One Day At A Time - Dedicated To My Little X Man, I Hope You Always Know You Are My SONshine:)

2010-05-03T13:14:00.001-07:00

Sunday morning, Kolton woke up sick. He crawled inbed with me and I held and rocked him back to sleep. As I lay there holding him, feeling his heartbeat, I couldn't help but imagine that this is what heaven must feel like. Innocence at it's purest!! I could feel my heart bursting with love and in the moments before I feel back asleep, holding Kolton against my chest, love, faith and hope were restored!!

Walk Through This World With Me...

2010-03-22T11:52:00.000-07:00

Have you guessed it? Yep that's right!!! Kolty is a walker:) He just let go one day and walked all on his own! Super proud of the little stinker. He has done amazing, and I have to blame it on his Zoloft. I mean this a miracle drug- I have also been taking it and wow. I feel so much better, so I can imagine how he feels! Lots of new things going on around here. Kolton has learned to use a straw, shake his booty, walk, crawl thru a tunnel (on his 1st attempt:) and babble nonstop. I swear, every now and then he actually says a word that is filed away in his little library brain and at any given moment it just pops out! You have to really be listening to him, cause if you turn away you may miss it. The other day, I know he said bath, what, baby, and ball. And no I am not the only one that hears these words, Kaylee does too:) Kolton is so proud of himself that he can walk- last night I went to a friend's house for dinner and left Kolton at home with Dada. Of course he missed me, (as I missed him too) so when I came home he had to show me how excited he was by walking as fast as he could from couch to couch. Oh I love that little monkey! He still crawls about 70% of the time, but hey, I will take what I can get:)

I am currently struggling with the idea of sending him to a daycare center part time for some kid/social interaction. I am having a hard time letting go, so as of right now I still have not filled out the enrollment form. Lol. It is sitting on the kitchen counter as a reminder that he needs/should go, but when I am ready I will do it. Shannon and I scoped the place out, and I do really like the place just not the idea of Kolty not being with me. I feel a panic attack coming on just thinking about him going. We did schedule his OT session there 2 weeks ago and he LOVED it. Didn't even know that I had left the room:( Trader!!! While he was there he crawled through (on his 1st attempt) a tunnel. I was so proud, but of course Mama was on the other end. He probably would crawl through fire to get to me:) As I would also for him:) He really enjoyed the change of scenery and liked all the new toys. He suckered Shannon into reading him a book over and over, with his unforgettable dimple smile and giggle!! But she LOVED it!!! I was jealous! Lol. So in the near future, expect a 1st day of school entry from me. It may be a little on the wacky side cause I may have to double my Zoloft dosage that day (or have a tequila shot).

Shannon also bought Kolton some really cool (disposable) cups with a straw and on his 2nd attempt was successful at using them!! Woo hoo Kolty- another OT thing we have been working on. Using a straw will help build his oral muscle tone, while giving his some oral feedback. It's like a 2 for 1 deal. I have been making him smoothies and milkshakes so he can really get a mouth workout trying to suck them through his straw. He loves it, almost prefers them now to his sippy cup. We went out to eat the other day and he thought he was real cool because he could drink his sweet tea like a big boy:) Yep, sweet tea, his new favorite! Thanks Shannon, for the cool cups. Geeze, Shannon is getting a lot of recognition on this post!!! Lol, she deserves it:)

Over spring break, Kolty learned how to shake his booty. Hilarious!! I sing this really cheesy line- Shake your Booty, Shake your Booty, and he goes nuts!!! Shakin' his little money maker!! I swear this boy has the cutest tush ever!!! Since he was a baby I have said he will grow up to be an underwear model. So to see him shake it, oh so so so cute!!! It really looks a little more like dirty dancing, somewhat inappropriate behavior, but hey- boys will be boys, right?!

We were also in a minor accident over spring break. Kolton and I fell off our John Deere Gator, while Dada was driving. He had to get 3 staples in his head. But he was such a trooper, and every nurse working that night had to come see Kolton. He was the talk of the ER that night. What a flirt- giggling, batting those baby blues at every nurse that came in. So at any given time, he had about 5 nurses coming in and talking away to him, all the while he was just eating it up. Geeze, I felt like I needed to beat these ladies off with a stick!!! Haha, but what do I expect, he is the cutest baby boy ever!!!

The same day, March 18th, that we were recovering from the accident, was also our one year Diagnosis Anniversary. Wow, one year already. All I can say is, I made it. I can still remember that day like it was yesterday. I can remember what I was wearing, what Kolton was wearing, what the Doctor was wearing- get the idea!!! We went to Kolton's pediatrician because Kolton had been sick. I knew the test results were probably back since we had gone on February 27th for blood work. Our pediatrician at the time, wanted to call and get the results. I didn't want too- I already knew in my heart. I had to sit, what seemed like forever, for about 30 minutes while the doctor called for the results. He came back into the room and said the results were back and Kolton did have Fragile X. I can't even explain what I felt. Numbness, I wanted to scream, cry, die- I wanted to hug my doctor and sob like a baby, scream why us, pull my hair out, anything I could think of. But I didn't. Kaylee was also with us and I had to be strong for her. I let a single tear run down my cheek, my doctor said, this is what we had expected anyway, we must now move forward and get him the services he needs. I hated him for saying that. I wanted him to hold me like a father would and say everything would be ok, it was ok to cry. But I understand, he was just a doctor- I still struggle with the fact that doctors can seem so cold, what if it was them in that situation? That's why I LOVE our new pediatrician!!! Yep I changed, cause I just didn't feel like our old doc was personal enough.

So in honor of our anniversary, I have decided to get a tattoo. A tattoo that brings awareness to fragile X, one that reminds me of how far I have come on a personal level. I am a changed person, good, bad, and all that's in between. Everything has a whole new meaning for me, including the song that Robert and I danced too at our wedding- I can't help but sing the verse over and over with each step Kolton takes-

Walk Through This World With Me, Go Where I Go
Share All My Dreams With Me
I Need You So
In Life We Search
And Some Of Us Find
I've Looked For You, A Long Long Time

Kolton,
I will always & forever walk with you, a million times over through this world.
I've looked for you, a long, long time:)
Xo,
Mama

Mysteries Of The Mind

2010-01-15T07:04:00.000-08:00

I'm so excited I don't know where to start!! The 1st week of January we took a trip to the MIND Institute in Sacramento and the day after we arrived back home, Kolton fed himself!!! Yes you read that right!!! Kolton FED himself and is still feeding himself today!!! YAY, I am free!! Free to just put food on his high chair tray, snacks on the floor (in a bowl:), whatever, and he will eat it!!! OMG!!!

Ok, so let me back track a little so I can lead up to how Kolton FINALLY decided to give me a feeding break!! Robert, Kolton, and I were lucky enough to get a paid trip out to California to the MIND Institute. (This is like going to the White House and meeting the President for FX families). I have to admit, that our trip didn't turn out exactly how I had expected, but I did have an AMAZING time and would do it over in a heartbeat. I had expected the trip to be more about Kolton, but turns out, I was the lucky one and participated in numerous studies/research tests. I kind of enjoyed it being all about me for once!! Right now, at the MIND they have a ton of studies going on for fx carriers (I am a Carrier). My schedule included-blood work, Neurophysiological Assesment, Psychophysiological Assesment, Psychological Interview, Genetic Counseling, NTRI-TS Assesment, and a very long MRI. Pretty Fancy, Huh? Kolton participated in an eye tracking assesment and developmental assesment and also gave blood. He got off easy this time:) On Wednesday, January 6th we met with Dr.Randi Hagerman, our HIGHLITE of the WHOLE TRIP. She went over tons of info and said that Kolton is doing wonderful- we are on the right track and all his therapy/services are the right ones for him!!! She did reccommend ABA therapy for him, and we are looking into that right now. Kolton is right on track developmentally (even a little ahead in some areas), compared to other fx toddlers his age. The only kind of "bad" news we heard was Kolton has pretty severe Low Muscle Tone, which we already knew anyway. This is the reason his ankles bend over so bad, and why he is still not walking. Low muscle tone is one of the characteristics of fx, but like all of them can range in severity and Kolton falls into the severe category. So we have increased his PT therapy to 3X a month compared to 2, and plan on doing therapy riding every chance we get. Dr. Hagerman did say she thinks he should be walking in a few short months and did prescribe him Zoloft. Turns out, Zoloft is like a miracle drug for his age- it will help his MUSCLES tighten, help with speech, lessen anxiety (which he has almost zero of:) and help him not to regress (common in fx). Dr. Hagerman did also say Kolton DOES NOT fall on the Autism Spectrum, he is TOOOOOOOOOOOOOO Social and is very engaged in his surroundings!!! YAY, go Kolty!!! The zoloft will also help him stay social and hopefully keep him from the Austism diagnosis. We were very happy to hear all the great things that she had to say about Kolton, including that he was one of the cutest little fxers she has seen!! Well we all knew that already though:) During our visit, besides the not walking yet, my other main concern was Kolton not having any interest in feeding himself. If you know Kolton, you know he LOVES, LOVES, LOVES to eat, anytime, anywhere, but only if he is being fed. I wanted to know if this was a sensory/tactile defensive situation or what I could do to speed this process on- this is what Dr. Hagerman replied (in a nut shell)-

I have fed Kolton for about 2 years and now he expects it. It's not a sensory problem, it's more of a hard headed, habitual, OCD problem!! He has it in his mind that Mama feeds him and thats just how it is. She said to give him the chance to feed himself- just lay his food in front of him, let him decide what he wants to do.

So when we got home, I did just that. I out his dinner on his high chair and to everyone's amazement he picked up his fork and ate, and ate, and ate!!! Holy Moly, I am still in shock one week later!!! This little monkey could fed himself all along. OMG, all along he could do this and he was playing me for a fool!!! Shannon (his OT) and I have been working on this for a YEAR- thru beans, rice and very messy birdseed that by the way doesn't vacumm up as easy as you would think. All this sensory play, tactile defensive play- and he could do it all along. So I am thinking that Kolton probably knows way more than he lets on, and he just keeps it to himself so that we can feel like we are in charge!! Today, Kolton is also PICKING up his food with his cute little fingers and eating it. It started with cereal, and now is not limited to anything. Chicken nuggets, carrots, peas, green beans, french fries, sticky rice krispy bars, gooey jelly bars, soft muffins, you name it, he'll pick it up and eat it!!! Oh, the freedom I have found:) I can just give him a snack all day and just let him eat. I have always worried that he wasn't getting enough food, cause I was the sole feeder here and sometimes didn't have the time to sit down and feed him a snack. Heck just his 3 meals a day took about an hour each- So now I am just LOVIN all this so called free time where I can sit him in his chair and let him go to town. I actually got to enjoy my dinner the other night instead of scarfing it down super fast or eating a cold dinner because I had to worry about feeding Kolton. Yep, cold food and heartburn is a thing of the past for me:) Oh the simple things in life!!! The only way I can describe this to all you people who have not been blessed with the miracles a special child brings- it was like winning the lottery for me. Yep, it was THAT big. Nope, you may never understand it, but that's ok. I do and that's all that matters:) It is like watching the impossible, become possible. Witnessing first hand the mysterious ways the mind works. And the most rewarding of it all, not watching Kolton actually fed himself, but seeing his face light up because he is so proud of himself. Watching him pat himself on his chest like he is saying "Good Job" to himself. I LOVE it and him.

I love this kid, I love him. He is God's gift to heal me. He makes me forget about the past, and not focus on the future. I am stuck only in the moment and what today holds for us. Kolton is like that good mystery novel you can't put down cause you just want to know what comes next. And then wanting to read the sequel after you finish the book!! I can't get enough of him and each little mystery that unfolds in front of my very eyes is like a being present at a miracle.

Kolton,
Thank you for choosing me to come along with you,
as we discover all the mysteries of the Mind:)

XoXo,
Mama

Kolton Feeding Himself For The First Time:) WOO HOO!!

2010-01-10T16:26:00.001-08:00

Merry Christmas

2010-01-10T08:10:00.001-08:00

New Ventures

2009-12-18T07:13:00.001-08:00

Whoa! Where does the time go? I cannot believe, a week from today is Christmas! Lots of exciting things going on since my last post. Kolton turned the big 2 on 10-30! Such a big boy!! He had a Cowboy birthday party, but he was a little under the weather the day of his party so he didn't enjoy too much of it!! He got lots of great gifts and everyone else had a great time!! The beginning of November, we had 2 little boys come out (they also recv therapy services from the same place Kolty does) and do therapy horseback riding!! Super exciting!!! Kolton shared his pony, Coco Beans with the little boys, and they loved it!! We had 2 little ones scheduled to come today also, but one was sick so we had to cancel for now. I am super excited to get to share Coco Beans with other special need families. I have wanted to run a handicap riding program for a while, and am praying this is the start of something great. I will keep you posted!!

Kolton is on the verge of walking anyday now, he rarely uses his walker anymore and prefers to just hold your hand. He is working on confidence, and soon as he gets enough he will be off on his own!! I can't even picture in my head, the freedom he will have with walking!! I can't imagine him walking in the store or outside or anywhere!!! I am a little scared!!! But soooo ready- he's so heavy to be carrying around still:)

Ok- for the biggest accomplishment this month- Brace yourself, you may faint when you read what I am about to write!!!

KOLTON FED HIMSELF!!!!! WITH A SPOON!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
If I didn't witness this event first hand, I would not believe it!! He not only surprised me with his talent, he also shared it with Shannon (his OT, whom we now refer to as his 2nd momma, cause he called her mama one day, yes I was a little jealous!! But he LOVES her and so do I, so it's ok)
We were completely shocked, just to refresh everyone's memory- Kolton has NEVER, EVER fed himself, will not even pick up food or a spoon. During his therapy session, we were practicing hand over hand, helping him pick up the spoon and put it in his mouth, when all of a sudden he picked it up and put it in his mouth ALL by HIMSELF!!! We were screaming!!! And he looked at us like we were a little nuts!!! I swear he was thinking- Whats the big deal!!! I can fed myself I just don't want too!!! In fact, I know thats what he was thinking, cause I know Kolty and he is just so hard headed!!! and a little spoiled!! I still get excited when I think about that day!!! Brings a BIG smile to my face- I have never been so proud in my life!!!! You Go Kolty!!!!

Kolton also has a new word- Uh Huh!!! sooo cute!!! of course he doesn't use it appropriately but who cares!!! Its so dang cute, he could say Uh Huh for anything and I LOVE it!!!! The best part about it, when I ask him to say Uh Huh, he says it!!! YAY for Uh Huh!!!! He also is babbling a lot, and can say Ba for ball, bath and basket, Pa for plant, Ga when he sees Gramme, Fa sometimes for fan!!! Speaking of speech!! I decided to switch his Speech Therapy to a new facility that offers speech 2X a week. He was previously recieving speech 2X a month. Needless to say, I think I made a mistake! Yes, I was wrong:( The new place, we have to go to, versus them coming to our home. They also prefer to be one on one with Kolton, which means I have to sit in the waiting room. Granted, we have only gone once (we just started), I just can't do it!!! I could hear him screaming while I sat in the waiting room, and I have come to the conclusion, I am not ready for the seperation!! So I think I will stick it out for the rest of December, and in January start back with Brighton again!!!

The first week of January, we will be flying to California to the MIND Institute!!!! For those in the FX world, you know what this means and how excited I am!!! For those non FXers, this is like going to the White House and meeting the president- well not Obama, but a President you may have liked in the past!! Needless to say this is a HUGE thing for me and Kolty!!! A wonderful organization called Miracle Flights, bought us our plane tickets!!! WOW, I am still speechless:) I am in awe that there are organizations that are willing to help our special kids in any way possible!!

I have to say, when we were first diagnosed, I use to fear what the future would hold for Kolton. What struggles he may go thru, what he may never get to do, and worse of all, what other s would say. I don't know if it is because my life has been some what of a sheltered life as I like to refer to it. I haven't traveled to far away places, worked at an awesome company, all I know is the life immediatley around me. I still live where I was raised and have never really ventured in this world. I haven't really accomplished much. Maybe it was my own fears that I was putting onto Kolton's future. I used to be scared of what others would say about Kolton, if he would be teased in high school, would he have friends, will people understand where he is coming from? But the more I am venturing away from a "normal" life, the more I realize how many people really, genuinely care about our special kids. I can't help but be amazed at how many friends I have made, support I have received, and places I will travel to. All because God chose me to be Kolton's momma.

Whatever Kolton, does or does not do, I am at peace knowing that he will be LOVED wherever he goes. He is infectious, his innocence is consuming, his happiness is addicting and his smile contagious! Here's to the Life ahead!!! Uh Huh:)

Merry Christmas & Happy New Year:)

Mommy's Little Lion

2009-12-18T07:12:00.001-08:00

The Cutest Pumpkin in the Pumpkin Patch!!

2009-12-18T07:09:00.001-08:00

Happy Birthday To Me!!!!

2009-12-18T07:03:00.000-08:00

2009-10-12T14:54:00.000-07:00

New Beginnings:)

2009-10-04T12:40:00.001-07:00

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:)

2009-08-27T20:19:00.001-07:00

What's Normal Anyway?

2009-08-21T08:53:00.000-07:00

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

2009-07-05T08:46:00.000-07:00

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

2009-06-16T10:33:00.000-07:00

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

2009-05-12T08:29:00.000-07:00

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,

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

2009-05-04T09:38:00.001-07:00

2009-05-04T09:33:00.000-07:00

Buddies!!

2009-05-04T09:29:00.000-07:00

Come On Mama!!

2009-05-04T09:25:00.001-07:00

Let's Go!!

2009-05-04T09:22:00.000-07:00

Look At Those Pretty Eyes:)

A Walk To Remember

2009-05-01T07:56:00.000-07:00

I am so excited to write this new post!! Kolton had such a great week. Yesterday, Kolton walked (with his walker) all the way to Gramme's house, back home and then to the mailbox!!! YAY for those little legs!! I am not an expert in yards/feet- but for anyone that knows where I live- that was a BIG WALK!!! I am so PROUD!! I know walking independently is getting closer and closer!! Kolton wants to stand up all day- and has been cruising back and forth along the couch for the last 2 days. Go BOO BOO!! Wednesday, Kolton started his speech therapy and I think he did pretty good. So I am excited to see how things turn out once he gets to know the speech therapist better.

I am also SUPER PROUD of Kolton for accomplishing a major milestone- HE CAN PUT THINGS IN!!!!!!! YAY for Kolton- I am convinced that he's really a genius and is so smart he just can't get everything out!! We have been working hard for a few months to "put things in" and Wednesday I decided to try again (I don't like to push him too much) and he dropped his blocks right into his bowl- like he was an old pro!! I was screaming with JOY!! And called Shannon right away to share Kolton's victory!! I called her before I called dada!!! Oh well-

Kolton's personality is really growing- It's like a flower that is in bud and you can't wait for the bud to open to see the flower!! He is starting to act more and more his age and gets into everything!! He pulled his diaper off the other day when he woke up from naptime!! And he is putting all kinds of thing in his mouth (but not food!) and I am starting to get a little nervous. I feel like a new mom again- fussing over what is on the floor and is he going to choke on this or that!! I remember a few months ago, one of Kolton's therapist picked up a bead that Kaylee had left on the floor. She said she didn't want Kolton to choke and I told her not to worry because he NEVER puts anything in his mouth!! Well not anymore!!! I am actually a little excited that I need to clean the floor more often!! It's a step towards "normal". I find the more I treat Kolton like he is "normal" the more normal he acts?? I know for a while, I was treating Kolton like he was different. Wanting to do what I thought was the best for him, really wasn't. It just made me angry that I was treating him differently. I never told him no, and let him act like a wild animal if he wanted too! I was angry at myself for letting his diagnosis get in the way of being a mom. Kaylee was mad at me because Kolton was getting away with things and she couldn't! It was a mess.

So I realized that the more I treat him normal the better he does. And the better I do, and the better Kaylee does. Now when he splashes her in the bathtub and I say "no no Kolty", she thinks I am discipling him (he doesn't even know it!!) and there is a little more peace in my home!! I feel like I am treating my kids equal and am trying to set a good example for Kaylee. I don't want her growing up and treating Kolton differently. I want her to always know that he is her brother and everyone is different, but everyone should still be treated fairly.

I don't want to waste my time always over or under analyzing. We only have one chance for today and after today is over we can never have it back. I want to remember this day for what I did, not what I was thinking. I just want to be a mom to a beautiful little girl and a handsome little man. Yesterday- that's exactly what I was- a mom taking a walk with her kids. A walk that I will always remember.

Kolty, I am so proud of u-

Luv, Ma

Twinkle Twinkle

2009-04-27T21:23:00.000-07:00

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

2009-04-27T20:47:00.000-07:00

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

2009-04-23T10:17:00.000-07:00

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

2009-04-22T05:12:00.000-07:00

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

2009-04-20T06:40:00.000-07:00

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

2009-04-20T05:43:00.000-07:00

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.