Tuesday, January 18, 2011

Real Reality...

The reality of Max's life, he needs a lot of special equipment in order to go about his daily activities. I'm constantly moving around wheelchairs, and seats, and wedge system, and a feeding pump IV pole, just to make room for his next activity.

Those are the big pieces...then we have school supplies, and diapers, and blankets, and musical instruments, and toys...everything catered and adapted to Max and his needs.

It's obvious, sometimes glaring, and a reality we live with. These giant, glaring reminders that our lives are in fact, not as normal as we can try persuade ourselves they are.

But, sometimes every once in a while, the light hits the room just right, and I'm reminded that even with all the equipment, and diapers, and feeding supplies, that deep inside we truly do have a 7 year old who would run circles around me if he could.


So very age appropriate. So very all boy. So very not a baby who is stuck in chairs so he can sit up on his own, who takes formula through a tube in his stomach, who has tools to hold a crayon for him, who wears bibs to save his giant onesies from the slobber he can't control.

Just a boy...a real 7 year old boy with his cars. Leaving them in the floor for me to step on, and trip over.

That's always a happy reminder.


Unknown said...

What a great post! I love the way you look at life.

Cristy said...

Just found you and Max. Really enjoying the read. My daughter Laura is seven also with special needs. I've ditched her pole and use command tabs to hang her bag off end stands and stuff. I love not having that thing around!

Deana said...

Thanks for visiting Cristy! Do you have a blog too?