Real Life

Two weekends ago, Mark and I went to our second annual MDSC conference. We learned A LOT, as usual, but it was also a chance to join hands with the New England Ds community. And let me tell you, it is a force to be reckoned with. Picture parents, siblings, relatives, educators in sessions taking notes, nodding heads, and asking questions. We are all there for one reason--we have a little (new or old) with unique needs and we are on the hunt for unique ways of meeting those needs.

Picture about a hundred or more teens and young adults with Ds rocking it out on stage, lights flashing, music pounding, waving banners they've made about their "Real Lives." About ten step up to the microphone and tell us a little about their everyday lives, their interests, their hopes. Picture parents and grandparents, aunts and uncles, brothers and sisters, teachers and aides in the audience clapping, cheering, and wiping tears away--because the victory dance is joy unedited. And we remember that even though most us never volunteered for this, we still chose to be here together, today.

And there are some that have volunteered--adoptive parents, step parents, educators. In this place, they are the real heroes. Over cake and coffee, we share. The woman to my left is here with her nephew G because G's mom passed away and we're all brushing tears off our cheeks to hear it. To my right is Mark, then my Mom, the devoted Grammy who has tied her heart fast to my boy. My mom has brought a colleague and friend with her--we'll call her B. B has three new stepchildren in addition to her own; her youngest stepson has Ds. She's here as a new mom, a mom parachuted into the thick of this life. She's full of questions, full of hope for her son. To her right is a couple from Connecticut. Their daughter is 16. "I wasn't going to do this," says the woman and reaches into her canvas bag.  She pulls a book out--her memoir that she's written with her best friend. Just Cate, it's called. She signs a copy for each of us.

We've known each other for exactly 90 minutes. In that short time pictures have been passed, stories shared, tears cried, and it's hard to pry ourselves away; but there's another session and I'm off with my mom to learn about potty training, while Mark and B head to the session on neuroscience and education. At the end of the day, there's always more work to be done, more planning, more tweaking of approaches and methods. More figuring out how to raise the bar for our kids, ourselves, more plunging ahead even if we're feeling our way in the dark.

It's real life as we know it.

The longer I'm in this parenting thing, the more I realize that feeling my way in the dark is just part of the scene.  It's not just part of special needs. Lately, I've been agonizing over many things related to all my children--why does E sometimes give me the cold shoulder when she's upset, instead of running into my arms? Is this part of growing up? Part of her personality? She's the oldest. Are we too hard on her? Is that why she pushes away? I don't know.  And where should we send A to preschool? What's the best fit for her? for us? What if I make the wrong decision? What if I screw up?

I will screw up.

Finding peace with the learning as I go is hard for this perfectionist who only wants the best for her kids but may or may not drive everyone around her batty with her constant indecision.  Last night I was reading the memoir I mentioned earlier, Just Cate. In her chapter "Trust," the author Noelle Alix quotes Ralph Waldo Emerson. "Finish every day and be done with it. You have done what you could. Some blunders and absurdities, no doubt crept in. Forget them as soon as you can, tomorrow is a new day; Begin it well and serenely, with too high a spirit to be cumbered by your old nonsense" (175). Oh, if only it were that easy for me. It's something to strive for, though. Trusting that doing my best is going to have to be enough, being OK with the fact that I will make mistakes along the way, cultivating a willingness to admit when I am wrong and move on--those are good, real life lessons everyday parenting continues to teach me. 

Being at that conference was a good reminder.  We could have gathered in that place to lament all the ways we've let our kids down over the years, we could have wished for circumstances to be other than they are, we could have listed the times we were selfish or tired or cross because the demands of parenting a child with special needs are sometimes overwhelming.  But that's not what we did. We clapped, we cheered, we cried, and we listened to each others' stories. Then we stood up, gathered our emotions and our pens and notebooks and trucked forward to sessions that would teach us how to face whatever stage is next.  What a great way to spend a day, what a great model for real life parenting.
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