Monday, February 22, 2010


Lately I've been borderline obsessed with Charlie complete disinterest in speech. One of the people from the school district came a while back and absolutely marveled at how well Charlie doing using his augmentative communication device (a.k.a. Tina the Talker). I revelled in her compliment for about half a second before turning my agst back on full blast. I mean, the device isn't terribly useful at this point and I find myself yearning for a child who can tell me which video he'd like to watch or even that he's thirsty--I'm only human! Sometimes I think I've tried it all when in reality he hasn't had a thing to drink in hours.

In truth, I think that I can worry about speech because I feel good about other things. Progress may be paint-dry slow, but I can see Charlie improve physically day after day--his body looks better and moves more freely. I'm addressing his intellect--we cover topics, read books, watch movies, and I see the wheels spinning when he's introduced to new things. He eats; his vision is improving. I could just revel in this stuff but why do that when I could find something new to worry about?

So I worry about speech because it's next--because I can taste normalcy in a way that I couldn't before. In the beginning, I was glad that he could move all arms and legs. He'd make eye contact with the camera and I'd send the picture to everyone in my address book. I was happy for any victory.

I have often been confused by the parents of other children who are angry about their child's disability. Specifically, parents whose children are disabled, but are still able to walk and talk. I'm not saying that they don't have a right to be angry--I think anger is a valid part of the grieving process--but I look at them and see all that they have. They've got walking or talking, hell, good vision. I guess from their perspective, something is missing and that's the thing we focus on--the missing thing. All I can see is what they do have.

Jessica is a fellow blogger who discusses her days as a special needs parent. She posted something recently that hit me square between the eyes and is still lingering. She wasn't looking for pity or even really dwelling on it, but she revealed to us that her son, Connor, has what is considered a "severely life-limiting" condition. He's already lived three times longer than the doctor's original estimates and I can't tell you the number of times I've read about her performing rescue breathing on him because of a seizure. She speaks frankly about her desire to preserve and record as much of Connor's life as possible because they just don't know when it will be over.

I wonder about that perspective too. In the beginning of Charlie's life I was so scared about the future. So scared about having to care for him FOREVER. Scared that I wouldn't' be strong enough to go the distance. What if the opposite were true? What if each day was a gift that I might not get again? What would I do differently? Would I worry less or more? Would I handle it with Jess's grace or crumble under the weight of it all?

How much of our struggles comes from our perspective? How much of it is real and how much of it do we create? Can we do things to make it easier? Can we give ourselves a break sometimes?

I wonder.

Photographs from our recent Ocean activity, putting sea horse stickers in the ocean. Not a hit. In this second picture he's willing my husband to come save him.