Brother, where art thou?

Over the weekend, I took Joe to the newly opened Mesquite Grove Aquatic Center (this place was incredible). We had been there for awhile and were waiting for our turn in the whirlpool when I noticed a woman in the pool who was carrying a young man who most likely had cerebral palsy. The woman was bouncing up and down in the water and it was apparent that the young man was having a load of fun. He was laughing, it made me smile. I saw that Joe was very interested in the young man and he watched him intently while we waited. Joe wasn't alarmed he was just watching him have fun.
Later in the day, I took Joe out for lunch and we sat eating our sandwiches discussing the water park. Joe looked at me and said, "Sometimes I wish my brother didn't have seizures." Me, too. We decided that it would be fun to take Damonito to the pool.

It's always a humbling experience when I see someone who has more problems than Damonito. It could be worse. It could always be worse. But at least he got to go to the pool. Damonito couldn't handle it because he'd have far too many seizures. Everything about it would a problem.

smiles and kisses all around

Damonito is back to school and enjoying life. He lost a tooth and another one is loose. It's great when something like that happens when it's supposed to. Sometimes when you go to give him a kiss he gives you his forehead or when he's really not in the mood he gives you his fist to kiss. It always makes me smile when he grabs my neck and plants a kiss on my lips.

i should know by now...

No matter how good Damonito is doing there is always this underlying knowledge that he is not doing well. He has good days and bad days. Some good days are really good but the bad days are awful.
Damonito spiked a fever that hung on because of some underlying infection. Grand mal. Grand mal. He landed in the hospital. Every single day is a struggle. No one ever gets a break. You can never let your guard down. You have to constantly be on the look out. Constantly thinking.You have to know what is going to happen before it happens. You have to breathe through your eyelids. You have to be so familiar with everything that when a hair is out of place you see it immediately. It's not something you can ever turn off. It's your life.

first day of kindergarten

Today was Damonito's first day of kinder-
garten! He goes to public school, they have a wonderful class for him with 6 other students. He gets to hang out with other kids his age and his level. Last year he was by far the most challenged kid in the class but not this year. It's so exciting that he gets to do something normal.

He's doing very well right now. Damonito, Joe and I hung out yesterday and really had a blast. I had Damonito dancing on the bed (I held on to his pants with his belt loops - yes! he had pants on! - and was moving his hips back and forth - he was cracking up). And dancing. It was just a normal day. It's so great to see him doing well. He even lost one of his bottom teeth. A normal thing that happens when you are in kindergarten. It fell out all on its own. Just like it was supposed to.