Letting Go Of What Was Is Hard

Today I dropped Carter off at school early and as he was getting out of the car, the Marcus Cross Country team was running by.  They saw him and started yelling "Hey Carter, hi Carter, Carter, we miss you!" As I was driving away I could hear them hollering at him.  I couldn't help but start to cry, I cried because I knew how it was going to affect him. I cried because I miss the team like he does.  I cried because I was mad, mad that this stupid disease has taken away something my son loved doing.  When I got home I wiped away the tears and told myself I have to stay strong for him.  I cannot let him know that I was so torn up about seeing the team run by without him.
 
When Carter came home from school, I let him do his thing and didn't bother him.  He went and changed into his bike clothes and got ready to train indoors.  As he was setting up I asked how his day was knowing that I might hear what I dreaded all day and hoped that I wouldn't.  Unfortunately, he looked at me and said "I was so depressed today mom."  My heart sank and I wanted to cry so bad right then and there but I didn't, instead I listened.  I was right all along it did hurt him watching the team run by without him.  He said as he was walking into the school he wanted to yell "THAT SHOULD BE ME!" "I WANT TO RUN!" "WHY CAN'T THAT BE ME!"  He said at school that is all he could think about but that now he was o.k. He knows it will take time to get over losing something you loved so much.  I gave him a big hug and told him I know its hard and that I was sorry.  If I could take it away I would.  I decided to tell him that I too got emotional seeing them run by and that in time we will all heal.  He got on his bike and instead of doing a long ride he did a fast paced hard core ride, probably to shake it all off.  I think it worked because after his ride, he was off with his best buds Adam and Ross from CC!  Thank God he is so strong!

So all you parents with CMTers and all youths with CMT remember you will have your ups and downs but its how you handle them that counts.  Parents please make sure you take the time to talk to your son or daughter about their day even the strong ones need you.  Depression is something a lot of people don't talk about with this disease but we all need to be aware of it especially, with our kiddos! 

Until Next Time............... "STAY STRONG,BELIEVE"~Carter Hayes

Awww Yeah! Unveiling of Carter's Challenge Race Jersey & Shorts!

I cannot tell you how excited we all are about the unveiling of Carter's Challenge Race Jersey & Shorts!  Once again thank you so much Emily at Hincapie Sports for taking Carter's drawings and making them come to life! O.K. here they are!

Tell us what you think?  Hope everyone loves it as much as we do.  Now we just have to pray we get them in time for the race!  We are cutting it super short and just not sure if we will make it.  Please pray we get them! 

Until Next Time.................".Raising Awareness One Step At A Time" Carter's Challenge

CMT Awareness Month

Boy, how time flies.  I cannot believe it is almost September!  I suddenly feel like I am really far behind with everything.  There are a few things I want to ask everyone to do for us.

1. If you have a facebook account please change your Avatar to a CMT Awareness Avatar. You can find these by "liking" https://www.facebook.com/CMTAssociation please do so starting September 1st. 

2. Again, if you have facebook please put a post about CMT on your wall.  Remember, the end of Charcot-Marie-Tooth disease begins with you! Activate. Educate. Donate.

3. Twitter about CMT. 

4. Put an email together about CMT and how it affects you or a loved one.  Send it to all your contacts, the more people that are aware of CMT the better chance for a cure.

That should be a good start for everyone! 

What are we doing?

• Cotton Patch Challenge- September 17th Greenville, Tx come out and support Carter's Challenge!
• Posting CMT information at local doctor offices and businesses.
• Selling bracelets and all proceeds go to STAR INTIATIVE! Go Green!
• Carter's Birthday Wish- All month- more to come in next couple of days!

Last but not least tell 3 people about CMT by Saturday. 

Until Next Time.........SPREAD AWARENESS~THE TIME IS NOW!

"Stay Strong,Believe" Carter Hayes

Cold Feet Anyone?

Do you have cold feet? I am asking this because it seems to be a common complaint among people with CMT. I know my son, Carter complains of cold feet often and actually I have very cold feet and hands myself. It could be 100 degrees outside and I want to wear socks! I don't know if I have CMT yet but find it interesting none the less. Over the last couple of weeks I have noticed a lot of people asking about cold feet and hands, so I thought I would put out a poll to see how many people with CMT suffer from this. The poll is in the sidebar on right hand side.

If you suffer from cold feet I would suggest trying Diabetic Socks. They are more expensive but they are seamless, non-binding, usually wider and some have extra padding. These socks would be great for most people with CMT because of their issues with foot sores, sensitivity and cold feet. I am actually looking for some for my son Zachary. Zach is really picking with socks and I never knew why until now. He has CMT type 2 and has more sensory problems than Carter. So any sock with a seam really irritates him and he doesn't like to have them fit to tight. From what I hear Diabetic socks are loose fitting to help with circulation which is another benefit for CMTers.

According to my new friend Carol at www.smartfeetsavannah.com ,copper socks are best for those with CMT because they are seamless, soothing and antimicrobial! Bonus! No more stinky feet! They will help prevent sores, wick away moisture and are very soft! Yes, they are diabetic socks but we have the same problems with feet as they do! I am definitely ordering some of those!

So guys please take the time to complete the poll on the right side. Try these socks, not only will they help your feet get warm but they will keep them protected.

Until Next Time..............Keep those tootsies warm!

"Stay Strong, Believe” Carter Hayes

Are You Ready For The First Day Of School?

The boys start school tomorrow and to be honest I am really, really sad.  I am not usually this emotional before school starts but this year I am. Maybe its because Carter is now a Sophomore, Zachy is in the 5th grade and Ayden is now in Preschool.  Or maybe its because this year is different because of the CMT diagnosis. All I know is I feel more than ever that I am running out of time with them.  

I know that the Charcot Marie Tooth disease is playing a big part in my emotions and anxiety.  O.k. actually a lot.  I fess up I am really worried about how this school year is going to really play out.  I know Carter is strong and positive but how hard is this first day going to be for him?  Is he going to miss Cross Country? Yes, I am sure. Is he going to have a hard time going up and down the stairs with all his books? Only time will tell.  Marcus is such a big school and he counted that he will have to maneuver the stairs about 4 times a day.  Of course, he says "no problem."  The one and only thing that is our saving grace is the length of the classes.  Each class is around an hour in a half.  Plenty of time for his legs and feet to recover.  O.k. I just convinced myself he will be fine.

With Zachy I am more concerned about PE.  He always had a hard time doing certain activities in PE  which sometimes would bring ridicule from others. See he is always the last to be picked for teams because he is slower, can't jump as high and trips a lot.  I have always told him not to let it get to him and for the most part it doesn't.  This year it will be interesting to see how the PE teacher handles his CMT.  The old PE teacher used to really push Zach to run faster or stretch further.  I think she thought he was lazy but really it was his CMT getting in the way. Since he was just diagnosed in July I made sure to inform the school of his disease.  They have been so understanding and are willing to help in anyway they can. Zachy told me today that he is really going to try "extra hard" at PE.  He said "I am going to show everyone that I can do what they can do!"  I think Carter is rubbing off on him! Thank God!

Both boys have horrible writing and its due to the weakness in their hands.  They tire easily when the write for long periods and cursive is super hard for Zach.  The great news for us this year is our school district implemented a new technology initiative.  It is called "Bring Your Own Technology" where kids are allowed to bring their cell phones, ipods, ipads and laptops!  The schools are now supplied with a wifi system that will allow students to access the Internet to research information.  What is so great about it for us is....the boys can take notes this way and they won't have to write as much.  Well at least I am hoping.  We will see... at least now I don't have to request a keyboard or laptop for them in school and have them stick out like a sore thumb.  I'll keep you all posted on how it goes. 

Well, thanks everyone for listening to me tonight.  Just couldn't sleep needed to think this all through....Here's to a great school year for everyone.  Remember to talk with your kids teachers, nurses and administrators about CMT, so they know what your child's limits are.  You are your child's advocate, don't let them down.  I know I am glad I went in before the school year started to inform everyone about Charcot Marie Tooth Disease.  Did you?

Until Next Time..............Make sure your school knows about Charcot Marie Tooth Disease!
"Stay Strong, Believe"Carter Hayes

Thank You Hincapie Sports!

We want to say thank you so much to Hincapie Sports for helping to get Carter's Challenge bike kits done on such short notice.  They have been instrumental in making a child's dream come true.  Not only a child's but a fathers as well. Thanks to Hincapie Sports, Carter's Challenge will have a team jersey and shorts with our very own logo!  Plus, Carter will be able to wear them in his first race, The Cotton Patch Challenge.

Today we worked with our artist on the logo for Carter's Challenge and the design of the jersey and shorts.  It was amazing to see Carter's vision come to fruition.  Watching what he sketched on a piece of paper come to life on the screen, as a proof, was a moment I will never forget.  When Emily, our artist, sent us the first proof I couldn't believe how she totally captured what we all had envisioned!  It was so good in fact that we only had a couple of adjustments.  Now we have one of the coolest logo's and I think the best team jersey out there!  I cannot wait to unveil it to everyone!  Hopefully, Monday we will get a proof that I will be able to upload onto the site.  For now, I don't have a clue on how to do it! 

I wish I had a way of showing it to you all right now.  All I can tell you is I actually started crying when I saw the proofs today.  Like I said before this is a dream come true for Carter and Sean.  They both love road cycling, follow all the top cyclists, watch every race under he moon and have pictures of road bikes all over our house! So for them to have a team jersey made is beyond words. 
Do you have a favorite race team? 

O.k. it is late and I am completely exhausted. If I made mistakes or rambled to much I apologize now this is what happens when you are sleep deprived!

Until Next Time.................THANK YOU HINCAPIE SPORTS!
"Stay Strong, Believe"~Carter Hayes

Having Wonderful Doctors Who Support You Make Having CMT Easier

Today Carter went in for his checkup with his regular Pediatrician, Dr. Debra Naylor with 18 and Under MD.  The good news is he gained some of his weight back!  Yeah! Still not where we are supposed to be but I'll take it.  Dr. Naylor did her checkup and said he seems to be doing well.  She just wanted to take blood again to check his white blood count, liver and other markers to make sure that everything is back down to normal.  Crossing my fingers right now......

When we were in with Dr. Naylor she asked Carter about Carter's Challenge.  She heard about it from one of the other doctors in the office, Kim Bookout.  Who had learned about from me on Ayden's last checkup. She told us that she would love to support us by letting us put up brochures or flyer's about Charcot Marie Tooth in the waiting rooms.  She also suggested that we put our bracelets out there too!  Oh and she bought one from us! I actually didn't have any on me so she took mine!  Then before we left she grabbed Paul, the doctor who caught the CMT, and he bought Carter's bracelet!  They took the bracelets right off of us!  What awesome support!  

Having a disease and having children with a disease is difficult, time consuming and hard work.  The one thing I can tell all of you, is having great pediatricians makes all the difference.  Dr. Debra Naylor, Kim Bookout and Paul Boerger have been so incredibly supportive, helpful and caring during our journey. A doctor can have knowledge on the disease, but a real healer not only has knowledge but compassion.  I feel truly blessed to have such wonderful doctors taking care of our children. 

I hope that all of you have wonderful doctors like us.  To learn more about 18 and Under Md check them out at www.18andundermd.com.  You just may see Carter on there one day.....Another way they are thinking of supporting us!

Until Next Time.............Having the right doctor can make a world of difference!
"Stay Strong, Believe"~Carter Hayes 




 

Charcot Marie Tooth Association Is Making Carter The October Youth Spotlight!

We just got the official word that Carter will be the Youth Spotlight on the CMTA's Youth Facebook page, for October!  He is so excited and so am I!  I know they are excited to have him too.  This is a great opportunity for Carter to tell and show other youths to stay strong, positive and believe.  His motto. Don't give up! I was told that a PR person will be contacting us soon to go over everything.  CAN YOU SAY AMAZING?

My head is still spinning from everything that is going on in our lives right now, but I know now more than ever that this is our calling.  He and I are supposed to shed  light on the Charcot Marie Tooth Disease and make more Doctors, nurses, moms, dads, teachers, communities,etc..aware of CMT  and know the signs.  So many have never heard of it or if they have, they don't know much about it.  Remember, knowledge is power and power is knowing.  THE TIME IS NOW....TIME TO TELL EVERYONE ABOUT CMT!

So go check Carter out on the CMTA's Youth Facebook page in October https://www.facebook.com/#!/CMTAssociation?sk=app_6009294086.  I will of course remind you all when we get closer to October but just couldn't wait to share the great news. 

Until Next Time..........You Can Achieve If You Believe!

Stay Strong, Believe~Carter Hayes

CMT Awareness Month and Cotton Patch Challenge

It has been a crazy week getting ready for CMT Awareness Month and for Carter's first race!  He is training really hard right now and I am so proud of him!  Today he went out with his dad and they rode 31 miles, which is how long the Cotton Patch Challenge is.  Sean said he did great and Carter pulled away from him on some hills.  With only a couple of weeks left to train he is going to be pushing himself pretty hard.  Carter will to start to increase his miles and do some sprints to better prepare for the race.  I took some pictures of him today getting ready to head out on his ride.  So proud of him!

Bake sale planning is underway and already have people willing to bake and some places willing to donate for the bake sale.  Now I just need to come up with a date! Should have date wrapped up before Saturday and will keep you all posted as to who, what, when, where and how! 

I am making this post short and sweet since I have sooo much to do right now. 

Until Next Time.............Ride like the wind!
"Stay Strong, Believe"~Carter Hayes

Mission Happy Feet

Please watch this video by Kaitlyn Mattheiss a 15 yr old who made this video to raise awareness for CMT and help find a cure for her brother.  Great job Kaitlyn! Her blog is called Mission Happy Feet like ours it raises awareness for Charcot Marie Tooth Disease. 

Until Next Time................."Stay Strong, Believe" Carter Hayes