A Day In Our Life

Every single morning, Truitt wakes up in the same postion we put him to bed in the night before. He doesn't have the luxury of moving in his sleep, switching positions and adjusting his little body to get more comfortable is impossible. He doesn't move, because well...he can't.

We always have to stretch out his legs first thing, or even a simple diaper change is nearly unmanageable. He loves his morning stretch, and I can imagine it must feel pretty good. I know as a person of healthy muscle tone it still feels good to stretch, so I can only imagine the relief he must feel.

After his morning stretches, which take around 20 minutes to complete, we get him dressed. This is no easy maneuver, not only does he not help like a typical child does by 9 months of age, he resists. Only making another ordinary task even harder. Ever tried putting pants on a child who keeps their legs curled up? It's WORK! Or should I say, a work-out? Ha! And he is only getting bigger, and stronger.

Next comes breakfast. If he doesn't get a good solid hour to wake up fully to his liking, there is no way he will eat a single bite. Zip. Nada. He refuses. So after that golden hour, we feed him a bottle and oatmeal with some kind of fruit. Most days, as in non-school days, we start with the bottle. He takes about 5 minutes just to latch, and if we are lucky he will drink it with ease within about 10 minutes or so. He likes to take lots of breaks though, common with CP because even such a simple task is hard work. Especially with his slight breathing troubles. More or less, nasal congestion. It's tough for anyone to drink with a stuffy nose!

Then comes the food. The first few bites are always with his Topamax sprinkles. He knows they are there, and he doesn't like those darn sprinkles, but he takes it like a man :) Usually...

He does petty good with the food, of course in total Truitt style, he takes a LONG time to eat it. Unless we shovel it in faster, which we have gotten really good at. He doesn't open his mouth for bites, we have to put pressure on his bottom lip and then slide the spoon in and scoop the food out in the side of his mouth. I would guess he usually takes about 10-15 minutes to eat the whole bowl.

After breakfast, Truitt and I play for a little while with Beckett. Truitt still doesn't play with toys. His way of playing, is us playing FOR him. He doesn't hold toys, doesn't look at toys, and quite frankly most of the time he could care less about them. But much to our excitement, he is slowly beginning to show more interest in them by batting at them with his left hand. He loves toys that make noise, play music, or light up. We try to put toys in front of him that he can interact with on his own, and just finding toys that work for him in that way is nearly impossible. I want so badly for him to be able to entertain himself in some way, because in all honesty the thing I struggle with the most is seeing him just sit there.

He can't watch cartoons, he can't "play" with toys, he can't move around on his own to keep himself busy. He sits and yells, he just gets bored. He counts on us for ALL of those things, and we can't do it for him all day every day. It's impossible. I have a house to keep clean, laundry to do and fold, another child to care for and that hurts. It's a guilt I cannot even describe. It haunts me everyday, that I can't give him 100% of my time and attention. Although I spend so much time caring for him, playing with him, and stretching him, it NEVER feels like ENOUGH. It will never be enough, not in the heart of a mother with a special needs child.

The rest of our day just repeats itself, over and over again. Feeding, stretching, playing. Of course, 4 days a week we have school and therapy too. Various appointments come and go, and it doesn't leave time for much else. Our life is jam packed with special needs. It defines our family, and that is okay. I've learned to love that about our family.

Truitt may not live a life like you and I, but he lives a good life.

A GREAT life, and one I often envy.