Chapter 10: First Steps On Her Own

Stomach Bug                                                                        March 1, 2001
Well, Rose finally caught the stomach bug from down the street.  It started the day after her birthday.  At breakfast she ate a little less than normal, and at lunch time she had pretty much lost her appetite.  By late afternoon, she was throwing up.  Rose would recover between bouts and go back to her normal baby play.  That night, Rose was up just about every hour with the dry heaves, nothing was left to come up.  The next day, Rose was exhausted.  She stopped throwing up, she slept a lot, and didn’t want to eat anything.  It took her a few days to bounce back.

 

Goodbye, Grandpa Pinckney                                            March 10, 2001
I have bad news.  Cheryl’s father passed away suddenly and most unexpectedly on March 2.  This is a hard loss to hear.  Our children have been fortunate to know their grandparents.  For Erin, Katie, and Rose, this is their first loss of a close family member.  We weren’t quite sure how they would take it.  The initial news was a shock and they were both upset at first and then they seemed to calm down some on the days before the wake and funeral.  Taking a lesson from our experience in the PICU with Rose, we decided to include Erin, Kate and Rose as much as possible.  And we also thought that they saw and experienced far more in the PICU then most people will ever experience in a lifetime. 

Cheryl went early to the funeral home to be with her brothers, sister, and mother at the start of the afternoon wake.  After waiting for Rose to wake up from her nap, I took her and picked up Erin and Katie a little early from school.  Cheryl and I had talked to them about what to expect, and I tried to go over it again, but Erin and Katie gave me their boring Dad response, “Yeah, yeah, sure Dad.”  They were more interested in talking about school and what song should be on the car radio. 

When we walked into the funeral home they maintained their confident air until they took literally one step into the room where the wake was being held.  Both of them were stopped in their tracks.  I think they finally caught sight of Grandpa’s open casket out of the corner of their eyes.  Cheryl crossed the room to meet us.  Erin and Katie wrapped their arms around their mom, burring their heads and crying in her embrace.  I stood by, stunned at another unexpected turn.  Cheryl took the older girls back into the lobby to comfort them. 

Eventually they both settled down.  As the afternoon went on, they got braver, venturing further and further into the wake, and usually the excuse was Rose.  Rose was scooting or crawling away too fast, Rose was cruising around the edge of an end table and pulling on a lamp cord.  Rose needed to be brought to her mommy, and of course only a big sister could rescue her.  And on this day, it was Rose’s turn to bring comfort to her big sisters.

 

St. Patrick’s Day                                                                 March 17, 2001

Rose with Erin and Katie and two of her many cousins

 

Doctors                                                                               March 31, 2001

Rose had her check up, actually it was a few weeks ago.  I’ve been a little lax on keeping up with the journal.  I think it’s been a little bit because of the normal rush of family activities; soccer games, swim meets, and evenings at PTA meetings.  And partly writer’s block; maybe I miss the sound of air  rushing over the outside of the aircraft’s fuselage.  Theses things come and go.  Anyway, Rose did well at her checkup.  The results from the thyroid test came back right-down-the-middle-normal.  Rose in now 22 lbs. 4 oz.  and approximately 31 ½ inches long (2’ 7 ½” tall).  I say approximately because that means that Rose has grown only about a ½ inch since her last checkup, but has put on a substantial amount of weight.  It probably says more about the relatively inaccurate method for measuring the baby’s height.  Stretch them out on a piece of paper and make a line at their heels and at the top of their head.  Talk about trying to hit a moving target!  Anyway, as Cheryl reminded me, Rose’s thyroid test was perfectly normal.  She is heavier and she still has that slightly pudgy, lanky baby frame.

~

This will be Rose’s last visit to her pediatrician, Dr. Levine.  Cheryl was in the middle of trying to tell Dr. Levine that we had decided to move Rose to a new doctor, when Dr. Levine broke the news that he and his long time partner were retiring.  Dr. Levine has been a tremendous comfort, especially to Cheryl who usually take Rose on her visits to the pediatrician.  He has a very gentle reassuring manner that reminds me of what a very good country doctor must have been like.  Even with all the tests modern medicine makes available, he often offered assessments based upon what his own observations told him. 

He has followed Rose’s progress all her short life, but he didn’t meet her personally until an office visit shortly after Rose’s excitement in the PICU.  Cheryl and I had undressed Rose down to her diaper, and we were playing with her as we waited for the doctor.  The door opened and Dr. Levine stepped in.  We exchanged greetings and he took a few seconds to take in Rose and her baby play, and then he said, “Look at her.  She looks great.  I didn’t know what to expect after hearing all she went through, but she looks really good."  He stepped closer joining Cheryl and myself at the edge of Rose’s examining table.  He put a reassuring hand on my shoulder and said, “Her color looks great.  She looks like she’s doing really well.”  He reached down and took Rose’s hand in his, “Hello, Rose.”

~

Rose’s new pediatrician, Dr. Mascolo who is actually a family doctor, met us in an unusual way, typical of our new life.  Dr. Mascolo works in the same Family practice as Dr. Li, Cheryl and my primary care physician.  Cheryl had seen Dr. Li for some everyday ailment just before Rose’s heart surgery.  Most of the visit was spent discussing apprehension and nerves about the upcoming event.  

Shortly after Rose’s heart surgery I was in to see Dr. Li for a sinus infection.  This time it was me who was sitting on the end of the examining table waiting.  Dr. Li entered the room and asked, “How’s your daughter, Rose, doing?  Last time your wife was here, she told me about the heart surgery coming up.”  What would have been a five minute appointment turned into a half hour of me pouring my heart out.  It was the first time I had talked in detail about everything that we had been through with Rose, and the words and emotions came spilling out.  Dr. Li was a patient, sympathetic listener.  At one point, she picked up a box of tissues and sympathetically offered it to me as I continued with Rose’s story.  I remember thinking, this has definitely never happened to me before.

            So Dr. Li knew our story.  When Dr. Mascolo came to her later that year, and told her that the baby she was expecting had Down Syndrome, I’m sure that there were many encouraging words of support and comfort shared .  Dr. Li told Dr. Mascolo about our family, and what we’d been through.  Then a few short weeks later, The Rose Page went online and Dr. Mascolo was able to meet the virtual Rose, and read more about what life has been like in our family.  At first, we heard indirectly through Dr. Li that Dr. Mascolo appreciated the stories on The Rose Page, and found them very comforting.

~

            Cheryl met Dr. Mascolo first, when she was covering for Dr. Li.  Her newborn daughter had needed surgery for Hirschsprung's disease, but she had recovered well and she was now home with her family.  When Cheryl relayed their conversation to me that evening, I could sense the warm positive feelings. 

            I finally met Dr. Mascolo recently.  She was covering for Dr. Li again, another sinus infection for me.  We talked for over an hour exchanging stories about our youngest daughters.  Like any proud parents would do, only with an extra special bond.  She thanked me for the Rose Page stories, which was amazingly wonderful to hear.  She especially liked the pictures of us hiking.  I had to think, and then I remembered the pictures from the hike up Talcott Mountain.  It had been our first real adventure as a family of five.  We had been positively floating with happiness that day and the pictures really captured that feeling. (Take a look, you’ll see what I mean).

            The next day, Cheryl told me  she had been talking to Karen T. about a family a few towns over that had a child with Down Syndrome.  They were unhappy with their pediatrician and were looking for recommendations for a new one.  That night, when Cheryl and I talked it over, I think we both arrived at the same conclusion at the same moment, ‘Dr. Mascolo would be perfect.’  As a parent of a child with Down Syndrome herself, she would have a strong self-interest in staying current on the latest health information and recommendations for children with Down Syndrome.  And she was certainly a warm, understanding and sympathetic – or in our case, empathetic – doctor.  But then some doubts crept in:  What if Dr. Mascolo didn’t want us telling people she had a daughter with Down Syndrome?  What if she wanted her privacy respected?  Will she consider this too close a tie between her personal and professional life?  We talked and we knew we needed to check with Dr. Mascolo before we said anything to anyone.  I took the assignment.  For a few days we played phone tag.  I would leave messages with the Family Practices receptionist, “I would like to refer Dr. Mascolo to another family, but I need to check with her first.”  The receptionist answered, “Well, Dr. Mascolo is accepting new patients, I’m sure she’d be fine with that.”  And I would insist, “But I think I still need to check.”  This would get very patient, but slightly confused, “Oh...okay,” from the receptionist.

            We did play phone tag for a few days until we finally caught each other.  I explained to Dr. Mascolo my question, would she be comfortable with us mentioning that she was a mother of a child with Down Syndrome, when we refer families to her?  As Dr. Mascolo answered I could feel tension leaving me and relief lighting me up.  “Oh yes, please.  I would love to have families with children with Down Syndrome.  I was talking to Dr. Greenstein about this recently and we were both saying that there is really no family practice in the local area specializing in this.  I would love to be that practice.  Maybe like a clinic for families with children with Down Syndrome.”  Dr. Mascolo’s enthusiasm was the answer to my unspoken prayers about Rose.  Children like Rose do bring an extra burden.  With all the increased possibility for medical problems there is a need to be extra vigilant.  We really feel the pressure to stay on top of the latest recommendations for health, eyes and ears, thyroid tests, celiac and more.  We felt Dr. Levine provided wonderful care for Rose but we just weren’t sure if he was aggressively staying on top of the latest recommended protocols.  I wonder if  we might just be a little edgier because of everything Rose went through in the PICU.  Not in a demanding sort of way, but more in a way of we don’t know what to expect  from the future. 

            That night at the dinner table when we shared our highs and lows for the day, I shared my conversation with Dr. Mascolo as my high. 

            At Rose’s next Birth to Three visit, Cheryl shared the news with Karen T.

            Believe it or not, it actually took a few more days for  it to sink into Cheryl and I that Dr. Mascolo should be Rose’s (as well as Erin and Katie’s) doctor.  Sometimes you can be trying so hard, concentrating so hard that you miss the obvious. 

            So Rose has a new doctor, somebody that understands a part of us better that most people.  It’s another unexpected helping hand in our journey of raising Rose, and for that we are very grateful.

 

More Pictures                                                                             April, 2001
These pictures are all from the same roll of film.  I couldn't believe how great they came out when I picked them up from the one hour moto photo:

All Dressed Up:

Erin, Kate and Rose in their Easter best clothes.  This is taken right after church on the bench in our front yard just before they ran into the house to change into their play clothes.

Almost walking:

         

Rose's balance is getting a lot better on her feet.  One of the trick's we'd use to get Rose to stand longer was to call out signs for her to do that require both hands.  That way she wouldn't use one hand to hold on.  It's almost like if she didn't think about standing she was fine.

     

Rose's first attempts at walking were to just dive for and catch a hand hold and then move her feet.

Sings and more signs:

This was one weekend morning after breakfast. Rose was playing on the floor next to our kitchen table and I decided to try to take a few pictures of her signing our family name signs.

"Mommy"   "Daddy" "Erin"
"Katie"  "Pepper (or dog)"  OK, just laughing.
 At Play                                                                                  April 15, 2001

 I think one of the neat things about Rose that I haven’t talked enough about is how she plays.  Just like when Erin and Katie were about this age (I think I can remember, it wasn’t that long ago) sometimes Rose is happy to play by herself independently, or sometimes she wants to be in the middle of the action, and to get into whatever Erin and Katie are doing.  And sometimes Rose wants to draw you into her games. 

            The other day I was watching Rose play by herself on the family room floor.  She was playing with her assortment of play characters: chubby plastic figures, maybe 2” tall, boys and girls, men and women, and various animals.  Rose would very carefully line them up on the floor, shoulder to shoulder, all facing forward.  As she worked, she would very carefully crawl on all fours behind, around and over the growing line of toys, sometimes stopping to lean  in closely so she could talk to her group of characters, talking with a non-stop babbling of sounds.

            I caught Cheryl’s attention and pointed out what Rose was doing.  I was amazed. Cheryl said, “Oh yeah, she does that all the time.”  I know there must be a lot I miss when I am not around.

            Rose is still not saying too many words.  “Up” is gone.  The sign has stayed, but the spoken word has disappeared for some reason.  I think it’s one of those cases of ‘two steps up, and one step back’ that we have to learn to expect and to accept.  Recently I was re-reading some older entries, and I was surprised at how many times, over the last year or more I’ve said that Rose is saying “mommy” or “daddy”.  She has made some of the sounds consistently, but I have to wonder if some of it is just my wishful thinking getting ahead of what Rose is really doing.  Part of it might be adjusting to Rose’s unique developmental pace, each step unfolding slowly;  first, the initial attempts, then the struggle to master the new skill, and then the triumph of a new ability attained.  Some things follow this process, some things start at the initial attempt phase for a while, I think speech is one of them, for Rose.  Although the initial attempts at speech are getting better.  Now when Rose signs mommy, while we’re signing mommy back we’ll say, “Rose, say mommy, say mmmmmommy.”  And Rose will sign back, and say, “Mmmmmah.” (The same for ‘more’ or ‘daddy’)

            Another fun toy Rose now plays with is the Busy Beads toy (a series of crazily looping wires mounted on a wooden frame with all kinds different shaped and colored beads that move along the wires).  A friend lent us this toy last year.  I remember thinking at the time, “She’s barely sitting up, but...oh...kay.”  She seemed to think it would be a really fun toy for Rose, and of course she was right.  We frequently park it in front of the TV to try to divert Rose’s attention away from changing channels or opening and closing the drawer on the DVD player (how did she figure that out?).  Rose will go over and grab the toy and drag it out into the middle of the floor while scooting.  She’ll start playing, scooting or crawling around it to reach different beads on different loops.  And if I’m near by, Rose will almost always call me over to join in the play.

            Rose also enjoys playing with the dollhouse in her bedroom.  Handed down from Erin to Katie, and now Rose, it’s full of an odd assortment of people and animal characters, and furniture.  Rose does enjoy playing with it, but if Erin or Katie are in their rooms, usually she’ll make a crawling run for them, whether invited or not.  Usually they’re glad to see her and include her in their play.  In Katie’s room Rose can be dressed up into some of the crazy costumes that come out of the bin of old Halloween costumes.  In Erin’s room, Rose could play some intricate game with her big sister’s old collection of stuffed animals.  But every once and a while, she’s not wanted, “Mom!  Dad!  Rose is getting into my          !”  Normal kid stuff.

            Now with the warmer spring weather, Rose is spending a lot more time outside, and she enjoys it a great deal.  Last week, when both Cheryl and I were slumping on the couches in the family room, tired and run down from our own bouts with spring colds, Rose kept crawling over to the side door.  She would sign “coat” over and over again.  On her own, Rose has made the association between putting on her coat, and going outside.  She was using that sign along with sitting next to the door, to tell us that she really wanted to go out to play.  Well, we didn’t make it out on that day, but we have on many others.

            It’s a little harder for Rose to get around outside.  She doesn’t like crawling, because the ground is hard on her hands.  So usually she scoots.  Cheryl and I joke about how she’s going to wear out the bottom of her pants. 

            For slightly longer trips, like down the street to her cousin’s house, Rose has an assortment of ride-on toys to pick from.  They work well on the driveway and the sidewalk.  Rose will mount up near the garage before she heads down the driveway, she points to the back of her car with an insisting tone.  Cheryl had been sticking a plastic wiffle-ball bat into the back of Rose’s car so she could provide some steering control and braking when needed from a comfortable, upright, adult position.  One time Rose and Cheryl, while cruising down our sidewalk, passed by a younger mom who was bent over and complaining about having to chase after her almost walking one-year-old.  Cheryl laughed in reply and said, “This is how old moms do it.” pointing to the bat handle.  The voice of experience.  So now whenever Rose is heading out on her ride-on car she insists that the bat handle be properly installed in the back of her car.  It’s just the way it’s done, and she’s in charge.

            Another favorite place for Rose to go is the park which is just about a quarter mile stroller ride around the corner from our house.  Rose had been there a few times this spring, and we could tell she really enjoyed it.  But she surprised us when, out of nowhere, she would start asking, insisting to go to the park.

            At first Rose would start signing “slide”.  We would ask if she wanted to go on the slide on her little indoor playscape.  She’d shake off that suggestion, and keep signing “slide.”  Did she want to go on the slide in the back yard?  Again, Rose shook it off and continued signing “slide” over and over.  Finally, Cheryl hit on it, “Rose, do you want to go to the park?”  Rose lit up.  Yes, that was it.

            There’s a lot for Rose to do at the park.  On the big kid’s playscape there’s about a four foot ladder to climb to the top of a slide that Rose can make on her own.  These are a lot trickier than our stairs and you have to watch her, but she does a good job with it.  At the top of the stairs I insist on her going down the four foot slide.  No matter how much Rose wants to  take off onto the rest of the playscape, and no matter how much Katie begs to take rose down the big slide, my nerves aren’t quite ready for that.  Of course Cheryl is much more adventurous then me when she takes Rose to the park.  Rose does get to go on to the upper part of the playscape with mom but ask them about the time they got stuck in the tube slide.

            Rose is starting to learn the sign for “park”.  It’s a little harder and requires a higher degree of skill than the signs Rose has learned so far.  The first signs Rose has learned typically require whole hand gestures, either open or closed.  Rose has picked up on signs that use the index finger fairly quickly, but more complicated hand shapes will take a while.  “Park” is one of them;  right hand has thumb, index finger, and middle finger extended with ring finger and pinky closed, and the heel of the right hand taps the palm of an open left hand.  Rose will try to get the right hand shape, but end up with bent and extended fingers in a random pattern, searching to find the right shape.  She does have the right hand heel tapping on the left open palm, and there’s no doubt where she wants to go.

            Rose has learned an amazing number of signs.  The other day, Rose and I were watching the last 10 minutes of Katie’s softball practice.  The grass was wet from a passing afternoon rain shower.  So I didn’t want Rose playing on the ground despite her repeated requests, signing “down, down”, over and over.  I sat Rose on the bench next to me and decided to quiz her on her signs.  I thought hopefully it would keep her attention, and keep her high and dry off the wet grass.  As I thought of and asked Rose all the signs we’ve been teaching her I was amazed at the growing list.  I’m guessing 50 signs, but I’m going to have to make a formal count soon.

            Well, another long journal entry,  must mean another business trip.  I’m sitting on an airplane flying back east, heading home again.  I just flew out to San Diego late on Wednesday, worked all day Thursday, and now I’m flying back home today.  Yesterday, I did actually get out of work at a reasonable time.  I got back to my hotel just before 5:00 west coast time.  I called back home. It was just before 8:00 on the east coast and Cheryl was in the middle of our busy bedtime routine, but this time without me there, she was a single mom for a few days.  Katie was getting ready for bed and about to say goodnight.  Erin was getting ready for bed, and about to settle down for maybe an hour of vegging out in front of the TV before bed.  Cheryl was in the middle of getting Rose ready for bed, changing into her pajamas, and getting her bottle ready (the one remaining bottle of the day).  I got a chance to talk to everybody.  We exchanged short stories about the day and “I love you’s” and “goodnights”.  Cheryl put Rose on the phone for a minute.  She listened intently to my voice, Cheryl told me.  But no spoken words, not yet.  I hung up the phone feeling very far from home.  I could see my family in my mind’s eye.  Katie is stalling, trying to postpone being sent to bed for as long as possible.  Erin’s heckling her just a bit.  Cheryl’s trying to send her on her way while she tries to give Rose her bottle.  Rose might be interested or she might be trying to slip off Cheryl’s lap and off the couch so she can go play some more.  Sometimes Rose will have a burst of playing energy at the end of the day.  It’s fun to watch her go, but I know it's been a long day for Cheryl and she must be tired.  Usually I handle Rose’s bedtime routine, but without me there Cheryl has to do it all.  I sighed as I headed out of the hotel room, took the elevator down to the lobby and headed out  onto the street.  I started walking, exploring downtown San Diego, but not finding anything.  After almost an hour I found myself walking along the harbor.  There was a three masted tall ship, “The Star of India”, anchored at the dock.  I bought a ticket, and climbed the ramp to board.  It was quiet, not many visitors on a weekday evening.  I walked the length of the ship, up to the empty stern deck.  I took a seat on a bench that faced out over the San Diego harbor.  The sun was just starting to set.  I glanced at my watch, it was almost 6:00, and on the east coast it was almost 9:00.  I thought of my family, again.  I knew exactly what everyone was doing.  Rose was sound asleep in her crib, the most comfortable place in the world.  Katie was sneaking some reading time in bed, hoping mom didn't notice her light was still on.  Erin was trying to stall, hoping mom’s too tired to notice it’s her bedtime.  And Cheryl, Cheryl would just be tired, enjoying a well earned quiet moment on the couch.

            I think about this, and how Rose has changed our lives, changed us, changed me.  A business trip to the west coast seems like a very poor, very frivolous reason to be away from my family.  I miss them.

 

 Rose's Vocabulary Today ~ Updated                                 May 15, 2001

Words Rose is signing ~ it's more than 50 :

These signs Rose really has down pretty good.  She will sometimes use them herself without any prompting from us.  You can see there's a lot of name signs in the list now.  We're trying to assign name signs to people that Rose sees on a fairly regular basis but of course Erin's friends have made quite an impression on Rose.  Even though they're not over al that often they enjoy making up a name sign for Rose and she enjoys learning it.  

There are a lot of signs here. Cheryl and I were almost laughing as we adding up all the signs that Rose has learned.  She does seem to take to it quite well.  Maybe part of it is us working with her but a lot of it seems to come from Rose and her curiosity to learn:

 

Name signs:

Rose - her name sign is closed hand over heart

mommy

daddy

Erin -  right hand tapping back of left hand

Katie - right hand tapping right shoulder

dog - Pepper's sign name is the same as dog

Karen - Karen T made up a tricky name sign for Rose but she got it

Jane - speech therapist

Joe - her uncle just down the street

Liz - her aunt just down the street

Jimmy - cousin four doors down

Tommy - cousin four doors down

Margaret - Erin's friend

Sara - Erin's friend

Casey - Erin's friend (Rose also used this from Erin's other friend Tracy)

Ryan - another cousin

Barnie - big purple dinosaur

Baby Bop - Barnie's friend

Other signs:

eat

more

bottle

cracker - Rose now signs this correctly

sleep - 

all-gone - we made this one up a long time ago - works in a lot of situations

bath - used interchangeably to mean swimming too

please

up 

down

book

yes - head shaking not the hand sign

no - also head shaking, not the hand sign

hi and bye - the traditional hand wave not the ASL sign

toilet

drink

shower

ball

milk

waffles

play

cry

shoes

socks

sandwich

baby

telephone

library

thank you

cheese

bunny

go

boy 

girl

tinwhistle - she made this one up

flower - gets used a lot in the spring time

hat

slide

good

pasta 

beans

eggs

coat

doll 

 

These signs Rose is still working on.  Some new, some for a while.  Some she's starting to get and some she doesn't seem to be too interested.  We do give Rose some leeway on how to do the signs but she has to be consistent and we have to be able to distinguish it from other signs and we will consistently do the sign correctly (as best we can). Eventually Rose comes around.

 

I love you - very tricky hand shape - she tries but its a tough one

cat

blanket

cereal

park

snow

rain

laugh

cow - OK, a lot of animal names from all the kid's books. We don't live on a farm

horse

butterfly

pig

rooster

bird

I

you

your

mine

want

stop

cereal

peaches

where

what

hot

cold 

kids

cup

tree

fish

grandma

grandpa

stand

sit

swing

walk

bad

on

off

open 

close

music

bread - she doesn't seem to want to eat bread so this one hasn't caught on

car

apple

work - the answer to where daddy goes during the day

school - where Erin and Katie go during the day

 

 
Cutest Picture Yet                                                                  May 16, 2001

Katie put Rose's hair up in pigtails and she kept it in just long enough ...

Everybody was all dressed up for church on Mother's day.  This is in our front yard just after church.

 
Catching up with Rose                                                         June 15, 2001
 This is traditionally a crazy time of year for our family.  We’re busy with Erin and Katie’s hectic schedules.  They’re on two different teams.  And they usually play on different days, or if they play on the same day, they play on different fields.  Anyway, softball along with their other end of the school year activities, band concerts and school picnics, have kept us pretty busy, and that’s my long and winding excuse for not having kept up with the Rose page.  I’ll try to make amends and see if I can catch up now.

Actually, softball games have been one of the first significant ways we ventured with Rose out of the comfort of our home and into the community around us.  It’s also one of the ways we’ve marked the milestones in Rose’s young life.

~

Two years ago, Rose was just two months old when Erin’s season started.  Rose made most of the games usually cradled in her mom’s arms.  She was tiny back then, trying to grow to 10 lbs. to get ready for heart surgery.  Often, Rose would get one of her g-tube feedings while with mom in the stands.  Tubes and syringes and strange colored milky fluids were all juggled while Rose was fed.  This unusual set up was accepted supportively from the other parents around us.  Sometimes we would explain but most times they seemed to know.  Probably getting explanations from other parents, many of which we had known for years through Erin and Katie’s school.  These parents, these friends of ours brought us much unasked for comfort and support.  More so in hindsight, I realize that now and I’m grateful for the help.  They were part of a group of friends from town that helped us through Rose’s first attempt at heart surgery.  That year Erin’s season ended dramatically with a close loss in the playoffs.  The next day, Cheryl and I took Rose in  for her second attempt at heart surgery.  That’s when our world was really blown away.  Over the course of two days in surgery, two weeks in the PICU, and three weeks in the hospital, our lives changed forever.  Many of our friends from town, including our softball friends, helped our family through this time with wonderful, unasked for acts of kindness.  We are a better family for their help and for that we will always be grateful.  

~

Last Spring, both Erin and Katie were playing softball for the first time.  Two different teams, so twice as many games for Rose to venture out to.  Rose was now a healthy baby, not quite toddling.  Her heart was fixed.  Her g-tube had been replaced with a button over the Winter, but she was being weaned off of it.  Gradually, over about a nine month period, Rose had learned, with her mom’s guidance, to take more and more of her food through her mouth.  More bottles and baby Rose had not used her g-button at all for over two months.  And was scheduled to have it removed the following week.  

This day was like many of the games we’d been to last Spring.  Rose was scooting around at the time, but during the softball games she would hold court on a blanket we would spread out on the ground.  Rose would usually quickly gather a crowd of kids around her, maybe a half dozen kids crowding onto the blanket with Rose at the center of all the attention.  It was about this time that I noticed Rose’s ability to clearly test older kids’ personalities.  Some kids were just too rough and impatient with her.  Instead of waiting patiently for Rose to initiate play, they would force some action onto her.  Fortunately, they would soon grow bored and move on after a few minutes, leaving behind a growing crowd of more patient kids that seemed to hang on every nuance of every gesture of Rose’s.  

At the time, Rose was just starting to learn sign language.  The kids would excitedly pick up a few signs from us and patiently work with Rose.  Other times they would quietly sit with her, usually a ring of six or more young girls, and simply quietly mimic every gesture of Rose’s, her slightest hand motion or move of her arm.  This may have come out of their first attempts to sign to Rose, but it was wonderful and peaceful to watch.  They would let Rose initiate all the play and follow her lead.  It was the gentlest play I’d ever seen amongst children, and Rose was at the center.

Often this kind of play would go on for about half an hour and then the crowd would drift off.  One day, one young girl stayed long after the main crowd of kids had moved on.  She appeared to be about Erin’s age, a little taller than Erin, but with a slight build.  Although both Erin and Katie have taught me not to judge a child’s athletic ability by their size, I did wonder why she wasn’t playing.  In this moment, there were just three of us sitting on this blanket, next to the bleachers filled with other parents and siblings, along the sidelines of Erin’s softball games. 

I said, “Hi, this is Rose.” 

The young girl said, “Hi, my name is Karen.”

Something about her caught my attention.  She had a beauty about her that shone.  Her eyes, her smile, her body language all radiated kindness and gentleness.  I’d seen flashes of it in other people, but never anyone that sustained and embodied these feelings so thoroughly.  Karen moved closer to Rose and they continued to play. 

After a while Karen said, “Can I pick her up?  Can I hold Rose?” 

I hesitated.  “Umm...I don’t know.”  With Rose’s g-button it could be tricky holding her.  Normally, I never would have allowed a young child I had just met to hold Rose.  I was very protective of Rose, but there was something very different about Karen, I trusted her.  “Well okay, but you have to be careful.”  I started to stumble through an explanation of Rose’s g-tube.  “You have to be careful holding her around the middle.  She’s...uh... she’s got something in her stomach...”  I was struggling.  How do you explain a g-tube to an 11 year old girl? 

Karen brightened more and shot back at me, “She’s got a g-tube?!?” 

I was surprised to hear that medical term.  “Well...yeah...she does.” 

Karen said, “I do too!”  She was smiling the brightest smile now. 

I can’t remember what I said after that, if anything.  Karen picked up Rose and settled her into her lap.  They continued to play quietly for the rest of the game.  I moved off the blanket and sat on the bleachers with one of our long-time softball friends, Leslie Sava.  She just shook her head, smiled, and said to me, “You should have seen your face.  You had the biggest smile.”

~

Now this year’s softball season is drawing to close.  It’s been fun to watch Erin and Katie grow into the players they are today.  Erin scared me at the start of the season.  She had a stand up triple in each of the first two games.  She’s quieted down a little since that first start, which in a funny way is fortunate.  I’m not sure how I’d be able to handle watching her hit a home run (it has a special significance for us), although, there are a few games left to go. Katie’s a lefty and seems to have perfected the art of hitting a slow roller down the third base line, and then beating out the throw to first.  Rose is an almost 2 ½ year old and treats every game like an adventure, searching out excitement wherever she can find it.  I can remember one of Erin’s games a few weeks ago.  After finishing her dinner while sitting with mom and dad on the sidelines, Rose took off, crawling down the grassy hill behind the bleachers.  Katie was having a catch with a friend, and Rose got in the middle of it.  She was the monkey in the middle.  Crawling after the ball, fast as she could, then when the ball was thrown back, changing direction and charging after it again and again.  No g-tube this year.  No medical problems.  Rose’s health is great and she’s getting stronger all the time. 
First Day of Summer                                                           June 21 , 2001
 Well, it’s the first day of Summer, and there’s still a lot of catching up to do on things that happened over the Spring.

Rose had her second eye doctor appointment.  Karen T, Rose’s PT, recommended that we get Rose checked again because she noticed Rose holding objects close to her face while she looked at them.  Well, the appointment went well, still no glasses.  The doctor commented that sometimes small children hold object close just because they want to.  One thing the doctor did notice was that Rose had an unusual pattern of white specs around the back of her eye where the optic nerve connects.  He said a small amount of the insulation around the optic nerve was showing through.  If it was an excessive amount, it would be a problem, but he thought the level Rose had should be no big deal.

The very next day Rose had her first visit to the cardiologist, Dr. Leopold, in almost a year (graduating to the yearly visit level is a major milestone).  As always, the treatment was special.  Rose’s cardiologist’s office is in the children’s hospital.  Going there always feels like we’re coming home to our second home.  Rose had a full EKG, everything looked fine.  Then she had an echocardiogram and, again, everything looked fine.  The patches over the ASD and VSD look good.  Rose has a little bit of a leakage through her AV valves.  On a scale of least to most being: trace, mild, moderate, and then severe, Dr. Leopold rated Rose’s leakage as mild.  Which is fine, no problem, just something to keep an eye on.  For now Rose is just another person with a heart murmur with the usual precautions, like taking antibiotics before visiting the dentist.

Rose also helped out at the children’s hospital telethon again this year.  They’d showed the five minute video clip of Rose’s dramatic days in the PICU from last year and then interviewed Rose for a minute or so.  This was different from last year where Rose sat on my lap while her whole family was interviewed.  I was a bit worried about how Rose would do on her own, but of course, she was fine.  Actually she was better then fine.  Rose just looked at the set as one giant playscape.  It was fun to watch Susan Christianson, the host,  chasing Rose all over the set.  We watched all this action while our video tape was rolling.  Katie came to the host’s rescue by sliding in to help out.  She scooped Rose up and sat her in her lap, slowing her down enough for Susan Christianson to catch up.  Actually, the host tried to improvise and ask Katie a question about her little sister’s experiences, but Rose kept grabbing the microphone and yelling, “Ahh!!!”,  I had forgotten about Rose’s karaoke practice.  She definitely knows what to do with a microphone.  

Here's Rose during her third TV appearance.  She's thinking, "Just move that microphone a little bit closer and I'm going to grab it and yell AAAHHHHH!!!"  and she did.

Here's Erin and Rose on the set

Here's all five of us on the set during a break in the action.

Rose is walking a lot more these days.  She’s been  making good progress and has worked up to maybe ten steps at a time before she starts to lose balance and grabs for support or just sit down.  Cheryl commented the other day that Rose is starting to play for extended periods of time on her feet.  If there are enough toys (or just stuff that interests Rose) placed within less than 10 Rose steps of each other, then Rose can walk around and play in a fairly large area while staying on her feet the whole time.

Rose can now walk pretty far while holding hands.  From our house down to her Uncle Joe’s house, maybe 150 yards, is probably Rose’s record.  Lately, Rose has worked up to just holding onto one hand.  This vastly improved endurance, and confidence, is fairly recent.  The last few Sundays, instead of being carried into church, like she has been her whole life, Rose has walked into church and down the aisle to our usual seat.  Actually it’s quite a commotion.  We’re all so proud of Rose that we’re all fighting to be one of the two hands that Rose holds so we share another one of Rose’s triumphant moments, I think we do make a bit of a scene, but sometimes you just have to laugh at yourself.

Karen T, Rose’s PT, had been saying for a while that Rose had all the skills and strength that she needed to walk.  And now, it’s official, Rose is walking of course, unlike Erin and Katie who went from first steps to accomplished walking in a matter of weeks, Rose has her own ways.  Rose’s developmental steps don’t rush by in a shot like Erin’s and Katie’s.  They unfold slowly before all of us in amazing detail, revealing extra steps in the journey that we never knew existed.
                                                          

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