Every day, everywhere you go, you are reminded of the things that "normal" kids can do. Normal kids who stare at mine while we are out and about. Normal kids who ask questions while being hushed by their parents. Normal kids who can do things so simple, like walking and talking, that my child will never be able to do.
There is a constant absence of time in our lives. Things that might be no big deal for other families require specific planning on our part. And with Isaiah being in a wheelchair, he literally can't go everywhere we want him to go (like hiking, one of our previous favorite activities).
Isaiah's little sister, Belle, is 18 months old. It is so fun experiencing "firsts" with her! Like her first words, first steps, first tastes of food, first dances, first run, etc. Even her first taste of chips and salsa today (she's mom's girl). But it is hard not to be reminded of all the firsts that Isaiah doesn't get to experience. I'll take out my camera to capture one of Belle's firsts, and realize I haven't taken a picture of Isaiah in a while. Then I feel the mom guilt. Guilt that I am happy for Belle's first, how crazy is that?
We learn to celebrate the small things. Our children are miracles. Isaiah had a 3% chance of surviving past birth, and a less than 50% chance of making it past his first birthday, and now he is almost five!
Little things I never would have thought of are a reason to celebrate in our house. Isaiah slept through the night? Score! Isaiah pooped today? Hooray! Isaiah went three days in a row without throwing up? Let's party! These things seem mundane, but they make our lives a whole lot easier when they happen.
Things like getting refitted for his wheelchair, when he can finally sit comfortably again. Getting a stander adjustment, so he can stand up for over an hour at a time. And working with a communication device, which proves that although he can't traditionally communicate, he can process the world around him (more to come on this later).
|One of our joys: what a good little sister Belle is to Isaiah.|