Goodness, I am a bad blogger!! So much progress since my last post:) I don't know where to start!! Kolton is doing amazing since his eye surgery. We had two follow up appointments with his opthamoligist and things are looking good! His doctor was very impressed with Kolton's recovery and said he doesn't think he will need a second surgery! Thank you God:) I could not handle another one. Since his surgery, Kolton has become a dedicated cruiser!! He spends hours a day just cruising back and forth along the couch. He is so proud of himself and so am I. He also learned how to crawl up on the couch- little monkey!! The other day, I came out of my room and there he was kicked back on the couch watching TV like he was cool!! I almost had a heartattack, but so far he has not fallen off the couch! He knows how to get off. This is so exciting as I am hoping to transition him from his crib to his super cute toddler bed I bought him a long time ago!! So getting up and down on the couch is the first step to him learning to get up and down on his bed. Exciting but scary. Kolton also is learning to drink from a regular cup and is pretty good at it, except when he is finished he throws the cup!! So whatever is left in the cup gets splattered all over my floor, furniture, whatever is in its path. So we are sticking with water at the moment, till Kolton learns some manners and can GENTLY sit the cup down. And with much excitement I am proud to announce that Kolton will now crawl in the grass! YAY Kolton. For all that know him, he hated grass, HATED it! With his sensory defensiveness, grass was pushing him to his limit- way to much sensory at one time. But about a week ago at Gramme's house his curiosity overcame his sensory. He decided he wanted to explore and crawled all around in the grass, dirt, mud, whatever he had to cross to get to where he wanted! Yesterday, I put him down in our backyard and he was fine, played with his toys like he had no cares in the world. It brought tears to my eyes, as it is now, I am reliving in that moment. Thank you Kolton for the joy you bring to me.
In July, I was very fortunate to meet with a few fragile x moms that live in San Antonio. Our visit was very informative, overwhelming, tearful, but calming all at the same time. I left feeling relieved and had answers to my own weird things that I like/do:) I learned that I am not a weirdo!! I am a fragile X carrier and carriers share characteristics. YAY, I felt so normal! I have also become a member to a wonderful fragile x online support group. There are so many wonderful people on it and everyone always is so positive and encouarging. Just what I need.
Fragile X is no longer consuming my life. Everyday I get a little piece of my real life back. I will always research and search for things to help Kolton, but I will also just spend time with him, playing, laughing, singing, and most of all loving him. I still get teary eyed everyday, but the sobbing has passed. I spoke with a wonderful woman from the MIND institute ( a program that is completely dedicated to finding a cure for fragile x) and she told me the first year after recieving the diagnosis is the hardest, you have already survived the first half of the year, you only have the other half to go, and you will make it. She was right. I will make it.
Being the mother of a special needs child is hard, physically and mentally. Day by day I am learning how to be stronger. And at the end of the day, when my kids have been fed, bathed, and tucked into bed, I am amazed at all I accomplished. I am proud, not only of my kids, but of myself.
Thanks, Kolty for all that you have taught me.
I Love you,
Mama
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