Happy Birthday! Damonito!

Damonito turned 5 today. He was having a bad seizure day so we all piled into his bedroom and into his bed to watch him open presents. He was a little put off by the stuffed scorpion that i bought for him. mostly because it's stuffed. he likes to build things and he likes to line things up. so the bag of foam blocks were a huge hit.

it's all about balance

Any thing extreme can cause seizures. For instance, bright colors sometimes cause seizures. Bright light. It's hard to take him to stores and restaurants because he gets over stimulated which causes seizures. Illness makes him much more susceptible, a high fever can cause seizures. When he's sick then his body can't absorb his seizure medication the way he normally would leaving him at greater risk. And excitement. Over activity. Too much for too long. And under activity, not enough to keep his mind and body going. What kind of day is it going to be? Right now, the color blue does it for him. We have to take care not to buy him clothes and toys that are blue. Like the sort of Thomas the Tank Engine blue. He loves to play. If he's having a bad seizure week, it's a tough call saying he can't play.

Nothing is easy

I've mentioned this before but it is always the case that one problem gets solved but another is often created. So the battle is always trying to figure out what you can live with and what you can't. But I have to say that the words "impacted" and "bowels" in a sentence are never good and as it happened managed to land Damonito in the hospital last week. He's ok and home now. Drawing and writing and playing with my lense cap.

intense concentration...

Damonito loves to stack things. he can get some towers going sometimes. and he's very patient about finding the exact spot to stack the next block so it doesn't knock everything down. he sizes it up. before he completely lets go. he's very proud of himself when he's successful.

What's Mine is Yours....

Generally, it's very difficult to get Damonito to keep his clothes on. You have to watch him because he almost instantly takes them off. Last Sunday, I was hanging out playing with Damonito and it was a little warm. I had a sweatshirt on so I took it off (I had 2 shirts on) and Damonito was very intrigued with my shirt. He tried very hard to put it on and with my help he pulled it over his head and shoved his arms into the sleeves. He wore my shirt for a couple of hours and then took it off because (I think) he was getting hot. But it was only off for a short time before he was putting it back on.

perceptions are everything...

I have this tendency, when things aren't going my way or when something particularly sad happens, to make a B-line to spend some quality time with Damonito. He humbles me. And nothing matters as much as he does. Not a bad day at work. Not a relationship fallen apart. Not the price of gas. Not global warming. My full focus is on him.
And he is incredibly happy.
He has no idea what's in store for him. He doesn't know what it means that he'll never really know the beauty of the sunset, that he'll never ride a bike. He'll never understand words on a page. He'll never go off to college. He'll never walk down the aisle and say "I do." But he's incredibly happy. So when I'm about to throw myself a pity party, I go hang out with Damonito and he brings me back to reality. He loves me and he's always happy to see me. And if he wants me to be a chair for him, I'll be a chair.
At this very moment, he's happy. His life is grand. I live with so much more than he could ever dream. So I need to appreciate everything I have today because I have no idea what's in store either.









photo by Joe

bed head

Damonito will be 5 this summer. He's tall for a 5 year old. His bed had been an issue for sometime. He needs a crib. He can't sleep in a regular bed because we can't have him getting up in the middle of the night walking around. He needs constant supervision. He could really hurt himself. However, cribs are for babies.

Damonito's mom worked hard to get him a new bed and was successful this winter. He now has an adult size crib. Isn't it beautiful? Basically it's a hospital bed with a crib around it. There are 2 panels in front that drop, but it has windows so he can see out. It does all the things a hospital bed does. Goes up and down. You can bring his head up too. We are so pleased to have it.

Sunday as he was waking up from his nap I walked into his room and was kneeling next to his bed and he pressed his face to the window to give me a kiss. I think he really likes his bed.