So, I had my first conference with Dude's therapists yesterday. It was a little bit intimidating at first. I walk into a room and everyone is watching me sit down. Now normally, I would love this attention... but it felt more like I was sitting down with all of my teachers because I was in trouble. Weird feeling. Anyways, everyone introduced themselves, there were about nine docs and therapists all together. Each one went around and told me what they work on with Dude
-since I don't go down with him. He likes having his big boy time-
It was fun listening to all of the things he could do now considering two and three weeks ago, he couldn't do anything but scream. They showed me pictures that he was coloring and telling me about how proud of them they all are.
Take that feeling you get when you sit in on your child's parent teacher conference... multiply that by 10,000!
I was BEAMING... of course. But then, they started voicing their concerns or things he needs to work on.
Let me give you a little insight on our lives as far as Dominic goes developmentally in the past 5 years.
We came home from the hospital knowing that Dominic would be a little behind on a few things. His growth was obvious when at almost 2 months old... he was barely 7lbs. The staff at Doernbecher also said that he could be slower than most kids his age due to his hospital stay. At three months, he had his second (and third) heart surgery. It was still too soon to see just how behind he would be he spent the next almost 3 months in the hospital over coming multiple battles including coding in my arms, (second most scary day of my life), stomach surgery, failure to strive, and the list goes on. I can't count on one hand how many times he looked death in the face.
We came home from that whole fiasco and noticed only minor deficiencies. (Such as, he couldn't roll over til he was about 8 months old) The most encouraging part, is that I saw his frustration. When he would try and do the things that his brain knew he was supposed to be doing, he would get MAD. I'm talking... so pissed off! He just didn't have the stamina that his brain wanted. This little boy was determined though! He would try and try and try until he was (literally) blue in the face, and then he would try again! by 9 months he was crawling and at 11 and 12 months, he was trying to walk... but of course, his body wouldn't let him. You see, his heart took up so many calories to pump his blood, that there weren't many left for nutrition and growth. So, he stayed small. The thing is, mentally he was so ahead of the curve. He was talking and communicating better than most kids his age. (I will never forget when he said his first words... no not word.. words. It was I love you, and it sounded like "I ya ya")
Then it was like overnight, everything changed. Dominic had surgery in May of 2007. He was expected to be in the hospital for 2 months. We were in and out in 6 days! When we got home, he started walking.. no he started RUNNING! He was so happy! Not long after that, he was having adult conversations with me and Tia. He was amazing.
At 18mos I put him in daycare/preschool. He was such a charmer and you couldn't even tell that he had gone through anything at all. (except for that he was a little bluer than the other kids) The teachers at Building Blocks fell in love with him (and haven't fallen out yet). He was just as smart if not smarter than everyone in his class. It was one of those feelings where you want to just stick your tongue out at the docs and say... "TOLD YA!!"
He turned 4 and went to Grace Christian Pre-School and again.. did great! He graduated and knew how to spell and write his first and last name. He could count to 20, and 100 by 10's. He knew his address, phone number, birthday, days of the week, months of the year... the list goes on and on and on. None of his teachers have ever had anything negative to say about my little guy. (Except that maybe he talks a little too much... but I mean, look at his mom! lol)
So now, when the therapists voiced their concerns, I wasn't sure how to compute it. It hurt a little. Not for me, but for him. They all said that they can see his frustration. He remembers knowing how to do all of this stuff, and he just doesn't understand why he can't! The physical stuff is a no brainer to him. He's weak. He just had surgery and his muscles just aren't ready. (he does have a lazy bone in him hehe) But when it comes to saying the words that he wants, but they won't come out. Or writing his name, and the letters aren't forming. He starts to get angry. He almost growls. (Tia and Aaron, you know what I mean)
I started to cry! I, just like every other mother out there, want to take that frustration away from him. It's hard to watch your child know the answer, but can't think of the words that he's trying to say. I just wished it was me.
Then I remembered, with the help of Aaron, that there was a time after this surgery where he was worse off. His whole right side was limp. He couldn't talk. He screamed for 17-20 hours a day, unless he was medicated. He couldn't breath on his own. And it finally hit me...
Look at him!!! Look at how far his determined little brain has come! So, he gets frustrated. It's because he knows what he's doing. He's just trying to crawl again so to say. His little mind is healing faster than his body is, and he doesn't understand.
Now I smile when I see him get frustrated. I comfort him and tell him that he'll get the hang of it again. I know in my heart that he is just too strong to give up. He always has been. He can move his right side now... All of it! He makes fun of me every single day, just like he used to. He sings songs with me just like we did when we would drive around. He has his brain... we're just working on the rest.
For those of you who read this, I invite you to meet my miracle. You won't know whether or not you should fall in love with his charm, or his sense of humor. He will charm you with his sensitive heart, and crack you up with his sarcasm in the same sentence. (If you have daughters his age... lock em up!!! LOL He will be a lady killer and I have plenty of people who will tell you the same thing.) He will make fun of you in the most polite way you have ever heard, and all in good fun. (He would die if he knew he ever hurt someones feelings) And if you have son's around his age... you better hope that they are respectful around him because, he already has an opinion on him that's six foot eight! He doesn't like when people make fun of his mom or his sister... unless it's him of course. And don't try to be Toren's best friend unless you're his too. He has that Fitzgerald fight in him, that's for sure!
So to wrap up, he's doing SO good! He is making leaps and bounds in the right direction. I'm so incredibly proud of him and the person he is. Docs say we will have another two to three weeks here before coming home. There's a possibility that they might send us to an out patient facility in Eugene as a sort of half way step to home. (My sister asks me every single day if I'm moving in with her again.. or better, when I'm moving in with her! I'll have to post her story soon so that you all know her roll in our lives)
As always, Thank you so much for all of your love and prayers that come our way! We appreciate it more than you know! There's a light at the end of our tunnel!
xoxo
-whit
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