Friday, October 08, 2010

For My T21 Sisters

Yesterday, a mom in our T21 group lost her precious daughter.  Renee was 10 years old, and had Down syndrome and Cystic Fibrosis.  She was a beautiful little girl, and all of us in our "sisterhood" are reeling from the news - saddened in a deep, soulful way, and wishing we could somehow pray it, or hug it, or wish it away.  Why must it be real?

Some of us have commented today on this community of ours - how we are so ingrained in one another by the simple addition of an extra chromosome into one of our children.   How we have extracted so much joy from one another, so much knowledge, so much love.   Yet, we have also handled more than our share of saddnesses, as we have had to say good-bye to many that we loved so dearly.  There have been too many good-byes, and sadly, there will be more.

Just yesterday, I was commenting on another friend's blog about that fear of death, especially in our children with special needs.   I live every day with that fear in the back of my head.   As I said to her, I think it comes from our realization that there truly are no guarantees in this world.  

We have learned that lesson for real, not in the abstract.   We know that statistics, like 1 in 800 babies are born with Down syndrome really doesn't mean all that much until you are that one.  That the termination rate of 7 or 8 per every 10 diagnosed prenatally is just a number, until your heart aches for the real knowledge of what has been lost. 

We are told that when we become mothers, we learn to wear our hearts outside of our bodies.  And all of us would agree that is true.  I could never have even begun to comprehend how deeply I could love, how deeply I could be in love, until Dakotah arrived.  And it is a sustainable love - 17 years later, and I'm missing her terribly today, as she has been off at Leadership Camp for two days.

Two days.   And I can't wait to get her in the house, to find out about every detail of the last two days.  Of course, an hour in to the discussion, I'll forget how quiet it was while she was gone, but I will be happy just the same that she is here.

I feel the same ache of missing Paige when we are apart.  Every day, I am happy and excited to see when her bus arrives.  I can't wait to talk to her, and just be near her.

And perhaps its because Dakotah has begun to spread her arms widely and is ready to fly away a bit that I don't feel quite the same frailty with her as I do with Paige.  Paige needs me for nearly every aspect of her life, and most likely, it will always be that way.   I will be happy and honoured to feel needed by her until my days have come to an end.

Perhaps its because we are aware that there is a very real campaign for eliminating children with T21. Perhaps its because we are aware that sometimes our little ones are born with very real health problems; health problems that make things like developmental delays seem like a walk in the sun.  Perhaps its because so many of us have held vigil for one another's children, as we've prayed, and hoped, and celebrated, and cried.

And, perhaps its because each of us have been thrust, either softly, lovingly, or cruelly and forcefully into a world we knew nothing about.  Each of us carries in our souls that story - that story of when we first found out that T21 would play a significant role in our lives.   Some of us knew prenatally, some of us knew only at birth. Some of us received the news in sweet, wonderful ways, and some of us, not so much.

Regardless, we all carry that "freeze frame" moment.  That exact moment when we realized our lives had changed significantly, drastically, forever.  That moment swept us off our feet, and hit us with the realization that a single moment, a blink of an eye, a nanosecond on a clock, can make our hearts stop beating for a second, can make the whole room feel like one single speck of light.

Since that moment, we have been engrained into one another's hearts, knowing that that single moment empowered us, made us stronger, made us laugh longer and cry harder.   That moment, someone turned the light switch on, and our souls opened a bit wider - just wider enough to fit an extra chromosome into. 

We live with great joy, great celebration, great pride in our children.   We spend most of our days in awe of our luck - the luck of having these amazing people in our lives.

And, we live with a tiny little spot in the back of our minds that won't quite let us forget that real life is just that - fleeting, dashing, flitting about in front of us,  begging us to hold on while we can, because we never quite know when it will change again, in just that blink.

For my T21 friends, and sisters,  who are all wishing we could erase that cyberspace between us right now; who have laughed and cried and celebrated with me, I want you to know you are all very real. 

"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."