Life with a Really Cute Kid

Hello world and followers, it has been almost a year since I've posted on this blog. Both good and bad things have happened. Well, wait, let's not call it bad... just yet. Last December 2009, we had a geneticist appt with Cole. Our speech pathologist recommended this due to Cole's global delays and other issues. After over a year of speech therapy the poor kid could barely say a word and he tended to "lose" all of the vocabulary he gained. There were signs that something was wrong. I always thought something was wrong. Well in January 2010, we were given the diagnosis - Fragile X. What this means is that Cole's X chromosome does not make specific proteins necessary for full cognitive ability. This explains all of his delays and the tantrums and eating problems and crying for hours on end. Had I read an overview of Fragile X two years ago I would have known this was the diagnosis without a 40 day wait on genetic testing. But I didn't. Fragile X means that Cole is and will be "mentally retarded". That's an awful word... I use it in jest... I need to stop using it now... and I want to.

Google Fragile X for more information.

All that said, he's actually doing pretty well. The nanny is now only a good friend and occasional babysitter and Cole attends a daycare and also goes to KISD Early Learning Center every day for 3 hours. He's doing well. He almost seems " normal" for a 2 year old but he's 3. However I've stopped worrying about these things for now.

If you know anything about Fragile X... it's that it follows a spectrum.. much like Autism. Cole appears to be on the high functioning side for a Fragile X baby. He's doing well, loves to play, read, loves school, making art, playing, still is a huge fan of water in any form and couldn't be sweeter. I'm happy that we're able to mainstream him part of the day with kids who do not have disabilities.

So far so good. While I HATE Fragile X and hate the fact that my son's life will be HARD... I also look forward to it as a journey and feel blessed that I was chosen as his mom. I can't imagine life without him... I really can't. Even his worst moments bring me more fulfillment than my previous "Cole-less" life. I look forward to the future with this baby... to the people I will meet and the joy he will bring to others and the enlightenment he will (and has) brought to my own life.

It has been a good year. Cole is doing well and collectively we are dealing with the blow of the diagnosis... family, friends, etc... I am grateful for meaningful and lasting relationships I've built over the past year... that will impact the rest of my life. I'm grateful for my son being physically healthy and capable and HAPPY. God, this kid is happy.

All in all... all is well. All is actually good. This morning I thought about how I'm actually lucky to have a son with special needs... I desperately need to learn to be more compassionate and accepting.. and this, my friends, is the ultimate lesson.

I hope the year has been good to you.

C