These last few weeks have been utterly overwhelming. At times it just seems as though the upward battle is getting steeper and steeper and we will never reach the top. Finding strength to get through the day is difficult at times, sometimes I just want to curl up in bed and cry but I can't. I can honestly say the only things getting me through each day is my faith, my family and a incrediable support group of friends. Thank God for my CMT friends, whom I met through Facebook, of all things. They truly get it, because of course they have been through it or are going through it.
As I said these last few weeks have been difficult to say the least. Both boys are struggling not only with school but with their physical limitations. Zach all of a sudden is showing more signs. Halloween he went out trick or treating with his friends and of course came home in horrible pain. He just did not want to tell his friends he couldn't go any further, so he indured the pain. When he got home he was in tears because his feet and legs were killing him. He was just exhausted. Then the next day they had a Diabetes Walk at school and instead of not participating....he walked! Ugh!!!! He said he just didn't want to be different. Which I understand but he came home and could barely walk through the front door. Again, horrible pain in legs and feet. So we soaked in Epson Salt and warm water and relaxed in the recliner. Oh how I wish I could make the pain go away. I am so glad I have my ARD meeting coming up with his school. I really need some help with making sure he does not feel different yet he isn't causing himself any discomfort.
As for Carter, rough week to say the least. He received his night braces on Tuesday and lets just say it hasn't been fun. First night was really rough, no sleep. For those of you who are not familiar with them let me just say this. Once you have them on, there is no getting up. They are not the most comfortable either....to say the least. First night was really rough, no sleep. He was in pain, so I loosened them up but he also had a hard time getting comfortable, he sleeps on his side. So, we came up with a game plan, if he needs to get up or if he is in to much pain he is to call me. So we keep his cell phone charging on his nightstand and he calls me on the home phone if he needs me. First night, like I said was rough. He even asked if he could sleep with just one brace. Second night a little better. We adjusted it a couple of times but then at 1 a.m. phone rings, he is in a lot of pain in his achiles heal. So off went the braces. He needs sleep for school for crying out loud! Carter did find some humor in his braces last night. He was watching Forest Gump over the weekend , remember Forest had leg braces too! So he made some jokes last night when I put him to bed. Like "Run Forest, run." Which reminded me that we all need to keep a sense of humor in all this madness.
I told the boys we just all need to keep the faith and stay strong. Strength will come from our faith and from each other. I told Carter remember when you were first diagnosed, you said "I am not going to let this disease control me." "I am going to stay strong and believe." You need to remember that time and find that inner strength again. WE ALL DO!
Until Next Time.....Keep the faith!
"Stay Strong, Believe"~Carter Hayes
Thursday, November 3, 2011
Tuesday, October 25, 2011
"Do Not Dwell On The Past, Do Not Dream Of The Future, Concentrate The Mind On The Present" Buddha
I have been struggling a lot lately with what to post, therefore I haven't.... See talking about the ugly things in life isn't that easy. Bearing it all is hard. Putting what we feel into words is hard. Putting those words in writing is even harder, because than there is no going back.
I always knew there would be a day that this whole CMT mess would come to a head, but I guess I really never thought about it. I think I was in denial. We all are in some sort of denial over it. I mean...I know my boys have CMT, yes I know it is a progressive disease, yes I know there will be ups and downs and yes, I know it is not the end of the world. Yet, here I am writing this because my child is hurting and I don't know how to take the pain away. I was in denial that it was affecting him as much as it is, and he was in denial that it was affecting him as much as it is.
I am writing this not only to help us through this process, but hopefully to let other families know that they are not alone. I know we can't be the only family out there with CMT, that is struggling with some sort of emotional pain. I have done enough research on CMT to know that depression can play a big part in it. Especially, in children with CMT. This is exactly why I want and need to address this subject.
I am lucky that I have a child that is strong, and that just happened to be taking an AP Psychology course these last 9 weeks of school. So, when they reached the topic of grieving, it hit a nerve. He realized that he was actually going through the 5 steps of grieving- denial, anger, bargaining, depression and acceptance. I know a lot of you are probably shaking you head, but it is true. Grieving doesn't have to be over a personal physical loss, you can grieve over a significant life changing event. He is grieving over the loss of the future he had dreamed about since he was a 6 yrs old, going into the Military and being a Navy Seal. A loss of a passion, running and the loss of his future as he knew it. The future he had planned out so strategically, was all but wiped out in one fell swoop.
To all of the parents of kids with CMT, remember it is a disease. I think a lot of people think that since it isn't a terminal disease that its not big deal. I AM HERE TO SAY IT IS! Just because it is not terminal, does not mean it doesn't affect them emotionally. Remember, kids have peer pressure, school pressure and family pressure to deal with daily and then to be diagnosed with a progressive disease.....a disease that may affect their dreams? Any kid, I mean any kid, would have some struggles. It is after all a lot to handle at any age.
So make sure to keep the lines of communication open. Make sure to talk to your child's teacher(s) about ways they can help. If they no longer can do a passion, help them find a new one. Let them know that they are not alone. There are other kids out there going through the same thing or something similar to them. Help them find a good resource for support like the CMTA Youth Group on Facebook. Or contact a counselor that specializes in youths.
Where does this leave us? It leaves us taking one day at a time. Accepting that the past dreams are gone and we need to make new ones. That we need to live everyday as if it was our last. That as much as we all want to be strong, we all are weak at times. We need to learn to reach out, even when we don't want to. Most importantly, love your kids. Let them know that its o.k. to struggle, life is not perfect and everyone has their own struggles internally.
Until Next Time...................."Stay Strong,Believe" Carter Hayes
I always knew there would be a day that this whole CMT mess would come to a head, but I guess I really never thought about it. I think I was in denial. We all are in some sort of denial over it. I mean...I know my boys have CMT, yes I know it is a progressive disease, yes I know there will be ups and downs and yes, I know it is not the end of the world. Yet, here I am writing this because my child is hurting and I don't know how to take the pain away. I was in denial that it was affecting him as much as it is, and he was in denial that it was affecting him as much as it is.
I am writing this not only to help us through this process, but hopefully to let other families know that they are not alone. I know we can't be the only family out there with CMT, that is struggling with some sort of emotional pain. I have done enough research on CMT to know that depression can play a big part in it. Especially, in children with CMT. This is exactly why I want and need to address this subject.
I am lucky that I have a child that is strong, and that just happened to be taking an AP Psychology course these last 9 weeks of school. So, when they reached the topic of grieving, it hit a nerve. He realized that he was actually going through the 5 steps of grieving- denial, anger, bargaining, depression and acceptance. I know a lot of you are probably shaking you head, but it is true. Grieving doesn't have to be over a personal physical loss, you can grieve over a significant life changing event. He is grieving over the loss of the future he had dreamed about since he was a 6 yrs old, going into the Military and being a Navy Seal. A loss of a passion, running and the loss of his future as he knew it. The future he had planned out so strategically, was all but wiped out in one fell swoop.
To all of the parents of kids with CMT, remember it is a disease. I think a lot of people think that since it isn't a terminal disease that its not big deal. I AM HERE TO SAY IT IS! Just because it is not terminal, does not mean it doesn't affect them emotionally. Remember, kids have peer pressure, school pressure and family pressure to deal with daily and then to be diagnosed with a progressive disease.....a disease that may affect their dreams? Any kid, I mean any kid, would have some struggles. It is after all a lot to handle at any age.
So make sure to keep the lines of communication open. Make sure to talk to your child's teacher(s) about ways they can help. If they no longer can do a passion, help them find a new one. Let them know that they are not alone. There are other kids out there going through the same thing or something similar to them. Help them find a good resource for support like the CMTA Youth Group on Facebook. Or contact a counselor that specializes in youths.
Where does this leave us? It leaves us taking one day at a time. Accepting that the past dreams are gone and we need to make new ones. That we need to live everyday as if it was our last. That as much as we all want to be strong, we all are weak at times. We need to learn to reach out, even when we don't want to. Most importantly, love your kids. Let them know that its o.k. to struggle, life is not perfect and everyone has their own struggles internally.
Until Next Time...................."Stay Strong,Believe" Carter Hayes
Tuesday, October 11, 2011
Scottish Rite Visit and Life As I Know It Right Now
I know it has been awhile since I have blogged. This is mostly due to me being sick with pneumonia and a bad sinus infection. I needed to focus on getting better, so I can be there for my kids. Which leads me to the other reason I have not blogged. I realized that I have let the website, fundraising, doctors appointments and other things just get in the way of me being a mom. I let the research and the disease consume me. What I needed to do was balance it all out, which I have learned is really hard, especially for someone who has a bit of a tendency to over work. Which over work leads to me becoming ill and so on....So for now I will blog only once or twice a week. This way I am still keeping everyone informed of anything new going on with us or new with CMT. As far as research, I will still be doing a lot of it just only at night. Fundraising and raising awareness will still be top priority and I will focus on that during the day.
The Scottish Rite appointment went well but not as I had expected it to go. We were there all day! I actually was late in picking up Ayden from Preschool. His school closes at 6:30 p.m. and I didn't pick him up until 7:00 p.m.! Thank goodness for Kendall! She is an amazing young woman who has been a guardian angel for us. Actually, the whole school has been a guardian angel.
When we arrived at Scottish Rite we were immediately taken over to the CMT Clinic and introduced to Dr. Iannaccone's medical assistant. She was with us pretty much all day. We spent the first couple of hours filling out paperwork, answering questions about the boys health, symptoms, school and so forth. She did a physical evaluation on them both. After she was done we saw a nutritionist, who spoke to us about the importance of healthy eating, vitamins and so on. Next was a physical therapist, who evaluated the boys and asked more questions. She then came up with a therapy routine for each boy. Then Dr. Iannaccone came in with her whole team. They asked even more questions, watched the boys walk, examined them and talked a lot amongst themselves. The boys were very nervous since they were kinda in the spotlight. There were about 7 adults in the room with us, all looking at them, asking them to do things and asking us questions. After they left she sent in the occupational therapist to examine the boys and ask more questions! Finally, we were done with all that.
Dr. Iannaccone and her team told us they will be doing a DNA test on Carter to determine what kind of CMT he has! Thank God! This will allow us to see if he will pass it on and if so to who. It will also allow us to look at clinical trials. She also wants them both to start physical therapy and do it once a day, everyday! She also wants to put Carter into braces at night. He will be wearing braces on both legs all night for a long time. She does not believe in surgery so, we will be trying the bracing. So we were sent down to Orthotics to do the casting on both legs for the braces.
I am a worried about the emotional effect it will have on Carter having to wear night bracing and the physical part as well. I know being a 16 year old is not easy in of it self but having to wear braces on both legs is just going to make it that much harder. I am not a huge fan of the bracing since I have been told it won't work on him. Carter and I agreed to try it but I still believe surgery is the only option for him. Several Doctors have said that the only way to help him walk, without walking on his toes, is through surgery. I will be asking for a 3rd opinion since I have one Dr. saying surgery and the other now saying bracing. Only time will tell. We go back on October 26th to pick up the braces and learn about them.
So as for now I have not learned anything new from Scottish Rite. We will find out the results of DNA in 4-6 weeks and will go back on 26th for braces. I am disappointed but I am also very grateful for having the opportunity to go there. Hopefully we will learn more at our next appointment once they know what type.
Until Next Time.................."Stay Strong, Believe"~Carter Hayes
The Scottish Rite appointment went well but not as I had expected it to go. We were there all day! I actually was late in picking up Ayden from Preschool. His school closes at 6:30 p.m. and I didn't pick him up until 7:00 p.m.! Thank goodness for Kendall! She is an amazing young woman who has been a guardian angel for us. Actually, the whole school has been a guardian angel.
When we arrived at Scottish Rite we were immediately taken over to the CMT Clinic and introduced to Dr. Iannaccone's medical assistant. She was with us pretty much all day. We spent the first couple of hours filling out paperwork, answering questions about the boys health, symptoms, school and so forth. She did a physical evaluation on them both. After she was done we saw a nutritionist, who spoke to us about the importance of healthy eating, vitamins and so on. Next was a physical therapist, who evaluated the boys and asked more questions. She then came up with a therapy routine for each boy. Then Dr. Iannaccone came in with her whole team. They asked even more questions, watched the boys walk, examined them and talked a lot amongst themselves. The boys were very nervous since they were kinda in the spotlight. There were about 7 adults in the room with us, all looking at them, asking them to do things and asking us questions. After they left she sent in the occupational therapist to examine the boys and ask more questions! Finally, we were done with all that.
Dr. Iannaccone and her team told us they will be doing a DNA test on Carter to determine what kind of CMT he has! Thank God! This will allow us to see if he will pass it on and if so to who. It will also allow us to look at clinical trials. She also wants them both to start physical therapy and do it once a day, everyday! She also wants to put Carter into braces at night. He will be wearing braces on both legs all night for a long time. She does not believe in surgery so, we will be trying the bracing. So we were sent down to Orthotics to do the casting on both legs for the braces.
I am a worried about the emotional effect it will have on Carter having to wear night bracing and the physical part as well. I know being a 16 year old is not easy in of it self but having to wear braces on both legs is just going to make it that much harder. I am not a huge fan of the bracing since I have been told it won't work on him. Carter and I agreed to try it but I still believe surgery is the only option for him. Several Doctors have said that the only way to help him walk, without walking on his toes, is through surgery. I will be asking for a 3rd opinion since I have one Dr. saying surgery and the other now saying bracing. Only time will tell. We go back on October 26th to pick up the braces and learn about them.
So as for now I have not learned anything new from Scottish Rite. We will find out the results of DNA in 4-6 weeks and will go back on 26th for braces. I am disappointed but I am also very grateful for having the opportunity to go there. Hopefully we will learn more at our next appointment once they know what type.
Until Next Time.................."Stay Strong, Believe"~Carter Hayes
Sunday, October 2, 2011
Scottish Rite Tomorrow and Carter raised $1164.00 For CMTA!
I cannot believe that October 3rd is finally here! No more waiting...Scottish Rite here we come! Both boys are going to be seen tomorrow and we are expected to be there all day. I am so thankful that we got in so soon, even though it seems like its been forever! Just so grateful to the wonderful Doctors who helped get them in so soon.
I have all the paperwork they requested filled out, all the medical records and orthotics ready! I am really hoping we will get some answers tomorrow but I am not counting on it.
There area a couple of things that I really want to happen tomorrow. One is for them to tell us what is going on with Carter's right leg. His right leg started twitching this last week and we don't know why. It is starting to bother him since it just happens at random times. He will be sitting in class and all of a sudden it starts to twitch. Sometimes it will twitch for a minute or two and other times longer.
The second thing is for them to help Zach with his toes. His big toe is infected and he keeps picking at it but since he cannot feel anything, he keeps doing it. So now it is all bruised from him messing around with it. He is on antibiotics for it but she said they may have to go in and take the nail off! She told Zach I bet you feel that! I just hope they can help us with his toe issues and we don't have to have them take the nail off!
The other big ones for me are Carter's feet, are we going to have to have surgery? Will it help him? How long for recovery? Is it better to wait or do it now? And of course Carter's chest pain and pressure. He says that it comes and goes. His regular Dr. told him last Wednesday no more running at all! At least until we get a stress EKG done and we go to Scottish Rite and see what they say about it. I also really want to know what we can do for Zach's feet too. Even though he doesn't walk on his toes or have the hammered toes, he does have really bad pigeon feet! We will see......
I know we won't get too many answers tomorrow but I am hoping for some great information. I look forward to meeting Dr. Iannaccone and learning more about CMT from her and her staff.
I know I still have not posted the pictures or blogged much about race. I will just still trying to get better. Plus my husband cannot find the pictures! So I am hoping my mom has them!!!! Scary! I tell ya never leave anything up to a man! LOL! Just kidding all you men out there!
To end on a great note, I would like to thank everyone for donating to Carter's Birthday Wish! Because we had so many generous donations he was able to raise a whopping $1164.00! THANKS SO MUCH FOR YOUR SUPPORT! WE TRULY ARE BLESSED TO HAVE SUCH WONDERFUL FRIENDS AND FAMILY. LOVE YOU ALL!
Until Next Time.............Anything is possible if you just BELIEVE!
"Stay Strong, Believe!"~Carter Hayes
I have all the paperwork they requested filled out, all the medical records and orthotics ready! I am really hoping we will get some answers tomorrow but I am not counting on it.
There area a couple of things that I really want to happen tomorrow. One is for them to tell us what is going on with Carter's right leg. His right leg started twitching this last week and we don't know why. It is starting to bother him since it just happens at random times. He will be sitting in class and all of a sudden it starts to twitch. Sometimes it will twitch for a minute or two and other times longer.
The second thing is for them to help Zach with his toes. His big toe is infected and he keeps picking at it but since he cannot feel anything, he keeps doing it. So now it is all bruised from him messing around with it. He is on antibiotics for it but she said they may have to go in and take the nail off! She told Zach I bet you feel that! I just hope they can help us with his toe issues and we don't have to have them take the nail off!
The other big ones for me are Carter's feet, are we going to have to have surgery? Will it help him? How long for recovery? Is it better to wait or do it now? And of course Carter's chest pain and pressure. He says that it comes and goes. His regular Dr. told him last Wednesday no more running at all! At least until we get a stress EKG done and we go to Scottish Rite and see what they say about it. I also really want to know what we can do for Zach's feet too. Even though he doesn't walk on his toes or have the hammered toes, he does have really bad pigeon feet! We will see......
I know we won't get too many answers tomorrow but I am hoping for some great information. I look forward to meeting Dr. Iannaccone and learning more about CMT from her and her staff.
I know I still have not posted the pictures or blogged much about race. I will just still trying to get better. Plus my husband cannot find the pictures! So I am hoping my mom has them!!!! Scary! I tell ya never leave anything up to a man! LOL! Just kidding all you men out there!
To end on a great note, I would like to thank everyone for donating to Carter's Birthday Wish! Because we had so many generous donations he was able to raise a whopping $1164.00! THANKS SO MUCH FOR YOUR SUPPORT! WE TRULY ARE BLESSED TO HAVE SUCH WONDERFUL FRIENDS AND FAMILY. LOVE YOU ALL!
Until Next Time.............Anything is possible if you just BELIEVE!
"Stay Strong, Believe!"~Carter Hayes
Wednesday, September 28, 2011
Another Medication Not To Take~ Alert
Just a quick post to make sure everyone is aware of this ALERT!
As I was going through my emails I came across one that had an ALERT for a Medication. Please click on the following link Levofloxacin Medication Alert and read the article. If you have CMT or if you are a caretaker to a CMTer please read and make a note of medication.
Until Next Time...............
As I was going through my emails I came across one that had an ALERT for a Medication. Please click on the following link Levofloxacin Medication Alert and read the article. If you have CMT or if you are a caretaker to a CMTer please read and make a note of medication.
Until Next Time...............
Tuesday, September 27, 2011
Winning-Is Not About Crossing The Finish Line First
I remember finally falling asleep somewhere around 2a.m. and thinking today is the day Carter will go head to head with his disease. Today is the day he will prevail....
Bzzz.Bzzz the alarm went off it was already 5:30 a.m., hadn't I just gone to sleep? Oh well, no rest for the weary. By the time Zach, Nana and I were ready, Sean had already had all the race stuff done! It was like someone gave him 10 cups of espresso. He had Carter down eating, he ate and he was double checking everything again!
We decided to join Carter for a quick bite and of course ran into a bunch of other racers preparing for the race as well. We finished eating and headed for the start line.
Arrival Time 6:45 a.m. Race Time 7:55 a.m.
Since we were there in plenty of time it allowed Carter to settle his nerves, even though he will never admit to being nervous. He was able to hydrate more and get in some warm up time. Plus it gave him a chance to see the other kids he was riding with. Carter's race jersey by far, I think was the best! He looked so awesome in his Carter's Challenger Race Jersey and supporting CMTA! We all wore our CMTA shirts as well, thanks Jeanna! So Team Carter's Challenge was pumped and ready!
Finally it was time to get him over the start line. They announced that the Junior Race would begin in a couple of minutes. We have never participated in a bike race before so, we really didn't know what to do.
Thank goodness a lot of the event coordinators were helpful. They told us Carter had to go through a pre race check.
1. Junior gears- Check
2. Race Number Visible-Check
3. USA Cycling License- Check
4.All systems a Go-Check
The guy told them all to watch the signs because there are several different courses. They had to follow the signs for the Jr 4/5 open. He also told them to be careful of the roads, since we have been in a severe drought the roads have cracked and they need to watch were they are riding.
They all bunched up and Carter was towards the back. We kept telling him just ride and have fun. Don't worry about anything else, just have fun and finish!
The announcer told them to get ready and next thing you know they are off!!!! We were all screaming and yelling and then he disappeared over the hill in the street. Sean and Zach quickly ran to the car to try and find a way to the first feed zone. Nana, Ayden and I held back so we could see the finish. One of the moms said don't worry he will be fine. It usually takes about 1 1/2 to 2 hours for them to finish. "Hopefully, he won't get dropped by the group." Huh? What are you kidding me? I hope not either, he has no idea where he is going or what he is doing! But, Carter is strong and if anything he is resourceful. So no worries...right?
Phone rings and its Zach yelling "we are following Carter! He got dropped by the group already." I could hear Sean cheering him on and telling him to shift into a different gear. Then Zach yelling "Go Carter!" He then told me not to worry cause he and daddy would make sure Carter was fine and take pics and video along the way.
As time went on I was more and more nervous and the my phone rang again. Zach said that they lost Carter. They had to stop and help another kid. Carter had caught up to one of the kids and was riding by him. Then all of sudden the kid hit a crack and went flying over his bike and into a ditch! Carter, Zach and Sean watched it all take place right in front of them. Carter said he slowed down and didn't know if he should stop or keep going. Then he heard his dad yelling "GO! CARTER KEEP GOING!" "WE GOT HIM CARTER GO!"
Sean and Zach immediately pulled the car over, hopped out and ran to the kid. He was shaken up pretty good. Chain was off of bike and he was in pain. Sean asked the kid do you want to me load your bike onto my car and drive you back to start line? The kid so no I want to try and finish! So Sean helped him get up, fixed his chain and got him on the road again. They did follow him for a bit but to be honest, Sean and Zach were more concerned with Carter and finding him.
As Sean and Zach approached this road they saw in the distance a kid being chased by a dog! Hmmm... Who do you think that was? Yep Carter.. I guess as Carter passed the farm house two dogs came out and started chasing him. He said the black lab just kept barking and running along the side of him. He said "I really didn't know what to do." He was scared to stop but also scared the dog was going to jump onto the bike and knock him over. So he said he started to peddle even harder and told the dog to go away and eventually the dog stopped! Crazy!!!! Only on a back country road race would this happen.
The boys caught up to Carter and watched him through the rest of the race. Encouraging him to push harder, peddle harder and to just keep going. Words of encouragement and love can go such a long way. They would call and let me listen to them cheering him on and in the end I think it was the best place for them to be. Zachy cheering, videotaping and encouraging his big brother to push through it. Sean, gently pushing and coaching his oldest son through his first road race to fight a horrible disease that has struck both of his older boys.
This race was not about winning, medals, time or distance, this race was about a young man finding the courage. strength and passion to fight CMT. To show that this disease will not stop him and to show his brothers that they too can fight this disease head on. TOGETHER THEY CAN DO ANYTHING!
Did Carter finish the race? YOU BET HE DID! He finished it about 1 hour and 45 minutes. He didn't win but WINNING IS NOT ABOUT CROSSING THE FINISH LINE FIRST!
WINNING IS ABOUT FEELING GOOD ABOUT YOURSELF, STAYING STRONG AND BELIEVING IN YOURSELF!
Even though he was in pain and was exhausted after the race he said he would gladly do it all over again. He cannot wait for his next race. So back to training and looks like we might already have another race in mind......
UNTIL NEXT TIME.............REMEMBER YOU CAN DO ANYTHING IF YOU BELIEVE!
"STAY STRONG, BELIEVE"~Carter Hayes
P.S. I just have to say as a mom, this will be one of those moments in life I will never forget. I AM SO PROUD OF YOU CARTER! Again, you inspire me! Zachy- You would make a great coach. Thanks for cheering on your big bro and taking such great pics and video xo mom
Bzzz.Bzzz the alarm went off it was already 5:30 a.m., hadn't I just gone to sleep? Oh well, no rest for the weary. By the time Zach, Nana and I were ready, Sean had already had all the race stuff done! It was like someone gave him 10 cups of espresso. He had Carter down eating, he ate and he was double checking everything again!
We decided to join Carter for a quick bite and of course ran into a bunch of other racers preparing for the race as well. We finished eating and headed for the start line.
Arrival Time 6:45 a.m. Race Time 7:55 a.m.
Since we were there in plenty of time it allowed Carter to settle his nerves, even though he will never admit to being nervous. He was able to hydrate more and get in some warm up time. Plus it gave him a chance to see the other kids he was riding with. Carter's race jersey by far, I think was the best! He looked so awesome in his Carter's Challenger Race Jersey and supporting CMTA! We all wore our CMTA shirts as well, thanks Jeanna! So Team Carter's Challenge was pumped and ready!
Finally it was time to get him over the start line. They announced that the Junior Race would begin in a couple of minutes. We have never participated in a bike race before so, we really didn't know what to do.
Thank goodness a lot of the event coordinators were helpful. They told us Carter had to go through a pre race check.
1. Junior gears- Check
2. Race Number Visible-Check
3. USA Cycling License- Check
4.All systems a Go-Check
The guy told them all to watch the signs because there are several different courses. They had to follow the signs for the Jr 4/5 open. He also told them to be careful of the roads, since we have been in a severe drought the roads have cracked and they need to watch were they are riding.
They all bunched up and Carter was towards the back. We kept telling him just ride and have fun. Don't worry about anything else, just have fun and finish!
The announcer told them to get ready and next thing you know they are off!!!! We were all screaming and yelling and then he disappeared over the hill in the street. Sean and Zach quickly ran to the car to try and find a way to the first feed zone. Nana, Ayden and I held back so we could see the finish. One of the moms said don't worry he will be fine. It usually takes about 1 1/2 to 2 hours for them to finish. "Hopefully, he won't get dropped by the group." Huh? What are you kidding me? I hope not either, he has no idea where he is going or what he is doing! But, Carter is strong and if anything he is resourceful. So no worries...right?
Phone rings and its Zach yelling "we are following Carter! He got dropped by the group already." I could hear Sean cheering him on and telling him to shift into a different gear. Then Zach yelling "Go Carter!" He then told me not to worry cause he and daddy would make sure Carter was fine and take pics and video along the way.
As time went on I was more and more nervous and the my phone rang again. Zach said that they lost Carter. They had to stop and help another kid. Carter had caught up to one of the kids and was riding by him. Then all of sudden the kid hit a crack and went flying over his bike and into a ditch! Carter, Zach and Sean watched it all take place right in front of them. Carter said he slowed down and didn't know if he should stop or keep going. Then he heard his dad yelling "GO! CARTER KEEP GOING!" "WE GOT HIM CARTER GO!"
Sean and Zach immediately pulled the car over, hopped out and ran to the kid. He was shaken up pretty good. Chain was off of bike and he was in pain. Sean asked the kid do you want to me load your bike onto my car and drive you back to start line? The kid so no I want to try and finish! So Sean helped him get up, fixed his chain and got him on the road again. They did follow him for a bit but to be honest, Sean and Zach were more concerned with Carter and finding him.
As Sean and Zach approached this road they saw in the distance a kid being chased by a dog! Hmmm... Who do you think that was? Yep Carter.. I guess as Carter passed the farm house two dogs came out and started chasing him. He said the black lab just kept barking and running along the side of him. He said "I really didn't know what to do." He was scared to stop but also scared the dog was going to jump onto the bike and knock him over. So he said he started to peddle even harder and told the dog to go away and eventually the dog stopped! Crazy!!!! Only on a back country road race would this happen.
The boys caught up to Carter and watched him through the rest of the race. Encouraging him to push harder, peddle harder and to just keep going. Words of encouragement and love can go such a long way. They would call and let me listen to them cheering him on and in the end I think it was the best place for them to be. Zachy cheering, videotaping and encouraging his big brother to push through it. Sean, gently pushing and coaching his oldest son through his first road race to fight a horrible disease that has struck both of his older boys.
This race was not about winning, medals, time or distance, this race was about a young man finding the courage. strength and passion to fight CMT. To show that this disease will not stop him and to show his brothers that they too can fight this disease head on. TOGETHER THEY CAN DO ANYTHING!
Did Carter finish the race? YOU BET HE DID! He finished it about 1 hour and 45 minutes. He didn't win but WINNING IS NOT ABOUT CROSSING THE FINISH LINE FIRST!
WINNING IS ABOUT FEELING GOOD ABOUT YOURSELF, STAYING STRONG AND BELIEVING IN YOURSELF!
Even though he was in pain and was exhausted after the race he said he would gladly do it all over again. He cannot wait for his next race. So back to training and looks like we might already have another race in mind......
UNTIL NEXT TIME.............REMEMBER YOU CAN DO ANYTHING IF YOU BELIEVE!
"STAY STRONG, BELIEVE"~Carter Hayes
P.S. I just have to say as a mom, this will be one of those moments in life I will never forget. I AM SO PROUD OF YOU CARTER! Again, you inspire me! Zachy- You would make a great coach. Thanks for cheering on your big bro and taking such great pics and video xo mom
Friday, September 16, 2011
Lets Get Ready To Rumble!!! Cotton Patch Challenge!
Well we made it to Greenville, Texas in one piece! At least without to much whining, are we there yet? We checked into our hotel, went to pick up race packet and then ate dinner. Now its time for bed.
Carter is sooo excited yet a little nervous. We told him to relax and have fun which I know is easier said then done. We told him its not about where you finish its about having fun and raising awareness for CMT. He siad he knows but just wants to finish race strong. I know without a doubt he will give 100%.
He ate a big dinner to insure he will have plenty of food for ride and went to bed early since we have to be there at 6:55 am so we are up at 5:30am, yep that's right 5:30! What the heck was I thinking? Of course it's like 10:45pm n I am still blogging and posting updates on facebbok n twitter.....need sleep!
It started to drizzle tonight we are hoping for sunshine in morning. especially since this is his first race and he has never ridden in rain before. We haven't had any here in Texas! News says at race timeitwill be 72 so we are hoping they are correct.
Carter's race will begin at 7:55am and is 31 miles long. Sean, will be driving to checkpoints to check on him and me,my mom and his brother's,Zach n Ayden will be there at beginning of race and then head over to finish. We will be taking lots of pics and posting them.
I actually think we are more nervous then Carter! Sean is busy getting all race gear ready and checking bike. He has double,triple checked all gear and has water and sport bottles ready. I on the other hand don't know anything about cycling so I am in charge of other kids and raising awareness and cheering!
Unfortunately, I am sicker than a dog and don't have much of a voice, so my normal loud mouth will not be up to par tomorrow. None the less, I will be cheering with what little voice I have left. Cause that is what mom's do!
Wish us luck, well Carter luck! Please send us tweets @carterschalleng on twitter. I will be tweeting before, during and after race. Yes, our twitter is carterschalleng without the e because the e made it too long....
Until Next Time......GO CARTER!
"Stay Strong, Believe!"Carter Hayes
Carter is sooo excited yet a little nervous. We told him to relax and have fun which I know is easier said then done. We told him its not about where you finish its about having fun and raising awareness for CMT. He siad he knows but just wants to finish race strong. I know without a doubt he will give 100%.
He ate a big dinner to insure he will have plenty of food for ride and went to bed early since we have to be there at 6:55 am so we are up at 5:30am, yep that's right 5:30! What the heck was I thinking? Of course it's like 10:45pm n I am still blogging and posting updates on facebbok n twitter.....need sleep!
It started to drizzle tonight we are hoping for sunshine in morning. especially since this is his first race and he has never ridden in rain before. We haven't had any here in Texas! News says at race timeitwill be 72 so we are hoping they are correct.
Carter's race will begin at 7:55am and is 31 miles long. Sean, will be driving to checkpoints to check on him and me,my mom and his brother's,Zach n Ayden will be there at beginning of race and then head over to finish. We will be taking lots of pics and posting them.
I actually think we are more nervous then Carter! Sean is busy getting all race gear ready and checking bike. He has double,triple checked all gear and has water and sport bottles ready. I on the other hand don't know anything about cycling so I am in charge of other kids and raising awareness and cheering!
Unfortunately, I am sicker than a dog and don't have much of a voice, so my normal loud mouth will not be up to par tomorrow. None the less, I will be cheering with what little voice I have left. Cause that is what mom's do!
Wish us luck, well Carter luck! Please send us tweets @carterschalleng on twitter. I will be tweeting before, during and after race. Yes, our twitter is carterschalleng without the e because the e made it too long....
Until Next Time......GO CARTER!
"Stay Strong, Believe!"Carter Hayes
Thursday, September 15, 2011
Happy 16th Birthday Carter!!!!!
Ten years ago Carter was born during an emergency c-section. Carter was called a miracle baby at the hospital. He was only 3lbs 11.5 oz! I knew he was special from the moment he was born and that he was meant to do great things.
I just didn't know that these great things would be centered around Charcot-Marie-Tooth Disease. That on his sixteenth birthday we would be doing fundraisers to raise awareness about a disease he and his brother suffer from. I didn't know that the great things he was born to do would be about him taking a stand against a disease and help raise funds to find a cure for him and his little brother, Zachary. What I did know is how strong he is and how he won't back down from anything.
Carter fought his way into this world and he is still fighting. Defying all odds when he was in the womb and defying all odds throughout his 16 years. Carter is my hero and Carter is my guardian angel. I am truly blessed to have such a wonderful child and to have the opportunity to watch him grow from a little boy into a handsome, smart, thoughtful, strong young man.
Carter, I love you and I am so proud to be your mom. The way you have stepped up to be such an inspiration to not only your younger brothers, but to others who have CMT is just simply amazing. You make me want to be the best mom I can be for you and your brothers and sister.
HAPPY 16TH BIRTHDAY BUDDY! WE LOVE YOU SO MUCH AND WE ARE ALL SO PROUD OF YOU!
Until Next Time...................WHO INSPIRES YOU?
"Stay Strong, Believe"~Carter Hayes
I just didn't know that these great things would be centered around Charcot-Marie-Tooth Disease. That on his sixteenth birthday we would be doing fundraisers to raise awareness about a disease he and his brother suffer from. I didn't know that the great things he was born to do would be about him taking a stand against a disease and help raise funds to find a cure for him and his little brother, Zachary. What I did know is how strong he is and how he won't back down from anything.
Carter fought his way into this world and he is still fighting. Defying all odds when he was in the womb and defying all odds throughout his 16 years. Carter is my hero and Carter is my guardian angel. I am truly blessed to have such a wonderful child and to have the opportunity to watch him grow from a little boy into a handsome, smart, thoughtful, strong young man.
Carter, I love you and I am so proud to be your mom. The way you have stepped up to be such an inspiration to not only your younger brothers, but to others who have CMT is just simply amazing. You make me want to be the best mom I can be for you and your brothers and sister.
HAPPY 16TH BIRTHDAY BUDDY! WE LOVE YOU SO MUCH AND WE ARE ALL SO PROUD OF YOU!
Until Next Time...................WHO INSPIRES YOU?
"Stay Strong, Believe"~Carter Hayes
Monday, September 12, 2011
Looking back 10 years to 9/11 and Where We Are Now-Carter-Turns 16 and Cotton Patch Challenge!
Tonight I was on Facebook and one of my friends Sara posted something that just really rang true(see below.) I guess this week is not just a big week for Carter it is for me as well. My first born son, my guardian angel is turning the big 16. Sixteen is one of those big bdays because it symbolizes more independence, responsibility and maturity. Sixteen is when they get their drivers license which is a huge responsibility and leads to discovering new freedom. They become more aware of their future and start to seriously think about College and their future. All of these things leave me as a mom longing for the days when he was 6.
10 years ago on September 11 2001 we lived in Seattle, Washington. Carter was turning 6 on the 15th and Zach was just 8 months old. I remember waking up, getting everyone ready to take Carter to school,we dropped him off and went to go get my coffee at my fav coffee drive thru. When I pulled up the lady said "Oh my god can you believe what is happening? I looked at her a little puzzled, I had no idea what she was talking about and would have never guessed at what she was about to tell me. It all seemed like something out of a movie, could this really be happening here? In America? I quickly turned on my car radio and tried to call my husband but couldn't get through, so I tried the school and couldn't get through. At that point I just started driving back over to the school to go pick up Carter. Since no one seemed to know if and when there might be another attack. When I arrived at Carter's school there were a ton of people there doing the same thing. Pulling their kids out in order to assure their safety.
I remember Carter asking me questions and having to explain what was happening but not leading on that I too was afraid. I told him when we get home, go downstairs and play in the playroom while mommy watches the news and makes some calls. I told him don't worry, its going to be o.k.
I remember watching the towers go down and my heart sinking.The Pentagon and shaking my head and I remember hearing about United 93 and thinking what amazing heroes! I also remember that night we were all in fear, fear of the unknown. Would they strike again? If so where? As Sean and I lay in our bed that night we could hear fighter jets flying over. Something you don't hear to often. At times they were so low it sounded like a big boom. It was a night of little sleep.
Carter woke up the next day and of course was concerned about his bday party we had scheduled. So I got back on the phone and started asking the moms what should I do? We all decided the kids really needed the bday party still. They were only 5 and 6 and really didn't need to understand the full complexity of what had just happened. Plus it gave us adults time to comfort each other. So the party went on as planned.
Fast forward 10 years and here we are 9/11/2011 planning his 16th bday and his first road race with CMT at the Cotton Patch Challenge. Please pray for him to do well and have a great time. Amazing how time flies and how life has changed. We are now in Texas and Zach and Carter have Charcot-Marie-Tooth Disease, something I never even imagined would happen. Yet, here we are getting ready to celebrate his 16th bday in a couple of days and watch him take on CMT head to head. Am I worried yes, but Sean thinks I am a worry wart. I think I just love my kids an awful lot. On September 15th he will be 16 which for me means, he will be gone in two years to college, he will not need me as much as he used to, he will ignore me more often, choose his friends over me and maybe even a girlfriend over me! I hope he will always remember just how much I love him. How when he doesn't come home on time- mom doesn't sleep.
I know I will make it these next couple of years but it is going to be a rough rode emotionally. I know its time to let go a little but I am just not there! This whole post came from a post from a friend and it just happened to hit me on 9/11 and on his Sixteenth Bday week.
10 years ago on September 11 2001 we lived in Seattle, Washington. Carter was turning 6 on the 15th and Zach was just 8 months old. I remember waking up, getting everyone ready to take Carter to school,we dropped him off and went to go get my coffee at my fav coffee drive thru. When I pulled up the lady said "Oh my god can you believe what is happening? I looked at her a little puzzled, I had no idea what she was talking about and would have never guessed at what she was about to tell me. It all seemed like something out of a movie, could this really be happening here? In America? I quickly turned on my car radio and tried to call my husband but couldn't get through, so I tried the school and couldn't get through. At that point I just started driving back over to the school to go pick up Carter. Since no one seemed to know if and when there might be another attack. When I arrived at Carter's school there were a ton of people there doing the same thing. Pulling their kids out in order to assure their safety.
I remember Carter asking me questions and having to explain what was happening but not leading on that I too was afraid. I told him when we get home, go downstairs and play in the playroom while mommy watches the news and makes some calls. I told him don't worry, its going to be o.k.
I remember watching the towers go down and my heart sinking.The Pentagon and shaking my head and I remember hearing about United 93 and thinking what amazing heroes! I also remember that night we were all in fear, fear of the unknown. Would they strike again? If so where? As Sean and I lay in our bed that night we could hear fighter jets flying over. Something you don't hear to often. At times they were so low it sounded like a big boom. It was a night of little sleep.
Carter woke up the next day and of course was concerned about his bday party we had scheduled. So I got back on the phone and started asking the moms what should I do? We all decided the kids really needed the bday party still. They were only 5 and 6 and really didn't need to understand the full complexity of what had just happened. Plus it gave us adults time to comfort each other. So the party went on as planned.
Fast forward 10 years and here we are 9/11/2011 planning his 16th bday and his first road race with CMT at the Cotton Patch Challenge. Please pray for him to do well and have a great time. Amazing how time flies and how life has changed. We are now in Texas and Zach and Carter have Charcot-Marie-Tooth Disease, something I never even imagined would happen. Yet, here we are getting ready to celebrate his 16th bday in a couple of days and watch him take on CMT head to head. Am I worried yes, but Sean thinks I am a worry wart. I think I just love my kids an awful lot. On September 15th he will be 16 which for me means, he will be gone in two years to college, he will not need me as much as he used to, he will ignore me more often, choose his friends over me and maybe even a girlfriend over me! I hope he will always remember just how much I love him. How when he doesn't come home on time- mom doesn't sleep.
I know I will make it these next couple of years but it is going to be a rough rode emotionally. I know its time to let go a little but I am just not there! This whole post came from a post from a friend and it just happened to hit me on 9/11 and on his Sixteenth Bday week.
Saturday, September 10, 2011
Orthotics What You Need To Know
Carter's orthotic's finally arrived on Wednesday from Hanger Orthotics. Carter was a little worried about how long he would have to have them in and if they would hurt. Since this was our first time dealing with orthotics we really didn't know what to expect.
They told us to get him new shoes since the insoles would take up some room and that it will take a couple of weeks for him to work up to wearing them full time. We need to make sure that the shoe we get him has a removable insole and is not tight with the new insole. Carter starts off wearing the insert two times a day for 15 minutes for 3 days then tries to move up to 30 min 2 times a day and so forth. Until he is up to wearing them all the time.
The first night Carter wore them for 15 minutes but complained about pain. He said that it hurts to wear them. I told him it will take some getting used to this was his first time wearing them. But then Thursday he tried to wear them again for 15 minutes and complained of pain again. So for now he is only wearing them once a day for 15 minutes, basically we are off track big time. We are just going to gradually work our way into them. Gotta love teenagers!
Like I said we were new to all this so I though I would put together some helpful information on Orthotics for people.
What are Orthotics?
They are basically a device that fits into your shoe to help support and align your foot. They also provide correction and improve the function of the foot. In order to help your exact problem or problems you must get a prescription from you doctor to insure you get a "custom" orthotic to suit your needs. Remember, each person's foot is shaped differently so buying an over the counter insert will not help those with CMT.
What to expect when you go in for your custom orthotics.
When Carter went in for his they had did a full evaluation. A good specialists will ask you several questions about your daily living, any pain or discomfort you are having, medical history and so forth. They will also look at your feet, have you stand, walk, squat(if you can Carter can't really squat), walk on your heals(another thing Carter cannot do)..you get the idea. Neurological testing is another part of the exam as well. After examining your feet, gait and listening to you, they will determine what type of orthotic you will need.
How is the custom orthotic made?
The custom orthotic is made from a mold of your foot. The mold is an exact replica of your foots shape and contour. They are typically made from such materials as foams, rubbers, carbon fibers and more. Again, depending on your evaluation the specialist will determine what type of materials are used as well as how much support and control you'll need.
Will you have discomfort and how long will you need to have them?
Everyone is different, so some people may have mild discomfort and others moderate. This is why they gradually put you into them by having you wear them in small increments and working your way up to full time. Since the orthotic is realigning your lower extremities you may have some discomfort from your muscles trying to get used to the new alignment. From what I understand if after a few weeks you still feel some discomfort you should go back in for evaluation. As far as how long you have to wear them probably forever. Remember, they are improving your feet not correcting them. So as long as wear them you should feel some improvement. We were told you cannot expect miracles, they are not going to help straighten your toes or correct your arch. They will simply help support your foot and hopefully improve your way of life.
I hope this info helps someone. As I have said before I do not claim to be a doctor nor do I play one on t.v. I am just a mom trying to find my way through CMT for my boys.
Until Next Time.............I hope your feet are happy.....Mission Happy Feet
"Stay Strong, Believe"~Carter Hayes
They told us to get him new shoes since the insoles would take up some room and that it will take a couple of weeks for him to work up to wearing them full time. We need to make sure that the shoe we get him has a removable insole and is not tight with the new insole. Carter starts off wearing the insert two times a day for 15 minutes for 3 days then tries to move up to 30 min 2 times a day and so forth. Until he is up to wearing them all the time.
The first night Carter wore them for 15 minutes but complained about pain. He said that it hurts to wear them. I told him it will take some getting used to this was his first time wearing them. But then Thursday he tried to wear them again for 15 minutes and complained of pain again. So for now he is only wearing them once a day for 15 minutes, basically we are off track big time. We are just going to gradually work our way into them. Gotta love teenagers!
Like I said we were new to all this so I though I would put together some helpful information on Orthotics for people.
What are Orthotics?
They are basically a device that fits into your shoe to help support and align your foot. They also provide correction and improve the function of the foot. In order to help your exact problem or problems you must get a prescription from you doctor to insure you get a "custom" orthotic to suit your needs. Remember, each person's foot is shaped differently so buying an over the counter insert will not help those with CMT.
What to expect when you go in for your custom orthotics.
When Carter went in for his they had did a full evaluation. A good specialists will ask you several questions about your daily living, any pain or discomfort you are having, medical history and so forth. They will also look at your feet, have you stand, walk, squat(if you can Carter can't really squat), walk on your heals(another thing Carter cannot do)..you get the idea. Neurological testing is another part of the exam as well. After examining your feet, gait and listening to you, they will determine what type of orthotic you will need.
How is the custom orthotic made?
The custom orthotic is made from a mold of your foot. The mold is an exact replica of your foots shape and contour. They are typically made from such materials as foams, rubbers, carbon fibers and more. Again, depending on your evaluation the specialist will determine what type of materials are used as well as how much support and control you'll need.
Will you have discomfort and how long will you need to have them?
Everyone is different, so some people may have mild discomfort and others moderate. This is why they gradually put you into them by having you wear them in small increments and working your way up to full time. Since the orthotic is realigning your lower extremities you may have some discomfort from your muscles trying to get used to the new alignment. From what I understand if after a few weeks you still feel some discomfort you should go back in for evaluation. As far as how long you have to wear them probably forever. Remember, they are improving your feet not correcting them. So as long as wear them you should feel some improvement. We were told you cannot expect miracles, they are not going to help straighten your toes or correct your arch. They will simply help support your foot and hopefully improve your way of life.
I hope this info helps someone. As I have said before I do not claim to be a doctor nor do I play one on t.v. I am just a mom trying to find my way through CMT for my boys.
Until Next Time.............I hope your feet are happy.....Mission Happy Feet
"Stay Strong, Believe"~Carter Hayes
Thursday, September 8, 2011
Charcot Marie Tooth Awareness Month- Take The Challenge
WOW!!!! So far September has kicked off to a great start. Between the article in the Cross Timbers Gazette, the article on National CMT Resource Center, posting posters in local doctors offices and getting ready for the Cotton Patch Challenge my head is spinning!
We also have decided to have a booth at the Marcus 2 Cross Country Invitational on September 24th. We will be passing out information on CMT, selling Carter's Challenge bracelets, giving out CMTA bracelets n t-shirts, all to raise awareness for Charcot Marie Tooth Disease and the CMTA.
I also will be working with local businesses to raise awareness for CMT. Some of them are willing to help not only raise awareness but raise funds as well for research and one day a cure!
I WANT YOU ALL TO KNOW IF I, A STAY AT HOME MOM OF 4, CAN RAISE A BIT OF AWARENESS THEN U CAN TO!
I CHALLENGE EACH AND EVERYONE OF YOU TO DO ONE NEW EVENT, FACEBOOK POST, EMAIL, LETTER, NEWSPAPER AD, RADIO....SOMETHING BY MONDAY SEPTEMBER 30TH.
EACH INDIVIDUALS EFFORTS NO MATTER HOW SMALL CAN BRING US ONE STEP CLOSER TO A CURE!
SO PLEASE TAKE ON CARTERS CHALLENGE AND MAKE A DIFFERENCE TODAY. STAY STRONG, BELIEVE!
UNTIL NEXT TIME..........U CAN MAKE A DIFFERENCE!
We also have decided to have a booth at the Marcus 2 Cross Country Invitational on September 24th. We will be passing out information on CMT, selling Carter's Challenge bracelets, giving out CMTA bracelets n t-shirts, all to raise awareness for Charcot Marie Tooth Disease and the CMTA.
I also will be working with local businesses to raise awareness for CMT. Some of them are willing to help not only raise awareness but raise funds as well for research and one day a cure!
I WANT YOU ALL TO KNOW IF I, A STAY AT HOME MOM OF 4, CAN RAISE A BIT OF AWARENESS THEN U CAN TO!
I CHALLENGE EACH AND EVERYONE OF YOU TO DO ONE NEW EVENT, FACEBOOK POST, EMAIL, LETTER, NEWSPAPER AD, RADIO....SOMETHING BY MONDAY SEPTEMBER 30TH.
EACH INDIVIDUALS EFFORTS NO MATTER HOW SMALL CAN BRING US ONE STEP CLOSER TO A CURE!
SO PLEASE TAKE ON CARTERS CHALLENGE AND MAKE A DIFFERENCE TODAY. STAY STRONG, BELIEVE!
UNTIL NEXT TIME..........U CAN MAKE A DIFFERENCE!
Monday, September 5, 2011
CMT Doesn't Seem To Affect You.......Seriously?
I am having a hard time lately with some people saying to me "oh you are so lucky Carter and Zach really don't seem to be affected by CMT". They basically imply that it really doesn't affect us. Well, haven't they ever heard the saying don't judge a book by its cover? Just because Zach and Carter don't need braces right now and can still play, run and swim does not mean they aren't affected. What they don't see or notice is......
1. Because Zach has CMT he is a lot slower than his peers, trips over his own feet and doesn't jump well.
2. Zach has a hard time with shoes because of his arch, wide feet and sensory issues. Socks have to have no seam.
3. Zach has a hard time with homework because his hand tires quickly and cramps.
4. Carter has very high arches,hammer toes and he walks on his toes because of CMT.
5. Carter suffers from fatigue.
6. Carter gets pain in his feet, legs and knees. Sometimes so bad he has to lay down.
7. Carter cannot stand or walk for long periods without pain.
8. Carter also has a hard time with homework and taking notes because his hand tires quickly and cramps.
9. Carter's toes are numb and can cause him to get sores.
10. Buttoning shirts or trying to open jars is hard.
11. Carter had to change his school schedule because he cannot participate in Cross Country.
12. I can keep going but won't....
Can Carter run? Yes, he can but he is in pain the whole time. Did he run a mile in 5:31 on Saturday? Yes, he did but he did it in a lot of pain! What you have to realize is... he was a Cross Country runner for 1 1/2 years. He had the team and their parents behind him and the adrenaline kicked in. Could he do this everyday? Absolutely not! He has a hard enough time walking a couple blocks without tiring or pain. Carter has always had a high tolerance for pain and doesn't like to "quit" or be told "can't". He rarely will complain to anyone outside of our family, instead he will deal with the pain or numbness on his own. He just doesn't want to be "different".
What the outsiders don't see is....
Carter in pain after running not only in his feet, legs and knees but in his chest.
Carter in pain after trying to go to Six Flags with a friend. So much pain he couldn't walk anymore and slept for 15 hours.
Zach coming home sad because he is the last to be picked in PE.
Zach having to soak his feet in Epsom Salt to help his feet.
The bottom line is I am sure I am not the only mom, wife, sister, grandma, etc..out there there that has been presented with this statement. I am sure I will not be the last. I only hope that in the future more people are aware of the disease and the impact it has on people. Not everyone with CMT is affected the same way, some people need AFO's, some don't, some can run, some can't, some walk on their toes, some don't, the point is don't judge! It is a progressive disease!
Until Next Time...............TRY WALKING IN A CMTer'S SHOES JUST FOR A DAY THEN TELL ME HOW IT AFFECTS US!
P.S. sorry for rambling tonight just had to get it out!
"STAY STRONG, BELIEVE"
1. Because Zach has CMT he is a lot slower than his peers, trips over his own feet and doesn't jump well.
2. Zach has a hard time with shoes because of his arch, wide feet and sensory issues. Socks have to have no seam.
3. Zach has a hard time with homework because his hand tires quickly and cramps.
4. Carter has very high arches,hammer toes and he walks on his toes because of CMT.
5. Carter suffers from fatigue.
6. Carter gets pain in his feet, legs and knees. Sometimes so bad he has to lay down.
7. Carter cannot stand or walk for long periods without pain.
8. Carter also has a hard time with homework and taking notes because his hand tires quickly and cramps.
9. Carter's toes are numb and can cause him to get sores.
10. Buttoning shirts or trying to open jars is hard.
11. Carter had to change his school schedule because he cannot participate in Cross Country.
12. I can keep going but won't....
Can Carter run? Yes, he can but he is in pain the whole time. Did he run a mile in 5:31 on Saturday? Yes, he did but he did it in a lot of pain! What you have to realize is... he was a Cross Country runner for 1 1/2 years. He had the team and their parents behind him and the adrenaline kicked in. Could he do this everyday? Absolutely not! He has a hard enough time walking a couple blocks without tiring or pain. Carter has always had a high tolerance for pain and doesn't like to "quit" or be told "can't". He rarely will complain to anyone outside of our family, instead he will deal with the pain or numbness on his own. He just doesn't want to be "different".
What the outsiders don't see is....
Carter in pain after running not only in his feet, legs and knees but in his chest.
Carter in pain after trying to go to Six Flags with a friend. So much pain he couldn't walk anymore and slept for 15 hours.
Zach coming home sad because he is the last to be picked in PE.
Zach having to soak his feet in Epsom Salt to help his feet.
The bottom line is I am sure I am not the only mom, wife, sister, grandma, etc..out there there that has been presented with this statement. I am sure I will not be the last. I only hope that in the future more people are aware of the disease and the impact it has on people. Not everyone with CMT is affected the same way, some people need AFO's, some don't, some can run, some can't, some walk on their toes, some don't, the point is don't judge! It is a progressive disease!
Until Next Time...............TRY WALKING IN A CMTer'S SHOES JUST FOR A DAY THEN TELL ME HOW IT AFFECTS US!
P.S. sorry for rambling tonight just had to get it out!
"STAY STRONG, BELIEVE"
Friday, September 2, 2011
Local Teen Gives Speech On Charcot Marie Tooth Disease In Support Of Friend
I know my son has great friends who care about him and support him but I guess I never knew how dedicated some are. How some friends will take the time to learn about your disease and stand up to talk about it without even being asked. This is exactly what Brady Steele did.
We met the Steele family last summer when Carter started Marcus Cross Country. Adam, Brady's older brother and Carter quickly became instant BFF's and so did his mom and I (at least I think she is my BFF). Since Carter was always over there he and Brady naturally became friends as well. When Carter was diagnosed with CMT of course they were the first to find out. The Steele family quickly became our rock during these hard times. Adam and Brady always watching out for Carter, listening to him and supporting him through all of this. So I guess it shouldn't surprise me to find out from Kristi that Brady took matters in to his own hands.
Today, Brady gave a speech on Charcot Marie Tooth Disease in his leadership class in support of his friend, Carter. He could choose any topic to give a speech on and he chose to give a speech on Carter and CMT! WHAT A REMARKABLE YOUNG MAN! Brady knew that September was CMT Awareness Month since he posted it on his Facebook and he took action.
THANK YOU BRADY FOR RAISING AWARENESS FOR CMT! THANK YOU FOR BEING SUCH A GREAT FRIEND TO CARTER AND RISING UP TO THE OCCASION! WE ARE TRULY BLESSED TO HAVE YOU AND YOUR FAMILY IN OUR LIVES.
I of course cannot leave Adam out. Adam, Carter's BFF is doing his part too. He was the first to change his profile pic on Facebook to a CMT Awareness Avatar, posted about CMT Awareness on Facebook, stood by Carter Saturday night as he ran the mile, volunteering at our bake sale and more. He is always, always asking what he can do to help. What Adam doesn't realize is..... he is already doing the most important job, he is supporting his best friend just by being there for him when he needs him. THANK YOU! U KNOW WE LOVE YOU!
Until Next Time..................What are you doing to raise awareness?
"Stay Strong, Believe"~Carter Hayes
We met the Steele family last summer when Carter started Marcus Cross Country. Adam, Brady's older brother and Carter quickly became instant BFF's and so did his mom and I (at least I think she is my BFF). Since Carter was always over there he and Brady naturally became friends as well. When Carter was diagnosed with CMT of course they were the first to find out. The Steele family quickly became our rock during these hard times. Adam and Brady always watching out for Carter, listening to him and supporting him through all of this. So I guess it shouldn't surprise me to find out from Kristi that Brady took matters in to his own hands.
Today, Brady gave a speech on Charcot Marie Tooth Disease in his leadership class in support of his friend, Carter. He could choose any topic to give a speech on and he chose to give a speech on Carter and CMT! WHAT A REMARKABLE YOUNG MAN! Brady knew that September was CMT Awareness Month since he posted it on his Facebook and he took action.
THANK YOU BRADY FOR RAISING AWARENESS FOR CMT! THANK YOU FOR BEING SUCH A GREAT FRIEND TO CARTER AND RISING UP TO THE OCCASION! WE ARE TRULY BLESSED TO HAVE YOU AND YOUR FAMILY IN OUR LIVES.
I of course cannot leave Adam out. Adam, Carter's BFF is doing his part too. He was the first to change his profile pic on Facebook to a CMT Awareness Avatar, posted about CMT Awareness on Facebook, stood by Carter Saturday night as he ran the mile, volunteering at our bake sale and more. He is always, always asking what he can do to help. What Adam doesn't realize is..... he is already doing the most important job, he is supporting his best friend just by being there for him when he needs him. THANK YOU! U KNOW WE LOVE YOU!
Until Next Time..................What are you doing to raise awareness?
"Stay Strong, Believe"~Carter Hayes
Wednesday, August 31, 2011
Charcot Marie Tooth Awareness Month Is Here!
Tomorrow is September 1st and the start of CHARCOT MARIE TOOTH AWARENESS MONTH!!!!!
I know a lot of us have been so busy getting ready to raise awareness. I wanted to say some shout outs to some very special people who I think do an outstanding job raising awareness for Charcot Marie Tooth Disease.
- Kaitlyn and Lori Mattheis with Mission Happy Feet. This mother, daughter duo do such a great job getting the word out by making bracelets with feet on them, blogging, holding events, making videos and more! Way to go guys!
- Elizabeth Ouellette with Charcot Marie Tooth Association. I don't even know where to begin...She does it all! Videos, school events, public speaking, fundraising, and the list goes on. She volunteers for the CMTA and gives it everything she's got! Kudos Elizabeth!
- Melinda Lang with Living Well With CMT. Melinda has done some amazing things for CMT. Not only does she blog about it and hold fundraisers but she also received a CMT Awareness Month proclamation from the State Of New York and the City Of Albany!!!! Way to raise Awareness!
- Carol Liu with National CMT Resource Center. Wow this is all I can say about Carol. She like Elizabeth seems to do it all. Blog, tweet, editor in cheif for HNF, attorney, mom, oh and yeah wrote Arlene On the Scene. Like I said WOW!
I have made some great friendships so far in this journey, friends from all over the world! The CMT community is AMAZING! To my new friends Carly Andrews, Melissa Wilson Arakaki, Melissa Lykins you all have been a great support and have done wonderful things for CMT. Keep up the outstanding work!
Until Next Time.............."STAY STRONG, BELIEVE"
Sunday, August 28, 2011
How Having The Support Of One Amazing Cross Country Team Can Encourage A Fighter to Fight!
I know I have written a lot about how Carter inspires me or how he makes me proud, well I am doing it again. Only this time I am writing to tell you about an awe inspiring moment that I believe will inspire others to NEVER GIVE UP, FIGHT WITH ALL YOU HAVE, AND STAY STRONG, BELIEVE!
Last night Carter decided to go and support his cross country friends at their 1 mile time trials. Every year at the beginning of the season, Coach T does what is called SOS under the lights. At 9 p.m. all Cross Country kids meet at Marcus Track and Field and do their 1 mile time trial under the lights. Parents, friends and supporters show up to cheer them on and its just a really cool, exciting event. Actually, its a huge deal this is where the kids basically see who is on Varsity and obviously who the fastest is.
Well, after they all ran their time trial Carter was telling his BFF Adam, hey I want to run the mile (he misses CC so much). So, Adam got a stop watch and Carter lined up at the start line and they yelled GO! By the way, he wasn't dressed in running clothes! As Carter starts running he is joined by the Hendrix twins, John Shirk and Sean Duffy who are running with him, encouraging him to keep going and push harder. At one point John told Carter, this is going to hurt when its all over but its going to be worth it. On the sidelines, the rest of Marcus Cross Country is cheering him on. As he is running his stomach starts to hurt, his chest and so forth. Does he give up? No way, Carter pushed through the pain in his chest, stomache, knees, achiles heal and feet to cross the finish line in 5:31!!!!!!
HE RAN THE MILE IN 5:31 WITH NO TRAINING OVER THE SUMMER, NO RUNNING CLOTHES, NO PREPERATION WHAT SO EVER! THIS WAS PURE DETERMINATION, AN I CAN DO MOMENT, I AM A FIGHTER! I CONTROL THE DISEASE THE DISEASE DOES NOT CONTROL ME!
A MOMENT IN TIME ME, AS A MOTHER WILL NEVER FORGET.
A MOMENT WHEN ONE OUTSTANDING TEAM CAME TOGETHER TO ENCOURAGE A FIGHTER.
THANK YOU MARCUS CROSS COUNTRY TEAM FOR YOUR SUPPORT AND ENCOURAGEMENT! WE ARE TRULY BLESSED TO HAVE YOU IN OUR LIVES. THERE JUST SIMPLY IS NO BETTER TEAM THAN THE MARCUS CROSS COUNTRY TEAM!To "celebrate" they took Carter to I-Hop. When he came home he was so happy, elated, and full of energy, surprising it was after midnight, he hurt but he said it was all worth it. He said he misses that rush you get when your running. I know what he means I miss it too.
Until Next Time............GO MARCUS CROSS COUNTRY!
Last night Carter decided to go and support his cross country friends at their 1 mile time trials. Every year at the beginning of the season, Coach T does what is called SOS under the lights. At 9 p.m. all Cross Country kids meet at Marcus Track and Field and do their 1 mile time trial under the lights. Parents, friends and supporters show up to cheer them on and its just a really cool, exciting event. Actually, its a huge deal this is where the kids basically see who is on Varsity and obviously who the fastest is.
Well, after they all ran their time trial Carter was telling his BFF Adam, hey I want to run the mile (he misses CC so much). So, Adam got a stop watch and Carter lined up at the start line and they yelled GO! By the way, he wasn't dressed in running clothes! As Carter starts running he is joined by the Hendrix twins, John Shirk and Sean Duffy who are running with him, encouraging him to keep going and push harder. At one point John told Carter, this is going to hurt when its all over but its going to be worth it. On the sidelines, the rest of Marcus Cross Country is cheering him on. As he is running his stomach starts to hurt, his chest and so forth. Does he give up? No way, Carter pushed through the pain in his chest, stomache, knees, achiles heal and feet to cross the finish line in 5:31!!!!!!
HE RAN THE MILE IN 5:31 WITH NO TRAINING OVER THE SUMMER, NO RUNNING CLOTHES, NO PREPERATION WHAT SO EVER! THIS WAS PURE DETERMINATION, AN I CAN DO MOMENT, I AM A FIGHTER! I CONTROL THE DISEASE THE DISEASE DOES NOT CONTROL ME!
A MOMENT IN TIME ME, AS A MOTHER WILL NEVER FORGET.
A MOMENT WHEN ONE OUTSTANDING TEAM CAME TOGETHER TO ENCOURAGE A FIGHTER.
THANK YOU MARCUS CROSS COUNTRY TEAM FOR YOUR SUPPORT AND ENCOURAGEMENT! WE ARE TRULY BLESSED TO HAVE YOU IN OUR LIVES. THERE JUST SIMPLY IS NO BETTER TEAM THAN THE MARCUS CROSS COUNTRY TEAM!To "celebrate" they took Carter to I-Hop. When he came home he was so happy, elated, and full of energy, surprising it was after midnight, he hurt but he said it was all worth it. He said he misses that rush you get when your running. I know what he means I miss it too.
Until Next Time............GO MARCUS CROSS COUNTRY!
Saturday, August 27, 2011
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
Thursday, August 25, 2011
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
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!
Until Next Time.........SPREAD AWARENESS~THE TIME IS NOW!
"Stay Strong,Believe" Carter Hayes
Tuesday, August 23, 2011
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
Monday, August 22, 2011
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
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
Friday, August 19, 2011
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
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
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
Wednesday, August 17, 2011
CMT Awareness Month and Cotton Patch Challenge
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
Tuesday, August 16, 2011
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
Until Next Time................."Stay Strong, Believe" Carter Hayes
Sunday, August 14, 2011
September CMT Awareness Month:The Time Is Now.
The CMTA has organized a National Awareness Month to bring attention to the number one inherited neurological disease in the world, Charcot Marie Tooth Disease. To help raise awareness and funds for the Star Initiative Program we will be doing some fundraisers of our own. We are looking for some ideas and thought we would ask all of you. Does anyone have any ideas for a good fundraiser? Let us know by leaving a comment. We are thinking of doing a bake sale, so if anyone has any suggestions for a successful bake sale let us know by sending an email to carterschallenge@gmail.comSeptember CMT Awareness Month: The Time Is Now. This Is Where The End of CMT Begins!
For more information on what will be taking place during the month of September check out http://www.wearethecmta.com/ They have a wall you can sign to show your support. If you sign it please let us know by leaving a comment.
We will also be doing a fundraiser via Facebook. Stay tuned for more information on the Facebook fundraiser. It is going to tie in Carter's Birthday! Sweet 16!
Until Next Time.........Raising Awareness One Step At A Time
"Stay Strong, Believe"~Carter HayesResources: CMTA, www.wearethecmta.org
Friday, August 12, 2011
We are Truly Blessed!
You never know when things are bad who is going to stick it out with you. Will friends stop calling or stopping by? Or will they be your guardian angel and guide you through the rough rode ahead?
I have found that over the past couple of weeks and days that we are truly blessed to be surrounded by such wonderful people. I MEAN IT FROM THE BOTTOM OF MY HEART. There are teachers, nurses, friends, Cross Country moms and even my dentist just to name a few. Each and everyone of you deserve a big THANK YOU.
To Zach's 3rd grade teachers Ms. Hampton and Ms. Phillips you both are amazing teachers and people. Zach was so blessed to have you both in 3rd grade. I want to thank you for reaching out to us and assuring me that Zach would be well taken care of at Flower Mound Elementary. I know he will be because he has the two of you on his side.
To Dayne our fearless Cross Country Parent Leader. You amaze me at how much you accomplish during the year and how dedicated you are to the team and their parents. Thank you for your support and for spreading the CMT news. We were so blessed to be a part of such an amazing, caring, loving and fun team. There simply is no other team at Marcus High School nor in the world, that could hold a candle to our team. From the kids, to the parents, managers, volunteers, to Coach T and Coach Brevard you all make it such a joy to be apart of the team. We will miss each and every one of you! Even though Carter cannot compete we will still attend meets to cheer you all on. You will always be in our hearts and prayers. Thanks again for sending out an email and we would be honored to have you guys help us in anyway. We will always be a part of the CC family!
Last but not least Kristi Steele and Jo Beth Tagaras,
There are acquaintance's, there are friends and there are great friends but every once in awhile you get the cream of the crop. Yes ladies, you are the Creme De La Creme of friends. Kristi, you my dear, I really don't know what I would have done over the last couple of months without you. You have been there for me more than anyone! Carter loves being a part of your family and I appreciate you picking him up and dropping him off on such short notice! JoBeth, you are an amazing friend and I love how I don't even have to ask for help, you just jump right on in. Like the time I saw you at Target, I had to leave to get Carter suddenly and you brought my groceries! I owe you big time! You have such a big heart and beautiful soul. Your fundraising ideas are awesome and I would have never of thought of them. Thank you ladies for being such a big part of our lives. I guess I need to thank our kids for being friends and the Cross Country Team for putting us all on the morning breakfast crew! LOVE YOU GUYS SO MUCH!
Thank you again to each and everyone of you. Family-you know how I feel about you all! xo
Until Next Time..............MAY GOD BLESS EACH AND EVERY ONE OF YOU!
Michelle
"STAY STRONG, BELIEVE"~Carter Hayes
I have found that over the past couple of weeks and days that we are truly blessed to be surrounded by such wonderful people. I MEAN IT FROM THE BOTTOM OF MY HEART. There are teachers, nurses, friends, Cross Country moms and even my dentist just to name a few. Each and everyone of you deserve a big THANK YOU.
To Zach's 3rd grade teachers Ms. Hampton and Ms. Phillips you both are amazing teachers and people. Zach was so blessed to have you both in 3rd grade. I want to thank you for reaching out to us and assuring me that Zach would be well taken care of at Flower Mound Elementary. I know he will be because he has the two of you on his side.
To Dayne our fearless Cross Country Parent Leader. You amaze me at how much you accomplish during the year and how dedicated you are to the team and their parents. Thank you for your support and for spreading the CMT news. We were so blessed to be a part of such an amazing, caring, loving and fun team. There simply is no other team at Marcus High School nor in the world, that could hold a candle to our team. From the kids, to the parents, managers, volunteers, to Coach T and Coach Brevard you all make it such a joy to be apart of the team. We will miss each and every one of you! Even though Carter cannot compete we will still attend meets to cheer you all on. You will always be in our hearts and prayers. Thanks again for sending out an email and we would be honored to have you guys help us in anyway. We will always be a part of the CC family!
Last but not least Kristi Steele and Jo Beth Tagaras,
There are acquaintance's, there are friends and there are great friends but every once in awhile you get the cream of the crop. Yes ladies, you are the Creme De La Creme of friends. Kristi, you my dear, I really don't know what I would have done over the last couple of months without you. You have been there for me more than anyone! Carter loves being a part of your family and I appreciate you picking him up and dropping him off on such short notice! JoBeth, you are an amazing friend and I love how I don't even have to ask for help, you just jump right on in. Like the time I saw you at Target, I had to leave to get Carter suddenly and you brought my groceries! I owe you big time! You have such a big heart and beautiful soul. Your fundraising ideas are awesome and I would have never of thought of them. Thank you ladies for being such a big part of our lives. I guess I need to thank our kids for being friends and the Cross Country Team for putting us all on the morning breakfast crew! LOVE YOU GUYS SO MUCH!
Thank you again to each and everyone of you. Family-you know how I feel about you all! xo
Until Next Time..............MAY GOD BLESS EACH AND EVERY ONE OF YOU!
Michelle
"STAY STRONG, BELIEVE"~Carter Hayes
Thursday, August 11, 2011
Recommended Supplements for CMT
Just thought I would share this articl with everyone. Good information!
Dr. Gregory Carter (CMT expert at U of Washington in Seattle) recommends the following supplements to persons with CMT.
Multi-mineral vitamin
5HTP (with cautions) (anti-depression and sleep–aid)
L-glutamine (skeletal muscle health)
L-Taurine (skeletal muscle maintenance)
L-leucine (increases the synthesis of muscle proteins)
L-methionine (amino acid)
L-tyrosine (for energy)
L-theanine (muscle spasms/twitching)
Ester C (Ester-C® Calcium Ascorbate is a unique and patented form of vitamin C. It is made using a proprietary, water-based manufacturing process which results in a pH neutral product that contains naturally occurring vitamin C metabolites. These metabolites activate the vitamin C molecules making it easier for the body to transport them from cell to cell for numerous health benefits.)
Calcium (Calcium is an essential dietary element, a constant blood calcium level being essential for the maintenance of the normal heartbeat, and for the normal functioning of nerves and muscles. Calcium ion is essential in a wide variety of important physiological processes, including muscle contraction, neuronal excitability, neurotransmitter and hormonal release, membrane integrity and permeability, signal transduction, enzyme function, and blood coagulation.)
Magnesium (An essential element which influences many enzymes needed to produce cellular energy and nerve and muscle message transmission. It affects nervous, muscular and cardiovascular systems. Magnesium is the fourth most abundant mineral in the body and is essential to good health. In humans it is found in bones, teeth, and red blood cells, magnesium activates many enzyme systems (such as those involved in protein digestion and energy production).
Zinc (protects against premature aging muscles of the body)
Resources: CMTA
Dr. Gregory Carter (CMT expert at U of Washington in Seattle) recommends the following supplements to persons with CMT.
Multi-mineral vitamin
5HTP (with cautions) (anti-depression and sleep–aid)
L-glutamine (skeletal muscle health)
L-Taurine (skeletal muscle maintenance)
L-leucine (increases the synthesis of muscle proteins)
L-methionine (amino acid)
L-tyrosine (for energy)
L-theanine (muscle spasms/twitching)
Ester C (Ester-C® Calcium Ascorbate is a unique and patented form of vitamin C. It is made using a proprietary, water-based manufacturing process which results in a pH neutral product that contains naturally occurring vitamin C metabolites. These metabolites activate the vitamin C molecules making it easier for the body to transport them from cell to cell for numerous health benefits.)
Calcium (Calcium is an essential dietary element, a constant blood calcium level being essential for the maintenance of the normal heartbeat, and for the normal functioning of nerves and muscles. Calcium ion is essential in a wide variety of important physiological processes, including muscle contraction, neuronal excitability, neurotransmitter and hormonal release, membrane integrity and permeability, signal transduction, enzyme function, and blood coagulation.)
Magnesium (An essential element which influences many enzymes needed to produce cellular energy and nerve and muscle message transmission. It affects nervous, muscular and cardiovascular systems. Magnesium is the fourth most abundant mineral in the body and is essential to good health. In humans it is found in bones, teeth, and red blood cells, magnesium activates many enzyme systems (such as those involved in protein digestion and energy production).
Zinc (protects against premature aging muscles of the body)
Resources: CMTA
Wednesday, August 10, 2011
Cotton Patch Challenge
Carter's Challenge presented a challenge to all of you the other day. We asked you to email or tell 5 people about this website. Did you tell or email 5 people? Let us know by leaving a comment or email us.
Carter's first road race will be taking place on September 17th and 18th. He will be racing in the Cotton Patch Challenge in Greenville, Tx. The race begins at 7:55 am and is 31 miles long! Carter is so ecstatic about racing in his first race, his birthday week and when his Nana is in town. We would also like to invite all our friends and family to come cheer Carter on in his first race.
Carter has been training pretty hard for this race. He tries to cycle for 1-2 hours a day right now. He is not training outside since it is 105-111 here in Texas! The heat is just too much and we don't want him to get dehydrated or heat exhaustion. We have an indoor trainer that allows Carter to ride his bike inside and he can watch t.v. while riding so that is a plus.
So far Carter has done very well with his training on the bike. He hasn't had too much pain just every now and then he will get it in his knees, but his feet aren't bothering him at all! He of course is fatigued when he is done, but that is expected since fatigue is a huge problem with CMT patients. Plus riding for 1-2 hours can wear you out. Overall, he feels good when he is on the bike.
Please feel free to leave some encouraging comments for Carter to help him get through his training for the race. To all our CMT friends we have a question for you. Have you done a cycling race before? If so tell us about it we would love to hear about your experience and any tips you may have.
Carter's first road race will be taking place on September 17th and 18th. He will be racing in the Cotton Patch Challenge in Greenville, Tx. The race begins at 7:55 am and is 31 miles long! Carter is so ecstatic about racing in his first race, his birthday week and when his Nana is in town. We would also like to invite all our friends and family to come cheer Carter on in his first race.
Carter has been training pretty hard for this race. He tries to cycle for 1-2 hours a day right now. He is not training outside since it is 105-111 here in Texas! The heat is just too much and we don't want him to get dehydrated or heat exhaustion. We have an indoor trainer that allows Carter to ride his bike inside and he can watch t.v. while riding so that is a plus.
So far Carter has done very well with his training on the bike. He hasn't had too much pain just every now and then he will get it in his knees, but his feet aren't bothering him at all! He of course is fatigued when he is done, but that is expected since fatigue is a huge problem with CMT patients. Plus riding for 1-2 hours can wear you out. Overall, he feels good when he is on the bike.
Please feel free to leave some encouraging comments for Carter to help him get through his training for the race. To all our CMT friends we have a question for you. Have you done a cycling race before? If so tell us about it we would love to hear about your experience and any tips you may have.
Until Next Time......................"Anything is possible. You can be told that you have a 90-percent chance or a 50-percent chance, but you have to believe, and you have to fight." ~Lance Armstrong
Great News Just Keeps On Coming!
First of all I want to say Thank You so much to everyone who is reading this blog! Thanks for all the great emails that let us know you are thinking of us. Carter looks forward to reading the comments on the blog and checking the emails everyday, so keep them coming!
Sean's boss, Kirk at Bob Moore Subaru, called him tonight and told Sean he just received an email from his friend, who is the head legal counsel for Scottish Rite here in Dallas. The email stated that Kirk's friend's application for their two kids was reviewed today and IT WAS ACCEPTED! Yep, thanks to Kirk and his connections and Kim Bookout, our wonderful Pediatrician at 18 and Under MD, we got into Scottish Rite in record time! We should be hearing from them shortly! I cannot tell you all how much this means to us. We were so worried that we would not get in and that it would take a long time to hear from them. Now we don't have
I am sooo happy and excited! The last two days have been filled with such great news and I truly believe God is just watching over us right now. We are truly blessed to be surrounded by such incredible people. As soon as we here when our first appointment is I will let you all know.
Until Next Time.................THANK YOU EVERYONE!
Sean's boss, Kirk at Bob Moore Subaru, called him tonight and told Sean he just received an email from his friend, who is the head legal counsel for Scottish Rite here in Dallas. The email stated that Kirk's friend's application for their two kids was reviewed today and IT WAS ACCEPTED! Yep, thanks to Kirk and his connections and Kim Bookout, our wonderful Pediatrician at 18 and Under MD, we got into Scottish Rite in record time! We should be hearing from them shortly! I cannot tell you all how much this means to us. We were so worried that we would not get in and that it would take a long time to hear from them. Now we don't have
I am sooo happy and excited! The last two days have been filled with such great news and I truly believe God is just watching over us right now. We are truly blessed to be surrounded by such incredible people. As soon as we here when our first appointment is I will let you all know.
Until Next Time.................THANK YOU EVERYONE!
Tuesday, August 9, 2011
Detroit Here We Come!
So today on my to-do list was to call Lisa at Dr. Shy's office at Wayne State University in Detroit, Michigan. See Dr. Shy is a Professor of Neurology and Molecular Medicine and Genetics and is known around the world as the best CMT doctor. People travel from all over the world to be evaluated at his one of a kind CMT clinic.
The CMT clinic is set up as a multidisciplinary team, consisting of a neurologist, electrophysiologist, genetic counselor and physiatry specialists. They assess each patient clinically but also collect data for research to help develop new ways to treat CMT and ultimately find a cure.
Wayne State CMT Clinic is the lead clinic in research and is currently one of three sites doing a clinical trial for CMT 1A on High Dose Ascorbic Acid. They have received numerous grants from the National Institutes of Health, Charcot Marie Tooth Association and the MDA just to name a few. This allows them to provide free clinics to families with CMT. YEP FREE! They bill your insurance and then you don't have to pay the rest!
Thanks to Jeanna Sweeney giving me the number to contact I was able to talk with Lisa, who assist Dr. Shy at the CMT clinic today and she said they would love to see they boys! I almost started bawling on the phone with her but I didn't want to miss any information she was giving me. So on DECEMBER 15TH 2011 WE WILL BE GOING TO DETROIT MICHIGAN! COME H*** OR HIGH WATER! This was what she had open and I said absolutely without even thinking twice about it.
I am soooo excited and soooo thankful that Carter and Zach will have the opportunity to be seen by the best of the best Doctors on CMT. God is truly blessing us right now.
So now I have to find out how me and the boys are going to get there but I know it will happen somehow, someway.
Until Next Time.................DETROIT HERE WE COME!
Subscribe to:
Posts (Atom)