It's now just about 3:00AM. How come so many songs mention 3:00 am? When you're talking about the middle of the night, why does 3:00 am come to mind? Right now, I've got MatchBox 20 and KLF ringing in my head. "It's 3:00 am I must be lonely." So odd as I'm usually a good sleeper, but a 1:30 train and Austin waking up at that time have set me back. I know part of it is I'm hungry, the ice cream social after VBS wasn't quite enough sustenance for me.
Speaking of VBS, the kids all went up front and sang their songs tonight. I was so proud of both of them. Tommy is a natural up there singing, he does great. And I had a few worries about his rhythm recently but those have been erased. He was up there clapping perfectly to the beat. Yay, I was worried since both Joe and I are music moguls. Austin made me especially proud. They did a lot of motions and he did his best with lefty and sang his little heart out. "Dive deep, deep, into God's word" has been playing over and over in my head all night too. He loves that song. It's nights like tonight that I think Austin will be ok.
Since it's the middle of the night I can be forgiven for interesting posts. Oh Austin, my dear Austin. Today we got news that he has cavities and needs to see a pediatric dentist. Poor dude can never catch a break. Once in a while I'll get into an Austin funk. I'll think, that poor boy will never make it in school. He'll never play sports or on playscapes. He'll always live in his brother's shadow. He'll never live a normal life. But then I have those "aha" moments and I know it won't be so bad. Tuesday was of course botox at U of M. Visiting this hospital always brings a myriad of emotions for me. I can't help but go back to days like Oct. 28 2003. I had been discharged from the hospital less than 48 hours after a c-section to get down there with my baby. He looked so sick, I remember saying to Joe right away "he's gonna die." Joe's always the strong one, he never let me think that would happen. But later his Mom would tell me that the night before when they were down there that Mr. Rational Joe was going all over the ECMO machine, figuring how it worked and in an elevator very matter of fact says "and we might lose him." Know this, whenever doctors pull you into a room alone know that it's not good news. Austin's heart just wasn't coming around, they wanted to go in and look around and maybe drain some blood they thought was pooling in the left ventricle. Of course we gave our consent and then went off to cry in a lonely hallway for hours. Then we got back there and it was one of those places where you always had to call ahead before entering the "pods" where he was. The nurse said you have to go downstairs somewhere else the doctors need to talk to you. Then we had Austin's turnaround. Dr. MacDonald Dick exclaims that while looking at his heart they found an extra nerve causing his SVT. They wanted to do a heart ablasion, this wasn't new to me as my Mom had this same thing in her 40's. They usually don't ablate babies but Austin was an extremely severe case, worst they'd seen in 25 years supposedly. So they did his ablasion and within minutes his heart was finally beating normally. Amazing! We went home with peace that night knowing that he would survive while only earlier in the day I was certain he wouldn't make it.
Gosh the above was long, I'm getting to a point here though. Austin came home after only a little more than 2 weeks in the hospital. Our ped. wanted to do a head ultrasound because of the risk of brain bleeds from ECMO and later we'd find out he arrested 3 times in Saginaw when he was born. Hence why he was airlifted to U of M. U/S came back bad so it was now CT scan time. This also came back worrisome so off to U of M neurology we go. January 19, 2004 another bad U of M experience. I can tell you another certainty of bad news. When two doctors come in after an initial evaluation by one you know they are going to give you bad news. It was crushing, Austin had pretty significant brain damage which would lead to possibly severe CP and severe retardation. I don't think I understood, I do remember thinking at one point; "I prayed in that hallways months ago just wanting him to survive and I now I'm angry that I'll have a vegetable" I had already known something wasn't right with him. At a Christmas school gathering I cried to coworkers that I knew something was terribly wrong. I just didn't know what. So then we were on the "wait and see" game. What a horrible game to play. Pretty quickly after the news he started smiling thanks for waiting 3 months dear. I knew he would have emotion.
Well I didn't think I'd get going so much. I'm still not tired but I feel like I'm rambling. I guess I will end it after I fast forward to Wednesday's "aha" moment.
Austin has therapy at Highland Pines School in Caro from 2:30 - 3:30. Tommy and I sat out on a bench out front and read. At 3:00 school let out and probably about 30 kids from ages 3 - 26 came out to get on buses to go home. What I saw truly horrified me. Wheelchair after wheelchair, some kids completely out of touch with their surroundings, drooling adults. I had one of those moments of "Dawn, you are the most selfish person on earth, who cares that Aus won't be valedictorian chances are Tommy won't be either, who cares that he won't play in the NHL what's the likelihood of that for anyone, who cares that he still has to go to therapy, botox injections, castings, AFO's, maybe special ed in the future, you are DARN LUCKY things turned out so well for you." Google the writing "Welcome to Holland" I need to embrace Holland because our Holland really isn't so bad.
3:35AM I'm still not sleepy.