My name is Virginia. I have Charcot-Marie Tooth disorder. My vision is to spread awareness about this funny name disorder that is so common that not everyone has heard off. And since it is inherited, yes... My kids have it too. Hope you follow my journey.
" Mom, why does all bad things happen to me?" Words that I will never forget and will forever touch me deep down in my soul. How do you answer that question? How do you tell your 14 year old that the reason why he has reverse scoliosis, and leg length discrepancy is because you passed down a gene that will impact every moment of his life. How do you prepare him and yourself to show him that he is as normal as any kid his age? How do you prepare your child for battle? A battle where the only ones are he and his CMT. Basically a battle with himself.
Sitting in the car, getting ready to leave the doctor's office. And my son with tears in his eyes asked me that question. I felt and I'm also sure I looked like a bullet train had hit me. Never expecting that in a million years. What felt like a life time to answer him and also trying to take into account that my two other kids where there to listen to my answer. I knew I had to be strong for him and his siblings. I pushed down my tears and pulled up my anger.. My anger toward this disorder. I looked at him directly into his eyes. "Marko, I don't know why. I can't answer why, but I can tell you that you are not alone. I will be there every step of the way. We will do this together!" "You are stronger than you think you are, you where given this challenge for a reason and you will take it and you will run with it." I don't think he had seen such determination on my face and in my eyes before, but he wiped his tears and with a very strong voice he said "Ok Mom, I can do this." I don't know how I did it but I was able to hold myself together until we got home and with the excuse that I needed to get some phone calls done. I locked myself in the bedroom and cried until my tears ran dry. For months I felt so guilty. Blaming myself for passing this to my kids. Yes, my kids. You see 2 out of my 3 kids have CMT1a. It runs on my dad's side of the family. And I jokingly say to people, "Why couldn't I have inherited a million dollars, instead of this gene." But it is what it is.
As for my kids, I do all that I can to show my kids that OUR limitations are in our heads not our bodies. That it might take us a few extra minutes to do things or that it's ok to ask for help when it is needed. I don't treat my kids like there is something wrong with them, instead I push. I push because life is always pushing us. Because I know what they are capable of and I can see them thriving in a world where people will look at them different, because in my eyes they are perfect just the way they are. And I will continue seeing them as a whole. I see the strength in them and just with any child you feed their dreams and always encourage them to move forward. My kids are teaching me to be a role model. I do the things I do because of them. The real truth is, they are MY heroes. My reason for fighting, for educating and for spreading awareness.
One day I got a call from Jeff Smith. He is the Southwest District Manager for Allard USA. He said he got the number from the CMTA (Charcot-Marie-Tooth Association). No, They don't share people's private information. You see, my number and email is readily available for anyone. Because I help co-facilitate a support group for the CMTA in Las Vegas, NV.
Let me go back a little. I have CMT and two out of three of my kids have CMT. Because of the progression of CMT. Most people develop a condition called Foot drop. Which is something that makes it hard to walk normal and of course even run. We tend to pick up our legs at the knee as to avoid tripping on our feet. Because of my foot drop, my neurologist had suggested leg braces and I was fitted for the plastic braces. The plastic braces made it even harder for ME to walk. So after a month, those plastic braces ended up in the closet. I figured, I walked better with out them and ended using ACE wraps for my ankles. But I would easily tired out after a few minutes of walking. But it was better than the discomfort and pain I got from the plastic AFOs (Ankle foot orthotics).
Then a year and some months later came the call. I met with Jeff Smith and I tried the Allard Toe offs in a coffee shop not to far from my house. And I could not stop smiling. I got my prescription for my new braces and there I was two months later walking/running my 1st 5k. Ohhhh, what a feeling!!!!
I encourage anyone suffering from Foot Drop to look into this braces it will change your life as it has change my life. WWW.ALLARDUSA.COM
Here is a video. To the untrained eye, my gait might look normal but take it to an Orthotists and they can point all the difference. Plus I don't get tire of walking, jogging that easily. Enjoy.
Yes, I know it's been a while. Unfortunately I have had some family issues that have needed my attention and With the kids being on summer break, well... I don't get a lot done. At least not the things I should be doing. But, I wouldn't change anything at all.
Along with family issues, kids and an addition to the family. I am also busy adding other stuff to my daily schedule. Lets just say there is never a dull moment in my life.
I started strength training and I needed a trainer to show me the ropes. I have to admit that walking into a gym is intimidating for me. It's only been two weeks and still get sweaty palms at the thought of walking into the gym. I'm guessing its all those machines. And people staring at me as I try for 20 minutes to get the hang of it. But I'm committed to working out and increasing my endurance, stamina and motivate others to work out. Even if its walking a mile. Besides who doesn't look cute in work out clothe? I personally like the comfort.
I have also become An Ambassador for Energybits.com. I have to say, I need all the b12 I can inhale. And it's organic algae. It has spirulina so it's absorbed quicker. I usually take it 15-20 minutes before a work out. And I haven't been needing my afternoon coffee. So you will see a new badge on my blog and if you want to use energy bits... Use the code "embrace" at check out for your 15% off your order.
It safe for pregnant women and kids too.
Our new addition
Don't forget to get your 15% discount at check out "embrace"
So, this was my spiritual enlightenment from last night.
We tend to excuse people's negative and destructive behaviors. How many times have you heard some one say " Oh, she's unreliable, that's just the way she is.". Or He is so angry and negative all the time. That's how he has been all the time" Fill your blank in there. He/she is so________. (Lazy, controlling, irresponsible, ect.) He/She will never change. That is WHO they are."
When we make excuses and accept others negative behavior, we are not holding them at their highest. Thinking they will never change. We hold them at their lowest because it is easier to excuse them than to have great expectations of them. Why? Because we will be face disappointment. And disappointment hurts.
And as we excuse others negative behavior, we also tend to do it with ourselves. That negative voice in our heads. "I'm too this or too that" And again we don't give ourselves room for growth or change.
Even our society does it with rapist, child molesters, domestic abuse and killers. We excuse their behavior because of a negative pass/childhood. News flash!!!!! A lot of us where raise in dysfunctional homes, Abused in every way thinkable. That doesn't give me or anyone an excuse to do it to others. It's not a free pass.
Even Corporations, businesses politicians and our Government make excuses.
I haven't gotten to an easy fix of the problem, but I'm working on it. My best bet is to call them out on it and yes, it could be done in a loving way. Give ourselves the right to no longer accept OUR excuses for other's negative behavior, specially when "IT" invades OUR boundaries and well being or the well being of those we love. THE VALUE WE PUT ON A PERSON, GREATLY AFFECTS THE WAY THEY VALUE THEMSELVES.
So, yesterday I decided to wear my new Ypsilons braces and with that wear shorts. The weather in Vegas has been in the 80's and my GOD, I would be nuts not take the opportunity to wear shorts. As I was strolling along all day with my braces, I received plenty of stares. Some with a smile and some with an uncomfortable look. So that is why I decided to write this piece. And let people know that it's not polite to stare and/or point.
Why are people so uncomfortable staring at someone with leg braces? Instead, ask questions. Find out what happen and/or why. Questions don't bother me as much as those up and down stares. You are missing out on some great stories. And meeting people like the mom who has MS, or the guy with a missing leg, the kid next door in a wheelchair. You are missing out on finding what makes them strong and what motivates them.Your assumptions, believes, stares, judgements are hurting YOU not me. You are and will miss out on meeting some amazing people. I realize that some of the happiest, genuine people I have had the pleasure to meet and work with are those who are challenge. Why? Because they have learned to love and accept themselves. They have made peace with their past and have embraces whatever it is that makes them different.
My disability doesn't bother me, I'm not sorry. I'm only sorry it bothers you. So please don't tell me that you feel sorry!!! Why are you sorry??? Because my disability is more visible than yours? We all have disabilities. Some are physical, some are mental, some are emotional and some, some are social. What I mean with having a social disability is the problem people have with others. Whether is labeling someone disable and /or putting people in social, ethical, religious categories.
With that said. Enjoy your day and give yourself a chance to be inspired by those who are challenged. You just never know what you will learn. Be open to the opportunity to make a new friend.
Just wanted to apologize for being away this long. I have been working on a few things that have required my full attention. It seems like things are falling right into place and I am excited about all that is to come.
I will be doing my best to represent everyone that is affected by CMT and will make every effort to share my journey with all of you. I will have to go back and share my events as they have been happening.
As for today, it has been one of those days where the energy has been drained from my body. You know that feeling? It's not muscle aches, just fatigue and no energy to move around and do the everyday things. I had to talk myself into going to pick up my daughter and tap into my reserves.
Seriously, I very much dislike this type of days. As moms we have a billion things to do and sitting around is not one of them. I guess I should embrace days like this because it's the only time I get to sit around.
Enough of my complaining. I hope you are all doing better, since the weather is getting warmer. I know I have enjoyed and am enjoying 70's and 80's and not looking forward to full summer temperatures.
Well, until tomorrow. I will try to gather pictures of my events and will be posting more often.
Thank you for hanging around.