My mom has been posting more than me so I thought I better jump on or else! LOL
So I decided to do a triathlon this year to push my limits a little farther and to raise awareness for CMT. My parents found a local one in our town called "The Caveman Triathlon". We all thought it would be best that my first triathlon is number one in a pool and a smaller one. The Caveman Triathlon consists of a 275 yard swim, 13 mile bike ride and finishes off with a sweet 3.1 run! Oh yeah! Not by any means a Ironman but I will do that at some point. :)
In order to train for this my parents hired a swim coach who does triathlons himself. I cycle and run several times a week, swim at least 4 days and lift weights off and on. I have completely cut out all fast food (thanks to the movie Supersize Me), eat a ton of protein and lots of fruits and veggies. Cutting out the fast food wasn't as hard as I thought it would be. Overall, the eating has not been the hard part....the training has been.
See I ran into a little bit of issue while training. A few weeks ago I came down with a horrible pain in my lower right back area. Basically from your lower lumbar over to the right side. It would come and go but then it got to the point where I couldn't really move. No its not my appendix had that removed already. On top of that I was having pain again in the area where I had my hernia. After many tests they believe I had kidney stones. Oh and then of course as you all know there is the CMT pain! I have gotten used to the pain in my legs and feet but recently I am getting pain in my arms and hands. It slowed me down for a bit but I am up and running at full speed again.
15 more days until THE CAVEMAN!
Remember, treat everyday as if was going to be your last. I like many others with CMT do not know when our legs will give out if they do at all. So why not push the limits? LIVE FOR THE DAY!
Carter Hayes
"Stay Strong, Believe"
Saturday, April 6, 2013
Friday, April 5, 2013
"With God, All things are possible" Matthew 19:26
I know it has been over a year since my last post and I wish I could say I haven't posted because I was on a extended vaca but that is just not the case. This past year and a half has been filled with many ups and downs, twists and turns and so on. In February of 2012, my mom was diagnosed with stage 4 Carcinoid Cancer. Carcinoid is a rare cancer and like CMT it has NO CURE! My mom went through a major surgery over Mothers Day last year and just like her grandson she is a fighter! Her one year anniversary since the surgery is coming up and I am praying for good news.
So it was just to hard to keep writing emotionally for both Carter and myself since her diagnosis came just seven months after Carter's and Zach's. We both believe now that some healing has taken place, we need to really reach out again. I can tell you the one reason why I am writing today is Carter has shown that "With God, All things are possible." Matthew 19:26
As many of you know Carter quit the Cross Country after his Freshman year. It was not a choice made lightly and not an easy one by any means. His sophomore year was rough to say the least with many talks about working through the loss of his team. He missed the camaraderie, support and just the joy he received from running. Plus his team missed him. Can't say enough about those boys. So after many, many talks with doctors, we decided to let Carter join the Cross Country team again for his junior year! Carter spoke with coach T and we all agreed we would see how he handled the summer workouts. Guess what he did great! He had pain but pushed through it and let me tell you it made a huge difference for him mentally.
The team had their best season ever! It was the "YEAR OF THE SWEEP" as we like to call it. We won 4 meets in a row, District Champs, Region 1 Runner Up and the boys took 5th in State!!!!
Carter didn't come in first or even the top 10 but he did PR(personal record). He actually beat his record from Freshman year despite taking a whole year off and with CMT! He fought off the fatigue, leg pain, foot pain and chest pain. He never complained, he just dug his heels in and ran every meet as if it was last. Yes, I was at every meet and I did cry.....PROUD MOMMA.
I believe Carter's faith allowed him to persevere through his trial and tribulations. His faith will continue to guide him through his many challenges to come.
Remember, "pain is temporary, quitting is forever".
Momma Hayes (this is what the CC guys call me, so its sticking around)
"Stay Strong, Believe" ~Carter Hayes
So it was just to hard to keep writing emotionally for both Carter and myself since her diagnosis came just seven months after Carter's and Zach's. We both believe now that some healing has taken place, we need to really reach out again. I can tell you the one reason why I am writing today is Carter has shown that "With God, All things are possible." Matthew 19:26
As many of you know Carter quit the Cross Country after his Freshman year. It was not a choice made lightly and not an easy one by any means. His sophomore year was rough to say the least with many talks about working through the loss of his team. He missed the camaraderie, support and just the joy he received from running. Plus his team missed him. Can't say enough about those boys. So after many, many talks with doctors, we decided to let Carter join the Cross Country team again for his junior year! Carter spoke with coach T and we all agreed we would see how he handled the summer workouts. Guess what he did great! He had pain but pushed through it and let me tell you it made a huge difference for him mentally.
The team had their best season ever! It was the "YEAR OF THE SWEEP" as we like to call it. We won 4 meets in a row, District Champs, Region 1 Runner Up and the boys took 5th in State!!!!
Carter didn't come in first or even the top 10 but he did PR(personal record). He actually beat his record from Freshman year despite taking a whole year off and with CMT! He fought off the fatigue, leg pain, foot pain and chest pain. He never complained, he just dug his heels in and ran every meet as if it was last. Yes, I was at every meet and I did cry.....PROUD MOMMA.
I believe Carter's faith allowed him to persevere through his trial and tribulations. His faith will continue to guide him through his many challenges to come.
Remember, "pain is temporary, quitting is forever".
Momma Hayes (this is what the CC guys call me, so its sticking around)
"Stay Strong, Believe" ~Carter Hayes
Thursday, November 3, 2011
Philippians 4:13 I can do everything through him who gives me strength.
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
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
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
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