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

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

Charcot Marie Tooth Association Is Making Carter The October Youth Spotlight!

We just got the official word that Carter will be the Youth Spotlight on the CMTA's Youth Facebook page, for October!  He is so excited and so am I!  I know they are excited to have him too.  This is a great opportunity for Carter to tell and show other youths to stay strong, positive and believe.  His motto. Don't give up! I was told that a PR person will be contacting us soon to go over everything.  CAN YOU SAY AMAZING?

My head is still spinning from everything that is going on in our lives right now, but I know now more than ever that this is our calling.  He and I are supposed to shed  light on the Charcot Marie Tooth Disease and make more Doctors, nurses, moms, dads, teachers, communities,etc..aware of CMT  and know the signs.  So many have never heard of it or if they have, they don't know much about it.  Remember, knowledge is power and power is knowing.  THE TIME IS NOW....TIME TO TELL EVERYONE ABOUT CMT!

So go check Carter out on the CMTA's Youth Facebook page in October https://www.facebook.com/#!/CMTAssociation?sk=app_6009294086.  I will of course remind you all when we get closer to October but just couldn't wait to share the great news. 

Until Next Time..........You Can Achieve If You Believe!

Stay Strong, Believe~Carter Hayes