Philippians 4:13 I can do everything through him who gives me strength.

These last few weeks have been utterly overwhelming.  At times it just seems as though the upward battle is getting steeper and steeper and we will never reach the top.  Finding strength to get through the day is difficult at times, sometimes I just want to curl up in bed and cry but I can't.  I can honestly say the only things getting me through each day is my faith, my family and a incrediable support group of friends.  Thank God for my CMT friends, whom I met through Facebook, of all things. They truly get it, because of course they have been through it or are going through it.


As I said these last few weeks have been difficult to say the least.  Both boys are struggling not only with school but with their physical limitations.  Zach all of a sudden is showing more signs.  Halloween he went out trick or treating with his friends and of course came home in horrible pain.  He just did not want to tell his friends he couldn't go any further, so he indured the pain.  When he got home he was in tears because his feet and legs were killing him.  He was just exhausted.  Then the next day they had a Diabetes Walk at school and instead of not participating....he walked!  Ugh!!!! He said he just didn't want to be different.  Which I understand but he came home and could barely walk through the front door.  Again, horrible pain in legs and feet.  So we soaked in Epson Salt and warm water and relaxed in the recliner.  Oh how I wish I could make the pain go away.  I am so glad I have my ARD meeting coming up with his school.  I really need some help with making sure he does not feel different yet he isn't causing himself any discomfort.


As for Carter, rough week to say the least.  He received his night braces on Tuesday and lets just say it hasn't been fun.  First night was really rough, no sleep.  For those of you who are not familiar with them let me just say this.  Once you have them on, there is no getting up.  They are not the most comfortable either....to say the least.   First night was really rough, no sleep.  He was in pain, so I loosened them up but he also had a hard time getting comfortable, he sleeps on his side. So, we came up with a game plan, if he needs to get up or if he is in to much pain he is to call me.  So we keep his cell phone charging on his nightstand and he calls me on the home phone if he needs me.  First night, like I said was rough.  He even asked if he could sleep with just one brace.  Second night a little better.  We adjusted it a couple of times but then at 1 a.m. phone rings, he is in a lot of pain in his achiles heal.  So off went the braces.  He needs sleep for school for crying out loud!  Carter did find some humor in his braces last night.  He was watching Forest Gump over the weekend , remember Forest had leg braces too!  So he made some jokes last night when I put him to bed. Like "Run Forest, run."  Which reminded me that we all need to keep a sense of humor in all this madness.


I told the boys we just all need to keep the faith and stay strong.  Strength will come from our faith and from each other.  I told Carter remember when you were first diagnosed, you said "I am not going to let this disease control me."  "I am going to stay strong and believe."  You need to remember that time and find that inner strength again.  WE ALL DO! 


Until Next Time.....Keep the faith!


"Stay Strong, Believe"~Carter Hayes

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"