New Beginnings:)

Wow, it's been a while!!! All I can say is September is definately a month to remember:) It was such a great month, sad to see it end. Kolton and I both have made big steps this month. To start off, the 2nd weekend of September, we attended our first Fragile X support/family outing. We drove up to Dallas for the weekend and were able to meet some great families with Fragile X kids of all ages!! We met some new friends, Christy and Cale. They are newly diagnosed as well, and it was nice for me to get to share my feelings and suggestions with Christy. We both know exactly how each other feels. I wish we lived closer!!

I had such an amazing time- seeing the kids and for the first time I felt like Kolton really fit in! No one cared if he threw his blocks, flapped his arms, or chewed his hand. He was one of them. He was accepted the way he is. In that one day, I was in his world. I did not have to worry or think about what others were thinking. What he was doing/ acting was the normal. I felt like a weight had been lifted off my shoulders. Today I still feel like that. I don't care what anyone thinks- I know that I love him for exactly what he is, and somewhere in this world he belongs, he fits in. Kolton will always fit in with me:)

The middle of September, Kolton's previous OT therapist, Shannon returned to Brighton (school Kolton receives therapy services from). This was like Christmas for me!!! Oh what a gift, to have Shannon back:) He loves her, and by her second visit, their relationship was back to were it had been!! I cannot wait to see the progress he makes with Shannon. Speaking of progress- he has made TONS. I don't even know where to start!!! He LOVES to play "BEANS". Yes, beans!!! This is a sensory play and the first time he was introduced to beans, he crawled away and would not come within 3 feet of the tupperware of beans. Now he will dig, pour, and dump the beans everywhere. So exciting!!! Except I am finding beans everywhere. I changed his diaper this morning and found a bean:) Sent a bag to my mom's this morning, and she found a bean!! Was at the store the other day and found a bean in my purse when I pulled out my wallet!! Beans are an instant smile for me, I can't help but think of Kolton (and all he has accomplished). When I walk pass the bean aisle in the grocery store - I smile:) Thanks Kolty:)

Kolton also has the "IN" concept down and actually helped Kaylee pick up her toys. He put "IN" two of her pet shops in her toy box!!!! Go Kolty!!!

In September, Kolton also started music therapy. I was skeptical at first, especially when I listened to the music!!! But he seems to really enjoy it and I have seen a difference in his behavior since we started so I now believe it works!!! The music is very strange and made of strange noises (such as dolphin shrieking sounds) not very appealing to the everyday person. However, to Kolton, the music helps him be more aware of his body, his surroundings and gives him a lot of input. It has been compared to riding a roller coaster. The feeling we get from riding a roller coaster, Kolton gets from listening to strange music!!! Oh, how I wish I could slip into his mind- I would love to see whats going on in there!!! I know it is something amazing- and I am missing out!!

Earlier this year, around April, Kolton started using Sure Step orthotic ankle braces to help him walk. Well the little monkey, outgrew them in no time and has now received new and improved orthotics in a cool camo print!! Kolton has such low muscle tone, he has a hard time standing. Low muscle tone also causes loose tendons and makes Kolton stand on his ankles!! His feet turn in so much he is literally walking on his inside ankle. Ouch!!! With his Sure Steps, he was so strong he was turning them in as well, so his new orthotics are a little taller. The right one goes up to the bottom of his knee and the left just above his ankle. The right one is also a "double" orthotic, a smaller one the fits into the larger/taller one. Kolton's right foot is worse than his left, the reason for the extra support. These will in time, train Kolton to keep his foot in the correct position and not roll them over. We are walking every chance we get. I am secretly hoping he can make a grand entrance at his birthday party, but if not, his walker received a super cool makeover with racing flames and a custom flame name plate!!! So cool:)

September was filled with lots of New Beginnings. New friendships, new starts and new accomplishments. Kolton and I are both growing everyday. I am learning more about myself than I ever have. I am actually amazed at all I can do!! I am no longer wandering in the dark, but slowly finding my path through the tunnel and towards the light. Somedays the light is still dim, but I would take the dim over dark any day!! Fragile X is no longer my every thought. I am doing things, going places, and actually having friends!! Wonderful friends that totally accept and love Kolty for who he is. I realize that the people I love and that love us will accept Kolty for himself, if not they lose- not me. Kolton is amazing and he shows me a miracle everyday.

September in Texas started with rain- something we haven't seen almost all year. I have to say that rain is a misconception. Most would agree that rain brings on gloomy days and sad thoughts. But I would have to disagree. My September has been the best month I have had in about a year. Our trip to Dallas, was very wet. It didn't just rain, it poured, heck it flooded. But I saw it in a different aspect. What happens after it rains? Everything grows. God gave me the rain, to help me grow. Whether its tears or rain drops falling, I say let it pour, cause after every rain storm is a rainbow. Kolton is mine.

Kolty,

Let's grow together.

Love,

Mama

I am the cutest:)

What's Normal Anyway?

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

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."