The Morning After

Reality bites. That we all can agree upon. Living with a loved one who has special needs is the most rewarding and frustrating existence on the planet.

Ben was a trooper yesterday. I have to really thank Lisa (the Monday, Wednesday, Friday nurse) for all she did to prepare him for the show last night. She did her best to make Ben get some rest yesterday afternoon but he would have nothing to do with that idea. By the time we hit air time me and Ben were zooming on fumes from empty tanks.

So we weren't surprised to be awakened at about four this morning due to a fairly big seizure. After Joan was able to calm the boy down I decided Ben would spend the rest of the night with Mom and Dad. After a few more "tremors" the little guy fell into a very deep sleep.

Evidently I didn't get to say all I needed to say yesterday evening because Joan told me that I was arguing with someone or some thing all through the night. I guess the connection me and Ben share can be a little too close for comfort at times; he seizes and I talk in my sleep. But one of those moments of joy comes a few hours later. I open my eyes and see two blinking orbs staring back at me. For the moment I can't see the rest of his face but the way his eyes are squinting I know there is one of the biggest smiles in the world waiting for me underneath that blanket.

The photo is of Ben in early 2003 doing therapy in his stander. He has outgrown the one above and now has a larger model. As you can see from his expression this is very difficult work for him. When he first started this therapy Ben could barely tolerate 5 minutes in the stander. Now he can last 45 minutes or longer and will actually participate in an activity while in it. This is one of several therapies we use to keep Ben's bones and muscles from atrophy. Our hope is that this exercise will help Ben to learn how to walk on his own someday. In Ashley's case she uses a stander to keep her lower extremities healthy. Notice Ben's chest area. Now imagine he were teenage female with breasts. This is an excellent example of why Ashley's parents had her breast buds removed.