Twinkle Twinkle

This blog was started as a dedication to my son, Kolton. I wanted to help other moms see that just because their child is different, they are not missing out. Different or not, children are a gift.

When Kolton was diagnosed with Fragile X, I thought my life was over. I knew that I was such a weak person, I could never over look the diagnosis. I was so wrong- Having a child that is different just opens up a different chapter in your heart, you didn't know was there. I have been lucky to find the chapter, sooner than later.

Being a mother of two- I want to always be fair and equal to both my children. So, I feel a little guilty not sharing a little about my AMAZING daughter, Kaylee!!

What can I say- she's my best friend, she makes me smile even when I want to scream, she's my light at the end of every tunnel. I can't get enough of her- she keeps me on my toes, you never know what to expect from her. She's either the storm or the calm after the storm. She is free spirited, innocent, and an angel right from Heaven. Her eyes sparkle like diamonds and can light up the dark. I can close my eyes and see her blonde curls blowing in the breeze. She takes my breath away! She is my sunshine. She is my twinkle twinkle little star. Kaylee is my reminder that I can not fall apart. She is my strength. She is my encouragement when I want to quit. She is my smile when I want to cry. She is my support when I want to fall. She is my rainbow after the rain. She is my hope for a better future.

She is my girly girl tomboy. Kaylee would jump in a puddle wearing a beautiful dress. She loves flowers, butterflies, babies, kitty cats, books, purses, ponies, school, and shoes!!

Kaylee- There are not enough words in the world to describe what you mean to me. You Are My Dream Come True. My Wish Upon A Star.

I love you more than all the stars in the sky!

I Love You, Baby
Mama

Pitter Patter

So, Kolton is doing an OUTSTANDING job using his walker!! He can use it pretty much by himself. Todaywe went for a walk in the yard and he loved it!! He was all smiles!! I can't wait for his PT, Lisa, to see his progress!! Fragile X affects learning, but I have to say Kolton picks up pretty fast on new ideas!! Especially if he likes them! I know it will not be long before I hear the pitter patter of little feet!!

I can't help but realize lately that Kolton was given to me for a reason. He is saving me. I have never felt this kind of unconditional love that he gives me. He is my addiction. He fills the part of my heart that was broken from life-from disappointments, failures, hurt, lies. Kolton needs me- he comes to me for reassurance, for comfort, and he trusts me. He is teaching me to trust myself. If I died tomorrow, I would be fulfilled for I have come to know what true love feels like. I am finally allowing old wounds to heal and letting go of the past. I want to be a better person.

I know one day, Kolton will move on and have his own life, and it won't be "cool" to hang out with his mom, but I know that we will always share a bond that can not be described with words. I know that some days will be better than others, but I will never stop trying to make life better for my son. He is my shining star, the love of my life and always makes my heart, pitter patter:)

I love u, Boo Boo

Luv,
Ma

Not Just Good-GREAT

WOW, once again a bad day turned-not good, but GREAT!!! Kolton never ceases to amaze me with what he knows and has learned. Today, he did two great things on his own that we have been working on for a couple of weeks.

Kolton is a low toned child- meaning he has low muscle tone and needs constant "stimulation." He likes to rock himself when he gets bored, tired or upset. It's a way to calm himself. A few weeks ago, I let out to Shannon, his AMAZING, therapist, that the rocking really bothered me. I guess it was like a visual reminder that he is different. (I will always try to refer to Kolton as "just different" as we all are in our own way). Shannon recommended a rocking horse or toy that Kolton could go to when he needed "his time." So I found his rocking moo cow. The best thing I have ever bought- and I buy alot!!! After a day Kolton was able to rock himself. I have scheduled a "rocking time" for Kolton everyday before his naptime. He rocks for about 20-30 minutes on his moo cow and then drifts off to sleep. Well today - when he was ready and needed his time, he crawled over to his moo cow. He's such a smarty!!

Kolton also uses a battery powered toothbrush to help stimulate his mouth/face muscles. To be honest I haven't been too consistent with using the toothbrush, but have tried to use it everyday for the last couple days. This morning when he saw the toothbrush, he opened his mouth!!! YAY- he usually hates it and it's more like a battle than something fun. Today he not only tolerated it, I think he slightly enjoyed it. YAY for Kolton.

After breakfast is finally over, Kolton and I enjoy some play time. We work on skills like "object permanence" (which he has down- another YAY for Kolton!) and putting things "in"(we're still working on that one)! We do some rough housing-the rougher the better, Kolton's like a little wrestler!! He has the cutest giggle that could melt anyone's heart. He crawled over to where I was laying on the floor. He put his head on me and said ma!! He has been saying ma for a while, but we don't know if he is trying to say "mama" or "more" or if he's just making noise, but today I am convinced he was saying mama and meant it!!

Such small milestones, that make such a difference. Milestones that so many take for granted. I know Kolton will some day feed himself, walk, and say mama and really mean it- he is just on his own time. When he reaches these milestones I will not only be super proud of him(and have a party) but I will be 100% more excited than if Kolton wasn't different.

It all goes back to appreciating the little things, and being really proud of working hard to accomplish something. So many people do the least they have to just to get by- heck I was one of them. Day by day, I am learning that I can't live in the past and wonder how things could be different. I can't live in the future and wonder what Kolton might not do. I can only live in today and now what Kolton is TODAY. With such a great day like this and so many small accomplishments made today is the only day I want to be in!!!

It's a Great Day.

Luv U More Everyday Boo Boo:)

XoXo,

Ma (In time Mama)

I Think I'm OK

Anyone that knows Kolton, knows that he LOVES bags or anything that makes a crinkly noise. Yesterday we went to get groceries, and Kolton decided that he would be in charge of the bag of chips!! Not wanting him to get upset, I asked the cashier to scan the chips first so I could give it back to him. She asked me how old he was and told me he is so cute. You're probably wondering what's the big deal. For me this is a big deal- because I didn't think it was a big deal!! Usually when someone asks about him, I automatically feel I need to be defensive. I didn't feel this way and I think this is the first step to realizing I am going to be ok.

I know I will always have good days and bad, but I feel like I can let my guard down - maybe an inch!! I don't need to shelter Kolton. I don't need to worry about what others are thinking of him or if people are staring. Kolton is what he is and too me he is perfect.

I wish there was no such word as handicapped. Society, even myself can hear it and automatically think something-something usually not good. But who is to say that my son is handicapped? Yes he is a little behind, but he is still a child. Kolton loves to play, laugh, and have fun just like any other child. He may just do things a little differently. And it doesn't matter what kind of day I have had, but when Kolton falls asleep in my arms, I am just a mom- a mom to a little boy. And that always makes my bad day end good!!

Luv u, Kolty X0X0

Looking Forward To Therapy Today

Today, Kolton has OT with his therapist Shannon. She is amazing and he LOVES her!!! I love seeing his face when he recognizes someone familiar coming in the door. So many children with Fragile X show signs of Autism and I thank God that Kolton doesn't. He is so happy and very social. Kolton has been receiving therapy for about 6 months. He has seen Shannon since February and has made amazing progress. Kolton has (what we think) a sensory problem and doesn't want to feed himself or touch food. Well, until recently!!! He is now TOUCHING everything I feed him!! I am so PROUD!!! I know it sounds kinda dorky, but he really makes me appreciate all the little things about life.

When I first learned that Kolton may have Fragile X, all I could think of was why me, why him , what have I done to deserve this? This was not part of my perfect family plan. I had big plans for him. But now I think why me? Why me, what have I done to deserve this AMAZING little Dude!!!

Kolton may or may not do this or do that, but I would never trade him for anything in this world. He is the LOVE of my Life!!!

I think this will be a good day!!

I LUV U BOO BOO BOY
Luv, Mama

Good Day, Bad Day

So, I just started this Blog. I need a way to release my feelings. My baby boy was recently diagnosed with Fragile X. It has been about a month since I received the test results and I am still undecided how I feel or should feel. I have felt every emotion that a human can feel. In the mornings when I wake up, I wonder if this is going to be a good day or a bad day.