I had just stepped out of the shower, still disoriented, feeling strange to be home for the first time in a long time with not need to rush off. I was trying to settle back into some kind of a familiar family routine. I toweled off and threw on jeans and a t-shirt, stepped out into my bedroom and started to search near my bureau for some socks and shoes and then stopped. This was harder then it had to be. The simplest tasks that were once done without a thought now required a focused concentrated effort. After a minute of searching and repeatedly losing the train of thought I gave up and sank to the floor, sat still and listened to the quiet house around me. A few quick steps paddled towards me. Rose turned the corner and sat down next to me, easily folding her legs into a criss-cross. She looked up at me with a thoughtful question on her face
“Wha hap n?”
I was slow to react. Rose’s speech abilities had grown tremendously over the last year but she still benefited greatly from a well trained parent’s ear.
“I’m sorry, Rose. What did you say?”
“What happened?” she said again
“What happened?” I asked. We had carried over the call and response pattern of conversation developed during Rose’s signing days, but really I was stalling for time, for an inspiration.
“What happened? What do you mean?”
Rose considered my question for a moment.
“What happened…to Grandpa,” she emphasized the 'Grandpa' with a sign, her open left hand tapping her forehead with a small wave.
“What happened to Grandpa, Rose?”
“Yeah”
I hesitated, I thought again how much I did not want to be having this conversation with Rose, with anyone, but especially someone as young as Rose, but I could see no way out of going through it again. When Rose had been so sick in the hospital we had made many bargains with reality as we all struggled to recover from the traumatic shock of all the unexpected events. Shortly after I realized that we were all going to make it out of the hospital and back home together I attempted to strike a selfish deal with God. “Please don’t let anything happen to any of our parents for at least a year.” At the time, both my parents and Cheryl’s parents were still with us. In there mid-to late seventies, and dealing with various ailments, they were still very much a vital part of our safety net. Partly my prayer was to postpone the inevitable heart break long enough to allow us to recover from this last shock but mostly I was afraid of anything that might distract or divert our fragile support group. Our young family needed so much help.
Much more than a year had passed.
God made good on my desperate plea.
Rose recovered and Cheryl, myself,
“Yes, Rose, Grandpa died.”
Rose considered this again. Everyday since my dad had died was driving this certainty home for Rose. She knew my dad had died. She had been with us through the wake and funeral, showing a calm curiosity about all the distress around her. At the funeral home wake, she had slowly explored the edge of open casket, following the lead of the countless visitors that had knelt to pay their last respects; but was puzzled by this person that looked only vaguely but behaved not at all like her grandpa.
My stilted explanations of the difference between life and death and the quiet body here and Grandpa’s place now in heaven brought only questioned looks from Rose. Patti Silva, a friend from the CT Down Syndrome Congress local playgroup, had helped bring some understanding to Rose. Patti had knelt to talk to Rose in the wake receiving line. “You know, Rose, apart of your grandpa will always be with you. He’s in your heart, now, honey,” Patti tapped her closed hand over her own heart to emphasize Rose’s connection with her grandpa. This explanation Rose seemed to readily accept.
“Yes, Rose, Grandpa is gone.”
“Why?” Rose asked “Why Grandpa die?”
This question was a surprise but should have been obvious. She was five years old, of course she would want to know why Grandpa had died, unlike everybody else she knew and loved.
They had had a special place in their hearts for each other. Her grandpa had been one of Rose’s biggest cheer leaders, thrilling to her every achievement and finding extra joy in celebrating Rose’s special qualities. Often they shared this bond during Grandpa’s evening telephone calls. I enjoyed sitting next to Rose as her conversations with Grandpa grew. First I spoke her signed responses over her shoulder into the phone, then I clarified her maturing speech and finally I just listened as Rose and Grandpa talked. The two of them had certainly grown a great deal together.
I struggled with the answer to Rose’s “Why?” The parallels between Rose and her grandpa were closer that any child should have to live. My dad had seen the connection during this last year of his life. After undergoing several surgeries and one unexpected recovery my father had smiled and announced to me, “I’m just like Rose” This had filled him with pride and contentment. Unfortunately, now that my father had died, I did not want Rose to draw too closely the same connection between the scars she wears everyday, the distant memories of her own hospital stays and Grandpa's death after many surgeries and months spent in hospitals. I was afraid, that Rose would make the connection between her illnesses, her hospital stays, and her own death, She was only five years old and still I could not avoid this conversation.
“Why did Grandpa die, Rose?……Grandpa was sick for a long time, he had cancer, and he was very old. Sometimes when people get very sick when they’re old they die. It doesn’t happen very often but it does happen.”
I tripped and stumbled over my words. Trying to not deprive Rose of a deserved explanation but more concerned about saying something I could never undo.
“Grandpa was old?”
“Yes, Rose, he was very sick for a long time, and very old.”
“Ooooo..lllll...d….”
Rose stared into space as she slowly, softly rolled the “oh and the
“l” around in her mouth, the “d” was almost unheard.
She long considered this last piece of vital information and then
found the fit. She looked at
me. She was starting to understand.
Our family summer camping trip was to Cape Ann just north of Boston. A pleasant round of camp fires and trips to one of the most beautiful beaches in New England and hanging around the camp site with one very important lesson on pre-teaching.
Three picture from the campsite. Lots of rocks on a hilly camp site is nature's playscape.
Here's Katie and Rose playing in the tidal pools at Wingaersheek Beach No surf but all sorts of rocks to climb over and tidal pools to swim through.
Some great family pictures from walkway over looking Gloucester harbor. I love the candid pictures of Cher, Erin and Kate. Of course Rose decided to play shy for her shot. But the picture of the 3 girls came out great.
Okay, this was our pre-teaching lesson. Its easy to forgot sometimes that you are skipping over details that are especially crucial to a 5-year-old's understanding of the universe. We may have been throwing around words like "duck boat' and "harbor tour" but we never actually did take the time to explain directly to Rose that the funny looking bus-like vehicle parked by the curb wasn't just going to drive us around town. Sure, that part of the ride was fun but once the duck boat headed down the beach and straight out to sea despite Rose's initial and insistent protests and any opportunity for explanations was long gone. No amount of convincing and consolation could win her over. The unalterable fact was that cars stay on the road and only boats float and clearly my parents and sisters have no idea what they have gotten in to. Peace only came with exhaustion. After fifteen minutes of full tilt crying Rose fell into an exhausted sleep. The rest of the ride was pretty quite. Obviously, in 20/20 hindsight we should have spent a little more time explaining that the funny looking bus-thing was also a boat. Oh well. Another important lesson on the importance of effective pre-teaching.
It kind of looks like a boat ...
... We're still on dry land here
Now we're past the point of no return.
All in all, though we did have a very good time
The most demanding challenge that we take on these days is our advocacy for Rose’s inclusion in our schools and into all our lives. Rose is Cheryl and my youngest daughter. She was born more then 5 years ago with Down syndrome. Our first-hand experiences since then have shown us that the greatest limits she will face are those within other people. The connection to a greater purpose is that Rose is not excluded because she has Down syndrome; she is excluded because the mainstream world regularly excludes anybody that is perceived to be different. And we have become aware of an amazing range of differences in how those that count themselves in the majority think, and judge and process and value inclusion. Our ambitious goal, far beyond gaining a grudging temporary exception for one child, is to achieve a lasting broader acceptance for all people of perceived differences. Our wish is to embrace and overcome the differences, the misunderstandings, and the misinformed in all we encounter along the way and make this a shared, positive journey.
We’ve seen our oldest daughters, Erin, 16, and Katie, 12, welcomed into every phase of their lives with an open acceptance granted to them by the nature of their privileged births as healthy, white, middle-class American children with few material wants and no birth defects. I’m sure there are times either of them would disagree but they are both just one Y chromosome away from winning our planet’s birth lottery grand prize. When it came time for them to take their first steps out of our house and into our community we simply signed up, filled out applications, wrote the checks and showed up on time and they were part of the team, in the middle of old friends and new, playing hard and most days having a great time. There were some moments of hurt feelings and tears but there was never any doubt that they were in the game to stay. School was the much the same. We had young parents’ jitters, as would be expected, but success on the first day of school was easy to imagine because we had the clear example of our older neighbors’ children and our own distant school-day memories to reassure us.
Most times being Rose’s parents is very much like being Erin and Katie’s parents. Rose certainly has many of their same advantages but her entry into our world of abundance all too often comes with some hesitation and reluctance and sometimes being Rose’s parents is a completely different experience. With Rose, there are no clear examples close to home. We read and listen and we network and learn but we have seen no first hand success stories. We are aware that some inclusive precedents have been set in our community but we know many negative standards remain to be broken. At times the goal seems so close, the inclusion of children with Down syndrome in regular classrooms that could grow into a lifetime of acceptance seems on the verge of being generally accepted, and at other times the obstacles come unexpectedly and progress is disappointing slow. Early on, in our introduction to the school system, Cheryl and I met parents that were very cynical and disappointed with years of struggle. We were uncertain how much frustration we would encounter along our own family’s journey but be we decided that but for we understood much else that, come what may, we were determined not to become bitter. Our goal as Rose’s parents evolved from the passive double negative to a more direct positive. Our goal is to create the new example as we relentlessly push for her acceptance in a way that improves her life, our lives, and every life we encounter along the way. This is our ideal. As her parents we bring to every situation a unique gift, our willingness to strive for these twin ideals; our demand for Rose’s acceptance and our willingness to accept ours and others’ misunderstandings along the way.
We have seen these challenged moments along every step of the way. More than the everyday challenges within a changing, growing family, more through the unique experiences of being Rose’s parents, we often find ourselves now, more then ever, trying to make our way through new and uncharted areas and all their associated risks. From our first news of Rose’s amniocentesis diagnosis more then six years ago, up to even our last PPT in June with the most wonderful caring team of teachers and therapists, still Rose’s open acceptance was questioned often even with the best of intentions. It has become clear that even the best people, even us, her own parents, will often fail to realize how quickly and easily we are willing to risk marginalizing her acceptance into our community for obvious, discrete, perceived short-term gains.
One
very real temptation is to allow ourselves to be carried along on the
current of choices of others, to let things happen to us, to passively
accept all consequences of others’ actions and quietly place fault with
others. This may be a safe
option in some ways with it’s withdrawal from responsibility into
superficial and submissive relationships where the chances for positive,
meaningful gains are diminished and left to the random bounce of events or
the efforts of others more willing to take a risk.
Our goal is to attempt to actively influence the directions our own lives; to take our own chances, to be actively involved, to not just do what is expected but what we perceive to be fair and correct and possible. We are not going to just participate in the process, more than that, we risk ourselves when we choose to speak up and we challenge the accepted norm. The progress of new ideas often grows out of a healthy clash of opinions. Often even a subtle shift in emphasis, on what’s accepted, can interrupt the expected smooth, comfortable flow of events and discourage meaningful conversations. But we are determined that we will do our best to judge ourselves on how well we gracefully ask ourselves and others to include those we all make out to be different.
When we ask for these changes, we reach beyond ourselves, we move outside of our own comfort zone, we take the chance, that while attempting to make an improvement; we will cause injury to someone else or ourselves. Somebody else will take something we say or do the wrong way or somebody else will be challenged out of their own comfort zone by a new action we choose or insist upon.. Or, we ourselves will take the very real risk of exposing our own ignorance or misunderstandings or inabilities. As we struggle through these challenging moments, the hurts and bruises and insults we perceive directed at us, or fall upon us, as a result of actions and choices motivated by either the best or worst of intentions. Even with the best of intensions when we chose a course of action, hoping to make a positive change for ourselves, or our family, or the world around us, even when wonderfully positive gains are made, we take a risk that we will cause some injury. These feelings, on both sides, can be significant. They can wound deeply. They can take a great deal of energy, exacting a real physical toll, in lost confidence, frayed nerves, lost sleep and distractions that take a damaging emotional toll on these important relationships.
Everybody absorbs and reacts to these injuries in their own unique way. And everybody does or doesn’t recover as well in their own way and often these injuries are not allowed to heal. Anger and bitter resentments can take on a life of their own, casting a shadow across our lives, shutting us away from people and permanently damaging the very relationships that could have formed the foundation for a shared positive change. At its worst, the damage can become magnified many times the original injury, the hurt held on to for years, cutting off repeated chances for positive growth.
The reality is that some injuries are going to be felt. We are all human, it’s that basic, we are not perfect, nothing we do is perfect. I have to expect that to be true everyday of my life with whatever I am attempting. I know I accept it now. So how is it possible that we have the confidence to attempt change? To attempt to build positive relationships? To struggle to expand our comfort zone and not let it collapse down on us with every hurt? To have the faith to hope for a better future that will somehow be made possible through our own small contributions?
I believe healthy change is possible through the awareness and the desire for radical forgiveness for ourselves and for others. Not the everyday, straight-forward forgiveness in the obvious sense of “Say you’re sorry”, and “OK, I’m sorry”. But the forgiveness that understands and accepts that we are all complicated people wrapped up in protracted and convoluted situations. This is the forgiveness that doesn’t wait on repentance or compromise. This is the forgiveness that is willingly to take the first step, to see across the bridge that can divide us and leap beyond the conflict. This is the forgiveness that enables us to nurture change by reassuring, by accepting, by consoling, by humbly and quietly speeding healing.
A vision of a positive future can no more withstand the force of blame and bitterness then a small flower can withstand the winds of a hurricane but no one would ever doubt the need for and the beauty and the truth of a single flower. Be positive. Take the conflicts with confidence, anticipate the inevitable differences and be prepared to support risk with an acceptance and understanding that embraces the positive and releases the negative. Have the ability to foster change and reach for the greater good that is possible when we do break through barriers and draw out the unguarded idealism in others.
This is more for me than anyone else. I feel like I am at the crossroads of my life hit by the mid life crisis of too much responsibility at work and at home and the certain mortality of my own parents with the some of the insights that come from a reflecting on our life experiences but not quite able to translate them into a practical wisdom. Cheryl is much better than me at maintaining a healthy perspective that translates well in social conversations. My own enthusiasm and impatience runs away from me on a regular basis. I do have recently gained knowledge and insights that I hold as dearly as treasures but few people will be willingly to accept my offer to share in them if my abrasiveness and glaring ignorance pushes them away. I need to take a deep breath and allow the natural give and take of vigorous, progressive conversations. I need to listen and think more than I talk. I need to grow my own patience. I need to forgo bitterness, fight the anger of grudges, and release the temptation of unnecessary judgment and the urge to assign blame. In many of the more subtle stressful, complicated changes of this new everyday life there is no actual individual blame. The situations we find ourselves working to change are often the result of the slow turning evolution of society as a whole, aggravated and limited by ours and other people’s personalities and misperceptions, which are themselves a lifetime in the making. In these situations, does it make sense to blame someone for the current state of society? For how they’ve lived lives that have been greatly influenced by others? I don’t think so. These situations are the way they are today because of the unfolding an impossibly complicated series of events. Many choices, both informed and uninformed, have contributed to the present tangled situation. To assign blame to one or a few individuals is to vastly over simplify, compound confusion and distractions and delay real and meaningful progress. Release the negative. Share the positive.
Sometimes, most times, it feels nearly impossible to be this patience and persistent. But I have to realize, not just in retrospect but in the moment, that this is about more than just pushing for a one-child bubble of acceptance. This is about changing people’s hearts so they want to change their minds. Change their hearts and they will change their minds.