Monday, July 30, 2007
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.
Sunday, July 22, 2007
Tuesday, July 17, 2007
Monday, July 16, 2007
Then Olivia came. Dexter who? Treat money was spent on diapers. Long walks were now with a stroller not a leash. Tummy rubs? I had to hold the baby. And the few precious hours of sleep I got were not going to be spent with a smelly dog, for we no longer had time or money to groom him as often ourselves or professionally. He knew his position in the food chain had changed (there was rarely food in the bowl), and thankfully never took it out on her, instead he started running away.
It was fun, driving the streets of our neighborhood in my pajamas, on four hours of sleep, hanging a squeaky toy out the window and yelling with my newborn in the back seat. Good times.
Well, thankfully life has improved greatly for Dexter over the past three years. Olivia learned to throw a ball. She started walking and later holding the leash herself. She loved to be outside and even moved to a big bed where there was plenty of room for Dexter.
But best of all was when she started eating. Food fell from the sky in what must have seemed like a dogs version of those raining Skittles commercials. A regular smorgasbord for Dexter, and I was never going to complain for I never had to sweep.
Then came Thomas and it is was like Dexter knew there was a light at the end of the tunnel. He loved on Thomas from the beginning, licking his toes and head, laying next to him on the floor, letting Thomas pull his hair. Never once has he run away, even when the dog bowl was empty. And now it is time for the pay off. Cheerios, black beans, crackers, veggie puffs, cheese, banana bread. Dexter is in dog heaven. And I am glad, for he deserves it. He's a good dog.
Sunday, July 15, 2007
For some reason, I could not stop giggling when he had the cast on. I mean how cute are those puffy cheeks and only the pacifier sticking out from the mesh?
I am amazed how much stronger he is since his surgery. He is holding that heavy cast up while sitting practically on his own. What a stud!
Wednesday, July 11, 2007
Sunday, July 8, 2007
"Has it been raining three years or five years mommy?"
"Feels like it has been five years."
Nothing like having a pool party to go to, something the whole family would love, and looking up into the sky to see those luminous grey rain clouds. Oh but wait, now it is sunny, now we can go! Oh, check again, it is raining. What is up with the moody sky?
Plus, Olivia has an extreme fear of thunder. When we were getting out of the car after church, she was walking up to the house when the thunder started rolling. She immediately started crying and running in circles, for she didn't know if she should run to me or the house. It was cute. Where was the greater safety? Mommy's arms won out. It's great to be a mom.
Despite the rain we have had some outdoor fun.
Swimming (Thomas' first time):
Bike Riding (Olivia's first bike! Thanks Kate for passing it along.):
A visit to the Nasher Sculptor Gardens (which BTW is free the first Saturday of the month):
We hope you too are finding time for some outdoor recreation. To quote the late, great John Denver, "Sunshine on My Shoulders Makes me Happy".
Tuesday, July 3, 2007
Unfortunately, we took only a few pictures at the party. Here are a few from the church and after at our house. Oh, and I will throw in some cuteness that occurred while Mike's sister and brother-in-law were here with their baby. She is adorable, and believe it or not, her personality is even cuter.