Tuesday, October 7, 2008

Waiting for our Miracle

I sometimes feel like life is passing us by. I keep wishing that I'm going to wake up tomorrow and this will all be behind us and Carson will be recovered. Every day, I wake up and that hasn't happened yet. It's so frustrating. I keep telling myself to live for today, live in the moment, enjoy this time or you're going to regret it and I try and try but it is so hard to enjoy our days sometimes. I feel like everyday that passes is valuable time that I am missing with my son. I'm so thankful for the words that he has and for the communication that we do get but I want more so badly. I want to have a full blown conversation with my son more than I've ever wanted anything in this world.

I just finished Jenny's new book...yes, we're on a first name basis now...for those of you who don't know, I'm talking about Jenny McCarthy. The book was amazing and so inspiring. It's great to read these success stories and know that people who were way worse off than us have kids that have recovered. Her new book is called Mommy Warriors and I would recommend it to anyone. Yes, the title is a little biased but there is a story about a Daddy Warrior in it. It, like the last book, Louder than Words has made me crazy with things that I want to try for Carson. We are doing most of the things but there are other things that we haven't tried yet....but we will.

Today, I called a new Dr. that Emily found in Metro Parent. He specializes in digestive systems so I got an appointment for the 30th. He sees a lot of patients with Autism Spectrum Disorders. I also called our DAN doctor and told them that I want a Comprehensive Food Allergy Profile done for Carson because as I was reading, I'm afraid there could be more things that he is allergic to. I also want to get him on anti-fungals.

It's been a crappy week so far. Emily took Carson to a child psychiatrist yesterday. She recommends meds to calm his aggression and help with his disruptive noises. We kept him home today to try the meds. Of course, he took three naps and was very out of it. I don't want my kid to be zombie. I'll give it a couple of weeks like she said but I am reluctant to have him on prescription drugs. His teacher called Monday to inform us that they are having a meeting at school about his behavior. We're not invited. It's tomorrow. She also informed Emily that he will not be ready for mainstream kindergarten next year. The psychiatrist said the same thing. Great! That took the wind out of my sails. My goal was to have him better and ready for a normal kindergarten class next year. Big disappointment...but I'm keeping the faith. I know his aggression is due to the fact that he is so frustrated and trapped inside his body. He has so much to say but can't express it all just yet. This ordeal is taking a toll on Emily and I right now. Something will happen soon...I'm sure of it. It has to because Carson deserves for all of his hard work to pay off. He's such a trooper.

I contacted a Rescue Angel today. I'm not sure if any of you have been on the Generation Rescue site that I sent out. If you haven't, please check it out. It's an organization of parents just like us trying to rescue our kids from this world of Autism. Many of them have succeeded. Anyway, a rescue angel is someone who has already been through this ordeal and either fully recovered or made huge strides with their kid. I told her our story and am waiting to hear back to see if she has any other suggestions for us. I figured it can't hurt. The more help, the better. The site is www.generationrescue.org.

On the Griffin front, still no word on his EEG. Tomorrow will be a week so we can call. No news is good news. They said that they would call sooner if they noticed anything urgent. I know that he's going to be okay. God wouldn't put one more thing on our plate right now.

On a funny note, Griffin can now hit balls with a bat when you pitch them to him. His coordination is amazing. I have never seen a child his age do these things. He is obsessed with sports. He can throw a football like crazy, has a great soccer kick, an awesome hockey slapshot and can dribble a ball like a basketball. Last week at my parents, he was throwing the football with my cousin Johnny (Blake was defending...trying to get the ball.) He got the concept that he had to throw it around or over Blake to get it to Johnny. It was hilarious. We may have the next Tom Brady on our hands....he is a quarterback...right?

The week can only get better. Hope you are all doing well. Thanks for reading!


becky said...

You guys are both such great parents. Just remember what you are working for. And I know it sounds pretty obvious but someone once told me, just take the time to appreciate your child for who he is, the rest will happen as it is supposed to. I love you guys!


Anonymous said...

Carson will know and appreciate all of the hard work you have put into helping him get better!