Saturday, May 25, 2013

What We Know, What We've Learned

I bet you didn't have an afternoon just like ours.  We had a picnic at our house.  A gathering of families who have a young child with Down Syndrome. 

My cheeks hurt from smiling.  

As part of the picnic, we prepared a page of "advice" on what we've learned as we raise our kids.  I forgot to put mine out.  Oops.  So, I'm posting it here.  It's lengthy, and not at all pragmatic, I'm afraid.  I can't help it.  This experience has been intense, wonderful, challenging.  I'm just a regular old person, not special, not the 'chosen' kind, so you can see why I shake in my boots when I consider the odds.  Odds are we would not be on this path--1 in 800--and yet here we are.  We hit the jackpot, and it makes me feel a wee bit sentimental.  Anyway, for what it's worth, here are a couple things we've learned from experience:

1.  A unique journey of discovery.

We began our journey with Down Syndrome feeling passionate that with hard work and consistency Charlie could defy the odds of developmental disability. All of my hopes and fears balled up in the process of development.  Developmental progress = Hope = He is going to be accepted, capable, not-so-disabled!  Or, Developmental standstill = Fear = He is different, he won’t fit in, he might be rejected.  Oh, if I could reach back in time to that young, scared parent.  Well, things have changed.  Tempered by the sting of disappointment, really, and also the many children we have met with special needs who challenge our views of how we see value, we have found a balance somewhere in between the poles of believing anything is possible for Charlie and discovering what is possible with Charlie.  No one told Charlie he was supposed to conform to our ideas… not even our hopes.  To compare a child to anything is poison to the soul.  To theirs.  To ours.  Charlie is not what I hoped, wanted, or guessed he would be as a person who has Down Syndrome, and certainly not compared to what we had imagined before we knew.  And that’s okay.  It’s more than okay, actually, because the person he is….  Is amazing.  Complicated, gentle, sensitive, goofy, super creative, an introvert reluctant to live so many moments of his life in the gaze of a community of people who love him.  The point is, Charlie has it in him to be Charlie, and we have the choice to support him as we discover together what is possible, or be tossed by the waves of elation and disappointment depending on where we arbitrarily set the benchmark of “good enough”.  We have learned to choose the former.  We work hard to make sure he has the support he needs to grow, and the rest is all high fives and smiles as we watch him unfold.

2. Alone, but not alone.

There are the mountain tops and the valleys.  I love my dear, long-time friends so much (I love you guys!!).  I cherish their love for Charlie and that they appreciate our situation is different and challenging.  Still, when my group of friends declare “River day!” on facebook, I feel alone.  I want to be there, but at this stage simply packing the car for a day trip gives me anxiety, not to mention the logistics of keeping Charlie and our token 2-year-old from disappearing on the river bar--it takes more physical and mental energy than I have available.  You can see why I tend to pass on River Day and other opportunities with friends.  Yes, there are hard parts.  Even so, one of the most precious things to come from the valleys are the friendships we make with others we meet there.  To be able to walk with someone is so much better than going solo.  So, here is some direct advice: Your experience parenting your unique child will be enriched on your good days, and made doable on your bad ones, if you will advocate for yourself and make those connections.  Your community of friends and family will always be a precious resource--ours are--but to have the chance to feel known in life's valleys is a treasure.

3.  Beauty for Ashes.

Charlie is a paradox: that extra chromosome was not intended to be there—his physical body knows it in cumbersome, sometimes painful ways—yet somehow in this unintended reality there exists potential for blessing that is hardly containable.  Even after seven years I am sometimes hit with the novelty of having a child with Trisomy 21.  I still think, “Wow!  I have a kid with Down Syndrome!  And the thought that follows next is, thank you, thank you, thank you.  It’s a path I never would have thought to choose for myself, or our family.  It is difficult, and sweet all at once.  I am changed.  Ray is changed.  Our younger sons get to learn from the beginning a different way of assessing value and creating acceptance.  And Charlie?  He is a great kid--an awesome son and friend and brother--and in orbit around him is that blessing-potential.  He doesn’t know it; he just quietly brings it with him where ever he goes. 

4.  This too shall pass………..  Eventually.
"This too shall pass."  It can be said about any child’s growing-up.  With our younger sons, the truth of this statement is more immediate.  Drastic, even.  Hard moments or afternoons or entire days pass, and the morning is always new.  Phases pass—the difficult and delightful—and suddenly you can hardly remember the sound of that squeaking little voice, or what it took to marathon nurse a sick toddler through the night.  With Charlie, the passing is slow.  His life is a film watched frame by frame.  The stages are slow.  There are unpleasant issues that seem to last and last, and there are sweet parts that I feel lucky to still have in front of me.  But all of these things pass in one way or another, just when you thought they would never leave the canvas of your life.  “This too shall pass”—the hard and the precious—and we are reminded to continue in hope for tomorrow as we cherish what we get to keep for today. 

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