Worlds Away

Another month has passed by and now it's July. Less than a week into it, and July has proved to be a tough month already. On the 3rd, Kolton had his eye surgery. I am relieved it is over. Kolton was diagnosed with esotropia (cross eyes) when he was around 6 months old. This was the original reason we thought he was delayed in some of his milestones. Come to find out, cross eyes is pretty common in fragile x/low muscle tone kids. I pray that this will be the last time we have to go thru any type of surgery. When the nurse took him from my arms, I could feel my heart being ripped out of my chest. In some sub conscious way, I was taken back to 19 months ago when my baby boy was in the NICU. I will never forget how I felt when I was discharged from the hospital without him. A feeling I would not wish upon my worse enemy. I can remember it like it was yesterday. Like it was moments ago. I wasn't allowed to even hold him. I could only touch his feet. And to this day, I still sneak into his room at night, sit on the floor, slide my hands thru the slats of his crib and touch his feet:) I was always so scared to leave him, fearing that may be the last time I would touch him. I am still like this. I hate to leave him. I hate not seeing him. Even though he drives me insane sometimes!! I need him. So when the nurse took him away from me, in my mind I re-lived every painful moment of his birth. I sometimes wonder why God makes a mother suffer, but then I see what joy Kolton brings to me and I am grateful that I still have him. That I can hold him anytime I want, and I do. I hold him close and I tell him that he is my world. That I am so sorry I did this to him. I would take take it back a million times over. And he just smiles:) He smiles- I know he wonders why I cry. Like he is telling me that he is ok. That he would much rather live in his own little world, than the one we are convinced is normal. He has no worries. Kolton's life is so simple. Eat, Sleep, Play. Sometimes, I wish I could slip into his world. But even if we always live in two sepearte worlds, we are joined by love. I have no doubt that Kolton knows, feels, and gives love. This is the time I thank God for giving me this miracle son. A son that will always know innocence. A son that may not always be the smartest, that may always be simple, but at least he can move and play and feel life. Kolton, no matter what he does or does not do, he is my son. At times, I may not understand why God gave me this life, but I will try to do the best I can. And when the day comes for me to leave this world, I hope God is pleased with what I have done. Until that day comes, I am living in the moment when Kolton tilts his head and puts his face so close to mine our noses touch and he stares into my eyes, for I am convinced that is Heaven on Earth.

My dearest Kolton,

You are my angel from above, I love you to pieces.

Though it may sometimes seem like we are in two seperate worlds,

I will always do my best to come to yours.

You are what makes my heart beat.

I love u forever,

Amama

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)

Miracles and More

It's been a while since my last post, but the days in between have not been so great and I just didn't feel like updating! Some updates on Kolton's progress- he can now pull himself up to stand!! He crawls right over to the couch and stands up. Such a big boy!! He has really gained confidence and sometimes (when I'm lucky) he greets me in the morning, by standing up in his crib-SO CUTE!!! I remember when he couldn't even sit up on his own and I wondered if/when he would and then he did. Or when he couldn't crawl and I wondered if he would and he did. And then I wondered if he would ever stand and walk and now he is!! I don't know why I ever doubt him!!

Kolton, for the most part, is nonverbal. He has an occassional Ma (and I know it's really Mama), but other than that he just kind of makes noise and somewhat babbles. Shannon and I have tried for the last few months to show him how to sign for a few things. Mostly "more". I wondered if he would ever understand the concept after so many failed attempts. But on Saturday, while we were playing, he grabbed my hands and signed for more!! I don't know why I ever doubt him!!! So it is Tuesday and he is still signing for MORE- more playing, more hugs, and of course more food!! I know that he does fully understand what more means. I so excited about more- than anything else he has accomplished- this a reaasurance to me that he does understand and does want to communicate and is trying to make a connection. YAY for Kolton!!!

Yesterday, Kolton had a visit from a new OT therapist. I HATE this! Shannon can no longer see Kolton, thru the school that provides all his therapy services, so he is being "transfered" to a new therapist. I don't like to be rude or not even give people a chance, but I feel like I have already been thru enough the last few months just trying to survive and now have to go thru another change. I don't want a new therapist, I don't want to explain/describe Kolton's diagnosis and I sure as hell don't want to explain to this new therapist, everything my son can't do. I feel like he is being diagnosed all over again. It's like cutting open a wound that has started to heal.

I just feel like I am in the hating mood!! I hate Fragile X- I hate that it sometimes takes over my life. Sometimes, I wish I didn't even know. I hate that Kolton will be labeled his whole life. I hate that others will not always understand. I hate myself and that I passed this to him. But I know the more I hate, the less Kolton achieves. I know I must move on from these feelings and in time I will. This is all so fresh in my heart and some days are harder than others. I try not to show this side of me, so writing it in a few sentences is the only way I can let it out.

Even though I have all this hate - I have to say I am a little excited that Kolton will be receiving his very own walker!! We will have it custom painted for Kolton- maybe camo!! So I am looking forward to that!!

I always wonder if I am doing enough for Kolton. I read that parents who have special children witness a miracle everyday. In time I know I will heal, and he will continue to grow and accomplish many tasks. I have to remember that nothing lasts forever. Things will always change, and I can/should/want to only look forward to MORE!!

I love u Kolty. U are my miracle and more.

Love u lots,

Ma

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments forpropagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.
" Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."

I Wouldn't Change My Son For The World, But I Wish I Could Change The World For Him

Buddies!!

Come On Mama!!

Let's Go!!