Wednesday, March 08, 2006

Up syndrome

Fric and Frac were three and two when the Shalebug was born. With all the madness surrounding his birth, we sent them to a friends farm for the first two weeks, until we knew what was going to happen. When it became apparent the Bug would not be leaving the hospital at any time, we brought them home. I was torn between two worlds. I had a sick infant in one place and two sad and confused toddlers in another.

My hubs and I did everything we could to include them in the hospital experience. They visited often and because I spent my days away from them, at night we spoiled them rotten. We wanted them to know we loved them too, but their baby brother needed us badly. And we did all right. By the grace of God. They never resented the Shalebug and they just accepted his disabilities without any problems.

In fact, they were proud of their little bug. My hubs and I did our best to explain to them what was the matter with him. Honesty no matter what. We told them he couldn't smile or blink. He couldn't eat. Or talk. He wouldn't walk (at least until his feet were straightened.) We told them he would learn differently because his brain was made different. And they sucked all of this in. So much so, that where ever we were, for years to follow, they would tell everyone, Shalebug's business.

"This is my brother. He can't talk or eat or walk. He has meebus synrome and he is missing the bridge in his brain."

But the best time of all was when, after the birth of their cousin who has Down syndrome, they announced to the world "This is my brother. He can't talk, or blink or eat. He's missing the bridge in his brain. He has Up syndrome. My cousin has Down syndrome."

They might not have completely understood what was wrong with him, but they understood their brother.