So you may or may not know that Mike and I were going to the D.C. area this past week, first to a conference and then on to see friends. You also may or may not know that Thomas was diagnosed with an extremely rare syndrome back in January. We found out while he was in the PICU, in fact the geneticist chose to break the news to us actually in his hospital room. It was really a good time, but another story I will not go into now. Well, this conference was for families of boys with this syndrome. We were very wishy washy about whether or not we wanted to go back when we found out about it. My parents were very encouraging of us to go, offering to keep the kids, and a friend I have meet through the Internet who has a son with the same syndrome was going, so we decided to go for it. (The fact that we would also get to spend a couple of days sightseeing and hanging out with our closest friends who moved to the area earlier this year was a huge bonus.)
About the conference. The main speaker/presenter was a woman with a practice in the Annapolis area. What I read on her website before the conference indicated that she works with families to write the best possible IEP (individualized education program) for her patients and then helps get the best possible and most effective services (like therapies) to bring that plan to fruition. Sounds good to me, especially as an educator, but I was a little skeptical. She charges a lot of money, and I mean a lot. Could she really provide what she offered, which to us was expertise, or was she praying on our desperation and profiting? We decided not to take Thomas, he had been through so much this year and traveling is never easy with a baby. Mostly we were going to check it all out, and our hope was to get some information that was more accurate than the doom and gloom picture that our geneticist painted, one we already knew Thomas would best.
You must understand this syndrome is rare. None of our doctors have seen it, there is little information out there, even with this vast arena we call the Internet. A boy has a better chance of being struck by lightening, probably twice. Well, the rarity really hit me we when found out there were 13 families at the conference, 3 from other countries. And our "expert" had data to share on 10 boys she had evaluated. This conference was going to bring her numbers up to 25. I must say that left me feeling lonely and also chosen. Maybe that doesn't make sense, but I don't know if I can elaborate.
I liked the doctor. She is the kind of person you are drawn to instantly. Her presence is felt, she seems important. She wants to help kids. She wants to help families. She wants to change the doom and gloom picture. I am for it, as it is not fun to hear what we heard about our son's future and from what I saw of the boys at the conference, it is not a good depiction. I want to do what we can to help.
The conference was a good kick in the pants for me. It reminded me that I need to be doing more of the things I used to tell parents to do when I was a teacher. This is serious. This is forever. This is my son's life and, really, both my kids are depending on me to set them up to be as successful as they can be, aren't they? I can be doing better. Now, don't feel you need to call or write and tell me I am doing good, or so much already or whatever make me feel better thing you are thinking. The truth is I can, and so I will. I will do the best I can.
The rest of the trip was great. Mike and I needed the time together, and we really enjoyed ourselves. Annapolis was a fun town. Lots to do and see. We walked around the Naval Academy and my respect for my brother-in-law, a graduate, grew 10 fold, which wasn't easy considering my already high level of admiration. We were able to see and eat dinner with old friends from church which was fun and refreshing after the long day of doctors and presentations. Of course, I took no pictures of our night with them, so there are none to post here.
On to D.C., where we stayed with my best friend Mary and her husband (again, I took no pictures). I miss her so much and being together is always the breath of fresh air I need. We did a lot of the tourist sites which was hot and tiring, but completely worth it. I did take pictures of this, however I am sure nothing that you haven't seen or could google.
I will admit here and only here(which means I don't really want to talk about it) that there were low moments . As we walked around the Naval Academy I thought about how my son would not go to school there. It would not be an option. Am I being harsh? Am I supposed to be a Polly Anna who believes anything can happen and smiles naively through it all? After hearing about brain capacity, speech delays and behavior issues, I just didn't have it in me. I fact is stared me harshly in the face. In reality, who cares? We are not from military families, this is an elite school, so many kids would not be going there, but it would have been fun to dream, you know? It was just like the Future President onesies we saw in kiosks. It felt like the dream of anything is possible has been taken.
At the end of the conference one of the dads made a DVD of snap shots taken of the kids and families. He ran them to the song Anyway by Martina McBride. There is a line in the song:
You can chase a dream
That seems so out of reach
And you know it might not ever come your way
Dream it anyway
Maybe I am not alone in feeling this way.
My new dreams are for walking, running, playing a sports. Talking, yelling, calling a friend on the phone. They are enough. They would be amazing.
The conference really confirmed to me that Thomas is who HE is, and not defined by this. He has a great personality with likes and dislikes and he lets us know both. He adores his sister and thinks his dad is hilarious. He is happy and he is healthy. He is my son. I wouldn't change a thing.