August 20, 2013
There is a warmth today that is uncomfortable. I washed Daniel's van and it became quite clear that I chose a project I wasnt going to enjoy today.
Daniel is, after all of my bragging about his healthy state, suffering from gunky congestion today. It just goes to show you, that when you least expect it, expect it. And we are managing that as we always must do. Daniel finished up his STARR summer school program, and is basically hanging out until the rest of August melts away and school starts again on the 27th. He had physical therapy today, and his hamstrings are terribly tight. I need to do more.
Sarah is just about finishing her packing for her move to college on Thursday. I am pretty sad, as most Mom's are, but she is the sunshine and the fire in this house. Her vibrant personality shakes the walls and fills the halls. I just don't know how it will be without her. Thomas will be busy, but I know it will be strange for him to no longer have her to talk to. Daniel, of course, is unable to speak and communicate with us on an advanced level. She's heading to Wagner College to study Arts Administration and she'll be very close to New York City.
FOOTBALL 2013....
Football started up the first week of August. Thomas has been struggling with some emotional issues, and I worried that he wouldn't do well. He got into conditioning week and just felt like he had no passion for anything anymore. I reached out to the coach and to his trainer at the NYA to see what I could do to help him, what did they suggest? But sometimes questions are not responded to. People are busy. I'm the one worried about this Thomas. This Thomas who is brilliant. Who, we discovered has perfect pitch. Who, taught himself to play a Tenor Trombone with an f attachment in a few short weeks. Now we are paying off a Baritone Sax and a Trombone. This Thomas who played and did an improv solo in a jazz band consisting of adults and highschoolers.
But Football... he likes the game. He just feels like he doesn't understand how he can "EARN IT" if he never gets the chance to apply skills, and take instruction. I just look at him....yes he is a bigger guy, and yes he needs to be faster, and to move his feet. But about that, he is sharp as a tack, smart, and eager to please. Last night at practice he hung off to the back of the pack, he looked down...and I was worried about the things that are red flagged in therapy. Well, anyhow on the football thing, he is not fast... and even though everyone tells him he has potential, he seems to spend so much time just standing on the side or kneeling. I don't claim to know that much about the sport.... but I do wish the kids who are in need of "earning it" time, got more time to try. Maybe if John had been more patient and more involved, and got in there like the other Dad's Thomas would try harder. Instead he has me... THAT lady, with the wheelchair and the little black dog. Urging him on, in her mind, as he struggles through the running.
The other parents tell me encouraging things, but I have a boy who comes home feeling like "crap". I don't know what to do. Except stay positive.
Boy do I love the sound of that saxophone when he just picks it up and that amazing bass sound just comes soothingly out of the horn.
I am doing something to help both Thomas and I now that Sarah will be in school and I have one less child to concentrate on... We are going to see a nutritionist and get on a healthy eating and exercise plan. Both Thomas and I are overweight, and I know that it will be better for both of us.
So already the summer of 2013 is winding down. The Sandy Hook School kids are spending another year in Monroe. Thomas is going into the 7th grade and that means the Middle School. Moving along.
Daniel... Daniel just stays in his program at Reed School. He isn't progressing along grade to grade...because he doesn't have a grade. He just has "Daniel's speed". The same bus, the same room...and all around him... new 5th and 6th graders. I don't know how I really feel about that. Is it the best thing for him since he is now almost 16? But what other options would I have for him. I don't know. I need to know.
And finally, there is little Henry. Henry, who at this moment is 11 weeks old and 5 pounds. Our little dog, who came to be with us in July... who is in full blown puppy stage. Henry is awesome. I'm trying to figure out what the training is going to look like for him. I suppose I had thought it was going to be somehow more organized, and yet I am confused as heck. I am reading the books, and following instruction but he will be going to a puppy behavior class in September. I know he'll make a great little service dog someday for Daniel, but we have a long long way to go. I have NO IDEA how to train him to respond to a seizure, or stay by Daniel's chair. It's all a new and exciting adventure.
It's almost time to prepare for football again. Thomas told us last night that he would push harder and try harder. I just wish someone out there was in his corner. All of those coaches are busy guys, getting the best kids into the best spots and preparing for games. It's all about winning. I understand that. And for the parents who have those high speed athletic boys out there, always starting, superstars in multiple sports... they have fun watching their boys play. But the parents like me, who have a boy with a heart of gold, who never gives up, but feels disheartened, who watches quietly while his buddies out run him and go out to make plays. He runs slow, but the doctor said the pain he feels is related to the diaphram... not the lungs, Asthma is better... We had one said therapy session where he burst into tears and said he is tired of being "the big slow kid". So back then I began to encourage him back to better nutrition.
Well... a Mother's love for her son is very different than a father's expectations. I have a son who will NEVER walk, talk, or play any sport, or walk in a parade, or go to college, or run a suicide or a sprint. The degree to which I have to manage this, trumps out alot of things that I know I should be pushing. Such as the athleticism of my son.
And sometimes, I think about how my own heart gets sad and lonely and I know my boy is like me. Surrounded by people who like you, but feeling lonely because you are so profoundly different.
I had always hoped that when Thomas went to the football field, someone would have talked with him, encouraged him, gave him an extra push, and extra shoulder. Because he's had a hard life. He's seen so much adversity and pain. And he is only 12. And he lives in it every day. But like Daniel, I am apparently also the only one looking out for Thomas's happiness. But I don't want to get involved with the sports, because I feel silly.
The music, on the other hand, I will do whatever it takes to keep that music flowing. He is gifted, and in love with music. Afterall, we all need a way to express our soul. Even a 12 year old boy.
Daniel's little dog is asking me to get him outside to potty. We will find a shady tree.
