November 10, 2009

The Arc National Convention 2009, or, Why I braved TSA, butt numbness, a brisk run from concourse C to A and rain-soaked luggage

Last night Charlotte and I took a stroll around the house. "Stand up... come on, stand up," I cheerily urged her on. She stood up on her own, but nervously whined for me with outstretched arms. With me behind her holding on to her little hands, she took slow and deliberate steps, her tiny naked toes pressing down firmly, her tiny feet slightly pronated. Oh, these moments, I thought. Mom helping child. Child feeling safe in mom's steady hands. She could walk on her own, but she either gets scared or she simply just doesn't care to try. If she only knew that she doesn't really need me... she could take off, untethered, unaided, unhindered.

But, I ask, what glory is there in not needing someone? ~Need needn't be a negative!~

Charlotte was born with Down syndrome. Her first few weeks were spent in NICU while she recovered from what would be the first of many procedures. During that time, I pondered what changes this would bring to my life, to our family, and how her life would be different from that of the typical child I had been expecting. I didn't spend more than a few days grieving that theoretical “typical” child because it only took a few days to realize what a truly special person Charlotte already was, and was destined to become.

That was over two years ago, and I can honestly say that this beautiful girl has left nothing but happiness and changed lives in her enormous wake. She doesn't walk, or talk much yet. She doesn't do a lot of the things a typical 2 year old does. She does different things. Not better, not worse... different. And, more importantly, she doesn't let that trouble her. As long as someone can help her.

Now obviously, we don't want Princess Charlotte to be carried around forever. She will have to learn to do some things on her own eventually. But for the rest of her life Charlotte will need a little assistance. Her outstretched arms won't always indicate "help me walk" but it's fairly certain that Charlotte will always need, in some way or another, the assistance and kindness of people.

So, how is that different from the rest of us? We all need interdependence in some way. Why would we want to give up this gift of needing others? Being dependent does not negate one's creativity, competence, or individuality. It certainly doesn't negate worth. In fact, in many ways, being dependent only strengthens all these things. It gives us a model for human civility and it gives us confidence to face our challenges. We all have limitations and it's only when we acknowledge and accept our need for interdependence that we can really know ourselves.

So, it is with pride that I carry out the role of one of Charlotte's helpers and with honor that I pursue ways to help Charlotte achieve whatever she wants. I'll be in Pittsburgh this week for the Arc's National Convention where I will learn how I can guide Charlotte, and others like her, to be as creative, as individual, and as competent as I know she is.

Charlotte's little feet may not be carrying her places yet, but her sweetness gets her wherever she wants to go!