Not Alone

Lots have happened since my last post. Kolton is growing like crazy!! And has made a ton of accomplishments:) He can now sign "more" independently and even signs it sometimes w/ out me asking if he wants more. His walker has been switched from stationary wheels to swivel wheels and he is learning how to turn/move if he gets stuck on something:) He can pull himself up to a stand postion all day long:) YAY for my little BOO BOO!!

Kolton is also SLOWLY feeding himself!!! But only applesauce at the moment, I am SUPER EXCITED!! I have been waiting for this day for a long time and look forward to the day when I can put anything on his tray and he will pick it up and eat all by himself. Until then I don't mind feeding the little monkey:) I started Kolton on a special diet (after a lot of positive research and feedback). Kolton know only eats gluten and lactose free foods. For those not familiar- this basically means no milk and nothing w/ wheat ingredients. Why? Some children (don't ask me why) such as autistic, down syndrome and fragile x kids have a hard time processing/digesting gluten/wheat products. The body instead of digesting gluten turns it into a peptide (I think) that is released in the brain and makes learning/paying attention harder. It also leads to tantrums, short attention spans, etc. Crazy right- I know I was skeptical at first, but I have to say in a month Kolton has made a huge improvement:) He is less cranky, and can pay attention a lot longer than before, so I am glad that I gave the diet a chance. Anything that can help Kolton, is worth trying.

The most exciting thing Kolton has started doing is saying Mama. Yes, I said Mama- not Ma:) Oh how my heart bursts with love everytime he crawls to me and says Mama:) He was saying Ma for a while, then it turned to Mum ( and I was excited to be called that) and then Mama just popped out of his mouth and he never stops!! Sometimes when he's excited or upset it's AMama- SO CUTE:) His first real word- mama- I always knew I was his favorite!!

As some may know, Kolton has esotropia (cross eyes and common in fragile x) and was what we originally thought was causing his delays. His opthamologists has finally decided that Kolton will have surgery to correct the crossing. His surgery has been scheduled for July 3rd. I am excited, anxious, scared and sad all at the same time. Excited, because he will finally have straight eyes, and straight eyes will help him have better depth perception in return will help him w/ his fine motor skills. And I am excited to help his appearance.

Yesterday, Kolton had his last visit with his opthamologist before his surgery. While we were sitting in the waiting room, I couldn't help but notice all the children waiting as well. My attention was drawn to a little girl around 4 that had down syndrome. Not because she had Down Syndrome, but because she was running around and trying to open the door and happened to be a CUTIE!! She was there with her father who was a police officer. I couldn't help but watch him as he nervously glanced around the room at everyone, and I know he was wondering what other people were thinking. He was so tense. I could see in his eyes that he was wondering if people were judging him or his daughter. She eventually sat down to play with Kaylee, Kolton and another little girl. And as I watched these children, complete strangers, play, completely blind of each one's differences, I just wanted to cry. In that moment, she didn't have Down Syndrome and Kolton did not have Fragile X. They were just two children playing. I wanted to tell that dad, that it was Ok. That I understood how he felt. I am always wondering if others are looking or judging Kolton. I wonder if strangers can tell he is different. I glanced at the dad watching his daughter playing, and he looked up at me and I smiled. He smiled back and at that moment I think he knew that it was Ok. He was no longer tense and actually sat down. And for the first time since Kolton's diagnosis, I didn't feel alone. I have known and realized that there are others out there w/ different children, but yesterday was the first time I have been in the same room w/ another parent that has (probably) shared my thoughts and feelings. I am not alone. I am not over Fragile X. I am not over Kolton being different. But it's ok. I am learning that I can feel sad, but should not dwell. I have learned that for every step I take forward, I may fall two steps behind. I am not alone, even if I feel I am.


Kolty,
I will always walk by your side so you will never be alone.
I would never trade you for anything in this world. You make my heart beat:) I will love you forever.

Mama (AMama)