Uncertainty…Your New Middle Name

Earlier today, I got into a discussion on Facebook with someone who was nervous about the future of her newborn daughter, who was born with a disability.  Uncertainty, to be sure, is a thing all parents face, but for special needs parents, the questions are different, their nature a bit more intense.  Most parents wonder if their kids will go to college, we wonder if they’ll ever be able to live on their own.  Others wonder if they’ll have grandchildren, some of us ponder the concept of sterilization for our kids.  Parents of typically developing kids think about their child’s future career success, we consider whether they’ll even be able to hold a job.

And as the parent of a child with Mosaic Down syndrome, where “good” genes are mixed in with the bad, and eventually outweigh the others for cells that can regenerate, that idea is twice as difficult.  The future is completely foggy as we (secretly, perhaps) wish our child further and further away from Down syndrome.  That’s a place we don’t want to go.  For me, though, long ago I dumped the “Mosaic” and accepted my child as a girl with DS. Suddenly, life was easier and every milestone is a triumph.

The thing is, uncertainty is the path of every parent.  Of course, there are those who will do their best for their child’s future, anything from pushing them gently to controlling their lives, but even then, that principle exists.  I think of a  friend of a family member, who had one son, the only child of her late husband. He was her pride and joy, smart, and a good child, no running around and partying for him.  Their biggest concern was what was the best college they could afford and what his financial aid options were when he was killed in a car accident. No one was drunk or high or anything, it was just a plain old loss of control, no one to blame, a true accident.  Uncertainty showed up for her out of the blue, but I’d rather live with it every day.

That proves that we all have uncertainty, any one of us.  I’m not trying to bring you down, but you and I have no idea what will happen tomorrow.  In 1998, I certainly didn’t, when I had a stroke so severe that my neurologist used the “m” word (miracle) to describe why I was alive. I can remember a year later being on my way to Vermont with my husband, in a tavern ladies room, looking around, amazed at what an absolute miracle life and the simple act of standing and looking in the mirror can be.

I have learned two really big lesson from all this uncertainty:

1. Carpe diem! Sure, bitch and moan when things go wrong, ok, but savor the moments, the littlest things: some good meatballs you cooked, the crooked smile on your kid’s face, the feeling of not being sick anymore when you’re well.  Savor too the big things, like birthdays and anniversaries, otherwise known as days when you beat the odds.
2. Give up control. I found that when I gave up control, stuff like this didn’t bother me anymore.  Control is a cruel illusion.  We really have none, and for me, having faith in a mightier power allows me to sleep at night, since nothing is under my own command except my actions.  It was hard to do, and took many years, and a whole lot of ugliness, but now I don’t sweat the small things – or the big stuff, either. It will work out – or it won’t, and still you’ll survive.  Only my reaction is in my hands, and that, my friends, is real control.  When you are an island of calm in the maelstrom around you, everyone wants to know your secret because they are too caught up in worry about things they can’t control.  This is not preachiness, this is really and truly what I’ve experienced and it’s the most freeing thing of all.

I want to encourage you. When the worry and the frustration and the…uncertainty get unbearable, you need not worry.  You are in God’s hands.  And if you don’t believe that, doesn’t matter … you can’t change what will be anyway, so just sit back and enjoy the ride.