Rollercoaster of Emotions

Today was just a day full of emotions.  I can truly say today I felt like I was on a roller coaster, a roller coaster of emotions.  I woke up exhausted but was in a good mood.  Made the kids strawberry banana smoothies and blueberry muffins for breakfast. Yum!  Carter said he was feeling pretty good and everyone seemed to be in a great mood.  Then 8 o'clock rolls around and the phone starts ringing and reality hits.  Doctor's calling, hospitals calling and it just keeps on coming.  After the first call about scheduling his EMG I was mad, mad because it is taking so long to get all this done, mad that no one else seems to feel the urgency I do.  I guess just mad that I simply cannot do anything.  I have no control and for a control freak that is hard to deal with.  Yes, Sean, I did admit to being a control freak.

  I wish we could just get all the tests done at once, in one place and not have to wait.  The waiting is the hardest part.  I know there are other patients but don't they understand this is Carter, this is MY SON, and I want answers!  I need to know what type of CMT he has and how bad it is and how bad do they anticipate it getting?  Should I be letting him run everyday?  Their answer "If Carter feels like he can do it and isn't in pain let him."  Huh? 

1. The kid doesn't feel pain at least not like a normal person.
2. He is a fifteen yr old and thinks he is invincible.
3. He doesn't like to be a quitter.

Ugh! Just wish there was a way to have a direct line to one doctor who would be able to answer all my questions.  Instead, I have too many doctors for different reasons and everyone decided to take a vaca over the fourth of July week!  Don't they realize they have a crazy mom who can't sleep because she spends all her free time, whatever that is, searching for info on CMT.  Oh and my other free time searching for right supra clavicle lymph node.  Oh and what does a high level of immature white cell count mean?  Seriously, I am not a Dr. nor do I play one on t.v.! I stole that line from Sean.  I guess I will find out all this on Monday, when we go to the Oncologist. 

By the afternoon my mood changed from anger to fear and sadness.  Fear of what the future holds, fear that my son may never drive, fear that he won't be able to care for himself, fear that he won't be able to feel the sand beneath his toes soon.  Sadness, sadness because I wish I would have done more with him.  Sad because I kept saying there is always tomorrow and now I don't know that for sure. Sad because there are so many things I wanted to do with him and his brothers and now I feel like time is running out.  Just utter sadness and sadness so deep it just consumes me.  Is this grief I am going through?  Can you grieve over what could happen to you child and all the things he or she may loose out on?  Is this possible? 

I guess being told your child has a disease in a way is a test.  A test of what you are really made of.  Are you a strong person?  Can you hold it together when all you want to do is loose it?  Can you take the lemon and make outstanding lemonade?  I guess only time will tell.  For right now, the anger is pushing me to be the strong person, to hold it together and only let go when I am up late at night or in the shower.  For now, I must be strong for Carter, Sean, Zach,  Ayden and Regan.  So, for now the roller coaster continues.....

May God Bless you all!  Much Love Michelle

And so the journey begins......

Hello Everyone!
Before June 27th, 2011 I had never heard of Charcot Marie Tooth Disease.  Come to find out I was not the only one.  So many people do not know about this horrible disease that affects just as many as MS.  I remember the Dr.  saying the name, Charcot Marie Tooth Disease and I must have asked him 3-4 times what?  Can you say that again? He said "Don't worry I will write it down for you so you can do research.  I felt some relief because now there was a name for what my son was going through but there was also a deep sadness for what he was about to go through.  How do tell a 15 1/2 year old who is on the Cross Country team for his high school, you may not be able to compete.  How do I tell him his dreams of being a Navy Seal since he was six are probably not realistic anymore?  How do I tell my vibrant, outgoing, driven, funny teenager that his world is about to be turned upside down?  Well I don't, because he is a fighter, he is driven and motivated and so am I. We are going to fight this thing together as a family unit and help spread the word about CMT.
CMT is one of the most common inherited neurological disorders affecting every 1 in 2,500 people.  It affects both sensory and motor nerves.  The motor nerves cause muscles to contract and control voluntary muscle activity such as speaking, walking, breathing, and swallowing.  This is a progressive disease and eventually can lead to weakness and muscle atrophy.  THERE IS NO CURE FOR CMT!

Carter's symptoms as of now are high arch, hammer toes, numbness in all toes, weakening muscles in legs and is showing some mild signs in his hands.  He is unable to bend his ankle, cannot walk on his heels and walks on his toes.  He is not in too much pain right now; just the numbness is bothering him.  We are still in the beginning stage of all the testing.  There are 40 types of CMT and we will hopefully find out soon what type he has.  We are going in next week for an EMG, a test that will help us understand how the muscle is weakening.  We will also be going in for a nerve biopsy within the next couple of weeks as well.
We have decided to look into acupuncture and physical therapy for him to help with the muscle weakness.  We have learned that swimming and cycling are best for him.  He is already an avid cyclist, so this works well.  He really wants to do a triathlon but we will see.  He said he definitely wants to do a bike race by the end of the summer.  One day at a time right now....

I know a lot of you are wondering how he is taking all of this....Well let’s just say this.
Cater said to me as we walked out of the Doctors office that day "Don't worry mom, Jesus is walking next to me, he is my best friend and this is the path I am supposed to be on."  "He won't lead me the wrong way."  "This is my challenge and I will be o.k."  I just squeezed his hand and smiled.  Carter's Challenge was born that day.

Love to All,

Michelle, Sean, Carter, Zachary and Ayden xoxo

P.S. PLEASE FORWARD IF YOU WANT! SPREAD THE WORD LETS FIND A CURE!