Thursday, January 8, 2015

X marks the Spot

I haven't done much the past couple of weeks. I am ashamed to say. Much less sit down to write. For the past month and a half, I have had barely enough time to really catch my breath. Trying to get through the Holidays in one piece and juggling life as I know it with just me to deal with it all, has been exhausting. This past month brought a lot of things to my plate. Things that I wasn't ready to digest and some that I was. Life always finds a way to put a wrench in the best laid plans. Between watching helplessly as friendships crumbled and trying to get through difficult Doctor's appointments, I knew once I got the holidays done and over with, I could finally try to catch my breath, if for a little while.

Time to digest the full extent of the last couple of months. Time to figure out what the game plan was going to be. But even the veteran special needs parents knows that it doesn't matter how much you try to plan for things, life changes almost instantly to disrupt even the best of plans. Things you thought you knew,changed. Things you knew were going to work, all of a sudden don't. The plan that you once had, the one you were so sure would be a good one? Just doesn't exist anymore and its back to trying to make up a new one. Sometimes that can make you have this sense of dread. As you sit there thinking, "Well Fuck... What do I do now?" You do the only you know how to do at this point. You pick up your socks and move forward. You have to. Its the only way you can get both yourself and your family through rough times.

December was my "Well Fuck.. what do I do now?" period. Back in September, we had gotten a diagnosis of Fragile X for our youngest son. At the time, I knew very little about this disorder. So I did what any other parent would do, I turned to the internet. I researched the shit out every Fragile X website I could find. I read things I didn't understand. I read things I didn't want to acknowledge. And I read things that made me go.. "Yeah that sounds about right!" But in doing that, I wasn't fully grasping the full reality of it. It wasn't until, we started doing the tests and the assessments, that it fully hit me. Like hard, in the face on a very cold day. The first clinic appointment was one of the most difficult days I think I have ever had to sit through. I have been through many appointments, IEP meetings and assessments  between three children to be hardened to somethings that get said. But our first clinic appointment, took the wind right out of my sails.  I think normally its very hard for parents to hear that there is something wrong with their children. Whether it be something minor or major. Parents want what is best for their children in every aspect. I knew going into this that the Autism diagnosis we had gotten 2 years ago was on point. And that with the now Fragile X diagnosis, it was that we had found the "Why" piece to his puzzle. I was prepared for that. It was all the information that came after that point that made me take a step back. That morning we saw a total of 5 people in clinic. I was told that there was evidence of my son having petite mal seizures, which in the long run build up to a grand mal. The discussion of medications honestly made my head spin. The ordering of more tests and assessments would make even the seasoned parent do a double take. I knew this road wasn't going to be an easy one. I knew it was going to have it's challenges, but I just was not prepared for the amount of everything.

The full scope of this disorder didn't just effect my youngest son, but there was that very positive possibility that it would affect myself and my eldest son. Thank you genetics. As the geneticist went on talking about what my sons and I were going to face later on in life, I went numb. Part of me felt guilt. I have always tried to put my "Mom Guilt" into the recesses of my mind, Since Little Man's autism diagnosis, I have manage to keep it at bay. Until now. Being told that this was something a mother past down to her sons and a father down to their daughters, that guilt that I had kept so hard locked up, came back with such force, it was too much. At this point there was no way to reel it back in. I know in my mind that there was absolutely nothing I could have done to prevent this. Nothing. I can't go back and change how my genes are or my sons'. Its going to be what it is. But my heart just hurt. And trying to tell the heart to feel the same way the brain does, never works. I know in time I will sync them both up, but things are still raw.

I know that there are much worse things that could happen and that this is not the end of the world. I remind myself that we are in the best possible place to be in. My son has a tremendous amount of support within the medical and academic community. And for that, he is blessed. For those who have supported Little Man, thank you. It has really meant a lot to know that there are people out there who care enough to want to understand and want to help.

Right now, its that little X that marks the spot. The spot where the worries and fears are. The spot where the uncertainties lie. Its the spot in my heart that makes me want to hug that little sweet boy forever if it just meant that I could make life that much easier for him.