Day 29... as the month is coming to a close, the Awareness has tried to get the world to see our children with Down Syndrome as people, as loving little lights that are proving to be the very best part of who we are as humans. Bradley is not a judgmental little boy that chooses to hurt people because he can, he has little idiosyncrasies that sometimes make us think he is trying to do things intentionally...but even then, there are things happening in his brain that he can’t control...the why it’s wrong, the how to stop himself. His lack of impulse control is at level Epic. If it were a super power in some video game...he’d be level 99. But his capacity for sweetness is just as compelling and just as high on that scale.
When Bradley got up this morning, I told him he was going to school. He was excited. Sometimes, I am not sure how much he truly understands, but today I know he did. He was floating between all of us as I was getting his medicines ready, and when I told him we needed to get dressed, he was ready - taking my hand and walking down the hallway with me. He was smiles and light. He wasn’t asking for his movie because he knows he never gets it on School mornings, and he was showing me his preferred shirt and definitely showing me the socks he wanted to wear. He chose his fish socks, as they are his current favorites. They are a little creepy to me because it looks like the fish is swallowing his little feet; but whatever, they make him happy. We did medicine, we got dressed, and got shoes on...then he sat with his tiles in the living room while I prepped his lunch. He was patient for a jacket and when it was time for his harness, I told him his blocks couldn’t go to school. For the first time ever, he turned around and set them gently on the bookshelf, then turned back to me. He’s never done this before; especially with quiet compliance, I was momentarily stunned. I wanted to gush, but sometimes if we make a big deal of it, it becomes an issue of control. So I contained myself and told him, “good job, let’s zip you up.” And off we went.
When the bus arrived, he was all smiles and when our driver said good morning and asked if he was ready he said “Yeah!” And off he went. I worried about all three of them today, but mostly him and Sydney. But they all did great. Bradley took about a twenty minute nap, and then at afternoon recess he went and joined the older general Ed kids playing kickball. He was playing with them, and they were playing with him. They encouraged him to play with them and he even rolled the ball for one of them to kick (that might be a serve, not sure how kickball goes anymore) the point is he played and he was welcomed to play. Eric and I both wish we could have seen it, but we’re just so pleased it happened. And then after school, coming off the bus I got the sweetest hug and “Hi.” Music, just the sweetest music.
Eric met Bradley’s bus with me because it was time for Bradley’s Physical, and flu shot. Though he is a mere 51.2 lbs and 47 1/2 inches tall - he is mighty and fierce. He is getting to be harder and harder for me to hold on my own when we have to go to these doctors. With Eric’s heart issues going on, it’s almost beyond him as well. These type appointment are now leaving us with a lot of concerns about how we’re going to get through these things as Bradley gets older and ever stronger. Just when I think he’s starting to understand more, these appointments prove that he understands the parts about being held down and pain, and is oblivious to reason. It scares me. This little dynamo is falling less than 10% height and weight on a growth chart, and yet he’s a mighty warrior. Somehow, before his next Peds GI appointment on December 10th, I’m supposed to get him above 53 lbs...if not I have to find a way to add more Pediasure into his diet to increase his calories...which translates to more tube feeds if necessary...great time to be getting sick and not wanting to eat...sigh.
Tonight I used a familiar method to get more calories in him, I dip bread in soup or sauce to get him to eat. He can’t separate thinner liquids and solids in his mouth, so those need a bridge food, I use bread. After he ate a whole piece of bread this way, I then was able to sneak in two mini raviolis, followed by the rewards of another dipped piece of bread and then sherbet. I’ll take it as a win.
As for the little ladies, they both made it through school. Sydney is somehow not behind in her classes, and neither is Madison, though she had to work hard to get caught up again. I was in contact with the Coach at the High School that seems to like Sydney; and is willing to talk to me, to ask for him to not push Sydney too hard during conditioning today. He was very sweet actually, because Sydney said he told her to pace herself, or he’d pace her himself. With her throat so sore, it’s harder to keep her asthma in control...but she did okay. Madison came home and took a two hour nap because she just needs it. I am hoping the sore throat goes away very soon. Poor kids!
And of course, tomorrow is the first band concert. My trumpeter will tough through it...my french hornist... we’ll have to see. She’ll be there to support, but not sure if I’m going to hear them play together again or not. Eric and Bradley will probably stay home. Second day back to school after eleven days...little guy is going to be tired. After the workout that he gave dad at the doctor... not so sure that dad isn’t more worn out than Bradley.
The house is sleeping now. We have some things we have to look at with Bradley, some not so fun like a sleep study and an EEG, but for the most part...he is doing really good and his health is pretty stable. THAT, is a Blessing for sure. Things need to happen, but nothing needs to happen tomorrow or even next week. We have some time; and often, time is not a luxury we have with him.
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