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
Friday, September 16, 2011
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
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