As I have spoken about in a previous blog I was born with muscular dystrophy called Charcot-Marie-Tooth. It is supposedly a peripheral nerve disease, however since I was born with it it has now spread to my central nervous system also. When I had Will I decided it was time to get genetic testing just to make sure that I knew what we were dealing with. It turns out that him and I both have Charcot-Marie-Tooth. The disease we were diagnosed with is not in itself so much unfamiliar, however it is the Type that showed up that we had that got the neurologist attention. We have a form of CMT type 1F. There is not much literature available on this type. My neurologist at Vanderbilt decided that he would ask his colleagues across the country if they have any results they showed this exact type passed on from the mother directly to the son and he was not able to find any. Also, in my case also have cerebellar degeneration, which they had not heard associated with this diagnosis. He therefore published a story in a neurological journal. Since I have had this disease since birth I’ve never really known any different. I was mobile for 38 years and then started having to use a mobility scooter. I am now in a power wheelchair which really doesn’t change anything except for the way I get around. The important thing is I still get around and I’m very active. Just because things don’t look so good on the outside doesn’t mean that you can’t do whatever you want. I know all to well that it did affect certain things that happened throughout school from teachers that I had and the way they reacted to me, to some kids who just didn’t understand differences. The funny thing about all of these obstacles is I always came out on the better end. Academically I always exceeded whatever I was told would be difficult, and if kids decided to say something, I ended up with more friends than ever and still Have many of those same friends. I didn’t always handle things in the best way, but as I have grown up and become a mother I have totally changed my outlook on how to handle things. The last year has probably been the most challenging year of my life, as I’ve had three brain surgeries in less than a year. Going from being pretty much independent, to losing that independence, has been the hardest thing Ive ever had to go through. Had it not been for the great support system that I have had I don’t know that I would’ve made it through. There have definitely been times I have some major depression that I didn’t know if I could overcome. But as the days have passed and I have had time to recall out the things that of happened I now realize how incredibly lucky I am. I almost didn’t make it two times, and there is a reason for that. When you are able to escape close calls like that, that is God saying he’s not done with you yet. That is how I look at every day I am allowed to be given. God had to work on me majorly because I certainly had no patience when it came to things holding me up to what I wanted to do. It is been a year now since I’ve driven and been able to take my son whenever I wanted. However, that is quickly turning around as I am now in driving training to get my wheels back. That seems like such a minor thing, but when you lose it you realize how much you appreciate it. I will end this very long post and saying please appreciate the people around you and the things that you are able to do whether it be as small as driving your car to work, getting up and going to work every morning, spending time with your family instead of in hospitals, and just hold the ones you love very closely. That is such a blessing that we often take for granted. God bless and have a great evening.
2 Corinthians 12;9 I will boost of my weaknesses so that the power of Christ may rest upon me.
I had my first driving training today for about 3 hours. For those of you just joining us I have always driven, even when my legs couldn’t do it anymore I got a handicap accessible van and used hand controls. Well since over the year I’ve had 3 brain surgeries, they affected my right side since my tumor was on left motor strip of brain. With that said, I haven’t driven in a year. Talk about something that can throw you in a depression, losing your independence can do it. So finally I was behind the wheel today and driving with the $50,000 accommodation van, driving training. The training went great, until I got a phone call while I was driving. My driving instructor answered today and put it on speaker and it was my vocational rehab counselor who has previously told me after many months of fighting for myself that I was 96% covered with them to make the modifications to my van. However , today he called and told me that it looks like they can only pay 15% because of a new rule that they have discovered. That new rule is that if you’ve already paid your bills due to my condition, being the brain tumor, that they cannot pay if it’s already been paid for??? So I asked him if I was supposed to go into debt just to prove that I needed. Stuff like that makes no sense when you have a person who is going against all odds to work, but you have to be able to drive to work. I was so upset about that phone conversation but on the positive note I did great on my driving training. I spoke to another supervisor this afternoon and they’re going to check and see what they can do for me and get back with me. So, yes I was upset, but I’m just going to pray hard about it that they’ve made a mistake and that they will see that this can hopefully pan out. I’ve gotten this far, and I don’t plan on giving up now. God bless everybody and I hope you had a great day! I guess an appropriate song for today would be “ Jesus Take the Wheel” by Carrie Underwood ☺️
I feel like over the last year I have been put through the ringer three times over. Each time has been more difficult than the first one, but the amazing thing is I have bounced back from all of them and feel like a better person for it. When you’re going through Trumatic events, the only thing you have to get through is your family, friends, and faith. Through all of my friends and family praying constantly for me to relearn how to do so many things that I went through, the brain injuries, surgeries, and rehab stays I now see more than ever how prayer works, and how God just takes you by the hand and get you through it. I have always been a believer, but my relationship with God has never been better as I know he’s got my back no matter what. This is shown me a faith that I have always had but now isn’t breakable. I think God for every obstacle he’s put my way and lead me through it.
I am lucky enough to have been married for 19 years to the same sweet man who has stuck with me through literally better or worse. So many relationships today vary based on their situations, however this man has proven to me that he is there throughout whatever. When I first met him I was very private about my disability and the the course it would follow. However, I realized he was very serious about my future with him and that was the first time in my life I probably let down my guard and let someone in. He has been there for me throughout multiple surgeries, cancer scares, my mothers fight with cancer, his sons relationship from a previous married, with me once we go married, the pregnancy and birth of our sweet boy Will, in recent physical hardships that led to 3 traumatic brain injuries and surgeries. There was a time when my latest medical issue lead to life or death, and I could hear him speaking to my friends that no matter what, he was taking me home. Dr’s thought I was heading one way, however due to his love and my son’s support I am now doing everything I did before. That is what Love does.
I am the proud mother of a 12-year-old son. We are like two peas in a pod. I truly believe that God gave me Will because he knew that him and I would travel similar paths and we would help each other through each day. My son has also been diagnosed with the same disorder that I have. We are the only two that have this particular type of muscular dystrophy, so our support group is in our living room 🙂 . Will and I have been a part of a study at Vanderbilt University and have had our study published in a neurological journal. He is an incredible 12-year-old young man who has great grades, good friends, and wants to be a neurologist when he grows up because of all he has seen and been through. He has the heart of gold, and throughout this blog he will also chime in and write from his perspective. I feel like our story is unusual because he also likes to provide input on being a child with a disability, and having a mother that has the same disability . I work with children that have disabilities every day, mostly communication disorders. That is why I think it is so special that Will can provide the voice of how it feels to have a disorder, which may give a perspective to some of my parents who don’t always get to hear the explanation or feelings that their child may have.
This is such an important blog to me for soooo many reasons! Number 1, I was born with a physical disability that you would have thought, due to doctors opinions, would have stopped me from doing what I wanted to do. I was always told that, but luckily my parents nor myself took that as what was going to happen. I was Ann extremely happy and productive young lady and grew up to Ben an extremely productive, successful, happy mother, professional, wife, Christian and friend. As my introduction has explained, I am extremely blessed. Life has not always been easy due to different stages of this disability. It has made for some obstacles during times that have affected or changed friendships, how I mother my son, how I perform my job, and my beliefs throughout the struggles. But even though there have been difficult stages through all of the above I am still doing all of them and successfully. Many of the difficult stages even taught me more positive ways to approach things. I appreciate every day that I am given to do what I love which first and foremost is growing closer to God, being a mother, wife, friend, and I absolutely love my job and I am lucky enough to do every day. Recently, in the past year, I have had some unexpected medical issues that became an issue, which some were life or death, and not related to my muscular dystrophy. Throughout this year I have grown so much as all of the above, but most of all a Christian. My family has grown closer in sooo many ways and my faith in God has continued growing stronger. In the process of the last few months I have lost one of the things physical activities that I love the most, writing. However, thanks to speech dictation I have found another way to write, which is through my voice. I will continue with my number two reason for starting this blog later today. Have a blessed day and be thankful for every thing you have!
I’m, so excited to finally get my blog started. This blog is going to be about life struggles and overcoming them. I am a mother of a 12-year-old boy, a wife for 19 years, and a speech language pathologist for the past 22 years! This blog will deal with disabilities, family, friendships, and how to see the positive no matter what is going on throughout each stage of all of them. I can’t wait to share my experiences and learn about yours.