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
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
Friday, March 21, 2014
Colorado Ski Trip- No regrets
Carter was fortunate enough to have one of his friends invite him to go skiing in Colorado over spring break. The Carson's wanted to help make a wish of Carter's come true. This wish was to go skiing. He made a bucket list and this is one of the items. They provided him with everything! I am still in awe of their overwhelming generosity and love for my child. We are truly blessed to have such an incredible family in our lives.
I know a lot of you are thinking what the heck were you thinking Michelle! Carter has CMT, he has breathing issues and you think he can go skiing? I heard it from everyone.... The air is too thin in Colorado for him, the cold will make it hard for him to breath, he is going to be in so much pain, he can't ski.....Sean and I talked about it and we decided we need to let him live his life to the fullest, since we just don't know when or how much the disease is going to progress. We cannot worry about the future, we have to live for today, the present. NO REGRETS! Plus this was on his list of things to do and I want him to be able to experience as much as he can now before his breathing does get worse. We knew if he was in too much pain or ran into any problems he would let them know. We also had complete faith in the Carson's, they knew about Carter's disease and we knew they would take great care of him.
I am not saying it was easy to let him go skiing, believe me it was hard for me. I prayed heavily and prayed over him before he left. But as the texts and pictures started flowing in, I knew we made the right decision. He was so happy, full of life and experiencing life!
Yes, he was in pain but he pushed through it just like with Cross Country and by the end of the week he was in little to no pain! He didn't have any problems with breathing either, maybe because he took his bipap with him. I believe our Heavenly Father was protecting him.
Psalm 91:4 He will cover you with His feathers, and under His wings you will find refuge. His faithfulness will be your armor and protection.
This trip was simply amazing for him. Memories that will last him lifetime. Honestly, he needed this, he needed to do something new. He picked up skiing so fast and by the end of the week he was doing jumps and almost did a 360! He took some good spills but got back up and kept going. It just goes to show you if you believe, you can achieve.
I am so proud of him! He continues to amaze me at his strength. He is setting such a great example to his brothers. Don't let your disease stand in your way. Always try something don't assume you can't do it. Never ever give up! Have faith and no regrets!
He is already talking about going skiing again! He loved it that much.
Until next time..............NO REGRETS!
Momma Hayes
"Stay Strong, Believe"
I know a lot of you are thinking what the heck were you thinking Michelle! Carter has CMT, he has breathing issues and you think he can go skiing? I heard it from everyone.... The air is too thin in Colorado for him, the cold will make it hard for him to breath, he is going to be in so much pain, he can't ski.....Sean and I talked about it and we decided we need to let him live his life to the fullest, since we just don't know when or how much the disease is going to progress. We cannot worry about the future, we have to live for today, the present. NO REGRETS! Plus this was on his list of things to do and I want him to be able to experience as much as he can now before his breathing does get worse. We knew if he was in too much pain or ran into any problems he would let them know. We also had complete faith in the Carson's, they knew about Carter's disease and we knew they would take great care of him.
I am not saying it was easy to let him go skiing, believe me it was hard for me. I prayed heavily and prayed over him before he left. But as the texts and pictures started flowing in, I knew we made the right decision. He was so happy, full of life and experiencing life!
Yes, he was in pain but he pushed through it just like with Cross Country and by the end of the week he was in little to no pain! He didn't have any problems with breathing either, maybe because he took his bipap with him. I believe our Heavenly Father was protecting him.
Psalm 91:4 He will cover you with His feathers, and under His wings you will find refuge. His faithfulness will be your armor and protection.
This trip was simply amazing for him. Memories that will last him lifetime. Honestly, he needed this, he needed to do something new. He picked up skiing so fast and by the end of the week he was doing jumps and almost did a 360! He took some good spills but got back up and kept going. It just goes to show you if you believe, you can achieve.
I am so proud of him! He continues to amaze me at his strength. He is setting such a great example to his brothers. Don't let your disease stand in your way. Always try something don't assume you can't do it. Never ever give up! Have faith and no regrets!
He is already talking about going skiing again! He loved it that much.
Until next time..............NO REGRETS!
Momma Hayes
"Stay Strong, Believe"
Wednesday, February 26, 2014
Senior Year....the bittersweat year
I truly cannot believe how fast time has gone by, it seems like yesterday when we were at our freshman orientation meeting. Now our days and nights are consumed with college paperwork, graduation things, and homework. My days lately are also consumed with a mixed bag of emotions, joy, hope, gratitude, and worse of all sadness and fear.
The only way to really sum it up is.... Senior year is a bittersweet year! You are happy, relieved and grateful when they get accepted into the college of their choice, but then sad they are leaving the nest. For me not only am I sad, I am scared. I know a lot of you may not understand this but I do know my CMT parents will totally get it. What happens if the disease progresses again? Will he be able to walk the campus? How will his pain affect him? What if his diaphragm gets worse? I can go on and on. My biggest fear is the disease will progress and he is all alone.
As a mother of a child with a neuromuscular disease, you never know when the "bad" days are going to happen. When the pain is so bad they simply cannot move out of the bed or chair they are in. When they are so tired they just can't keep walking or just need some rest. Who is going to rub his legs or make sure he is taking his medication or using his bipap machine? Make him hot cocoa when he is having a bad day?
So many questions and no answers.....Again, Momma Hayes needs to let go. I am not in control, He is. As Carter seems to be pointing out to me more and more. .I guess thinking about it now, I do know that he is never alone because he walks with God everyday. Our Heavenly Father will walk this new path with him, hold his hand through the bumpy road ahead and lay His hand on Carter when he needs strength.
Why do I worry so? Why do I doubt my faith sometimes? Why do I still loose sleep thinking did I teach him everything he needs to know? Well that's simple...NO! I know a lot of you are going to think I am even crazier than I already am but I have started a list of things to teach him or life lessons to share. Things NOT to do! I try to tick at least one off a day....yeah maybe one off every couple of days. Things like how to tie a tie, how to never mix whites and colors, how to balance a bank account and how not to make the same mistakes I did! Such a fine line to walk, you want them to have fun at college but you also don't want them make major mistakes.
I had coffee yesterday with one of my girlfriends and her son is a senior as well. We were talking about how it seems like yesterday that we were freshman moms, thinking oh we have 4 more years.....No problem that's plenty of time. How you blink an eye and they are 18 and leaving us. How so badly I want to rewind and hold onto every single moment. Tears start flowing as we reminisce and I think to myself I wish I would have cherished the time with him more. I can't go back.....
I am proud of the young man he has become, I am so very grateful to have him as my son. Does he know how very much I love him? Does he know that when he leaves I will be happy, proud and sad all at once. He is my guardian angel, that I have no doubt about. Carter, I love you more than you will ever know. I fall in love with you more and more as time goes by. I am so proud of the way you have handled everything in your life. You are inspiring. You teach me how to have courage. You make me want to be the best mom I can be. I LOVE YOU BUDDY!
Cherish you kids, don't let life get in the way. Laugh often, don't sweat the small stuff, cuddle, hug them, pray over and for them, tell them you love them, take lots of pictures, turn off the electronics and just talk to them, listen to them (quick to listen, slow to speak, slow to anger-James 1:19), live in the moment and make sure to tell them how proud of them you are.
Until next time......................"When I am afraid, I will trust in you" Psalm 56:3
The only way to really sum it up is.... Senior year is a bittersweet year! You are happy, relieved and grateful when they get accepted into the college of their choice, but then sad they are leaving the nest. For me not only am I sad, I am scared. I know a lot of you may not understand this but I do know my CMT parents will totally get it. What happens if the disease progresses again? Will he be able to walk the campus? How will his pain affect him? What if his diaphragm gets worse? I can go on and on. My biggest fear is the disease will progress and he is all alone.
As a mother of a child with a neuromuscular disease, you never know when the "bad" days are going to happen. When the pain is so bad they simply cannot move out of the bed or chair they are in. When they are so tired they just can't keep walking or just need some rest. Who is going to rub his legs or make sure he is taking his medication or using his bipap machine? Make him hot cocoa when he is having a bad day?
So many questions and no answers.....Again, Momma Hayes needs to let go. I am not in control, He is. As Carter seems to be pointing out to me more and more. .I guess thinking about it now, I do know that he is never alone because he walks with God everyday. Our Heavenly Father will walk this new path with him, hold his hand through the bumpy road ahead and lay His hand on Carter when he needs strength.
Why do I worry so? Why do I doubt my faith sometimes? Why do I still loose sleep thinking did I teach him everything he needs to know? Well that's simple...NO! I know a lot of you are going to think I am even crazier than I already am but I have started a list of things to teach him or life lessons to share. Things NOT to do! I try to tick at least one off a day....yeah maybe one off every couple of days. Things like how to tie a tie, how to never mix whites and colors, how to balance a bank account and how not to make the same mistakes I did! Such a fine line to walk, you want them to have fun at college but you also don't want them make major mistakes.
I had coffee yesterday with one of my girlfriends and her son is a senior as well. We were talking about how it seems like yesterday that we were freshman moms, thinking oh we have 4 more years.....No problem that's plenty of time. How you blink an eye and they are 18 and leaving us. How so badly I want to rewind and hold onto every single moment. Tears start flowing as we reminisce and I think to myself I wish I would have cherished the time with him more. I can't go back.....
I am proud of the young man he has become, I am so very grateful to have him as my son. Does he know how very much I love him? Does he know that when he leaves I will be happy, proud and sad all at once. He is my guardian angel, that I have no doubt about. Carter, I love you more than you will ever know. I fall in love with you more and more as time goes by. I am so proud of the way you have handled everything in your life. You are inspiring. You teach me how to have courage. You make me want to be the best mom I can be. I LOVE YOU BUDDY!
Cherish you kids, don't let life get in the way. Laugh often, don't sweat the small stuff, cuddle, hug them, pray over and for them, tell them you love them, take lots of pictures, turn off the electronics and just talk to them, listen to them (quick to listen, slow to speak, slow to anger-James 1:19), live in the moment and make sure to tell them how proud of them you are.
Until next time......................"When I am afraid, I will trust in you" Psalm 56:3
Wednesday, February 12, 2014
Progression-the words you never want to hear
I am taking a few steps backwards today due to some of my followers emailing me and asking what happened between September and now? What happened is PROGRESSION! The word none of us wants to hear when it is associated with a disease. The word progression is like a 4 letter word to me. I JUST DON'T WANT TO HEAR IT!
I touched on it briefly in the previous post. How in October Carter really started to complain about chest pain and like someone was sitting on his chest at times. He felt as though he could not expand his lungs. He would be in the hallway at school with a friend and felt like he couldn't get enough air, he would get lightheaded and feel dizzy. Pressure on his chest. It was happening pretty often. At the same time he was complaining that he would get sharp shooting pains in his chest. Then in November he started to take longer naps after school. Yes, I said nap....side note...People with CMT get fatigued more than us, because they have to exert more energy than us. At the same time he started to have more leg pain, arm pain and foot pain.
After numerous calls, the doctors suggested that we see a cardiologist to check his heart, since he has had chest pain on and off for a few years and it was getting worse. We went to the Cardio doc and he said nope it all checks out. Next stop, my CMT support group! Yah! I posed all of Carter's symptoms to them and low and behold I got a lot of responses back. All pointing me to a pulmonologist. Several of them told me to get him in ASAP, that his phrenic nerve (the nerve that runs from your spinal cord to your diaphragm) might be weakening. My first thought was what? CMT is not supposed to affect your breathing right? Wrong again! I found out that some forms of CMT can affect your breathing and your vocal cords!!!!!! Thank God for my support group and for them recommending a pulmonologist who knows CMT!!
We went to see Dr. V on November 20th and that's when I heard that word, the 4 letter word, PROGRESSION. As Carter and I sat in his office after the tests I remember Dr. V saying unfortunately, Carter's CMT is progressing into his diaphragm. His phrenic nerve is weakening. He is at about 1/2 of what he should be at for a guy his age on some of these tests. To be honest I don't remember how the whole conversation went, I was in shock. All I kept thinking was the diaphragm controls your breathing, your diaphragm controls your breathing, you need it to survive. Then I saw Carter's face and knew right then, I had to pull it together for the both of us. I knew he was scared and quite frankly so was I.
Dr. V told us Carter would benefit from a bipap machine at night. This would allow his diaphragm to rest at night and then he would reap the benefits during the day. He wouldn't feel so tired and hopefully he wouldn't have as many episodes of breathlessness during the day. He also explained that there really isn't anything we can do to make it stronger. Its not the muscle itself, its the nerve. One small problem, we found out the insurance would not cover it! At least not at this time since Carter passed one test. He failed all the others, but because he failed one....no machine!
Then the battle began with insurance companies. At the same time Carter's legs were hurting more and more. Next stop, the neurologist and orthopedic doctors in early December and they both said the same word PROGRESSION. Yep, that nasty word again. We were told that Carter needed surgery and he needed to get AFO's to assist him with walking. We all decided to get second, third, fourth opinions on surgery just to make sure it will benefit him, not hinder him. Carter has been fighting wearing braces since he was diagnosed, but now he has accepted that they will only help him. We are all hoping the braces will help him maneuver stairs better, no more falling down them, and not tripping as much. I hope!
All of this leads us to this point. We just did a sleep study on Saturday which should help us get the bipap machine. Cross your fingers. We went to see an Orthotist to get his braces molded. He will need to have ones for the daytime and ones for night. :( We have a surgery plan but we are still working out the details. Even with insurance the costs are adding up and Zach still has to go in to see if his is progessing. Ugh!!!! Enough on that......can't go there right now.
We are taking one day at a time, loving each other with all our might and fighting this disease with everything we have. IT WILL NOT WIN!
We are trusting in the Lord and we know He will get us through this.
"Trust in the Lord with all your heart and lean not on your understanding; in all your ways submit to Him and He will set your paths straight." Proverbs 3:5-6
Until Next Time...................Stay Calm & Enjoy Your Loved Ones
Momma Hayes
Remember "STAY STRONG, BELIEVE"~ Carter Hayes
I touched on it briefly in the previous post. How in October Carter really started to complain about chest pain and like someone was sitting on his chest at times. He felt as though he could not expand his lungs. He would be in the hallway at school with a friend and felt like he couldn't get enough air, he would get lightheaded and feel dizzy. Pressure on his chest. It was happening pretty often. At the same time he was complaining that he would get sharp shooting pains in his chest. Then in November he started to take longer naps after school. Yes, I said nap....side note...People with CMT get fatigued more than us, because they have to exert more energy than us. At the same time he started to have more leg pain, arm pain and foot pain.
After numerous calls, the doctors suggested that we see a cardiologist to check his heart, since he has had chest pain on and off for a few years and it was getting worse. We went to the Cardio doc and he said nope it all checks out. Next stop, my CMT support group! Yah! I posed all of Carter's symptoms to them and low and behold I got a lot of responses back. All pointing me to a pulmonologist. Several of them told me to get him in ASAP, that his phrenic nerve (the nerve that runs from your spinal cord to your diaphragm) might be weakening. My first thought was what? CMT is not supposed to affect your breathing right? Wrong again! I found out that some forms of CMT can affect your breathing and your vocal cords!!!!!! Thank God for my support group and for them recommending a pulmonologist who knows CMT!!
We went to see Dr. V on November 20th and that's when I heard that word, the 4 letter word, PROGRESSION. As Carter and I sat in his office after the tests I remember Dr. V saying unfortunately, Carter's CMT is progressing into his diaphragm. His phrenic nerve is weakening. He is at about 1/2 of what he should be at for a guy his age on some of these tests. To be honest I don't remember how the whole conversation went, I was in shock. All I kept thinking was the diaphragm controls your breathing, your diaphragm controls your breathing, you need it to survive. Then I saw Carter's face and knew right then, I had to pull it together for the both of us. I knew he was scared and quite frankly so was I.
Dr. V told us Carter would benefit from a bipap machine at night. This would allow his diaphragm to rest at night and then he would reap the benefits during the day. He wouldn't feel so tired and hopefully he wouldn't have as many episodes of breathlessness during the day. He also explained that there really isn't anything we can do to make it stronger. Its not the muscle itself, its the nerve. One small problem, we found out the insurance would not cover it! At least not at this time since Carter passed one test. He failed all the others, but because he failed one....no machine!
Then the battle began with insurance companies. At the same time Carter's legs were hurting more and more. Next stop, the neurologist and orthopedic doctors in early December and they both said the same word PROGRESSION. Yep, that nasty word again. We were told that Carter needed surgery and he needed to get AFO's to assist him with walking. We all decided to get second, third, fourth opinions on surgery just to make sure it will benefit him, not hinder him. Carter has been fighting wearing braces since he was diagnosed, but now he has accepted that they will only help him. We are all hoping the braces will help him maneuver stairs better, no more falling down them, and not tripping as much. I hope!
All of this leads us to this point. We just did a sleep study on Saturday which should help us get the bipap machine. Cross your fingers. We went to see an Orthotist to get his braces molded. He will need to have ones for the daytime and ones for night. :( We have a surgery plan but we are still working out the details. Even with insurance the costs are adding up and Zach still has to go in to see if his is progessing. Ugh!!!! Enough on that......can't go there right now.
We are taking one day at a time, loving each other with all our might and fighting this disease with everything we have. IT WILL NOT WIN!
We are trusting in the Lord and we know He will get us through this.
"Trust in the Lord with all your heart and lean not on your understanding; in all your ways submit to Him and He will set your paths straight." Proverbs 3:5-6
Until Next Time...................Stay Calm & Enjoy Your Loved Ones
Momma Hayes
Remember "STAY STRONG, BELIEVE"~ Carter Hayes
Monday, February 3, 2014
A Cup 1/2 Full
As I write this today my heart is aching, I just feel overwhelmingly sad today. Not sure why, I just do. I go through these bursts of crying, uncontrollable crying. I seem to be having these moments more and more lately. God and I have been working through some stuff lately. One of them is letting go and the other is not to worry about the future but to live in the present. A lot easier said than done. Right? I think a lot of this uneasiness has to do with the fact that Carter is leaving for college soon and I am scared. Maybe its because over these last 4 months his disease, this horrible rotten disease is taking over. It consumes me. It terrifies me. I want this horrible rotten no good disease to go away! I just want it to stop! Please God make it stop!
" Then you will call, and the Lord will answer; you will cry for help and He will say: Here I am." Isaiah 58:9
Rewind 4 months. October 2013 Carter really starts to complain of chest pain. He used to complain about it here and there, like when he ran cross country it would happen every now and then. But in late Oct it started to happen weekly. He said he felt like he couldn't get enough air, had sharp shooting pains in his chest, couldn't expand his chest and more fatigued. It was happening often enough that he felt like we needed to see someone about it. So, we began calling doctors and doing research. In November, after seeing a primary, a second opinion, a cardio, a neuro and a pulmonologist we found out the disease had progressed to his diaphragm. YEP you heard correct it spread to his diaphragm, you know that thing that you need to BREATH!!!! Now do you see why Momma Hayes is so distraught. Why I have my days when all I want to do is cry.
Psalm 56:3"When I am afraid, I will trust in you."
Fast forward to the present. Today I had to drive up to Marcus and give him a pain pill. Yesterday I had to watch my son endure pain, trouble breathing and almost pass out in Church. I had to literally put my hand on his back and make sure he did not topple over. As I placed my hand on Carter's back, tears flowing down my face, I asked God for his healing. I asked Him to protect Carter. To keep him strong. After church as we were talking with friends, he said "Mom you need to let go of the past and stop worrying about the future." "I am at peace with my disease and God will never give me more than I can handle." Once again, he looks at the glass 1/2 full, not 1/2 empty. When we get home he reminds me of the essay he wrote earlier in the week for a scholarship. In his conclusion he wrote:
"I have been handed a progressive, incurable disease but I see this disease as a gift in a way. This disease I believe is meant to help keep my strong, along with the people I care about. I believe it is meant to help guide me along the set path The Lord has planned for me and bring me closer to Him. I will always try my best, never give up, always be confident and competitive, never let anyone stand in my way or let anyone or anything bring me down or stop me. Life is a glass half full, I believe your spiritual life and God will fill the rest of the cup. You start off in this world with a cup half full and you decide if the cup ever gets filled to the top." Carter Hayes
Sometimes as a parent instead of you being the teacher, your kids end up teaching you a thing or two. As of lately, I hate to say it but I think Carter is teaching me more than I him. I used to be the one telling him God will never forsake you, He is faithful to you and His love is never ending. Stay strong, don't give up and fight! Now he reminds me of these things. He is reminding me to always, always look at the cup half full and not half empty. He is teaching me that my cup can be filled up to the top and overflowing if I decide to let God do so.
So as tears flow down my cheek today I am reminded that my cup is 1/2 full and I want to fill it up. That it's O.K. to have days like this BUT I need to let go and not worry about the future. Carter is strong and is at peace with his disease, so I need to be strong and at peace with his disease too.
Until Next Time........Momma Hayes
"Stay Strong, Believe" ~ Carter Hayes
" Then you will call, and the Lord will answer; you will cry for help and He will say: Here I am." Isaiah 58:9
Rewind 4 months. October 2013 Carter really starts to complain of chest pain. He used to complain about it here and there, like when he ran cross country it would happen every now and then. But in late Oct it started to happen weekly. He said he felt like he couldn't get enough air, had sharp shooting pains in his chest, couldn't expand his chest and more fatigued. It was happening often enough that he felt like we needed to see someone about it. So, we began calling doctors and doing research. In November, after seeing a primary, a second opinion, a cardio, a neuro and a pulmonologist we found out the disease had progressed to his diaphragm. YEP you heard correct it spread to his diaphragm, you know that thing that you need to BREATH!!!! Now do you see why Momma Hayes is so distraught. Why I have my days when all I want to do is cry.
Psalm 56:3"When I am afraid, I will trust in you."
Fast forward to the present. Today I had to drive up to Marcus and give him a pain pill. Yesterday I had to watch my son endure pain, trouble breathing and almost pass out in Church. I had to literally put my hand on his back and make sure he did not topple over. As I placed my hand on Carter's back, tears flowing down my face, I asked God for his healing. I asked Him to protect Carter. To keep him strong. After church as we were talking with friends, he said "Mom you need to let go of the past and stop worrying about the future." "I am at peace with my disease and God will never give me more than I can handle." Once again, he looks at the glass 1/2 full, not 1/2 empty. When we get home he reminds me of the essay he wrote earlier in the week for a scholarship. In his conclusion he wrote:
"I have been handed a progressive, incurable disease but I see this disease as a gift in a way. This disease I believe is meant to help keep my strong, along with the people I care about. I believe it is meant to help guide me along the set path The Lord has planned for me and bring me closer to Him. I will always try my best, never give up, always be confident and competitive, never let anyone stand in my way or let anyone or anything bring me down or stop me. Life is a glass half full, I believe your spiritual life and God will fill the rest of the cup. You start off in this world with a cup half full and you decide if the cup ever gets filled to the top." Carter Hayes
Sometimes as a parent instead of you being the teacher, your kids end up teaching you a thing or two. As of lately, I hate to say it but I think Carter is teaching me more than I him. I used to be the one telling him God will never forsake you, He is faithful to you and His love is never ending. Stay strong, don't give up and fight! Now he reminds me of these things. He is reminding me to always, always look at the cup half full and not half empty. He is teaching me that my cup can be filled up to the top and overflowing if I decide to let God do so.
So as tears flow down my cheek today I am reminded that my cup is 1/2 full and I want to fill it up. That it's O.K. to have days like this BUT I need to let go and not worry about the future. Carter is strong and is at peace with his disease, so I need to be strong and at peace with his disease too.
Until Next Time........Momma Hayes
"Stay Strong, Believe" ~ Carter Hayes
Sunday, September 8, 2013
CMT Awareness Month!
Its that time again folks! September is upon us which means a couple of things in this household.
1. Carter's Birthday! This year he will turn 18!
2. CMT AWARENESS MONTH!!!!!
So, what are we doing this year to raise awareness? Well, we wanted to do something different, some thing that could possibly make a big impact. We have done the birthday wish and he has done races to raise awareness, so now its time to try something new. Carter and I thought since he is going into the medical field and taking medical courses this year, what better way to raise awareness than at the source. The source being a medical professional.
We have learned not just through our experience, but from others that a majority of doctors and nurses have no idea what CMT is. Many of them have never heard of it, let alone seen it. And if they have.....they still don't know enough about it. What better way to raise awareness than in the medical field? Where it all starts. The field that needs to know about it in order to properly diagnose. The field that needs to know about it to help research.
Let's start a GRASS ROOTS MOVEMENT, A GRASS ROOTS AWARENESS!
We are starting small but hopefully we will be able grow!
What are we doing?
Carter will be taking into this Practicum Health Clinical Rotation class a brochure on CMT and a poster from CMTA. He is going to talk to his teacher, who is a surgeon, about CMT. He would like to present to the class and show them what CMT looks like. Then when he gets into his clinical rotation hospital he will talk to the docs he comes in contact with about CMT.
We are going to our local pediatrician offices to hang posters and pass out brochures and talk to them about what CMT is and what the signs are. Our pediatrician is on board with this, so I know she will help raise awareness! Our dentist, our eye doc, our physical therapist, any doctor in our area that will listen.
Carter and I are challenging you to do the same in your area. Talk to any and all medical professionals you come in contact with about Charcot Marie Tooth. Give them a pamphlet on it, make a flyer, give them bracelets and tell them the signs and where to find more info on it.
MAKE A DIFFERENCE!
START A MOVEMENT-A MOVEMENT TO FIND A CURE ONE STEP AT A TIME!
Until next time....................Speak up and make a difference!
Momma Hayes & Carter Hayes ~ "Stay Strong, Believe"
1. Carter's Birthday! This year he will turn 18!
2. CMT AWARENESS MONTH!!!!!
So, what are we doing this year to raise awareness? Well, we wanted to do something different, some thing that could possibly make a big impact. We have done the birthday wish and he has done races to raise awareness, so now its time to try something new. Carter and I thought since he is going into the medical field and taking medical courses this year, what better way to raise awareness than at the source. The source being a medical professional.
We have learned not just through our experience, but from others that a majority of doctors and nurses have no idea what CMT is. Many of them have never heard of it, let alone seen it. And if they have.....they still don't know enough about it. What better way to raise awareness than in the medical field? Where it all starts. The field that needs to know about it in order to properly diagnose. The field that needs to know about it to help research.
Let's start a GRASS ROOTS MOVEMENT, A GRASS ROOTS AWARENESS!
We are starting small but hopefully we will be able grow!
What are we doing?
Carter will be taking into this Practicum Health Clinical Rotation class a brochure on CMT and a poster from CMTA. He is going to talk to his teacher, who is a surgeon, about CMT. He would like to present to the class and show them what CMT looks like. Then when he gets into his clinical rotation hospital he will talk to the docs he comes in contact with about CMT.
We are going to our local pediatrician offices to hang posters and pass out brochures and talk to them about what CMT is and what the signs are. Our pediatrician is on board with this, so I know she will help raise awareness! Our dentist, our eye doc, our physical therapist, any doctor in our area that will listen.
Carter and I are challenging you to do the same in your area. Talk to any and all medical professionals you come in contact with about Charcot Marie Tooth. Give them a pamphlet on it, make a flyer, give them bracelets and tell them the signs and where to find more info on it.
MAKE A DIFFERENCE!
START A MOVEMENT-A MOVEMENT TO FIND A CURE ONE STEP AT A TIME!
Until next time....................Speak up and make a difference!
Momma Hayes & Carter Hayes ~ "Stay Strong, Believe"
Tuesday, September 3, 2013
UT Southwestern Update
Just wanted to give an update on our visit to UT Southwestern last month. Carter and I arrived at UT Southwestern on August 6th bright and early at 7 a.m. We finally got to meet Dr. Nations and her wonderful staff. I believe we have found a group of Docs who not only know about CMT but actually care and have a great bedside manner. So, for all my Dallas or Texas peeps go check out Dr. Sharon Nations or Dr. Trevedi at UT Southwestern in Dallas.
We of course had to go through all the standard questions and a complete physical check up all over again to compare to what Scottish Rite had. Afterwards we were sent to get an EMG and a NCV done. Real quick for those of you who are new I will explain what a EMG and NCV are. EMG stands for electromyography which measure the electrical activity going through the muscle when it is at rest and when it contracts. A NCV stands for nerve conduction velocity which tests to see how fast electrical signals travel through a nerve. It is not fun..... Carter was not to happy about this. He was already in pain just from the exam and showing them how he walks and so forth. But as usual, he didn't complain and made it through it. Dr. Trivedi gave the EMG and NCV, so we were able to meet her as well and LOVED her. Mom on the other hand had a harder time. Now matter how you slice it, it just does not get any easier seeing your child go through these tests.
After all the testing we met with both Dr. Nations and Dr. Trivedi and they both concluded that he has CMT most likely CMT 2, just like what Scottish Rite said. They said he has progressed since the last test in 2010. Which I already knew to be honest. Since he is in a lot more pain and can't sleep at night due to the pain, they prescribed him Gabapentin. I was very apprehensive at first to give him a pain pill but they assured me it was non habit forming and has little side effects. Carter has been on it for almost a month now and so far so good. It has really helped him get a more restful night of sleep. The only downside is the fatigue it causes, toppled with the fatigue from just having CMT makes for one tired Carter!
Overall, the visit was great and we were very happy with her plan. We are starting physical therapy again to see if there is anyway to help lengthen the Achilles without surgery. She is not optimistic about it, so we are also looking for an Orthopedic Surgeon to evaluate his situation. If anyone knows of one in the Dallas area send me a message please!
Until next time......................"Stay Strong, Believe"
Momma Hayes over and out!
We of course had to go through all the standard questions and a complete physical check up all over again to compare to what Scottish Rite had. Afterwards we were sent to get an EMG and a NCV done. Real quick for those of you who are new I will explain what a EMG and NCV are. EMG stands for electromyography which measure the electrical activity going through the muscle when it is at rest and when it contracts. A NCV stands for nerve conduction velocity which tests to see how fast electrical signals travel through a nerve. It is not fun..... Carter was not to happy about this. He was already in pain just from the exam and showing them how he walks and so forth. But as usual, he didn't complain and made it through it. Dr. Trivedi gave the EMG and NCV, so we were able to meet her as well and LOVED her. Mom on the other hand had a harder time. Now matter how you slice it, it just does not get any easier seeing your child go through these tests.
After all the testing we met with both Dr. Nations and Dr. Trivedi and they both concluded that he has CMT most likely CMT 2, just like what Scottish Rite said. They said he has progressed since the last test in 2010. Which I already knew to be honest. Since he is in a lot more pain and can't sleep at night due to the pain, they prescribed him Gabapentin. I was very apprehensive at first to give him a pain pill but they assured me it was non habit forming and has little side effects. Carter has been on it for almost a month now and so far so good. It has really helped him get a more restful night of sleep. The only downside is the fatigue it causes, toppled with the fatigue from just having CMT makes for one tired Carter!
Overall, the visit was great and we were very happy with her plan. We are starting physical therapy again to see if there is anyway to help lengthen the Achilles without surgery. She is not optimistic about it, so we are also looking for an Orthopedic Surgeon to evaluate his situation. If anyone knows of one in the Dallas area send me a message please!
Until next time......................"Stay Strong, Believe"
Momma Hayes over and out!
Wednesday, July 31, 2013
For nothing is impossible with GOD- Luke 1:37
First let me start out by say a gigantic CONGRATULATIONS to Carter! He has been accepted to the UNIVERSITY OF KANSAS! This was his number 1 choice. He did really like Arkansas but after he got the acceptance from KU there was no doubt where he was going. He said I just know this is where I am supposed to be. I am so proud of him and super excited about his journey.
The one thing we have all learned in this journey of ours is nothing is impossible with God! If you don't believe that I am telling ya, you really should. We are a perfect example of it. Two of my boys were diagnosed with CMT within a month of each other and then 7 months later boom, my mom diagnosed with stage 4 carcinoid cancer. Did any of us give up? NO, not for a minute, because when you have faith you know without a doubt HE will get you through even your darkest moments. Don't get me wrong there were times when I was struggling with it all but I always came around. He did get us through just look at what has happened, Carter is now accepted into his dream school, Zach is getting ready to play football and my mom has made it past the 1 year mark and plugging along.
To be honest when Carter was diagnosed with CMT and his dreams were shattered I really did not know what to expect. I knew he was strong and faithful, much more than myself at that time, but I really worried about his future. I saw how he struggled with his new diagnosis and school. His sophomore year really took a toll on him but he never lost faith and never gave up. He stayed strong and persevered. His dedication and hard work paid off! He truly deserves his acceptance letters and any school is lucky to have him! But he is now officially a JAYHAWK!!!
For all you CMTer's out there who are still in high school or middle school DO NOT GIVE UP!!!! You can achieve if you believe. You will have to work hard, push through pain and sometimes fall but it will all be worth it. Any school would be lucky to have any of you, each of you have something special to offer. Just remember..........................."STAY STRONG, BELIEVE"
ROCK CHALK JAYHAWK-
MOMMA HAYES OR MOMMA JAYHAWK? :)
The one thing we have all learned in this journey of ours is nothing is impossible with God! If you don't believe that I am telling ya, you really should. We are a perfect example of it. Two of my boys were diagnosed with CMT within a month of each other and then 7 months later boom, my mom diagnosed with stage 4 carcinoid cancer. Did any of us give up? NO, not for a minute, because when you have faith you know without a doubt HE will get you through even your darkest moments. Don't get me wrong there were times when I was struggling with it all but I always came around. He did get us through just look at what has happened, Carter is now accepted into his dream school, Zach is getting ready to play football and my mom has made it past the 1 year mark and plugging along.
To be honest when Carter was diagnosed with CMT and his dreams were shattered I really did not know what to expect. I knew he was strong and faithful, much more than myself at that time, but I really worried about his future. I saw how he struggled with his new diagnosis and school. His sophomore year really took a toll on him but he never lost faith and never gave up. He stayed strong and persevered. His dedication and hard work paid off! He truly deserves his acceptance letters and any school is lucky to have him! But he is now officially a JAYHAWK!!!
For all you CMTer's out there who are still in high school or middle school DO NOT GIVE UP!!!! You can achieve if you believe. You will have to work hard, push through pain and sometimes fall but it will all be worth it. Any school would be lucky to have any of you, each of you have something special to offer. Just remember..........................."STAY STRONG, BELIEVE"
ROCK CHALK JAYHAWK-
MOMMA HAYES OR MOMMA JAYHAWK? :)
Saturday, July 6, 2013
Trust in the LORD with ALL your heart!
The past couple of weeks I have had some challenges appear and some decisions to make. In fact, as I am writing this I am dealing with one of those challenges now. The challenge of putting the words down and making them real. The words "I will not be able to ever go into the military." I now know this will never happen. See, a part of me always dreamt of it still happening, so I really held onto the thought in the back of my mind. I know, I know it sounds nuts with my CMT, but I thought maybe if I get the surgery they'll let me in. Well, now I know they will not. This all started when my mom received a call from a Navy Recruiter last week. Instead of saying he's not interested anymore, she said she just had to know without a doubt that I could not be in the military. She wanted to know once and for all if I could join or not. So she could help me let it go once and for all.
She told the guy everything that had happened, explained CMT, possible surgery, just everything! She laid it all out so there would be no misconceptions on any ones part. He of course had never heard of Charcot Marie Tooth disease and of course assumed it had to do with the teeth! Ugh! Long story short he told her there was a 95% chance that I would not pass the physical even after surgery. Plus, because it is a progressive disease with no cure that alone would most likely disqualify me.
Which brings me to the conversation of were my mom told me what the Navy Recruiter said and me coming to the final conclusion that the military is not in my future. It is NOT what HE has planned for me. Trust in the LORD with all your heart! Now I am moving forward completely and letting it finally go. Challenge number 1 completed!
Trust in the LORD with ALL your heart. Every time I hit the submit button on a college application I say " It's all in HIS hands". In fact, when I was filling out an application the other day, I realized the school was not for me. I was looking at this school because of someone else, not for me. I made the decision not to apply and I feel really good about it. I know HE will lead me to the right school for me and on the correct path for my future. Decision made!
My second challenge and decision are hand in hand. Due to pain in my legs lately I have not been able to run with the Cross Country team as much as I would like. I have had to cut it back to one or two days and sometimes not at all. So this has set me back in the running portion of my tri training. I have come to realize that there are just going to be days when I just have to rest. Then when I finally started to feel better what happens? I go out with the CC guys for an all out air soft war game and get poison ivy. Oh yeah! Not just a little I am talking major! It just sucks! I have it really bad in between my fingers on my right hand. Thank GOD I am left handed. After 5 days of pure pain and itching I went to the Dr. to get medicine since the calamine lotion and other stuff just wasn't cutting it. Now I am at least able to sleep at night. Challenge & decision completed.
Today my swim coach kicked my #$#! He has been out of town on vaca and I have been busy visiting colleges, so this is the first time in 3 weeks or so that I have had training. I was supposed to train while he was gone but between the pain in my legs and college visits I just didn't swim. So once again I paid the price. Mental note to self don't ever take swimming lightly and don't ever underestimate the power of Coach Will!
Some days are harder than others and you just have to remember to stay strong and believe. You will have bad days when your body just won't let you do what you want but DO NOT beat yourself up about it! Sometimes dreams are squashed but then new ones are created. Sometimes you feel like your peddling up hill the whole day but TRUST IN THE LORD WITH ALL YOUR HEART and the downward incline will happen.
Until Next Time............I think you all know what I am going to say......
Carter
"Stay Strong, Believe"
p.s. I leave for Arkansas next week with my mom and NANA! Catch ya all on the flip side!
She told the guy everything that had happened, explained CMT, possible surgery, just everything! She laid it all out so there would be no misconceptions on any ones part. He of course had never heard of Charcot Marie Tooth disease and of course assumed it had to do with the teeth! Ugh! Long story short he told her there was a 95% chance that I would not pass the physical even after surgery. Plus, because it is a progressive disease with no cure that alone would most likely disqualify me.
Which brings me to the conversation of were my mom told me what the Navy Recruiter said and me coming to the final conclusion that the military is not in my future. It is NOT what HE has planned for me. Trust in the LORD with all your heart! Now I am moving forward completely and letting it finally go. Challenge number 1 completed!
Trust in the LORD with ALL your heart. Every time I hit the submit button on a college application I say " It's all in HIS hands". In fact, when I was filling out an application the other day, I realized the school was not for me. I was looking at this school because of someone else, not for me. I made the decision not to apply and I feel really good about it. I know HE will lead me to the right school for me and on the correct path for my future. Decision made!
My second challenge and decision are hand in hand. Due to pain in my legs lately I have not been able to run with the Cross Country team as much as I would like. I have had to cut it back to one or two days and sometimes not at all. So this has set me back in the running portion of my tri training. I have come to realize that there are just going to be days when I just have to rest. Then when I finally started to feel better what happens? I go out with the CC guys for an all out air soft war game and get poison ivy. Oh yeah! Not just a little I am talking major! It just sucks! I have it really bad in between my fingers on my right hand. Thank GOD I am left handed. After 5 days of pure pain and itching I went to the Dr. to get medicine since the calamine lotion and other stuff just wasn't cutting it. Now I am at least able to sleep at night. Challenge & decision completed.
Today my swim coach kicked my #$#! He has been out of town on vaca and I have been busy visiting colleges, so this is the first time in 3 weeks or so that I have had training. I was supposed to train while he was gone but between the pain in my legs and college visits I just didn't swim. So once again I paid the price. Mental note to self don't ever take swimming lightly and don't ever underestimate the power of Coach Will!
Some days are harder than others and you just have to remember to stay strong and believe. You will have bad days when your body just won't let you do what you want but DO NOT beat yourself up about it! Sometimes dreams are squashed but then new ones are created. Sometimes you feel like your peddling up hill the whole day but TRUST IN THE LORD WITH ALL YOUR HEART and the downward incline will happen.
Until Next Time............I think you all know what I am going to say......
Carter
"Stay Strong, Believe"
p.s. I leave for Arkansas next week with my mom and NANA! Catch ya all on the flip side!
Subscribe to:
Posts (Atom)