I am grateful for the strides he continues to make. It would be a lie if I said seeing his disabilities wasn't ever painful. We've accepted his diagnosis and all the crosses and blessings that have come along with it. Sometimes it still hurts.
Peter knows that his birthday is July 31st. When I ask him how old he is...he gives me some random answer like "it's my birthday". He doesn't understand the question, or get that he will be 11. That hurts....
Every year, our family members ask what Peter wants or likes...and each year the answer is still the same..."Nothing, really." He doesn't ask for anything or really play with anything. Sometimes he will show a spark of an interest in dinosaurs or, right now, in sharks. But it's fleeting. Luke, at 2, surpassed Peter's non-existent pretend play skills months ago. That hurts....
Peter needs to be on a gluten and dairy free diet. He also can't have anything with yeast. Those foods really throw off his sensory system and make him miserable..in turn, making us miserable. Cooking for Peter is a challenge. He has his small list of favorites....and often doesn't want to try new things.(Which is frustrating since gluten free ingredients are often expensive!)
Cooking is so much more than just a meal. I love being able to cook something special for my family to enjoy. A satisfying meal or dessert does so much more than just fill up a tummy! I hate that I can't share that with all of my kids at the same time. I do make Peter gluten/dairy free treats...but even the best ones are no where near as good as some of the "regular" food I make.(Sorry if that sounds conceited...it's just that the texture and the taste just aren't the same.)
I know this shouldn't be such a big deal, but since Peter's diagnosis I don't enjoy cooking as much. It's become stressful always worrying about cross contamination or Peter swiping foods he shouldn't have. (He hid a package of oreos in the couch a few weeks ago...I couldn't understand why he was sleeping so horribly for a few days until I saw him take the cookies out of the couch!)
Cooking just isn't as fun when you feel like you have to guard everything you make!
When Peter was originally diagnosed 8 1/2 years ago, Jay and I went a little nuts and tried to have our whole family eat a gluten/dairy free diet. It was a miserable experiment that no one enjoyed. It lasted a week or two. I still remember the day I decided that it was ridiculous to keep trying. I made dinner with regular spaghetti and meat balls without telling Jay. I still remember Jay's face and tone of voice when he asked me if they were gluten free and I said, "No". A huge wave of relief spread across his face and he said, "Oh, thank God!"
We had even tried "squash fries" when Peter was first diagnosed on another person's recommendation that they were "wonderful" and "tasted just like real fries!" Ummm...no....they don't. The older kids still mention it occasionally...."Remember when mom and dad went a little nuts and made us all eat squash fries?".......
I'm trying to hold onto the funny moments....I'd much rather laugh than cry. Today I will probably do a little of both. But, my main goal, is to make today as meaningful as possible for Peter. And I'm happy that, this year, I think I actually got him a gift he will really love and use.....a camera. He is always stealing my cell phone to take pictures with it and he loves to look at the family photo albums. He also likes to make an incredible mess by taking out stacks of loose pictures that I haven't put into photo albums yet or am saving for scrapbooks (that someday I will get to!!!!). (Ugh!)
Today, I will try not to let the "what if's" or the "if only's" take over my thinking and just enjoy who Peter is right now.
I just need to pull the emotional duct tape a little tighter.....
