  “Stop it you’re going to jinx us!”

“Oh, come on, seriously,” I said.

“The weather was great.  We did a lot of neat stuff.  This had to be our best camping trip ever!”

“Dad!  Come on, cut it out.”  Erin chimed in.  “We’re not home yet, you know.”

“Yeah, Dad,”  Katie, the actress was starting to enjoy herself.  “Don’t say that you don’t know what could happen.”

We were laughing and enjoying our little drama as we climbed into the van.  Cheryl was shaking her head at our play-acting.  But now, I don’t know, maybe the girls just have a better sense of the unexpected than I do. 

We did make good time on the drive back.  Traffic was light on the Garden State Parkway as we headed North.  Rose soon dozed off in her car seat for what was becoming another one of her regular naps.  The car was quiet, Cheryl sat in the front passenger seat reading Marvin Levin’s “One Mind at a Time.”  I was driving over the now familiar roads, no need for direction assistance.  The three girls were crowded into the bench seat behind us again.  Erin sat behind Cheryl reading a book.  Rose was in the middle sleeping in her car seat.  And Katie sat behind me, listening to music on her CD player through her head phones.  Behind them, where the third bench seat had been, all our camping gear was packed again, piled almost high enough to block the view out the rear window.  The car was quiet and we did what all families returning from vacation do when the car is quiet.  We drove, just put our heads down and drove, trying to gain as many miles as we could on the journey home.  The desire for the simple satisfaction of returning home was starting to grow strong. 

We were late for lunch and long overdue for a bathroom break when we finally pulled into the rest stop off of I-84 in Danbury.  New Jersey and New York were behind us and we were back in Connecticut.  Rose had woken from her car seat nap about a half an hour earlier.  She seemed uncomfortable and restless.  Erin had communicated to us a more specific discomfort, we had been in the car for over two hours and she needed a bathroom break.  We had been disappointed when we had driven past one closed rest stop just over the border in New York.  Rose was getting restless, she seemed uncomfortable and was fidgeting in her car seat.  Erin was getting almost equally uncomfortable, feeling the pressure build in her bladder.  We had driven another twenty minutes before we pulled into the rest stop in Danbury.  We parked under some trees near a small picnic area.  Cheryl took Erin and Katie to find the bathrooms.  Rose and I sat at a shaded table and started on the lunch that Cheryl had packed that morning.  I had carried Rose from the car to the picnic table bench, Rose had shown no interest in making the short walk on her own.  She showed the same lack of interest in her lunch, hardly touching the juice and yogurt I offered her.  She wasn’t interested in eating a big lunch. 

Rose held her right arm up and touched her left hand to her right elbow, even as tired as she was it was still a quick fluid motion, fish.

 “Cracker,” I said. 

Rose waved her left hand across in her in a swimming motion, cracker. 

“Fish,” I answered, “You want gold fish cracker.”

Rose looked at me with a tired, resigned expression on her face.  She may have just signed ‘cracker-fish’ but she meant a lot more than that.  She meant stop bothering her with food that she had no interest in.  She wanted her comfort food, Pepperidge Farms Gold Fish cracker.  I could see how tired she was and I didn’t have the heart to push her. 

I sighed as I pulled out the foil bag and poured out a small handful of crackers, “OK, Rose.  Here you go.”  Rose was quietly munching on a gold fish cracker when Cheryl came walking back with Erin and Katie.  It was my turn for a bathroom break but first Cheryl and I shared a quick report.

“How’s Rose doing?  Did she eat any of her lunch?”

“Hardly anything, I couldn’t really get her to eat anything except crackers.  She just didn’t seem interested.”  I was mildly confused.  Even after napping for almost two hours in the car Rose still didn’t have any energy.

“Well, I’ll see how she’s doing.  Maybe she’ll want to drink something.”

I was gone more than ten minutes.  The men’s bathroom was closed for repair.  A long impatient line of men and boys lead to a single portable toilet parked out behind the visitor information center.  All the males there that day had the opportunity to experience the long bathroom wait unusually unique to females.  When I returned to our picnic table Erin and Katie were sitting on one side of the picnic table finishing their sandwiches.  Cheryl was sitting on the other side with Rose in her lap.  Rose looked tired, leaning into her Mom attempting to cuddle some comfort.

“How’s it going?” I called.

“Rose threw up.”  Cheryl answered in a tired matter of fact way.

“What?”

“She threw up.”

“Oh, geez. How is she now?”

“I don’t know.  She seems a little better but she still seems pretty tired.  And she’s still doing that huh-huh-huh breathing.”

We were a little more confused and concerned as we all climbed back into the van but our resolve to call the doctor’s office was firm now.  Cheryl decided to switch seats with Erin so she could sit right next to Rose to comfort her and to keep a closer eye on her.  Erin had a front seat with me as we made our way back onto I-84 for what should have been a little more than a one hour ride.  We lived in Connecticut all our lives and we’ve driven on I-84 often but it was usually of the weekends to visit relatives for family get togethers.  We’ve never experienced rush hour traffic on I-84, particularly on a Friday afternoon.  More experienced travelers have told us since then that you don’t want to be on I-84 through western Connecticut during rush hour.  It’s to be avoided.  The heavy traffic tie ups and delays and the accidents are infamous. But not to us, this was something we were going to have to learn for ourselves firsthand, the hard way.

 Cheryl called Rose’s family doctor’s office to try to schedule an appointment.  After a brief discussion with the receptionist Cheryl was put through to Maureen, a nurse that remembered Rose and Cheryl well from their many visits.  Maureen listened to Cheryl’s listing of Rose’s symptoms; increasingly tired over the last week or so, low energy, taking more naps and how Rose had thrown up yesterday and today and also, how Rose had started breathing funny, with the short, quick huh-huh-huh sound, since yesterday.  Maureen took all the information down and went to consult with one of the doctors.  After a few minutes, she was back on the phone with Cheryl; she had spoken with Dr. Harris, he had agreed that we should come in to be checked out and he had made time on his schedule for a 3:30 visit.  Cheryl thanked Maureen and told her that we were still on our way back from vacation but we were getting close to home and she thought we’d be able to make the appointment. 

Cheryl hung up the phone and relayed the conversation to me.  We talked over the travel time calculations; it was 1:30 now, we thought we’d be home in a little over an hour, we’d be able to drop Erin and Katie off at home and then the two of us could take Rose to her 3:30 appointment.  It seemed like a good plan and it seemed like we were all set. 

Soon after the phone call we hit our first traffic jam.  Traffic slowed down, came to a crawl and then a complete stop.  We started and stopped countless times before traffic cleared up and we were back up to normal highway speeds.  We had seen no evidence of car accidents or highway construction.  The heavy rush hour traffic and the narrow winding turns of I-84 were enough to produce the random traffic jams.  Just as soon as we were free of one tie-up, we’d enjoy just a few miles of normal travel before we were slowed again.

 We crawled past Waterbury through another series of slow downs.  We were losing time against our 3:30 deadline.  Cheryl pulled out our map of Connecticut and began to search for and alternate route.  “I think we’re coming up on I-691.  We could take that over to I-91 and take I-91 North home.” 

“Really? Is it much out of our way?”

“It’s not too bad.  It’s a little bit longer distance-wise but there might be less traffic.  We might make better time.” 

“Hmm, yeah, I don’t know, I’m not that familiar with that way.”  The traveler’s choice, there were two roads we could go by but what lay down each road was unknown.  I had a vision of my numerous, usually unsuccessful attempts to choose the fastest moving lane in all of our traffic jams.  “Let’s see how it looks when we get closer to I-691.” 

A few miles before the exit approaching quickly on our right, there was nothing but clear driving as far as the eye could see.  The choice was to go right and take our chances on new unfamiliar roads or stay left and take the most direct route home.  We tried to go with the sure thing.  We sped past the exit still heading northeast on I-84. We had a few miles of good travel before we started to hit the mid-afternoon rush hour traffic outside of Hartford.  The same pattern of slow downs, and speed ups until we settled into a slow crawl, mixed in with occasional full stops.  We were still making progress but the trip was taking a lot longer then we had expected, almost an hour longer than we had expected.

“You know, we might be cutting this pretty close.  I don’t think we’re going to have time to stop home and drop Erin and Katie off.  I’m going to call the office and tell them we could be late.” Cheryl said. 

“Ok,” I agreed.  I was busy concentrating on the traffic a head of us, watching the movements of the car ahead of us and the one ahead of them, so I could react to the frequent sudden stops. 

Cheryl was off the phone again, “Yeah, I talked to the office, they’re open till five.  They’ll wait for us until then.”

I started to think of the trip that lay ahead of us.  We were almost through Hartford now.  We’d get on I-91 North and be able to pull into the HOV, High Occupancy Vehicle lane with the five of us we more than qualified for the two passenger minimum.  Traffic should have been a lot better then and then we’d be able to make good time on the rest of the trip to Rose’s Doctor’s office.  We just were entering the long, exit-only lane that lead to the dramatic fly over exit ramp for 91 North.  I visualized our van climbing the hill up the ramp, I could almost feel the relief from finally being free of all the traffic on I-84, I could see the familiar view of the Connecticut River below as we would turn north and head for home.

 “Rose threw up!!” Katie’s cry broke my day dream.” 

“Ok, settle down,” came Cheryl’s calming voice. 

“But she threw up on me!” 

Erin turned to look into the scene in the back seat, “Geez.”  She could see throw up all over Rose and Katie’s side of her car seat. 

“Ok, Katie, get the paper towels in back,” Cheryl said. 

“But Mom, I’ll have to take my seat belt off.”  A life time of seat belt awareness training is not easily ignored. 

“That’s all right.  Just be quick about it.” 

Katie undid her seat belt and climbed over the back of the seat onto our camping gear.  She spotted the roll of paper towels, grabbed them and dropped back into her seat.

“Thanks Kate,” Cheryl pulled off a handful of paper towels and started to clean Rose off.  She undid her own car seat belt so she could reach around better to quickly clean up.

“Geez! This is a real mess.  I just can’t reach.  It’s really all over everything.  Chris, I’m going to have to take her out of her car seat to clean her up.  Do you think its ok?”

“Uhhh….” I tried to seriously consider the question but I was on overload, an hour of stop and go traffic, and now Rose throwing up again.  Well, I didn’t want Rose sitting in her own vomit.  I knew it wasn’t safe to have Rose out of her car seat but if Cheryl was quick enough she would be safely secured in no time, before anything could happen.  And what could happen anyway?  You take changes because you honestly don’t think they are chances, you don’t think that anything bad can happen to you or your family.  “Yeah, sure, go ahead.” 

I went back to driving but I was thinking about Rose throwing up twice now today and once yesterday.  Something wasn’t right.  This was starting to pile up.  What was going on?  We just needed to get to the doctor’s office.  Maybe they’d have some answers.  Back to the road.  Traffic had been moving along.  I tried to refocus on the line of cars in front of us.  A small red subcompact.  We were closing the gap too fast.  I leaned hard on the brakes, the wheels locked up.  Traffic ahead of us was stopped completely. I had lost control.  We weren’t going to stop in time.

 “JESUS CHRIST!!!” I shouted.  We slid silently across the remaining gap, no sound of squealing tires, no sound of voices in our van.  Not believing this could happen.  We crunched hard into the red car.  It shot forward from the force of our impact.  Our van shot back.  We came to rest about two car lengths apart. 

Erin, in the front passenger seat, had a clear view of her first car accident.  Before her teenage-sharp athletic reflexes had a chance to react she felt the seat belt tighten and slap her back hard into her seat with an impossibly strong force.  Her shoulder hurt from the impact of the seat belt. 

Katie had been watching her mom try to clean Rose up.  In all the excitement she had forgotten to put her seat belt back on.  At my shout she looked up but didn’t understand what she was seeing.  The impact of the crash threw her off her seat, she raised her arms to protect herself too late and plowed face first into the back of the driver’s seat, my seat. 

When I shouted, Cheryl was sitting with Rose on her lap.  She looked up and knew instantly what was happening.  My shout. The red card too close.  Our van going too fast.  A mother’s reflex to protect.  Cheryl scooped Rose up , wrapping her into her arms the way she held baby Rose a thousand times, one arm reaching along Rose's back to hold her head, her other arm laid along side, her hand holding Rose's small bottom.  She pulled Rose into her and tried to twist away from the accident as the impact lifted both of them off  their seat and threw them into the back of the front passenger’s seat, Erin’s seat.  Cheryl tried to shield Rose, her right elbow, shoulder and head banged hard as she drove into the seat in font of her. 

Our car rocked to a halt.  All seemed quiet.  I was stunned, too confused to even swear coherently.  How did this happen? How were we ever going to get off this highway?  How were we ever going to meet Rose’s deadline?  All I had to do was get us another mile onto the exit ramp but I hadn’t even been able to do that.  I pounded on the steering wheel. “I don’t believe it!! I don’t believe it!!!”   

Still Friday ~ Breaking Up

“Chris, calm down, we’re ok.” Cheryl said.

I took a deep breath and did try to calm myself.  I turned to look at Erin, she was sitting bolt up right, a shocked look on her face. She was gingerly pulling on her shoulder belt.  Thankfully, the air bags had not gone off.  We didn’t have to learn how Erin’s slender, barely five foot tall, frame would have with stood that extra impact. 

“Erin, how are you?” I asked. 

“I’m fine.” She was quiet, stunned.

I turned back to look a Cheryl.  My mind was too confused and too slow to have even imagined the worst. “How are you?  How is Rose?” 

Rose was sitting quietly on her mom’s lap, looking back at me with a blank, tired expression.  She looked untouched by the accident, by any of the excitement

“I’m fine. I’m OK. I think she’s OK,” Cheryl said.

I turned to look for Katie, right behind me.  She was sitting back in her seat.  “Katie, are you OK?”

“I’m fine, I’m fine.”  She looked hyper-manic, ready to run somewhere or nowhere.  She still wasn’t sure what happened but she was all right. 

Somehow we were all okay, thankfully, just our van was broken.  The hood was crunched up and our radiator fluid was draining onto the highway in front of us.  We started to settle down relieved to not be hurt but still nervous about being stuck in the middle of a busy interstate.  On this congested stretch of the highway there was no break down lane.  Our van and the red car still in front of us fully blocked the right hand lane that led to the I-91 North exit ramp.   As soon as we were aware enough to look around outside the car we noticed that traffic was some how managing to flowing fast and free around our new accident.  Whatever had caused the initial tie-up was gone.  I called the accident in on our cell phone.

“You know,” Cheryl said, “What time is it now?  I don’t think we’re going to make the 3:30.”

“It’s 3:15 now.”  I thought about our broken van.  I couldn’t imagine how we were going to get off the highway anytime soon.  We were only five miles from home, Rose’s pediatrician was just a few miles beyond that, but we were stuck now, we wouldn’t be able to get anywhere without help.  “Let me try to call somebody.”  Cheryl and I both had family near by.  Hopefully somebody would be able to come get us.  My father lived just a mile away from our broken van, my brother Joe worked 2 exits back up the highway, Cheryl’s brother Kenny lived in our town just three blocks from our house.  I gave them each a call, hoping to reach somebody but left only vague nervous messages on answering machines.  I didn’t want to leave too much information, hoping to not needlessly worry anybody, but I was incapable of leaving a calm message.  I couldn’t remember my own cell phone number.  Erin would have to shout it into the phone for me.  I would start, “Please call us at ____.”  I would hold the phone to Erin and she would call out our cell phone number.  I’d take the phone back and finish with a “Thanks.”

“Yeah, we’re not going to make it.”  Cheryl sad, “You should call the office and tell them.  Hopefully, they’ll wait.”

 “Alright, I’ll call.”  Another phone number on my short list of memorized numbers.  “Hello, my wife was just talking to you about my daughter Rose’s 3:30 appointment.  Well, we’ve been in a car accident; actually we’re still in a car accident….” 

I went on for a while trying to explain our situation.  I was straining to hear and be heard above the noise of the passing traffic.  In my attempts to hold the cell phone close I inadvertently pressed the call end button.  “Oh man, I think I hung up.”  The van was broken, the air conditioning was off, we were starting to feel the heat of the hot afternoon sun and I couldn’t even make a phone call.  I was losing what little patience I had left.

“What happened?”  Cheryl asked. 

“Hello. How is everybody?” State Trooper Domijan, was at my open window.  His wide brim trooper’s hat shielded his eyes from the hot afternoon sun.   “Is anybody hurt?”

“Uh, yeah, no, uh, we’re ok.” I said, “Well, my daughter’s sick but it’s not from the accident.  She’s been getting sick for the last day or so.”  I was rambling, trying to explain.  What was the officer thinking?  We were sitting there with our van full of camping gear and Erin and Katie’s bikes on the bike rack on the back.  “We were on vacation but we’re trying to get her to a doctor’s appointment.”  This sounded absurd.

Trooper Domijan’s manner was calm, professional and reassuring, “Does she need an ambulance?” 

“Oh no, I don’t think she needs an ambulance.  She’s just sick, she threw up.  I mean we’re just trying to get her to her regular family doctor.” 

“Well, if you need to I can call one.  It might take a little while to get here but we could do that if you think we need to.” 

“Oh, alright, but, no I don’t think so.” The thought of Rose leaving us in an ambulance was more than I could bear.  She couldn’t really be that sick? 

 “Ok,” He left our car to oversee the accident scene.  His car was parked protectively behind ours, half out into the next lane, shielding us from on coming traffic.  A large yellow DOT Highway Maintenance truck with a rear-mounted crash barrier was pulling up behind his car and tow trucks were arriving trying to position them to remove the disabled cars. 

“I’m going to call the office back.”  I told Cheryl.  I dialed the number, the receptionist picked up.  “Hi, we got cut off.  I was calling about my daughter Rose’s appointment.” 

“Hold on a minute,” she cut in, “Let me get the nurse.” 

After a minute, “Hi, this is Maureen.  Did I hear you were in an accident?” 

“Uh, yes, we were, I hit the car in front of us.  We still are.  We’re stuck on I-84 in Hartford.” 

“Oh my, is everybody alright?” 

“Yeah, yeah, nobody was hurt… in the accident, Rose is still sick, though.  She threw up right before.” 

“I heard she threw up when your wife called in early.” 

“Yeah, that was before.  She threw up after lunch and then just before the accident.  That’s twice today, once yesterday.  She’s thrown up three times, once yesterday and twice today.” 

“Oh, well, thank God that she wasn’t hurt, that nobody was hurt.  Well, how is she doing no?”

“Well, she still seems really tired, really fatigued, and she’s still breathing funny.” 

“Breathing funny?”

“Yeah, kind of a huh-huh-huh sound.” 

“Oh, that’s not good.” 

“Yeah, she’s been doing that since yesterday afternoon.” 

“Oh, that’s not good,” Maureen went on.  “Any kind of a breathing problem could be serious.  Let me check with Dr. Harris.”  Maureen was back in a moment.  “Yes, I talked to Dr. Harris and he agreed.  You should go right to the ER.  You shouldn’t come to the office.  You need to go to the ER.” 

“Really?” 

“Yes, definitely, any kind of problem with breathing could be serious.  You need to go to the ER.”  I ended the call and relayed the conversation to Cheryl.  She gave me a disbelieving shrug.

 “What are we going to do?”

“I don’t know.”  I felt trapped, helpless.  The normal freedom of being able to drive wherever we had go, whenever we wanted to, so easily taken for granted, was now gone.  Our van was banged up and broken.  The few messages we had left on our families’ answering machines had not come back to us yet.  Nobody we knew was coming to pick us up. Nobody even knew we were in trouble.

 “Hello,” Trooper Domijan was back at my window, “How’s everybody doing?  Everybody still OK?”

“Uh, actually, I just talked to my daughter’s doctor.  They want us to go right to the ER.  I mean, it’s not like she’s real sick, she just seems to be having a little trouble breathing.  They’re concerned about that.” 

“I could call an ambulance.  That might take a while.  Or I could give her a ride in my cruiser.” 

I turned to Cheryl, Rose was still sitting quietly, very tired, on her lap. 

“Yeah, that sounds like a good idea.” She said. 

“You’ll go with her?” 

“Yeah.”

 I turned back to Trooper Domijan, “OK, we’ll do that.  Her mom will go with her.  I appreciate the help” 

“OK, we’ll go in a minute.”  Trooper Domijan left to check on the accident scene cleanup.  Cheryl pulled open the passenger side van door, wrapped Rose tight in her arms again and climbed down into the emergency lane.  She began to make her way back to the State Trooper’s cruiser, walking slowly, carefully holding Rose as she made her way along the Jersey barriers.  I pulled Rose’s car seat out and walked back along the traffic side of our van, shielded from oncoming cars by the trooper’s cruiser, leaving Erin and Katie behind in our van.  Cheryl and Rose were waiting by the cruiser’s passenger side.  The afternoon sun was beating down.  They could both feel the heat building.  I squeezed past them, opened the rear door and started to clean enough space for Cheryl and Rose on the cluttered rear seat. 

Another bizarre feeling that I was unprepared for.  I could accept that bumps and bruises from falls off bikes and injuries from soccer games that might require me to take my child to the Emergency Room.  I could imagine maybe a panicky but controlled ride with an ice pack held over a bruise and words of comfort.  I couldn’t imagine a vacation ending with me strapping Rose’s car seat into the back of a State Trooper’s cruiser; lifting Rose in and buckling her in, leaving her with the only explanation being her mom climbing into the seat along side her.  But I did. 

I left the cruiser as Cheryl was climbing into the cluttered back seat.  I went back to help Erin and Katie out of our van.  We made our way past the front of the van squeezing through the narrow breakdown lane along the Jersey barriers.  We climbed into the tow truck cab and sat along side each other on the oversized bench seat.  We watched through the rear window as our van was hoisted onto the wrecker flat bed.  As we waited to pull into traffic, the state trooper’s cruiser pulled past us, lights flashing, Rose and mom heading for the emergency room.  

Still Friday ~ The Emergency Room

Trooper Domijan was a gentleman.  He was kind enough to take Cheryl and Rose right into the Emergency Room at CCMC.  They parked right outside and he carried Rose’s car seat in while Cheryl carried Rose, only leaving when he was sure they were settled in. 

After a brief visit with triage, Rose was admitted to the ER and set up with Cheryl in one of the ER examining rooms.  By now it was close to 4:00 in the afternoon.  A parade of ER doctors started to examine Rose to try to figure out the source of her discomfort.  The symptoms were no fever, an initial high indication did not repeat, the throwing up episodes, and if the room was very quiet, the sound of Rose’s strained huh-huh-huh breathing.  Along with, with the help of the ER monitor equipment. these was added one new symptom.  Rose’s heart rate was very high, consistently over 160 beats per minute.  This was well above the normal range of 80 to 120 beats per minute for a child Rose’s age.

Initially, the ER doctors told Cheryl that maybe Rose was dehydrated.  This was not unlikely with the hot summer weather we had been having along with the week spent outside camping, combined with Rose’s decreased appetite for eating and drinking.  An attempt was made to start an IV was made but Rose’s small veins proved to be elusive.  A second possibility being strongly considered was pain due to scarring from all of Rose’s surgeries.  Apparently it’s not unheard of to have complications from scarring even many years after surgery.  Long term coping with increased pain levels over many weeks may have worn Rose down.  A third possibility, considered because of Rose’s cardiology history, was a problem with her heart.  In the initial assessment this didn’t seem likely, but just to be thorough an ER nurse took an EKG and sent it upstairs to Rose’s Cardiologist’s office for review. 

Cheryl sat with Rose through the series of exams.  Several ER doctors took turns trying to gently push and probe to find the source of Rose’s pain.  Her belly, the long thin scar from her duodenal stenosis repair from when she was just 2 weeks old, her G-tube puckered dime size scar from 16 months old, was pushed and probed from various angles.  The scars from her heart surgery at 3 months old, the long wide of scar down her sternum and the ripples of scars left from two sets of chest tubes, invited some staring but only the mildest probing checks.

Rose generally has a pretty good tolerance for medical examines.  I credit this to kindness and gentleness of the many doctors and nurses Rose has seen through her young years along with the play-acting doctor games she has been enjoying with her family, most times with her big sister, Katie. 

I remember Dr. Leopold, Rose’s primary cardiologist, taking one check-up with about a 6 month old Rose as an opportunity to play a long game of peek-a-boo, hiding behind his circus animal tie, then peeking out with smiles and ‘boo’s!’ to amuse Rose.  Afterwards, on an aside, he told Cheryl and me that he didn’t want every one of Rose’s visits to be medically intrusive.  He wanted her to know that her visits with him could be relaxing and fun.

 I also give some credit to the doctor games that Rose plays at home.  Often Katie and Rose play act sharing a toy medical kit full of bright plastic versions of all the props used in a general physical exam; a stethoscope, a blood pressure cuff, a reflex hammer, a thermometer, the things for checking ears and throats and an assortment of band-aids and casts.  Rose and Katie will take turns at playing the doctor and the patient roles.  Through these games Rose has developed a very mature patient pose.  She’s very well practiced at the various examine cues; “Please, sit up,” “Let me take a listen to your heart,” “Take a deep breath,” “Another,” “Let me check your ears,” “I’m going to take a look in your mouth now.” 

And at first, during this ER visit, Rose was a patient patient but this was not going to be a quick or playful or even successful exam.  The source of Rose’s pain continued to elude the ER doctors.  Their repeated probes to Rose’s belly had worn down her patience and endurance and had pushed her over her pain sensitivity threshold.  Rose had stopped enjoying this game.  She was starting to question why she should keep playing.

I joined Rose and Cheryl in the ER examining room about an hour later after dropping Erin and Katie off for the afternoon at their Aunt Liz’s and Uncle Joe’s house, just 4 doors down the street from us.  Liz had met us at the garage where the tow truck had dropped off our van and drove us home.  Erin and Katie were going to stay at their house until we knew better what was happening.  I stopped at home to pick up some overnight supplies for Cheryl and Rose and headed back down to Children’s hospital in our second car, a small Saturn wagon

They were alone when I met them.  They had been sitting quietly for a few minutes in between examines.  Cheryl looked tired and concerned but relieved to be in the ER with medical help close by.  Rose sat on her lap wearing the hospital-issued, yellow-orange pajamas decorated with cartoon characters.  She looked tired, too, but was starting to bounce back a little.  The brief reprieve from the medical exams and cool, comfortable air of the ER had revived her a little.  Rose listened as Cheryl briefed me on what had happened. 

We were talking as an ER nurse came in the room to send us down the hallway for a chest X-ray of Rose’s heart.  We knew the way, we had been there last year for Rose’s Atlantoaxial neck instability X-ray check.  Thankfully, then the results had been negative and Rose’s experience had been positive.  The X-ray technician had involved Rose in explanations of how the camera was operated, amusing her and winning her ready cooperation. And thankfully, now, Rose seemed to look forward to returning to X-ray again.  She walked down the cool tiled hall between her mom and dad, happy to hold hands with each.  The X-ray went quick and smooth.  In less then 15 minutes we were back in the ER exam room, sitting quietly, waiting for whatever was going to happen next.

An ER nurse popped her head in the door.  “We need to get a urine sample,” she said. 

“Really?” Cheryl answered surprised, “I just took her to the bathroom a little while ago.  She just went.  I don’t think she’s going to be able to go again.” 

“Yeah, I need a urine sample though.  The doctors want to test her for a Urinary Track Infection.  If she can’t go I’ll have to cath her, I’m sorry about that.” 

Cheryl and I looked at each other.  “OK, we’ll give it a try.”  Cheryl answered.  “Rose, come on.  You have to try to go to the toilet again.” 

The nurse handed Cheryl the urine sample collection system, which is basically a sterile cup.  We walked Rose down the hall, hand in hand, between us.  I helped Rose balance on the side of the toilet seat and Cheryl held the cup but no luck.  To Rose’s credit, she tried her best but she just couldn’t manage to pee into the cup. 

So it was back to the examining room, laid out on the table on her back, her pull-up diaper pulled off and a catheter slid up into her bladder to collect that small elusive sample of urine.  Rose braced herself, absorbed the pain and then, almost too tired, she cried.  Cheryl collected Rose in her arms, again trying to comfort and protect her.  

Dr Peng, another ER doctor walked into our room.  He stood quietly at the back of the room as the nurse cleaned up the catheter kit and Cheryl held Rose.  I looked at him and I knew I had met him before.  Like me, he was married and the father of three girls, the youngest one with Down syndrome.  I had met him and his family at a playgroup get-together last winter.  We had met once, talked for an hour comparing stories and then hadn’t seen each other since then. 

“It’s a small world,” I said, 

Dr. Peng looked at me uncertain and then said, “Oh, yeah, you’re from the playgroup.  Oh, this is that Rose” 

“Yeah,”

“I remember you.  She was very impressive with her signing.  How’s she been doing?” 

“Well, alright until what ever this is.” 

“Yeah, well, I know you’ve been talking to the other doctors.  We’re looking at maybe dehydration, maybe scarring from her previous surgeries could be causing pain.  That could be pain that she’s had for awhile, that is just wearing her down.  And maybe something to do with her heart, with her history, we need to check that just to be sure. “

“The nurse took an EKG before” Cheryl said.

“OK…yeah, we haven’t heard back from the cardiologist yet…I’m going to want to take a look at her, too.  Would you please sit her on the table.” 

Cheryl sat Rose on the examining table.  Rose clung to her mom.  She needed a little encouragement to lay back so Dr. Peng could take a look at her.  She was starting to associate sitting on the examining table with the extra pain associated with the doctor’s repeated probes.  Rose lay still as Dr. Peng gently moved Rose’s pajama top. 

The scars on her chest and stomach told the story from the first few months of her life. I tried to talk Dr. Peng through Rose’s surgical history.  “That’s the chest scar from her AV canal repair.  That’s the scars from her chest tubes.  She had two sets of chest tubes.”  I felt like I was stumbling, so much history, so young.  Was this obvious?  Was I leaving something important out?  Cheryl and I have given many medical histories before but usually at wellness visits just to fill in a new doctor.  Giving a history now as part of the search to find out what was wrong with Rose was overwhelming.  And I had gone out of chronological order.  Did that make a difference?  “And here was her incision for her duodenal stenosis repair.  And that was her G-tube stoma….” I trailed off.  There was more but I couldn’t go through every scar I saw every night when I changed her into her pajamas; the central lines, the IV’s, the repair to her femoral artery blockage, the puncture in her side for the chest drain.  It was too much. 

Dr. Peng listened to me trail off and then turned to examine Rose.  He gently touched Rose, examining her surgical scars, each time trying to judge Rose’s reaction.  He probed her belly area tentatively at first and the more deeply, Rose’s reaction was a vague, general discomfort.  Dr. Peng stopped and shook his head.  “Yeah, I’m not sure.  It’s hard to tell.” 

“Well, can it really be due to pain from a surgical scar that’s more than three years old?  I mean, she was fine up until now.  Can it really come on just like that?”

“Yeah, it can.  It’s possible,” answered Dr. Peng. 

“Well, what do you do to fix it?” 

“She would need surgery to repair the scarring.”  It was crushing to think that we might have to subject Rose to the pains of more surgery to help get her better.  More nurses came into the room carrying equipment for an IV set up.  “But that’s just one of the possibilities.  If we can get an IV in her and get her re-hydrated and things clear up then that’s great.  Or if we can draw some blood samples from the IV and run some more tests that might show something too.” 

“So, you think this is serious enough to stay in the ER?”  I was still concerned that somebody might decide that Rose really wasn’t that bad, that she didn’t need to be in the hospital or the ER.  I felt that Rose was sick beyond the ability of parents to heal, we needed help.  But if nobody could figure out what was wrong with, if it wasn’t bad enough to be obvious, maybe we would be sent home. 

“Oh, yeah, there’s something here.  She’s trying to tell us something.  We just need more time to figure it out.”  I know I wasn’t fully rationale but it was a relief to hear that commitment.

The IV nurse and her assistant started to prepare Rose.  Dr. Peng stepped back and stood against the wall at the foot of Rose’s table.  Cheryl stood at the head of the table, her hand brushing Rose’s hair.  I stood next to Cheryl at Rose’s left elbow, watching the IV nurse wrap a tourniquet around Rose’s tiny soft bicep.  I had a feeling of dread.  I’d seen this tried too many times, and failed too many times. 

The IV nurse talked to Rose, her voice calm and practiced, trying to sooth Rose.  Her left hand held Rose’s arm firmly, her right hand held the catheter needle, poised just above Rose’s skin.  A thin, translucent blue line showed faintly on the inside of Rose’s out turned left arm.  The needle drove in, punctured her skin and slid through in search of its target.  Rose was squirming.  The needle caught the vein and then slid off, the needle going one way, the vein rolling the other way.  A miss.  The IV nurse backed the needle part way out but still under Rose’s skin. She took aim and drove the needle in  again and again she missed.  The pain was welling up in Rose’s body.  She was squirming to break free.  Only the IV nurse’s firm grip kept Rose from pulling her arm away.  But Rose cried, not all-out tears, not fully formed words, but sounds that left us no doubt that she was hurting badly.  The IV nurse tried one more time, probing with the needle still under Rose’s skin, feeling for a vein to puncture.  The search failed.  She pulled the needle back out and released Rose’s arm. 

Rose pulled her arm back and rolled on her side, away from the IV nurse.  She cried quietly into her mother.  Cheryl reached down to console Rose, I took a deep breath, grateful that the assault of my daughter’s arm was over, at least for the moment.  The goal of getting an IV started and possibly being the cure for whatever was ailing Rose was looking more and more distant.  The immediate need to stop the intense pain in Rose’s arm from the catheter needle being pushed and probed was growing to immense proportions.  I spoke my first medical protest on Rose’s behalf in more than three years.  The words came out in a timid, uncertain voice, “you know the intensivists in the PICU have done a good job with Rose in the past.” 

The IV nurse looked at me and let my suggestion drop without comment.  As a parent in the PICU, I had seen the skill hierarchy.  She was one that the ER had searched out after the first failed IV attempt earlier, she was the one expected to be able to answer these challengers.  A small child’s health relied on her.  She knew it and she wasn’t backing down. 

“We need to get this IV started so we can get Rose started on fluids.”  Dr. Peng said, “That could answer a lot of questions.” 

The IV nurse had slid her stool over to Rose’s right side.  She was flexing Rose’s right wrist down looking for veins on the back of her hand, “This might work.  This looks good.” 

I sighed, from somewhere came the inspiration to talk to Rose, to take the challenge to her.  “Rose, you need to do this.”  I was shaking, crying inside but I hoped my voice sounded confident.  “You need to let them put this IV in.  You need this so you can get better.” 

Rose had turned to the sound of my voice, she listened to what I said.  There was a moment where we could all see her considering my words and the possible out comes.  The she relaxed, calmed herself and prepared for the needle again. 

The IV nurse slid the catheter needle through Rose’s skin and hit the thin blue vein on the back of Rose’s hand, “Got it!”  She slid the catheter in further, pulled a piece of securing tape across the back of Rose’s hand and then sat back.  Rose relaxed, too.  The room was quiet. 

Dr Peng broke the tension.  “Wow, that was amazing.”  He said, “My kids would never do that!” 

A simple but major milestone had been accomplished, through the skill of a persistent IV nurse and the toughness of a little 3 year old, we were starting to move forward.  The IV nurse quietly went back to work pulling several blood samples from Rose’s IV connection.  She taped and tagged the vials and then started Rose on a clear fluid IV drip. 

Dr. Peng stepped forward to talk to Cheryl, me and Rose.  “Well, now we can be sure to get Rose hydrated.  Also, we’ll be able to run some tests that might answer some questions.  We can check her electrolytes, we can check her iron count to see if she’s anemic.  And we’re still waiting on the test results from the urine sample to see if she has a urinary track infection.  But just getting an IV started and getting some fluids in Rose can be a big help.”

Dr. Peng, the IV nurse and her assistant left us to recover.  Cheryl picked Rose off the examining table and sat in the hard blue plastic chair, the only non medical device in the room.  Rose sat on her mom’s lap, leaning into her for comfort and cuddling.  I helped maneuver the IV wheel stand, trying to give Rose’s IV line enough slack so she could sit comfortably with her mom.  

Rose had a few minutes to rest before another ER doctor came in the room.  She had done the initial exam on Rose and wanted to try again to locate the source of Rose’s pain.  Cheryl, Rose and I started our slow dance across the examining room, Cheryl holding Rose, me maneuvering the IV pole, all of us trying to keep track of the IV lines.  Cheryl tried to untangle herself from Rose and position her on the examining table yet again. 

Rose was starting to develop a strong distrust for the examining table.  She needed some serious persuading to let go of her mom and lay back on the table.  The doctor probed Rose’s belly area, again exploring for some definite source of pain.  Rose pulled away, her body language telling us she did not want to be touched anymore.  The ER doctor explained that she was still concerned that maybe Rose was experiencing pain due to surgical scarring.  She had called for a GI consult.  Hopefully, they would be able to pin point the source of the problem.

Afternoon was long over and we were getting into the evening hours.  We had been in the ER with Rose for several hours but Rose could not be admitted to a medical floor in the hospital until she had a diagnosis and with that a department to assume admitting responsibility.  Word had come back from the cardiologists; they had reviewed Rose’s EKG and saw nothing out of the ordinary.  The ER doctor was hoping that the GI resident would take a look at Rose and confirm her surgical scarring diagnosis.  Then GI could admit Rose and she could get out of the ER and move up to a room on a medical floor. 

The ER doctor left us and we settled back into waiting.  Rose caught a quick nap on Cheryl’s lap, both sitting in the hard plastic chair against the wall, Rose’s IV pole parked next to them. 

About ten minutes later, the GI resident entered the room and we started through the bizarre routine all over again; Cheryl standing with Rose, slowing walking across the room, me rolling the IV pole alongside, trying to keep all of us from tangling as Cheryl tried to lay Rose on the examining table.  Rose, by now, knew exactly what to expect and wasn’t happy about it.  She clung to her mother like she never wanted to leave.  Cheryl and I carefully peeled Rose’s arms and legs free, trying to sooth her but failing as we laid Rose once again on the examining table. 

The GI resident briefly summarized for our benefit what he had heard, and then set about trying to confirm the diagnosis, probing Rose’s surgical sites.  After a minute of testing Rose he stopped, drew his hands back, let Rose settle down and then lifted his hands and moved towards Rose’s belly again.  Rose strained to distance herself from his reach, sliding her hips and stomach as far away as her extreme limits of flexibility would allow.  The GI resident pulled his hands back and watched Rose relax.  Again, he reached his hands towards her and again before he even came close to touching her, Rose had arched her body as far away as she could.  The GI resident sighed and looked at us, “I’m not sure about this.  I’m going to call Dr. Hight and discuss this with him.  I’ll get back to you.”

Rose fell asleep right where she lay, still on the examining table.  Her prized pink blanket had made the trip to the ER with her in the back of the State Trooper’s cruiser and now Cheryl pulled it over Rose.  After about 10 minutes the GI resident was back in the room.  He took a look at Rose sleeping a deep sleep then he pulled her pink blanket back and probed her scars on her belly, gently but persistently.  This time a sleeping Rose gave no reaction at all.  It was the best confirmation we could have hoped for, there was no surgical scarring induced pain.  “This confirms it” he said, “There is no doubt now.  This is what I discussed with Dr Hight and he agreed.  There’s no evidence of any GI problems here.  We can’t admit her under GI”.  

He left us with a still sleeping Rose.  Shortly, the first ER doctor rejoined us.  She summarized our situation. The test results were starting to come back.  Rose’s electrolytes were fine.  She wasn’t dehydrated.  Her iron count was O.K., she wasn’t anemic.  A chest x-ray showed nothing out of the ordinary except for Rose’s already exceptional heart.  The EKG sent up to cardiology had not uncovered anything.  They were still waiting to hear on a culture of her urine sample, but admittedly, a urinary track infection was a long shot.  And now the GI consult had ruled out another dead end.  She still did not know what Rose’s diagnosis was or what department would admit Rose to the hospital.  They needed more time.  It was obvious that Rose was too sick to go home it just wasn’t obvious what was causing Rose to be sick.  The function of the ER is to make that diagnosis.  Without it Rose couldn’t leave the ER and be admitted to the hospital.  The ER doctor said there was an overnight room at the back of the ER with a bed for Rose and a lounge chair for a parent.  We could move there until a diagnosis could be made, hopefully it would be soon, but we’d be more comfortable in the mean time. 

We started the slow, careful dance of moving Rose.  We disconnected the leads from her vital signs monitor, three stickers still on her chest with a bundle of wires coming out of the folds of her blanket and a bright, red-light, pulse ox sensor on Rose’s big toe.  The IV line in the back of her right hand ran to the bag and pump on the IV pole.  I scooped Rose into my arms careful not to tangle any of her lines as I held her wrapped in her blanket.  Cheryl rolled the IV pole around from the far side of the table.  Slowly, carefully side-by-side, we carried Rose out the examining room and down the hallway, the three of us doing the parent-child-IV pole dance the whole way.  

Rose was settled into her new bed without ever waking up.  The IV pole was parked along the back side of her bed and all of her vital sensing lines were plugged in and the too-familiar monitor above the head of the bed was turned on, recording and reporting the state of Rose’s health; breathing rate normal, blood oxygen levels normal, heart rate still high, unchanged, over 160 beats per minute.  For the moment, we felt Rose was safe in this ER and this hospital.  She had her small victories.  The IV going into the back of Rose’s right hand and the pulse ox sensor being moved off her left thumb to her big toe had allowed her dominant left hand the freedom to sign but the many trials left Rose too exhausted to sign or even stay awake.  She slept the sleep of exhaustion.  It was all she could do but it would be the answer to the mystery of what was making Rose sick. 

It was late, almost 10:00.  The evening was almost gone.  A day that had started joyfully on a wooded campsite in New Jersey, had, almost unknown to us, had been slowly spiraled out of control until the car crash had split our family, sending Rose with her mom to the ER.  Rose was very sick, we didn’t know why, but it was becoming more and more obvious that she was.  At least she was in the ER being closely monitored.  That brought us a small amount of comfort.  Cheryl stayed with Rose, trying to make herself comfortable in the lone guest chair.

I left to go pick Erin and Katie from my brother Joe’s house.  The brief conversation we had was more of the status report; what tests had been run, what diagnosis had been ruled out.  I could only bring them up to date.  I had no answers to offer. 

Sometime after, while one town away Erin, Katie and I had taken the short walk home and climbed into our own beds for the first time in almost a week.  Cheryl received Rose’s diagnosis, or at least the start of a diagnosis.  As Rose slept through the late evening hours the continual monitoring of her vital signs showed something odd; her breathing rate slowed and deepened as expected but her heart rate didn’t slow down a beat.  Her heart was beating at a constant 164 beats per minute, whether during the afternoon’s painfully belly examines or during the evening’s deep exhausted sleep, it didn’t vary a beat.  This had not been as obvious during all the different exams early in the day, but as Rose slept, it became glaringly obvious.  Rose’s heart wasn’t responding to changes in activity or effort level.  It should have slowed noticeably to a restful, sleeping pace but it had not.  Her heart kept beating it’s own constant rhythm, 164 beats per minute.  Now a sleeping Rose told the story to the ER doctor, whatever was making Rose sick was definitely related to her heart, and with that diagnosis Rose and Cheryl finally left the ER.  She was admitted to a general medical floor under the cardiology department’s care.

Saturday Morning

Cheryl and Rose woke early to a visit from Dr. Iyer.  He was covering the hospital for the weekend for Rose’s cardiology group.  As the group’s expert on the heart’s electrical system he had a pretty clear idea what might be causing Rose’s problem.  Rose was a little refreshed from a long night’s sleep but her heart rate was unchanged, still the constant 164 beats per minute. 

Dr. Iyer explained his theory to Cheryl as he pulled the ultra sound/echo-cardiogram up to Rose’s bedside; sometimes, in a rare number of cases, there is a side effect to the type of surgery Rose had to repair her endocrinal cushion detect when she was just 3 months old.  Rose’s open heart surgery required small access holes to be cut into her heart’s atriums.  Scarring around those access holes can grow over the years and interfere with the hearts electrical wiring system.  The electrical impulses that control the hearts travel through that system.  If there’s a short circuit or a disruption in that system will cause a disruption in the rhythm of the heart.  That’s what he suspected was happening to Rose, scarring due to her surgery had her heart racing in a pattern consistent with Atryial Flutter. 

Dr. Iyer explained his theory to Cheryl and then asked permission to perform a simple diagnosis test to confirm his suspicion.  He wanted to give Rose a medicine that would temporarily current Rose’s heart rate if she was truly in Atrial Flutter.  He would watch her heart with the echo cardiogram during the test.  If her heart responded there was a fairly simple strait forward procedure to provide a hopefully lasting correction.  If her heart didn’t respond then her problem was possibly another type of flutter or some other cardio problem that would take more thinking and more tests to figure out.  Cheryl listened to the explanation and then quietly signed the consent form, of the many times we’ve signed these types of forms this is the only time that Rose would be conscience during the procedure and one of us would be there with her. 

Cheryl helped open the front of Rose’s pajamas.  She talked to Rose, explaining briefly what she could expect.  Dr. Iyer sprayed the cool, clear, ultra sound conducting gel onto Rose’s chest.  He worked the ward to get a clear picture of Rose’s heart activity, splashes of blue and red showed on the echo cardiogram display, the amplified swishes and pumping sounds of her heart filled the room and a constant read out of her heart rate was clearly displayed, 164 beats per minute.  Dr. Iyer pushed the telling medication through Rose’s IV and into her blood stream.  Within seconds her heart rate dropped noticeably, down close to a hundred beats per minute, stayed for a few seconds, less than a half dozen beats and then quickly climbed back to the now customary 164 beats per minute. 

Dr. Iyer lifted the ultra sound wand off of Rose’s chest and stowed it in the cart,  “That was it, that was pretty definite.” 

Cheryl sighed with relief, Rose finally had her diagnosis, Atrial Flutter.

 “Now, we need to perform a cardio version.” 

Sometimes, often, Cheryl’s nursing background come in handy.  She was familiar with the term cardio version. 

“And we’ll want to move her into the PICU, just as a precaution, and they have the right equipment there anyway.”  Dr. Iyer explained, trying to sound matter of fact.

After Dr. Iyer left, Cheryl call home to bring us up to speed.  The ringing phone woke me from a deep sleep.  Erin was still sleeping, buried under the covers, Katie was first up, downstairs already, watching Saturday morning cartoons.  My foggy, just waking up brain had a hard time understanding what Cheryl was telling me.  I understood that they had moved out of the ER, up to a medical floor, the eighth floor.  I tired to remember, had we been there before.  I understood that Rose had finally been diagnosed because her heart rate continued to stay high even after she had been asleep for hours.  But I didn’t understand what Cheryl told me about the details of Dr. Iyer’s diagnosis; something about one of two kinds of heart flutter, something about a test just run that had been conclusive and something about going back to the PICU for a procedure.  Cheryl went on trying to explain to me but it all sounded so foreign; a cardio version or a version, I wasn’t sure I heard it correctly or even started to understand Cheryl’s explanation.  And Rose would be going back to the PICU, not as a visitor returning to give out ‘thank you’s’, but as a patient, again. 

Cheryl’s voice sounded calm, even a little relieved, with Dr. Iyer’s confident diagnosis and the promise of a quick cure but I was half awake, confused and concerned.  Going back to the PICU brought back a wide range of conflicting emotions; I knew the best help imaginable would be there for Rose but it was hard to accept that now she was sick enough to need that help.  

I woke Erin up and we headed downstairs.  Over a quick breakfast, I gave Erin and Kate the news I had just received from their mom; Rose was doing OK, she was going to have a procedure later in the day that should help.  As quick as we could, without much discussion, we finished our breakfast and headed into the hospital to visit Rose and Cheryl.  The car ride down was quiet.  Erin and Katie had spent many hours in hospitals visiting their little sister.  Her last stay was more then three years ago, a very long time ago in the measure of their young lives, but the experience was vivid in their memories.  The shock of the car accident and seeing their little sister rushed off to the ER in the back of a state trooper’s cruiser had brought them back.  A quiet evening playing over their young cousin’s house and my somewhat vague but reassuring story helped calm them some.  They’ve learned to let their parents explanation soak in and not to over react – our initial stumbling, guarded, ignorant pre-natal explanations of how Rose might be affected by having Down syndrome were processed over the first few months of Rose’s young life and, despite her many hospital stays, came back to us as, “What were you guys talking about? She’s a baby!”  

After a ten minute ride back into Hartford we were back at the hospital and fell into our distance but familiar routine, even for where we park.  During the stress of Rose’s stay for heart surgery, Cheryl and I had figured out that we were going to be incapable of remembering even the simplest details like where we parked our car.  As we shuttled back and forth between the hospital and our home one town over, one of us always with Rose, the other rushing home to be with Erin and Kate, we immediately started having problems remembering on which of the parking garage’s eight floors we had left the car.  The frustration of wandering through the eight floors of the parking garage searching for the car, trying to keep some semblance of Erin’s or Katie’s social schedule was something we didn’t need.  Within a day or so, we had arrived at a solution we could remember.  We would only park on the third or fifth floor.  The third floor because we have three children.  The fifth floor because there are five of us in our family.  It’s seems odd but, back more than three years ago, as Rose fought to recover from the complications with her heart defect and repair, every moment of our waking moments was consumed with Rose’s struggle, as we tried to support her, even where we parked the car was a life affirming action. 

As we pulled into the parking garage on this Saturday, I could see it was a busy day.  We drove past the third floor, no spots available.  Drove through the fourth floor, hoping no spots were free and saw none.  Around the fifth floor, almost to the end, finally a free spot, I parked the car and thought, ‘Fifth floor, there are five of us in our family.’ 

And after a short walk across the street and a quick ride in the elevator up to the eighth floor, the five of us were together again.  Cheryl and I talked about Dr. Iyer’s test from early morning.  I was still trying to understand what was known and what was going to happen.  Erin and Katie played with Rose, sitting on the edge of her big hospital bed, catching up after being away from their little sister.  They were half listening to their parent’s conversation but they were doing their own assessments.  Rose was sitting in bed, a hospital bed, and she wasn’t running around (OK, walking fast) and exploring like they had come to expect but she did seem to be very interested in the lessons they were giving her on her bed controls worked, and when it came time to watch a video, Barney was definitely preferred over Big Bird.  

After an hour or so, Dr. Iyer stopped back into check on Rose, Erin and Katie were playing with Rose and Cheryl and I had a chance to listen to his diagnosis one more time and try to understand the treatment.  He patiently summarized the morning’s test and explained how it had definitely confirmed the diagnosis.  Rose had an atrial flutter that was causing her heart to race.  Dr. Iyer went on to explain how Rose’s heart surgery had required Dr. Ellison to make a small hole in her atrium to allow access to make the repairs that Rose vitally needed.  This hole was the “open” in her open-heart surgery, unfortunately, in a rare number of cases, scarring that forms around that hole can interfere with the hearts electrically wiring.  The nerves that carry the electrical impulses that control the rhythm of the heart run through the atriums.  Sometimes, years after surgery, the scarring from the healed surgical access hole can grow and cause a short circuit in the hearts electrical wiring.  When this arrhythmia kicks in, and nobody knows what causes it to start up, the heart rate is a function of the physical shape of the short circuit created by the scarring.  The heart will beat at that constant fixed rate and will not speed up or slow down with changes in the level of physical activity. 

In Rose’s case, the arrhythmia appeared to be fairly mild, he had seen much worse.  He humbly mentioned in his self-effacing manner that this was his area of expertise; it was fortunate that he was covering this weekend for the cardiology group, not that someone else couldn’t have made the diagnosis. 

He went on, Rose’s heart was pumping inefficiently resulting in her increasing fatigue.  If they could stop the flutter and get Rose’s heart rate to go back to normal all her other symptom’s should clear up fairly quickly. 

“So, how long had her heart been in flutter? A few days? More than a week?”  I asked.

“It could be a few days, maybe more,” Dr. Iyer answered.

I started to think back over the last week or longer, back to when we first noticed the change in her behavior, wondering how long Rose was feeling the effect of her arrhythmia.  “So, her heart’s been racing along at 165 beats per minute for maybe a week or more?” 

“Well, not at 165, the monitor just picks up the rate that her ventricles are pumping.  With the type of flutter that Rose had, her atriums are going twice as fast as her ventricles.” 

330 Beats per minute, I couldn’t believe it, Mild?  I couldn’t begin to imagine severe.  But the important thing is to get Rose up the PICU and perform the cardio version. 

“We’re expecting a room to open up later today.  Really, going to the PICU is just a precaution.  They have all the equipment that we need right there and any support that we might need not that we are expecting to.” 

“So, I’m still not sure exactly what is a cardio version?  What do you do?”  I asked.

“We just apply a mild electric shock to the heart, just enough to break the arrhythmia.  It works fairly well.  Almost always the heart quickly goes back to it proper rhythm,” Dr Iyer said.

 I was finally starting to fully understand.  I didn’t know the medical term for it but I had a medical TV show viewer’s vague familiarity with terms like 'crash cart' and 'charging paddles.'  

“OK, OK,” I hesitated. I was trying to not be overwhelmed by the thought of Rose needing to have her heart shocked.  Mechanically, I tried to go through the motions of being Rose’s parent advocate.  I chose the wrong wording.  “Are there any complications or side effects we should consider?” 

“You don’t understand,” Dr. Iyer cut me off.  “She needs to have this done soon.  If you don’t do this she could go into heart failure in a few days.” 

I held up my hands and try to slow him down and reassure him.  “We want to have the procedure.  I’m just asking so we can be prepared.” 

“Well, OK,” Dr. Iyer recovered his normal calm manner, “Uh yes, she will be sedated so there’s the normal risk associated with sedation.  And there’s always the possibility for complications with any procedure but they’re pretty remote.  This is a pretty safe procedure.  And if anything should happen, we’ll be in the PICU, everything and everyone we could possibly need will be there.” 

Dr. Iyer left the five of us.  Cheryl and I briefed Erin and Katie again; Rose would be going to the PICU for a procedure to clear her arrhythmia, it would be sometime in the next few hours, Dr. Iyer expected it to work quickly and Rose would probably be home in a few days.  They took it all in, our medical report, their own observations, and processed it quickly.  Rose didn’t seem that sick, she was going to be home soon, they knew all they needed to know, the details weren’t that important, Rose was going to be OK.  So they went back to doing what kids do when everything is going to be alright, things like playing with the hospital bed controls, flipping the TV channels, arguing over the everyday things that sisters argue about and generally doing what parents call ‘bouncing off the walls.’ 

For Cheryl and me it was an entirely different processing experience.  The thought of going back to the PICU filled us with the most extreme and contrasting emotions.  To us it was the place of our most desperate needs.  Where Rose had lain for hours and days after her heart surgery, at first struggling just to live and then struggling to heal, to be put back together again and to live again on her own life energy.  It was a place where we had had to face every parent’s ultimate fear, to say goodbye to our child.  But it was a place where we had found the most wonderful, capable people that could bear this ultimate trust.  They had carried our fragile child and our fragile family through those unprecedented moments, gently guiding us at every step.  And over those three weeks, more than three years ago, the PICU had become a very special place for us.  The place we had never wanted to be, became the place we never wanted to leave.  And the place where we had the most frightening moments of our lives had become for us the safest place on earth. 

And now, the place you run back to when you are desperate.  As amazing as Rose’s first stay in the PICU was, to see her face the most severe challenges and survive was awe inspiring, it is still not a challenge any parent would with upon their child, still not a challenge that any parent would willingly accept even knowing the outcome.  You don’t choose it and yet you can’t back away from it, we are drawn into these unavoidable moments with Rose.  The lure of a healthy, happy life hangs just to the other side of these moments.  We, as Rose’s parents, must do our best to prepare Rose for these moments with love and confidence and help carry her through the healthy life waiting just within reach.

But, honestly, it does take a toll.  We stood by Rose during her mortal test and we were changed forever.  We were there for; comforting and soothing, loving and praying.  We were there for her and, with help, we did our best, we had no regrets.  We stood with her, ready to say good-bye and let go, and then, wonderfully, she came back to us.  And we will do it all again, over and over, if need be.  But we’ll never be the same again.  There’s a protective layer of parental ignorance that gets ripped away and never grows back.  I’ll never again underestimate the strength of ignorance.  It’s one thing to stand with an outward show of calm as a frightening rush of new and unusual events overtakes you.  It’s all together another thing, after months or years of reflection that has amplified the impact, to willingly bring our daughter Rose to another mortal test. 

Selfishly we wanted to stay living in the moment that we had with all five of us still together.  The moment had everything that we needed.  But the moment vanished; the relentless hospital schedule pushed us on.  A floor nurse came in to tell us that the PICU was ready for Rose.  We started our procession down to the PICU with Cheryl carrying rose in her arms and the floor nurse rolling the IV pole along side.  I took a side trip to the lobby with Erin and Katie.  With Cheryl and I doing everything to support Rose and hold ourselves together, we just couldn’t manage the situation with Erin and Katie, too.  We were on the edge of what we were capable of.  Thankfully, a quick call had brought my brother Joe to our aid, he took Erin and Kate back to his house for the rest of the day. 

Still Saturday ~ Back in the PICU

I met Cheryl and Rose back at the PICU.  Preparations were underway for Rose’s Cardio Version.  Cheryl sat in a chair, the parent’s chair, near the patient’s bed, Rose’s bed now, with Rose sitting up right on her lap.  They sat in that all too familiar setting, in the middle of the square clean, sparsely furnished room, the monitor tracking Rose above the head of the bed, supply cabinets and counter running along one wall, a floor to ceiling window’s view of the parking garage and the sky another wall, then the curtained glass wall shared with the next room and then finally the large glass paneled doors opening into the hallway.  This time we were in room #6 in the middle of the PICU, directly across from the nurse’s station, half a hallway away from room #12 at the far end of the PICU where the impossible had taken place over three years ago. 

The room was filling with medical people busy with preparations.  The sense of focusing and preparing for a test was building. 

Three years ago, at the height of Rose’s crisis, the room had been filled with over a dozen medical people for hours on end.  As she slowly earned her way through her growing self-sufficiency, to less and less medical attention.  After 10 days, to finally earn moments of independence from even a single nurse’s attention was considerable victory, that we knowingly enjoyed and celebrated.  The lesson we learned back then was that the severity of Rose’s medical state was directly proportional to the number of medical folks in the room.  If you have been entrusted with sole care of your child for several hours you’re probably close to graduating from the PICU to a room on a medical floor.  If the room was filling with more medical folks then you could count then you were fast crashing towards and through critical.  

Cheryl and I switched roles.  I slowly lifted Rose off of Cheryl’s lap, both of us carefully threading our arms through Rose and her web of entangling IV, and sensing lines.  As Cheryl stretched her legs and left the room to take a quick bathroom break I sat in the parent chair with Rose on my lap, settling in with her, trying to get us both as comfortable as possible.  Cheryl was back in moment, she stood behind the parent chair over my shoulder in Rose’s field of vision, a constant source of reassurance and comfort.  The room was busy with the rush of preparation. 

A nurse approached us and introduced herself to Rose and me, “Hi, I’m Beth, I’m going to be your primary nurse.”  She took a minute to play with Rose in that casual way that the best medical folks have of letting Rose know that they are her friend and she can trust them.  “Hey, how are you doing?  I remember you from before.  Not feeling too good?” 

She waited for Rose’s reaction.  None came. Rose was exhausted.

 “Well, we’re going to help make you feel better, OK?” 

Beth did look familiar, but we had been in the middle of so many medical folks back then it was hard to remember.  I remembered her more from Rose’s many well-visits to the PICU over the last three years, Rose’s victory laps, her triumphant tours of the PICU, where she showed off her good health by running (O.K. walking fast) and laughing and climbing into Dr’s and nurses arms to give hugs and kisses.  That was the before I wanted to remember but Beth’s tone said she was referring to a different ‘before’.

Beth stood to get back into the preparations and then turned to me and said, “You know, I was there.” 

A nurse from behind Rose’s bed, busy opening supplies, spoke up, I didn’t recognize her, “I was there, too.” 

It was clear what where, when ‘there’ was.  One word, five letters can pack so much memory, so much emotion, and so much wonder. ‘There’ was the most phenomenal experience of a lifetime, of several lifetimes, of dozens of lifetimes.  ‘There’ was a bond beyond words.  ‘There’ was seeing the impossible come true. 

‘There’ was a small child going in for a four hour surgery then having her stretched across hours, tens of hours, days, more than a week before she was made whole again.  ‘There’ was a young family bearing a lifetime of pain in a single day, a single hour, a single minute.  ‘There’ was two sisters going beyond anything anyone could ever imagine to support and love and do everything they could to hang onto their baby sister.  ‘There’ was two parents, with a decision no parents could ever be prepared for should ever have to face, decided no more, deciding to finally let go.  And ‘There’ was all the wonder a small child could hold.  ‘There’ was a single moment.  ‘There’ was June 15, 1999 at 11:00 am in PICU room #12.  ‘There’ was grandparents, uncles and aunts, sisters, and a mother and father trying their shaky best to stand by and love and pray for Rose as she passed out of this life into the next. 

And ‘There’ was Rose.  ‘There’ was Rose doing the completely unexpected.  ‘There’ was Rose coming back to us just as we were letting go, reborn again into the impossible.  ‘There’ was Rose and ‘There’ is Rose.  We were still there with Rose and we were here, in the now with two parents overlapping, we were living them both at the same time, emotions from Rose’s first crisis rang through and amplified through this time. 

The room continued to fill with a crowd of medical folks.  Dr. Fischer, the PICU Intensivest, entered the room, a very familiar face.  He gave a quick ‘hello’ and leaned into take a look at Rose.  His stethoscope hunted and stopped across Rose’s chest and then again across her back as he made his assessment.  He was quiet as always, professional and in control.  He had been ‘There’, too.  His strained but pragmatic attempt to prepare Cheryl and me then for Rose’s impending death, his display of medical skill as he repeatedly came to Rose’s aid were seared into my memory.  I heard those words and I remembered those actions whenever I heard his voice or saw his face.  Last night, in the ER, through all the failed attempts to start Rose’s IV, I had fought back the irrational urge to run and find him.  Now Rose had come to him. 

A half a dozen doctors and nurses took turns listening to Rose’s racing heart; doctors, nurses, intensivests, cardiologists, and residents listening and double checking, listening and learning, listening and preparing.  Rose sat quietly on my lap, tired but cooperating as each check was performed.  She understood the concept of taking her cold medicine or antibiotics to get ‘better’, sometimes signing ‘medicine’ to remind us and then signing ‘better’ after she’s taken her doses.  But this was much different.  Did she understand that the build up in the room was leading to a chance for her to get better again, a chance for her to get better over this feeling of exhaustion that had dragged her down so low over the last week or more?  I could feel myself becoming more and more nervous with the increasing medical attention Rose was receiving. 

Beth sensed my building panic and tried to reassure me, “You know, this is nothing like the last time.” 

I tried to agree, I tried to say in my normally, well practiced, low-key confident voice, “Oh, no, this is no big deal.”  But I had lost the subtle control of the tone of my voice that conveys confidence; my voice was shaking with a slightly angry edge.  I could hear it, it wasn’t what my conscience mind wanted to express, but I couldn’t control it, couldn’t stop it, the words just came. 

Beth tried to back track, surprised by my tone, “I mean, of course, it’s still serious,” her voice trailed off. 

I just nodded my head, afraid to talk again.  I know I had failed to display the agreement and confidence that I had wanted to but I just couldn’t risk talking again.  I was working hard just to hold myself together.  Rose didn’t need to see her dad breaking down on top of everything else.  

Dr. Iyer pushed the crash cart into the room and maneuvered it against the wall on the far side of Rose’s soon-to-be bed.  He knelt in front of us with his stethoscope ready to take another quick listen to Rose’s heart.  “Ok, we should be ready in a few minutes here.” 

He pulled open Rose’s orangy-yellow hospital gown covered with tweeter birds and sylvesters again and stretched the maze of stickers on her, ten gray tabs stickers the size of my thumb were distributed around her chest, sides and stomach, awaiting her now frequent EKG checks in between were two white quarter size respiratory sensors, along with a third white circular patch sensing her heart rate, all three wired to the over bed display.  Distant from the area of immediate concern Rose also still carried the red-glowing blood oxygen sensor wrapped around her big toe and the IV line secured to the back of her right hand. 

Dr. Iyer studied Rose for a minute and then called Beth over.  “Can you make room for these?”  He held up two relatively large white paper sealed packages.  Dr. Iyer moved aside as Beth knelt on one knee in front of us. 

Beth studied the puzzle of the stickers on Rose.  Quietly and quickly she solved a dozen problems, “Uh, yeah, I think so.” 

She started gently peeling off gray and white stickers relocating them away from Rose’s heart.  Dr. Iyer held up the two white packages for Beth to see again giving her another chance to size up the area required. 

“It’s just her chest.  There’s plenty of room for the other one on her back,” she said.

Beth worked patiently and efficiently holding Rose’s skin down with one thumb as she peeled off each succeeding sticker.  Rose sat quietly on my lap the whole time, not complaining, barely reacting to each peel.  The equivalent of a dozen band-aids were pulled off her chest and moved without a complaint from Rose.  She was exhausted.  Finally, the sensor sticker relocation was complete.  Beth peeled open the first of the white packages to reveal a large gray adhesive backed pad the size of my hand.  As Beth pressed it to Rose it seemed to cover her entire chest. 

Beth opened the second package.  “This will go on her back.  Just turn her a bit.”  I turned Rose on my lap.  Beth pushed Rose’s hospital gown aside and pressed the second grey pad to her back. 

“These look kind of big.”  I managed to say. 

“That’s just the size we have available.  It’s really just a small electrical charge.”  Dr. Iyer tried to reassure us.  “Ok, we’re ready now.  Bring her over here.”  He motioned to the bed, the crash cart was parked just to the other side of it. 

I stood up slowly, gathering Rose in my arms, careful to reach between all the wires and line.  Cheryl stood along side us, ready to slide the IV pole the two or three short steps to Rose’s bedside.  Dr. Iyer, Dr Fisher, another nurse and Beth stood around the bed waiting for Rose. 

Rose took the scene in and didn’t like what she saw.  Memories of the ER examining table must have filled her head.  With what strength she had, she grabbed handfuls of my shirt, pulling herself into me, crying, “No, no.” 

It was heart breaking.  Cheryl helped separate Rose from me.  We were both doing our best to give her some words of comfort.  I laid Rose out on the bed.  After a minute or so, she realized no examination attack was coming and she relaxed a little.  Cheryl and I held her hands and cradled her head as we waited, as the crowd of six adults stood quickly around Rose; two parents, two nurses and two doctors.

A med was pushed into Rose’s IV.  All of us watched her expectantly, waiting for her to close her eyes and drop into sedation.  A minute or more passed, her eyes were bright, wide open, taking in all of us.  A small smile was on Dr. Fischer’s face, betraying just a hint of amusements or pride, as he watched Rose fight off the effects of the sedative.  She was showing no signs of giving in. 

“Ok, give her another dose,” he said.  Less than a minute later Rose’s eyes finally closed, she was quiet. 

Dr. Fischer started to explain what to expect next, “Ok, you’re not going to be able to touch her or the bed during the procedure.”

He knew us well three years ago.  He was there with us.  He expected us to want to stay with Rose every minute, every second.  Cheryl and I considered the implied offer for just a moment. 

Dr. Iyer cut in, “They can wait in the Family Waiting Room, it’s just outside the PICU.  It will only be a minute, really.” 

“Yeah, we know were it is,” I said.  I looked at Cheryl. We didn’t say anything else.  We had no fight left in us.  We were both exhausted.  This had struck Rose out of the clear blue sky, caught us all completely unprepared.  Our vacation, our lives seemed a thousand miles away.  Yesterday morning when we were packing our camping gear, it would have never entered our minds that we were a day away from being back in the PICU.  And now, we crumbled.  We couldn’t stay to see Rose’s small body jump from the jolt of electricity, however healing, would have torn away any last bit of self control we were hanging onto.  There was no discussion.  We couldn’t stay. Without a word, we both decided to give Rose over fully into their care.  Cheryl and I took one last look at Rose’s sleeping face and turned together and left, arms around each other, leaning into each other as we walked down the PICU hallway, past room #12 and out the PICU double doors. 

A few more steps and we were in the once very familiar PICU Family Waiting Room.  Cheryl and I fell into the couch closest to the door, our arms wrapped around each other, our heads on each other’s shoulders. 

Cheryl was crying, “Why is this happening?  I can’t take this again.  Why does this have to happen?”

I was too numb for tears.  “I don’t know.  I don’t know.”  We were back there again and we were still here.  It was three years ago and it was now.  We were reliving those moments, magnified by every time since then that we had considered Rose’s fragile mortality.  How had she survived so much?  When would her next challenge come?  Every worst fear from every minor illness came crashing down on us.  It was more than we could bear.  We held each other and cried.  

Less than a minute later Dr. Iyer popped into the Family Waiting Room looking for us.  He was almost bouncing up and down.  He could barely contain the big smile on his face, “Come on, come see her.  It worked perfectly.” 

We composed ourselves quickly and followed Dr. Iyer back into the PICU to stand at Rose’s bedside again only moments after we had left.  Rose appeared to be sleeping comfortably.  Over the head of her bed, the monitor showed Rose’s heart beating at about 110 bpm drifting slightly, varying its pace with natural demands of a sleeping Rose.  The lock on 163 bpm had been broken. 

I looked at Dr. Iyer, “Just like that?” 

“It’s quick.  That’s all it takes.  Within a beat or two, it’s back to normal.”  Dr. Iyer said. He was trying to contain himself; he had been confidant that he had the right diagnosis and right treatment for her cure.  And now, in the span of one of Rose’s fast heartbeats his confidence had been proven right and our tears had been proven wrong. 

The room around Rose was transitioning from an impending critical medical procedure to the simple, more pleasant needs of a three year old soundly sleeping.  Beth helped Cheryl settle Rose into bed.  The other nurse was stowing the equipment for the crash cart, getting ready to pull it out of Rose’s room.  I was caught in the middle of a conversation between Dr. Iyer and Dr. Fischer.  Dr. Iyer pitched his words towards me but I could tell by his body language that he was expecting a reaction from Dr. Fischer, “Well, she looks good, she could really leave the PICU at anytime.  She could go back to a room on the medical floor.” 

Things were happening too fast for me to comprehend.  My tattered nerves were just were just starting to recover with the realization that Rose had been jolted back to good health.  The joy, the giddiness that comes with a life renewed was just starting to sweep over me.  I didn’t know what to say. 

Dr. Fischer cut in, “She’s staying here.  She’s staying here until she gets discharged.” 

Dr. Iyer said, “I don’t think that’s really necessary.  She’s stable now.  She would be fine on a medical floor.” 

Dr. Fischer cut him off with a shake of his head, “No.” 

I was still flush with the joy of seeing Rose’s heart rate return to normal.  I mumbled, “Whatever you guys want to do is fine.” 

Yeah, like I had any say in the matter.  Dr. Fischer was the intensivest, the PICU was his unit and Rose was his patient, again.  His word was final.  I was amazed to see his reaction.  He had been ‘There’ with us.  He had been through so much of it with us, always being reserved, controlled, professional, never betraying more than a hint of emotion, just degrees of tension, whether at the most fearful or joyful moments.   And now I saw just a little more than a hint of how Dr. Fischer felt about Rose.  He had seen all of what Rose had gone through.  I imagine there’s a special bond between doctors and their patients that defy the impossible.  Rose had given him the gift of hope when all hope was gone.  It was a precious gift to be protected, at all costs.  And now Dr. Fischer’s firm stand said that.  Now he was going to do everything he could to protect that gift.  And now he had her life in his hands again and he was holding on tight.  Rose was staying right where she was

It was a considerable relief to here that the cardio version was a success and Rose’s heart was as healthy as it could be but we wanted to hear it from Rose herself.  She was an active, imaginative, playful three-year old.  We wanted to hear it from Rose in all the wonderful things that she does that she’s healthy again.  But Rose wasn’t ready to tell us yet.  She was exhausted from her week long arrhythmia, culminating in the car crash and then all the efforts in the ER, on the medical floor and then in the PICU to set her right.  She slept the deep sleep of a well earned rest, with her heart beating strong and under a heavy blanket of sedation.  We would have to wait. 

The room returned to a quieter pace.  Beth checked Rose one more time and then left us alone.  She had made her assessment.  Rose would be fine.  Over the last day, Rose’s health had slid hard to critical condition.  She had needed a room full highly trained doctors and nurses to bring her back.  Now, within moments her health had swung back hard the other way.  She was healthy enough now to be left in the simple care of her mother and father. 

Cheryl and I settled into a long afternoon of waiting for Rose to wake up, our nerves still jangling through the emotional extremes of the last day.  Feeling the joy of Rose’s recovery but still imagining the worst possible ‘what if’s’.  But daily routines started to slowly seep back into our lives, as we we’re frequently reminded by the nurses, we needed to eat and sleep when the time came or we wouldn’t be any good to anyone.  I left the PICU to visit the cafeteria to collect a lunch tray for Cheryl and me.  We sat in the room and ate our lunch quietly as Rose slept. 

Mid afternoon Cheryl and I looked up to see my sister, Anne, and my father standing in the doorway to Rose’s room.  They were both tight lipped and quiet, fighting back tears.  Anne managed a quiet, “Hi” for both of them.  This was their first visit back to the PICU in over three years.  There had been no well visits for them to soften the memories and now they were back there again where they had stood around Rose’s bed with a family of aunts and uncles and all four grandparents, praying for Rose to be delivered to something, to anything better, and then seeing their prayers answered in a way that they had been told wasn’t possible.  They were ‘there’ still but now, here we could reassure them right away that Rose was going to be all right.  We hugged and cried and told them all the events of the last day, at least as best as we were able to understand and relay.  But our assurances seemed to do little to lift their spirits.  They were both pretty somber as we stood by Rose’s beside.  Rose slept on. 

Soon Cheryl’s mother came by with Cheryl’s Aunt Jane and Uncle Bill and we relived the last day again; filling them in on Rose’s stay in the ER, overnight on the medical floor, rushing to the PICU for the first available room, the cardio version and now a soundly sleeping Rose, Cheryl’s mother took a deep sigh and shook her head.  She, too, had been there with all of us and now she was overwhelmed to see Rose back in the PICU again.

Initially conversations centered on Rose and recent medical problems but, fortunately, soon the conversation drifted to other topics. How were Erin and Katie doing? What were they up to these days? And then the conversation kicked into high gear with four people in the room over seventy years old some kind of critical mass of recollection had achieved.  For the next hour or so my father and Cheryl’s mother and aunt and uncle shared stories about their common experiences growing up in the depression, living through World War II and raising families full of baby boomer children.  Common experiences and acquaintances were discussed in a near endless stream of shared stories. 

I stayed by Rose’s bedside, having fallen back into my old bad habit of studying the medical monitor and then watching Rose, still nervously waiting for Rose to wake up.  The conversations seemed bizarre to me in the context of the PICU.  After an hour or so conversations quieted, there were errands to be run and dinners to be cooked, our families said their goodbyes; we assured them we would call them when we know anything more.  And again Cheryl and I were along with a sleeping Rose.

In the late afternoon Rose finally rewarded us with open eyes.  Despite Beth’s frequent reassurances that Rose was fine, that she was just sleeping off a heavy dose of sedation,  my anxious hovering may have caused Rose to wake before she was ready, Rose was awake and we were glad to see her open eyes again but she was still very tired and lethargic.  She seemed disoriented and confused.  We scooped her up and took turns holding her in our laps.  Rose just wanted to lean into us, to hold us tight.  Her dinner tray came and just sat, she had no interest in eating, even the promise of her favorite meal of hot dogs and a cold drink of milk couldn’t raise her interest.  Rose still seemed exhausted from everything she had been through the last day or few days or weeks. 

At one point Cheryl and I maneuvered Rose through the tangle of her lines back into her bed.  Rose lay propped up against the pillows of the inclined hospital bed, her eyes opened but covered with a glaze of exhaustion.  Cheryl noticed a small TV with a VCR sitting on a cart in the corner of Rose’s room near where the crash cart had stood.

“Do you think she’d want to watch a movie?”

“I don’t know…” I went over and started to browse through the selection of videos on the cart bottom shelf.  Not surprisingly, it was a good assortment for kids Rose’s age but the right choice for Rose was obvious to me.  I picked a tape and pushed the cart close to the side of her bed. 

Rose layback in her bed, watching me through disinterested, tired eyes, I turned the TV on and pushed the videotape in.  The screen came up with a shush of static, as I walked around to the other side of Rose’s bed to stand next to Cheryl.  In an instant the screen cleared.  The tape was in mid-story, a certain big purple dinosaur came into clear view, his familiar voice called out, “Hello, boys and girls.” 

Rose snapped to sitting position, quickly glancing to look at Cheryl and me, her hazel eyes were full open, bright and clear, her mouth rounded with surprise, her flat left hand, the letter B, came up and excitedly tapped her cheek over and over again,  ‘Barney, Barney, Barney.’ 

That one sign with Rose’s full body expression spoke volumes.  She was telling us; is that a TV? with Barney?!  Can you believe this place!  I’m watching Barney in bed!  This is great!!! 

Cheryl and I looked at each other, in stunned disbelief.  In an instant we had seen the promise of a healthy life rush back into fill Rose’s body.  It was an assurance that we dearly needed to hear and there was no better reward than to hear that assurance firmly and directly from Rose herself.  Now we knew she was going to be all right. 

After a moment Cheryl asked me, “Do you think she would want to eat her dinner now?”  I thought about the several quiet offers we had already made that evening, all me with a softly spoken “no”, or a head shake, or sometimes just a blank stare. 

“Yeah, give it a try, I guess.”  Cheryl maneuvered the bed tray over the bed, positioned the plate full of diced hot dog in front of Rose thoroughly absorbed in another adventure of Barney.  The tray caught her attention.  She looked down.  Her expressions leapt again.  There would be no turning back.  Everything about her said, Hotdogs!  This is great!  Hot dogs and Barney in bed!  This just keeps getting better!  Cheryl and I stood by Rose’s bed and completely enjoyed the moment. 

We watched as Rose consumed her dinner like a survivor eating her first meal after days spend wandering lost in the wilderness.  She was back to us again.  We could feel it.  There would be no turning back. 

The rest of the evening the night was uneventful.  Rose slept as well as a three year old can sleep in a bed in the PICU.  Cheryl and I stayed over, just down the hall in the parent’s wing, crammed into our somewhat cramped individual pullout sleepers.  As uncomfortable as they should be it’s amazing how well the both of us have slept there, this time and the last time.  For some reason, unlike many days at home, our reward for a long day of supporting Rose in the PICU has always been an exhausted but restful night’s sleep. 

Rose did wake disoriented a few times during the night.  I took the first call from the PICU nurses at about 2:30 and sat up with her until she fell back to sleep.  I heard Cheryl answer the second call around 5:00. 

Sunday Morning

I fell right back to sleep and woke back up at 7:00, bright sunlight was filling the room and Cheryl was nowhere to be found.  I stumbled out of bed, pushed through the heavy door at the end of the hallway and stepped into the PICU right next to room #12, Rose’s room from three years ago.  Still sleepy I walked down the linoleum tiled floor to stand in the middle of the hallway, directly in front of the nurse’s station, I turned to look into room #6, Rose’s room today.  It was completely empty.  No bed, No Cheryl, No Rose.  I turned to look back at the nurse’s station, caught the eye of a nurse sitting at the counter and just pointed to Rose’s room, hoping for some kind of explanation.  

The nurse figured out my unspoken question, “Rose got moved back up the medical floor.  We thought we were going to have another admission and we were full up and we needed the bed.”  I tried to take it all in.  “Your wife said not to wake you, she wanted you to sleep in.” 

“Thank you,” I said.  I shrugged and then headed back down the hall to collect our things from the parent’s sleeping room.  And just like that Rose’s stay in the PICU was over.  No ceremonies. No waiting around.  The jolt of electricity had quickly ended Roses’ critical moment.  She was well on her way to being a healthy little kid again.  In the triage hierarchy of the PICU she had graduated to the coveted status of being the healthiest kid on the floor.  When somebody else’s child needed help the healthiest kid had to go.  It’s a strange, bittersweet feeling.  She was better which was great but the responsibility for keeping her better had transferred back to us, her parents, in one giant swift step.  She was back on the medical floor where the attention and monitoring was a little more detached.  And the medical floor was just one small step away from being back home where once again her parent’s awareness an alertness would be her first line of action for critical medical care.  It was a sober celebration. 

I caught up with Cheryl and Rose back on the 8^th floor, back in the same room that we started the day on Saturday morning less than 24 hours ago.  The morning went by quick. 

Dr. Iyer stopped by late morning pushing an ultra sound machine ahead of him as he came into the room.  He was in his normal bright, cheery, confident mood as he set up to take an echocardiogram look at Rose’s heart.  His mood dampened just a little as he watched the splashes of blue and red on the monitor.  All the health technology boiled down to a very simple understanding; blue was good, blue was blood flowing in the right direction and red was bad, red was blood flowing in the wrong direction. 

Cheryl and I watched the monitor with Dr. Iyer as he worked the ultra sound wand across Rose’s chest, tapping on the keyboard and spinning the track ball with his free hand.  He zoomed in on a picture of Rose’s heart, a real time picture of every beat of her heart.  The amplified sound of the woosh-woosh pumping of her heart was barely audible in the quiet hospital room.  Dr. Iyer zoomed the picture in on Rose’s left A.V. valve.  It was a mix of constantly changing red and blue patches.  His tone was cautions, he seemed a little surprised at the levels her was seeing.  “That’s a little more regurgitation than normal.” 

“She’s always had some of that.  Could that be worse because of the arrhythmia?”

 “I don’t think so.  There’s no sign of the arrhythmia now, which is good, as we would expect.  But as far as whether the regurgitation is any worse or not I can’t say.  I’m no familiar with how her heart looked before.  You’ll come in for a follow up visit this week.  Dr. Leopold could take a look then and tell you.  He would know better.  He’s been following her.” 

Dr. Iyer went on to explain that Rose was going to be put on Digoxen.  She had already been given a loading dose that morning.  We would give her a dose every morning and every night.  He would start her on a relatively low level hopefully that would be enough to keep Rose’s heart race from racing and triggering the arrhythmia again.  He left us with directions to call the office tomorrow, Monday, for a follow up appointment.  He wanted Dr. Leopold to take a look at Rose in a few days.  

Shortly after lunch Rose was ready to go home.  A nurse smoothly slipped the IV line out of the back of Rose’s hand.  Cheryl and I helped pull off all the white circle tabs used for vital signs and the grey rectangle stickers used for all her EKG’s.  Helping her back into her own clothes was the last step in the transition from PICU patient to kid ready to play.  Rose celebrated by walking out of the room by herself.  It was the first time in a week or more I could remember Rose walking somewhere on her own, even for a short distance.  No hand holding, no extra encouragement required, no carrying her when she stopped and refused to take another step.  Rose was smiling as she took a walk to this floor’s nurse’s station.  Three of four nurses there commented on how energetic she looked, amazed to see the transformation from Saturday morning to Sunday afternoon.  Rose returned their “Hello’s” with hand waves of her own. 

It was time to go home.  Soon I was pulled a red wagon off the floor, full of Cheryl and Rose’s baggage from the last two days.  Cheryl was pushing Rose in her stroller.  A quick elevator ride to the first floor and then out the front entrance to our one remaining car, my old Saturn wagon, barely big enough to hold the five of us.  Rose’s own car seat was strapped into the middle of the back seat waiting for her.  I lifted Rose out of her stroller and started to put her in her car seat like I had done a thousand times before but the first time since I left her in the back seat of a state trooper’s cruiser two days ago.  This is the contrast of Rose in our lives.  Now it was a simple act in the normal everyday routine of Rose’s life, of any child’s life but it.  Then it was sending Rose off with her mom, away from the rest of her family into the unknown.  Now it should be a celebration, a time to re-unite our family and it was but then it was hard to not think about what Rose, what all of us with her, had been through over the last few days.  With Rose, like with any child, or any person for that matter, there are layers on layers of experiences and personality and character.  And the more you get to know somebody the more you learn to appreciate the richness of those layers.  But with Rose, it seems that her layers of life are filled with the sharpest contrasts of the most extreme highs and lows.  And I am finding that the layers are bleeding through on to each other.  Often when I look at Rose I see her everyday kid things on top of her astounding victories on top of uncertainties yet to come.  There’s no separation.  It’s all a part of Rose and I see it all in the same look. 

The ride home was thankfully uneventful.  Even with our somewhat frazzled, somewhat distracted state of mind there were no wrong turns, no driving the wrong way up one way streets, on the short, 10 minute ride home.

 Cheryl and Rose settled in as I went four doors down the street to Joe and Liz’s house to give Erin and Katie the good news, Rose was home.  We were all home, finally.  They ran back to our house, racing to be the first one in the door, with Erin’s long teenage legs carrying her in first, Katie was close behind with me following.  We all just wanted to enjoy the feeling of the five of us together again in our own home.  As much as we had enjoyed our vacation four nights of sleeping on the ground had us looking forward to sleeping in our own beds.  We had had a good time but we were all looking forward to being back in our own comfortable home.  The long slow, hot drive home had made it seem more distant then we had expected.  The car crash and Rose going off to the hospital had made it seem almost out of reach.  We thought our home coming was going to be on Friday, on that day, but somehow time flowed differently and that day never ended.  With Rose critically ill, all our normal priorities and expectations were suspended as our family shifted to care for Rose and cope with her illness as best we could.  We had placed Erin and Katie in another families care as much as their aunt and uncle’s house is a comfortable place it’s still not home, and Cheryl and I had had shifted all of our focus on Rose, comforting her as much as possible, to try to help her whatever she would have to do with as little stress to her as possible.  But with that splitting of our family caused by Rose going into the hospital and the almost harsh decision to have both Cheryl and me stay with Rose to support her our normal family life was gone, hopefully only suspended, but gone as long as we didn’t know what the future would hold.  And that one day seemed to stretch well beyond 24 hours.  There may have been sunrises and sunsets and even some sleep but still it felt like one long day, suspended and stretched to impossible limits.  And now with all of us back together the five of us back in our home again, that day was finally over.  Our summer vacation that had started out as such a modest adventure but had taken such an impossible turn was finally over.  Finally we were all safe home.

The Next Week

The next week was relatively quiet.  We all tried to recover as best we could.  I still had another week of vacation.  I had 2 weeks of vacation back to back for the first time in over twenty years.  I had planned it as a prolonged decompression from what I thought was my hectic job, little did I realize that I would need it to try to support Rose’s recovery as well as my own.  We spend sometime taking care of practical matters.  We needed to get going on getting the van repaired.  The five of us can barely fit in my Saturn wagon, Erin and Katie were really squeezed by Rose’s car seat.  

The next step in the process was answering questions from the insurance examiner.  Apparently my out right confession still required some investigation.  “I’m sorry, it was all my fault” doesn’t carry as much judicial weight as I thought it would.

 On Monday, our first full day home, we were visited by a professional looking young woman.  She set up in our living room with a notebook and tape recorder.  We were all to be interviewed in turn.  Cheryl and I went through our interviews all right, recounting the details of the accident in response to the methodical questions as best we could.  The amount of questions necessary to support an out right confession was mind boggling.  Erin was next.  As a thirteen year old she was amused and a little confused as she received the same level of questions that she just listened to her parents go through.  She managed to maintain her composure as she steadily answered each question, wondering to herself as she did, didn’t this lady just ask my parents all these questions?  They’re sitting right here.  Does she expect me to rat them out? 

Nine year old Katie was next.  She had been somewhat concerned when she had heard that an insurance examiner was coming and that they would be asking questions about the accident.  The clear violation of seat belt laws by three of our family members had her worried.  In our minds this was a relatively minor infraction but in hers it was a serious violation of a lifetime’s worth of training.  We had tried to reassure her, “Katie, just tell the truth, that’s the important thing,” but with all the distractions of the last few days we probably didn’t do a very good job of explaining how, in this case, there will be no consequences. 

Her initial jitters contrasted with what she slowly realized to be an absurb list of questions for her.

“So, how fast was the car going?” 

“I…don’t …know” Katie thinking to herself, am I supposed to know this? 

“What was the weather like that day?” 

“Regular, I guess.” 

“What was the traffic like?” 

“Traffic?” 

“Was there a lot of cars around you or not?” 

Katie shrugged and smiled, she was starting to enjoy being the center of attention but was still not quiet sure what to make of the questions, “I don’t know.” 

The questions turned to the accident itself and the information started to flow as Katie was able to share her version.  She was relieved to make it through the part of the story about being out of her seat belt without any apparent repercussions.  The insurance examiner stopped her at the point of impact, “So you hit the back of the seat in front of you.  Did you hit it hard?” 

Katie was smiling her big theater smile now, she was enjoying all the attention immensely, and a smart looking business woman was sitting across from her, deeply interested in her every word, recording it for future reference, her family sat around her quietly waiting for her answers.  “Yeah, I guess so.  I hit it pretty hard.”  A true extrovert, she was basking in the attention. 

“Did you get hurt?” 

“No, I don’t think so.” 

“Not at all?” 

“Well, my neck and shoulders kind of hurt when I woke up the next day.” 

“Do they still hurt?” 

“No, it went away.”  Katie shrugged like it was no big deal. 

“Was there anything else?”  the insurance examiner continued, with a friendly tone but persistent, like a lawyer following a line of questions, the point they are trying to prove known only to them.

“Well, actually I did get a cut, kind of, not right away, on my forehead, from hitting the back of the seat.” 

“You mean like a friction burn?” 

“Yeah, it came later, maybe the next day.” 

“About how big was it?”  The examiner persisted still burrowing along in search of some unknown answer. 

“I don’t know.  Kind of big, not real big.”  Katie was searching her memory.  Only a few days later it was gone already.  Her clear healthy forehead offered no clues.  An exact description escaped her.  So much had happened. 

The examiner looked at Katie and hesitated.  “Well, you look fine now, I don’t see anything.  What happened to your cut?”  She was probably hoping her disciplined interviewing technique was leading to a nice tidy answer, closure for her tape recorded interview, a tidy “I’m all better” confession but she didn’t know our Katie. 

Katie turned the last question over in her mind.  It seemed fantastic.  Could this be what all these questions were about?  This is where this unprecedented interview was leading?  Well, they let me off on the seat belt thing they’ll have to let this slide.  A little bemused but still with a smile she slowly gave the answer.  “I picked if off.” 

This insurance examiner had finally met her match.  She burst out laughing.  She laughed so long and so hard that the rest of us had to join her.  We were all shaking with laughter, a deep, sprit cleansing, emotion flushing no stop rolling laugh.  She held her sides, hugged herself and laughed on.  Our laughs filled our living room   Finally, she managed her first act of self control, while still laughing she reached to the table in front of her and turned off the tape recorder.  A minute later she was able to talk.  “I think we are all set here.” 

I was half expecting her to try to interview Rose but apparently Katie had done her in.  She was going to accept Cheryl and my explanations that Rose was unhurt in the accident.  She went on to explain that if seemed like everybody was all right but she would keep our case open for a year in case anything turned up later.  She did seem like she was trying to be helpful and was a friendly enough person.  The initial tone of the interviews had been slightly bizarre but it was the contrast needed to set up the emotion purging belly laugh that we all had so desperately needed.  We needed to break from seriousness and it was delivered by an insurance examiner in our living room. 

Tuesday we had a visit from a medical technician.  He was there to hook Rose up to a portable heart monitor for a 24 hour watch. The now very familiar round white stickers were back on Rose’s chest.  This time with a large clear adhesive patch over them to keep them secure on a now mobile Rose.  Almost six feet on line was gathered and tucked into a pouch that also carried the small portable monitor.  Rose would carry the pouch on her hip secured with a belt.  The intent was to monitor Rose’s heart for 24 hours for any evidence of reoccurrence of her arrhythmia. 

As the day went on it became apparent that a small monitor carried on a belt means small for an adult.  For Rose the monitor was a fairly large burden.  She ended up spending most of her playtime with the monitor off her belt sitting on the floor or on the couch.  As long as she played within six feet of slack offered by her monitor hose she was fine.  Rose adapted t it with few problems. 

Night time went better than expected.  The medical technician had warned up that most kids find it pretty uncomfortable sleeping with a monitor on their belt.  He told us to prepare for a night of lost sleep.  Instead, after seeing how well Rose had done during the day just staying close to the monitor instead of wearing, we decided on a different approach.  Before we dressed Rose for bed we slipped the monitor and the cables through the leg of her pajamas pants leg.  Dressed in her pajamas Rose was dressed for bed like any other night except she had four or five feet of cable trailing out one of her pant legs.  After helping her climb in and letting her settle her head onto her pillow, we dropped the monitor into her covers near the foot of her bed.  Rose, a somewhat active sleeper, had no problems.  She rolled around as she always does and slept well.  We all did. 

The next day, exactly 24 hours after the monitor recording had started, Cheryl and I worked together to peel the array of stickers and adhesives off of a very patient Rose.  As instructed we dropped the whole bit into a large brown envelope and deposited it behind our front screen door.  Minutes later we heard a car pull into our driveway and the courier opened our screen door and collected the package.  We never saw them.  One person’s routine work day is part of another person’s extraordinary experience.  

The next day Cheryl and I took Rose back to the Children’s Hospital for her follow up visit with Dr. Leopold, the cardiologist that’s been following her since the day she was born.  He has a very pleasant, supportive but open low key approach that we’ve always found very reassuring and settling.  This day would be different.  At first the visit was pretty routine; the familiar examining room, a nurse taking Rose’s vital signs, a resident taking her EKG, more interested in talking about his lawn care service that anything else. 

Dr. Leopold joined us.  He took a few minutes to reacquaint himself with Rose, sitting alongside her on the examining table, talking to her about how she was doing today and listening to her heart during the brief breaks in the conversation.  We all talked for a few minutes about everything that had happened with Rose’s heart over the last week.  We talked over and over again about the onset of her arrhythmia.  Cheryl and I shared our vague elusive observations of Rose’s declining health.  We stretched our memories back a week, two weeks, three weeks, rethinking the changes we were seeing in Rose’s behavior, challenging ourselves if we could have caught this any earlier.  We were trying to pin the date on when her arrhythmia started, looking for a cause and effect that made some sense but found none.  As best we could understand it was just the slow gradual accumulation of symptoms climaxing and coinciding with our car crash.  Dr. Leopold patiently listened to our rambling conversation and sensed our fears; did we miss any obvious signs?  Did we let Rose suffer longer than she should have because we weren’t alert? Would we be able to catch it the next time?  He tried his best, in his calm quiet way, to convince us that we had done all that any parents could do.  He told us that there was about a 5% chance that the arrhythmia would come back, and more likely to happen sooner in the next few months if at all.  He told us that with Rose’s relatively mild version of the arrhythmia, if it did re occur, it would follow a similar pattern of developing symptoms and we would be able to detect it then just as we had done now. 

We all moved back down the hall to another examining room used for echocardiograms.  This time Rose needed little persuading to lay back on the white paper of the examining table, memories from a week ago in the ER were fading, a few minutes of noninvasive, pain free, time with a doctor was restoring her trusting nature.  Dr. Leopold coated the ultra sound wand with a squirt of warmed clear gel.  He worked the wand across Rose’s bare chest, watching the monitor as he worked the keyboard, the now familiar moving black and white picture of Rose’s heart came into view, the swoosh-swoosh of her heart beat amplified just loud enough to be heard.  Dr. Leopold hit a few more keys, zoomed the picture changed to constantly shifting patches of reds and blues, the swoosh-swoosh continued without missing a beat.  Dr. Leopold started through a practiced list of check points, “Her heart rate looks good.  Well within the normal range.  That’s good.”

He studied the monitor for a minute, the right side of the mirror image of Rose's heart showed a disproportionate share of the mixed red and blue patches.  The AV valve on the left side of Rose's heart was leaking noticeably.  Her left ventricle, the major muscle of the heart, was operating inefficiently.  As it worked to push Rose's life blood out of her body some of it, the red patches, went backwards into her left atrium, constantly re-circulating.  It's the out of sync heart murmur that makes the rhythm of Rose's beating heart unique.

"There's still some valve regurgitation there, some re-circulation there.  We've seen that before," Dr. Leopold said.

"Does that look worse than it has been?"  I asked as I searched my own dim unprofessional memory of Rose's echocardiograms.

When did I last see one?  Not at her three year-old checkup.  It must have been at her two year-old checkup.

"Maybe about the same.  Maybe a little worse.  It's hard to quantify these things.  Rating them tends to be very judgmental," Dr. Leopold replied.

"I was just wondering if the arrhythmia could have somehow made it worse," I said.

"I don't think the two are necessarily related," Dr. Leopold said.  "Rose has a cleft in her left AV valve.  That's why it's not sealing properly ad why we are seeing this regurgitation.  She was so young when she needed her AV canal repair.  Her valves were so small then, as with many babies that age, that it was difficult to properly reshape them.  Now that she's a lot bigger that could be fixed.  There's a procedure available that could just give that valve a little tuck to help it seal better.  It's usually pretty effective."  Dr. Leopold's tone was even, his words were calm and balanced, "She doesn't have to have it done.  It would be up to you.  If you thought you could see signs that sometimes her energy level was lagging or she was having a hard time keeping up when you thought she should.  It would be your call, whatever you thought was best."

Heart surgery again.  The thought of it was hard to bear.  It was so painfully invasive.  Would that be necessary?

"I've heard of some heart repairs being done through a catheter.  Would that be possible?" I asked.

"No," Dr. Leopold shook his head, "this can't be done through a catheter."

I sighed, this was an option we had to consider?  At what point do we, Rose's parents, decide that she needs a performance boost that is worth cracking her chest open and stopping her heart?  How far behind do we let her fall?  How much benefit would she really receive?  Dr. Leopold made it sound low risk, as though it was something that could be reasonably considered.  These types of questions and decisions make me feel entirely inadequate.  In my life I feel like I haven't had the experiences or gained the knowledge necessary to rationally consider this.&nb sp; How could Cheryl and I ask Rose, ask Erin and Katie, ask ourselves to go through open heart surgery again.  In my mind the answer was already forming, there would have to be a very serious need.  As much as I've seen Erin and Katie thrill at their athletic adventures, life itself is a far and away greater thrill.  A performance boost for Rose's heart seemed too small a gain to risk so much even to the small possibility to "the normal surgical complications."

"There are other options," Dr. Leopold went on, "You could consider putting her on medication to make it easier for her heart to work.  It doesn't anything to the regurgitation but it does take some of the load off of her heart.  It's something to think about."

Cheryl and I considered it.  In general we've been very appreciative of Dr. Leopold's calm steady manner as well as his low-key approach to medication.  Like today, at other times he's offered a medication option along with a wait and see option, offering us the possibility that Rose would naturally grow and find a way to adapt herself.  And generally this is our most preferred parental approach as well.

The conversation turned to the difficulties of giving young children medication.  Considerations that were important to Rose and us were flavor and number of doses.  Thankfully so far, Rose was tolerating the twice a day dose of Digoxin.  The medicine when mixed with Juicy Juice seemed to have just the right tart fruity flavor for her.

I pulled out my small pocked sized notebook and I scanned the list of questions that Cheryl and I had prepared the last night.  Dr. Leopold saw the list and polietly took the book from me.  He read though the list, most of the questions we had already touched upon.  Dr. Leopold summarized each one as he read through.  He hit on a new question and read it out loud for us, "Are there any other complications possible from Rose's heart surgery that we should be aware?"  He stopped and shrugged and then went on, "People fill up books with all the different things that can happen but there is really a pretty remote possibility of any of any of the se things happening to Rose.  You really don't want to be worrying yourselves with all those possibilities.  Knowing any of that's not going to make any difference.  I mean you did fine here, there's no more that you could know that you help you, or Rose."

We nodded, accepting Dr. Leopold's judgment.  There was a limit to how much we could know, how much we would be prepared for, and we were probably already well beyond that point.

Dr. Leopold looked back to the notebook, read the next question, our last question, to himself, he hesitated and then read it out loud, "Will this arrhythmia incident have any effect on Rose's life expectancy?"

If things had gone differently we might never had asked this question.  If we hadn't been mortally scared by a return trip to the PICU, if we hadn't still felt panicked and scatterbrained from the last week, we would have never written down such a sensitive question, if Dr. Leopold hadn't taken the notebook, did I offer it, but we did and he did.

Dr. Leopold closed his eyes and gathered himself, by now he had to thoroughly understand how deeply our confidence in life had been shaken.  He opened his eyes and started to speak, his words slow and measured, his tone of voice as calm as he could make it, "No, there should be no impact, Rose should have a full healthy life of thirty or forty or fifty years ahead of her."

We were all quiet as Cheryl and I absorbed his statement.  It was too late to take it back.  The question had been asked and answered.

Dr. Leopold had sensed the depths of our fears, and had done his best to reassure us.  His words, his tone, his posture said to us, ‘Relax, you're going to be okay.  You have years ahead of you.  You can do this.’

We had no more questions.  The exam was over.  Dr. Leopold cleaned the ultrasound gel off Rose's chest.  As Cheryl and I were helping Rose get dressed, we talked about her next follow up appointment,  Dr. Leopold wanted to see Rose again in six months.  We would continue with the Digoxin until then.  If Rose had been arrhythmia free he would consider discontinuing the Digoxin then.

We helped Rose off the exam table.  So she led us out the door and down the hallway to the receptionist's desk.  

As Cheryl made the follow up appointment I watched Rose.  She was feeling good.  This had gone easy for her.  She was smiling and seemed to be bouncing on her feet a bit.  She half listened to her mom talking as she looked around, catching my eyes, and catching the receptionist's eyes.  She felt good, and she was ready to play.  Rose looked up at me, raised her eyebrows as she said, "Ome?", the H silent, in unison with the spoken word, all five fingertips tapped her chin and then her hand flattened and tapped her cheek, leaving no doubt what the message was - Home! -.

Copyright © 2003 Chris McAuliffe

New  Looking Back ...                                

 More than six months have passed now, and Rose has thankfully done very well.  Her recovery has been fast and complete, more than we could have hoped for.  Almost as though, during the weeks of Rose’s building health crisis, she continued to grow but all gains coiled hidden within her, waiting for her return to health to spring forward.  It was a blessing to see her do so well and a blessing the five of us deeply needed.  Having been through critical medical situations before we shouldn't have been surprised that sometimes the events of just a few days can take months or even longer to fully absorb, to come to terms with, to heal from, and to right ourselves again, but we were surprised again.  The normal random changes of a family growing up were a lot harder than they had to be.  On our best days, and we still had them, the five of us were all co-conspirators sharing the same inside joke.  On our worst days, we were strangers with bad intentions

Many times, too often, Cheryl and the kids and I seemed to react poorly to any of life's everyday challenges.  I’m not sure how we were with Erin and Katie or each other.  With Rose it was easier to see our reaction, when with even the simplest tests we held her too tight, held her too close; whether clutching her hand with determination as she crossed a parking lot or rushing to catch her when she stumbled, trying to grab her before she fell, or being overly nervous about the normal new social situations. We were trying too hard to keep her from ever being hurt again, to keep ourselves from ever being hurt again.  But that was impossible.  Life is not like that.  The stumbles and falls come as part of every day.  And every bumped forehead, every scraped knee, every spilled glass of milk was something to cry over.  Old wounds were opened easily.  We didn’t just feel this hurt, we felt every hurt that Rose had ever had. We just wanted to hold her close and safe. .

I can remember one time last fall, two months out of the PICU, I was watching a determined Rose attempt the new "big" eight foot vertical drop slide at our neighborhood park’s playscape.  It took more nerve than I had, I was still always running this ridiculous rationalization, ‘she may be three but she’s been walking less than a year, should I let her do this?’ But Rose was more than ready.  She could see all the other kids enjoying the new slide.  She wanted to be part of the fun.  Rose climbed to the top of the slide by herself.  On her first run down the steep slide, reacting to the sudden drop she splayed her legs wide, wedged her feet hard halfway down and jammed herself to a hard stop in an impossible split that only she could do. My nerves were shattered. Quickly but carefully I pulled her from the slide, hoping she was not hurt.  We sat down in the woodchips at the foot of the slide; Rose curled up in my lap crying. I held her tight, comforted her. Hoping I didn't start crying, too, was all I could manage.  Then I watched in disbelief, as Rose stopped crying, pulled herself together and immediately climbed back to the top of the play-scape, to try again and to crash again.  And then, after another recovery, to see her try to head to the top of the slide a third time was more than I could take.  I had to invoke my parental carrying veto; ignoring her protests, I climbed the playscape, picked her up and carried her home.

Rose doesn't seem too deeply effected by her extraordinary experiences or maybe I just want to believe that, it’s hard to ever really know what a 3-year-old is thinking. She does seem more ready than us to enjoy all the chances offered by her good health and a world full of possibilities to explore.  Although sometimes we can catch a deeper glimpse past Rose's considerable but still limited signing vocabulary and growing but still limited speech vocabulary, into how Rose feels about being a three year old already with more than a lifetime's worth of experiences. 

In December, my dad had been in and out of the hospital a few times, this was more than four months after Rose's stay at the PICU.  It was after a quiet dinner at home and the Cheryl, Erin, Katie, Rose and I were sitting around the dinner table discussing the latest family news.  Rose, sitting across the corner of the table from me, heard the word "hospital" in the conversation.  She raised her right hand towards me in an attention-getting wave.  She caught my eye and I looked her way.

Rose touched her closed left hand to her chest - Rose - and then reached with both hands open, middle fingers touching her chest and forehead at the same time - sick -, she raised her eyebrows in a question.

"Rose sick?" I echoed for confirmation.  She nodded.

"No, Rose," I answered, "You're not sick, you're fine.  Grandpa is sick, but not too sick; he just has to visit the hospital."

Rose smiled and rolled her eyes, the relief rolled off of her.  I could see the memory of her last visit to the PICU in her.  I could feel her think, I'm so glad I don't have to go through that again.  I'm glad Grandpa doesn't have to go through that, tot.  Her memory is clear and full of extraordinary experiences and she seems to have an amazingly mature perspective well beyond what I would have ever expected from a three year old.

It's hard to tell how Erin and Katie feel about everything they've seen Rose go through, about everything they've gone through with her, being born into 4 weeks in the NICU, her heart surgery and trial in the PICU and her latest visit to the PICU to correct her atrial flutter. I think and hope that the urge to re-center themselves after each of these extraordinary events runs very strong through them.  They are very much caught up in the rapidly changing, healthy events of their own childhood.  I think they look to Rose and to us, their parents, for some reassurance that all is well again, that it's safe to move on with their lives, but I am sure that it's likely that I am oversimplifying their reactions because of my own limited parental perceptions.  I do know that all of us, Erin and Katie included, see Rose and her struggles and triumphs in our own uniquely positive way.

I can remember one dinner conversation with Katie that took place a few months before this past eventful summer vacation.  Sometime after Rose's third birthday, memories of Rose's first stay in the PICU were a cloudy childhood memory. Unprompted by anything I am aware of; Katie felt a need to share an important observation.

 "You know, Dad, I know Rose has Down syndrome, but I can't see it when I look at her."

"Really?" I asked, not knowing where this thought came from, or where it was going.

"Yeah."

"Well, Katie, you've been to some play groups with us.  Can you tell when other kids have Down syndrome?"

"Oh, yeah, sure, no problem."

“But you can’t see it with Rose?”

"No, I can't." She was smiling, content with her observation, "When I see Rose, I just see Rose, that's all."

As I thought about Katie's finding I realized, that all that mattered to her was recognizing what she had in common with Rose, the differences were there but the bond of love between them, wrapped through all Katie had shared with Rose was stronger than any perceived differences. Sisters are sisters no matter what and family love is a love we all need.  Sisters find their own common ground.

Amazingly, about the same time I had a similar conversation with Erin which was at the opposite end of the same positive spectrum.  We were sitting around our kitchen table, again, having another lazy moment.  Dinner was over and Katie was clearing the dishes.  Rose had climbed out of her booster seat and was off trying to find just the right book for her mom to read her.  Erin and I were left, sitting on either side of the cluttered dinner table.  I was watching her, either she was stalling as long as possible to avoid her post-dinner kitchen clean up duties or there was something more on her mind. 

Finally Erin started, “You know, Dad, our family is really different.” 

I looked at her, shrugged; wondering what was going to come next. 

“We have three kids in our family, most families don’t.”  Erin was smiling a confident, thoughtful smile. 

“Yeah, sure,” I agreed.  In my mind’s ear I could hear a statistician’s unemotional voice, ‘Average family has two point zero children.’ 

“We just have one dog; most families have a cat and a dog.” 

“OK, sure.”  I wasn’t sure if this was an actual statistic or just wishful thinking on Erin ’s part but I could sense she was on a roll, she was starting to get my attention,

“Two people in our family are left handed.”  She was having fun with her monolog now. 

“OK, true.” 

“We have two parents; you and mom are still married; most families are single parent families now.” 

“Yeah,” I was beginning to sense a turn towards something more profound. 

Erin continued to step through her growing checklist of Things-that-make-us-different-and-yet-proud-to-be-different.  “And mom stayed home.  Mom didn’t work so she could take care of us.  We never went to daycare.” 

“Yes, true.”  Well, I thought, Cheryl did work evenings and weekends as a Rehab RN but in Erin ’s going-off-to-and-coming-home-from-school perception, this counted as being a stay-at-home mom. 

Erin was circling closer to the heart of the matter; she hesitated just a moment, gathering herself for the final leap.  “And then there’s Rose, everything she went through … being born ...  with her heart surgery…. just the way she is…. She’s definitely different.”  Everything about Erin said she was glad for all the things that made us all such a uniquely different family.  She was proud of the differences and she wanted to recognize and celebrate them.  This insight was at the heart of her special bond with her unique little sister and her even more unique family. These experiences were helping her gain an exceptionally strong and positive understanding of the changing order of our lives, a perspective she was very grateful to hold.

Erin has shown, over the years, a special appreciation of just how very much Rose is capable.  Certainly during those trying days in the PICU after baby Rose’s heart surgery, more than three years ago, Erin ’s faith in her little sister was unshakable.  And weeks later, when we were all home together again, hiding from another New England July heat wave in our air conditioned house, I remember another silent testimony of Erin ’s belief in Rose’s limitless abilities. 

Cheryl and I were frazzled, taking turns caring for Rose, still unsure just how healed her fragile shell of a body was.  In between, I was trying to grab a few moments to watch the Tour de France a grueling three week long professional cycling race that’s a major sporting event in Europe and yearly passion of mine. I sat with Erin during one of the first televised updates; American Lance Armstrong was doing surprisingly well.  Years earlier as an up and coming star, he had attempted a few Tours and had shown flashes of brilliance but never challenged for the treasured overall lead.  Then a life threatening battle with testicular cancer had sidelined his cycling career for two years. The cancer had spread through out his body.  Now, after scarring experience of chemo and radiation to treat lung tumors and surgery to remove brain and testicular tumors, somehow, against the odds, he had survived, regained his health and reclaimed enough of his conditioning to make a return trip to what is generally considered to be the world’s most demanding athletic test.  And then, somehow, impossibly, he had leapt into the lead on the very first day of the race.  That combined with his miraculous recovery was now the focus of an intense media spotlight. 

The interview played out. Yes, he was grateful to compete again.  Yes, now twenty pounds lighter his body had been physically transformed.  And, yes, he was mentally, emotionally and spiritually transformed; he rode not just for himself but for cancer patients and cancer survivors everywhere.  The interview strayed back to the practical racing challenge at hand; could he hold on for the win?  He wouldn’t answer that question, the race was too young and he was too sharp a competitor to ever offer a guess, but it was clear he wasn’t going to say no. 

I watched Erin take this all in.  Somewhere during the interview something clicked in her young ten-year-old mind, listening to Lance’s answers she heard the strange blend of the supreme confidence of a world class athlete mixed with the humility of a cancer patient and the gratitude of a near death survivor and a  parallel was clearly drawn.  Somewhere between his words and the look in his eyes she recognized an amazing quality, one that she had only just become personally aware of in the last few weeks of her life; the will to live, to survive and to recover and thrive, even when it seems like all hope is gone, it’s not, and the impossible is possible.  She saw it for the first time in her three-month-old little sister, and now, so soon again in her own young life, she clearly recognized that quality again.  

I watched Erin take all this in but I didn’t understand at the time.  After the interview was over I asked, “So, Erin , do you think he’s going to win?” 

She looked at me, clear and confident, no doubt in her voice, “Yes.”  It couldn’t be any other way and of course she was right. 

And today, more than ever, for those of us that know Rose well, it’s a parallel we can all understand.  Rose may never race in the Tour de France (or she may) but she’s all ready claimed many greater victories.  Whether 3-months-old or three-years-old, Rose has faced her challenges and survived and healed and thrived.  And to her we give much of the credit.  She certainly had a tremendous amount of medical support during these crucial moments, and we deeply appreciate all the help, but still it’s to Rose we give the greater share of the credit for her own victories.  It’s a wonder that the same person full of so many disabilities can also seem capable of the impossible.  It’s a strange, sharp contrast that we, her family, have come to deeply appreciate.  Through her special abilities, she has overcome many challenges, that none of us, even much older and allegedly more capable, would dare to face. 

There is a mystical quality about Rose’s ability to survive but there also seems to be something beyond her that’s touched us all at these crucial moments, when we’ve looked back over these life and death moments we’ve realized that the chain of events have just been to extra ordinary to be the results of human action alone.  Erin calls it “Fate,” Cheryl calls it “the love that’s God,” my father, more the traditionalist, calls this special presence in our lives “the hand of God.”

I’m not sure what to call our special benefactor.  I’m having a hard time believing that God is keeping tabs on us and our little Rose, stepping in when we need help, subtly altering the course of events as needed.  My faith has been based on a belief in our gift of free will.  It’s a concept my rational mind can grasp; we humans live in this world and we make our choices and how those decisions interact with the choices of people around results in the world we all live in.  It makes sense to me but maybe it’s a little too conveniently neat and tidy for my straining-to-be-rational mind. 

In the week after the car accident, the five of us were sitting around talking over the improbable series of events that led to Rose receiving her needed medical care

Katie ticked off the list; “Rose is getting very sick-nobody realizes how sick she really is – dad’s about to turn the wrong way and drive away from the hospital – God makes the car stop suddenly in front of him – dad hits the car – State Trooper comes – takes mom and Rose to the hospital – Rose is saved!” 

 “Wasn’t there a way to do this without having a car accident?”  Even though this scenario absolves me of direct responsibility for the accident I still have to question it.

 “No!!!”  Erin and Katie both yelled back at me.

“So God makes me smash into the car in front of me so Rose can go to the hospital?  Really?”

  “Yes!”  comes their emphatic answer, playfully exasperated that I just don’t seem to get this cosmic connection.   I’m sure they’re thinking, ‘Where’s Granpa?  He’s always saying something about ‘the hand of God’.  He’d understand.’

I looked to Cheryl for some sympathy but she just shook her head.  I was alone in my hesitation to make this leap of faith.  And now I still don’t know what’s holding me back.  I suppose I’m trying too hard to have things make sense, by my own definition of whatever making sense, means, I need to know what to expect, that the future for my family holds many more happy days than sad, that our lives will follow some kind of predictable, understandable progression.  But I am learning that I am asking too much of a future that, for us or anybody, holds no guarantees.  It seems best now to let go of any expectations, or keeping letting go, and hold onto our beliefs as new expectations form. 

And expectations with Rose are growing into a strange paradox.  Initially, when Cheryl and I learned that we were going to have a third child, our thoughts and dreams raced ahead.  Would this child be like Erin or Katie?  Or entirely different?  One major lesson our first two children taught us that even though they have the same parents and a similar up bringing, children will have their own, very distinct personalities.  When we found out Rose was going to be born with Down syndrome the initial news was crushing, our ignorance overtook us and for a while we let go of any positive expectations.  We simply had no idea what to expect.  We held our breath during Cheryl’s pregnancy and then did our best through Rose’s first few months of medical challenges allowing ourselves to live only in the moment, never even letting ourselves think even a single day into the future.  But the toll was considerable and all of us have needed years to recover. 

Overtime, with a little education, but mostly from watching Rose’s growing capabilities, our expectations for her future, for our family’s future, has taken root again and grown as well, slowly, day by day, we’ve learned as Rose has learned.  We’ve learned that we can handle these crucial moments maybe just barely within our own limited abilities to adapt and grow but we can do this.  And we’ve learned to watch for the repercussions from these moments that send ripples of disorientation, of unsteadiness, of upheaval through months and years of our family life.  A medical crisis can pass in a moment but it can come back a thousand times in many unexpected ways, just under the surface of what should have been a minor problem, magnifying reactions in ways that otherwise wouldn’t have happened.  Knowing to expect this and attempting to be patient enough to recover through these ripples of repercussions has been a hard but necessary lesson to learn.  Realizing that healing just like growing, is an ongoing process, the deeper the wound the longer time to recover, and the wider the implications; one child might be sick but a whole family needs to heal.  But learn we have and heal, we will. 

I feel I am just starting to appreciate this paradox that is Rose; sometimes struggling with her range of development delays, other times showing a maturity and a grace well beyond her years, and sometimes we stumble with our expectations and other times we have experiences unlike anything we would have imagined. 

As I look back on this time around, I am starting to understand the answers to the simpler questions; the ‘who?, the ‘what?’, the ‘where?’ and the ‘when?’.  But there is one basic question I am afraid to ask, or to turn over and inspect too closely, and that’s the ‘why?’  Not why we have Rose, I know that answer; she’s the child that Cheryl and I always wanted, just like Erin and Katie, she’s ours to love, and she loves us.  The ‘why?’ I am afraid to ask, is why has Rose been helped?  For what purpose has intervention come at these critical moments?  Rose certainly deserves to live but any other people do, too, and yet they often succumb to their medical problems.  I don’t know, I think I’m afraid to ask because to question this is to risk taking this magical gift for granted and when the gift is so precious and vital this risk should not be taken.  I won’t understand this.  I don’t deserve or need an answer.  I will have no expectations, now or later.  If I dare to ask this question again, in her own time and her own way, just like Erin and Katie, if I am careful to watch and listen, Rose will tell me the answer.  

 So I’m working hard on letting go of the expectation that the events in our lives have to make any sense to me.  I’ve thought over what we experienced I’ve tried to listen to what Erin, Katie, Rose and Cheryl have had to tell or show me.  So now there’s what I think happened.  Cheryl and I were driving along with our precious charges of unknown potential; Erin, Katie and Rose.  We were faced with a parental decision with consequences far beyond our mortal ability to grasp and through our lack of understanding we made the wrong choice at a critical moment.  But, somehow, fate smiled at destiny and the hand of God reached out to us, and not so gently, set us back on to the right course.  That’s what happened, honest, true story.

The End

Copyright © 2006 Chris McAuliffe