Can't believe September is already upon us! Awareness month is here! This year I decided to reach out to Governor Perry to ask for a proclamation on behalf of all those affected by Charcot Marie Tooth Disease. Well guess what? I got it! I am happy to report that here in Texas the month of September is officially Charcot Marie Tooth Awareness Month! Now is the time for us to take full advantage of this proclamation and get out there and make some noise!
This September is the first Awareness month that Carter won't be here with us. He is off at college.
Even though he won't be here with us to raise awareness in Texas, he will be helping to raise it in Kansas. He will be telling KU students about his and Zach's disease, passing out CMT and Carter's Challenge bracelets. He said he has already told some of the guys he lives with about it, since they were all asking about his bi-pap machine. He is making a difference just by discussing the disease with others who are completely unaware of the disease. There are several pre-meds at Pearson and they had never heard of it. Maybe, just maybe one of them will do a paper on CMT. Wouldn't that be sweet! They all were all intrigued by disease, how it progresses, what it affects and how it varies from person to person. They were all impressed with how Carter does not let the disease define him.
This month I will be blogging once a week to help raise awareness, share our journey with the CMT, raising kids with a disability and how to not let their circumstances define them. I hope that by blogging more about our story it will help not only raise awareness but help those in a similar situation.
Zach, Ayden and I will be raising awareness by passing out CMT and Carters Challenge bracelets, mailing out CMT postcards to friends and family, posting CMT posters all around town, wearing our CMT shirts and shoelaces and telling everyone and anyone about CMT.
Just remember you can raise awareness and make a difference just by telling your story. For those of you who are not affected by the disease I am asking you to tell at least 5 people about CMT.
What are you going to do to help raise awareness?
Until next time,
Stay Strong, Believe
Momma Hayes
Showing posts with label CMT Awareness Month. Show all posts
Showing posts with label CMT Awareness Month. Show all posts
Wednesday, September 3, 2014
Saturday, July 19, 2014
"BE STILL AND KNOW THAT I AM GOD" PSALM 46:10
This verse just keeps coming to me over and over again in my head. "Be still and know that I am God." Psalm 46:10. It sounds so easy to do, but in reality it just isn't. Especially when you feel like you are in a tornado, everything is spinning so fast and you just can't find a way out. When it seems like waves just keep crashing against you pushing you further and further away from the shore. I know this all sounds dark but honestly this is how I feel right now. I feel hopeless and defeated. I know He has a plan and its all in His time but honestly sometimes I want it on my time, on my terms.
I took a break from blogging again just because I had to spend time with my boys and not worry about what I was going to be posting next. Especially, with Carter leaving in...oh 4 weeks! I actually wasn't going to blog all summer, but then I realized I started this blog to help others. To show them that no matter what up hill battle they face, what season they are in, they can get through it. I can't help them if I am not sharing our own experiences with this horrible, rotten no good disease!
4 weeks ago I was laying with my 5 year old and rubbing his back to put him to sleep. He was having leg pain....the same leg pain Carter and Zach get. He was crying and begging me to make it stop. Inside my heart was just breaking, knowing that this is most likely a sign of the disease starting in him. Then I felt it...a small curve in his upper back between his shoulder blades. My heart sank again. All I wanted was for my boo bear to escape the wrath of this horrible, horrible disease! I remember crying out to God that night why? Why does he have to suffer too? Why do all 3 of my precious, sweet boys have to deal with this "monster". (side note I am stealing the word monster from my sweet neighbor who used it to describe her cancer)
Honestly, the next day I pushed all my fears into the back of my mind. I told myself there is no way this is happening, it was just growing pains and I was tired. Then the pain happened again and again. So to ease my worries I made an appointment with our neurologist. I did not tell anyone, not even his brothers. My worse nightmare seems to be coming true. She said "it looks like this is early signs of CMT" She said "without doing an NCV (nerve conduction velocity) and a EMG(electromyogram) or DNA test she cannot say 100% that he has it". But she said from the testing she did she would venture to guess he has it. I remember her saying "his legs show some signs of weakness, he has a small curvature in his spine, just like Carter, pain in the legs, and then the rest is like the sound of the teachers in Charlie Brown, blah blah....Then she finished with " all this leads me to believe he is starting to show signs of CMT". She suggested that I see our pediatrician and that we go to see Dr. I at Children's. She wants an x-ray of his back so we have a starting point and wants me to keep his muscles as strong as I can. I left the appointment feeling defeated.
A looks at me and says "mommy do I have what the brothers have?" It took everything in me to not cry, to not scream at the top of my lungs "NO!!!!" Please God NO" I did what any mom would do and tickled him and said "do you mean you have a tickle monster coming to get you? This along with an ice cream cone seemed to distract him. Just when you think you can't take anymore, somehow, someway you find the strength to push through it, for the sake of your kids. "Be still and know that I am God." Psalm 46:10 this was the first time I heard the verse in my head.
So now we are taking each day as it comes....trying to find our way out of the storm. Praying for a cure and hoping that A's CMT does not progress.
Remember, "STAY STRONG, BELIEVE"
Momma Hayes
I took a break from blogging again just because I had to spend time with my boys and not worry about what I was going to be posting next. Especially, with Carter leaving in...oh 4 weeks! I actually wasn't going to blog all summer, but then I realized I started this blog to help others. To show them that no matter what up hill battle they face, what season they are in, they can get through it. I can't help them if I am not sharing our own experiences with this horrible, rotten no good disease!
4 weeks ago I was laying with my 5 year old and rubbing his back to put him to sleep. He was having leg pain....the same leg pain Carter and Zach get. He was crying and begging me to make it stop. Inside my heart was just breaking, knowing that this is most likely a sign of the disease starting in him. Then I felt it...a small curve in his upper back between his shoulder blades. My heart sank again. All I wanted was for my boo bear to escape the wrath of this horrible, horrible disease! I remember crying out to God that night why? Why does he have to suffer too? Why do all 3 of my precious, sweet boys have to deal with this "monster". (side note I am stealing the word monster from my sweet neighbor who used it to describe her cancer)
Honestly, the next day I pushed all my fears into the back of my mind. I told myself there is no way this is happening, it was just growing pains and I was tired. Then the pain happened again and again. So to ease my worries I made an appointment with our neurologist. I did not tell anyone, not even his brothers. My worse nightmare seems to be coming true. She said "it looks like this is early signs of CMT" She said "without doing an NCV (nerve conduction velocity) and a EMG(electromyogram) or DNA test she cannot say 100% that he has it". But she said from the testing she did she would venture to guess he has it. I remember her saying "his legs show some signs of weakness, he has a small curvature in his spine, just like Carter, pain in the legs, and then the rest is like the sound of the teachers in Charlie Brown, blah blah....Then she finished with " all this leads me to believe he is starting to show signs of CMT". She suggested that I see our pediatrician and that we go to see Dr. I at Children's. She wants an x-ray of his back so we have a starting point and wants me to keep his muscles as strong as I can. I left the appointment feeling defeated.
A looks at me and says "mommy do I have what the brothers have?" It took everything in me to not cry, to not scream at the top of my lungs "NO!!!!" Please God NO" I did what any mom would do and tickled him and said "do you mean you have a tickle monster coming to get you? This along with an ice cream cone seemed to distract him. Just when you think you can't take anymore, somehow, someway you find the strength to push through it, for the sake of your kids. "Be still and know that I am God." Psalm 46:10 this was the first time I heard the verse in my head.
So now we are taking each day as it comes....trying to find our way out of the storm. Praying for a cure and hoping that A's CMT does not progress.
Remember, "STAY STRONG, BELIEVE"
Momma 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
Wednesday, August 17, 2011
CMT Awareness Month and Cotton Patch Challenge
I am making this post short and sweet since I have sooo much to do right now.
Until Next Time.............Ride like the wind!
"Stay Strong, Believe"~Carter Hayes
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