I was misdiagnosed for 33 years and living a life without the ability to run and play like all the other kids in school. When people hear my story, they almost always ask, "Aren't you upset that you missed out on a normal life ?' The answer is always the same, "No."
First of all, I know that my neurologist didn't intentionally misdiagnose me. I may not have appreciated his poor bedside manor, but I'm confident that he wanted to help me have the best life possible.
Secondly, I had a really good life! My parents gave me more love and happiness in a week than many kids see in a lifetime. I had friends who stood by my side and defended me when others would be cruel. And I married an amazing man who loved me for me. It didn't matter to him that I couldn't play basketball with him or go on long walks around the lake like the other college kids. And because I married this wonderful man, I have three loving children that I wouldn't trade for the world.
Yes, my childhood and young adult life was challenging! Yes, I had struggles that I wouldn't want to relive, but doesn't everyone? Every experience I had for the first 33 years of my life helped mold me into the person I am today. And I like me!
Being angry about what could have been won't change the fact of what it was. Life is a gift and every additional day I get on this Earth is up to ME as to how I live it.
I didn't get a very good nights sleep last night so the amount I'm able to do today is limited. I dropped so many items while getting breakfast ready for John that my floor was a mess! But, that's life with DRD and I am grateful that moving slowly and dropping things are part of this new me.
Back in the day, a night of sleep like last night would have meant a day on the couch for me. Even though, my body is having a rough day, I was able to met my mom for coffee this morning and make homemade dinner rolls (that's easier than it sounds). And sure, I spent quite a bit of time on the couch.
With DRD, I have to rest every afternoon. It's just a part of my life and I'm happy with that. It sure beats being confined to a chair!
My goal is to blog three times a week, but at times I am not sure what I should blog about. How can I not know what to write? Can it be that I'm getting so used to my new life that I'm not appreciating this precious gift of mobility? Of course not! It doesn't take me long and I've got my next post.
This afternoon. Sharon and I went to the mall. We walked around for close to two hours! As we walked the mall I was thinking how much easier it was to just walk rather than navigate my mobilty scooter through the crowd. I do not miss those days. However, I do have a funny story to share with you:
When Sharon was two (my parents were with our family) we went to Walt Disney World. I used my mobility scooter to get around the busy park. Sharon was so little and rode on my lap most of the day. As my parents and I were trying to decide what to do next, I pulled off to the side to get out of the way. I looked up at my dad as he spoke and was started by the unexpected movement of my scooter. I don't know how I let it happen, but Sharon had pressed the GO button on my cart and we were speeding down the Magic Kingdom street. In a panic, I turned my handle bars from left to right weaving in and out of the crowd. Why I didn't just pull the key out I don't know. I was so scared that I was going to run a little kid over and kept yelling at Sharon to "let go!!!" Little did I know, he chased us until he could reach to pull they key, which halted the mobility scooter and simply saved the day.
Sure, that may seem like a funny story now and Sharon still talks about her favorite ride at Disney (my cart); but; I can't help but be thankful that I don't need to depend on a chair to get me from point A to point B! I am so grateful that my legs can carry me where ever I want to go, no matter how tired I may be. Does it get any better than this? I don't think so.
While cooking dinner this evening, John walked up to me, raised his hands above his head and said, "Up," for the first time. I looked down at him and lifted him up and praised him for using his words.
This was not only a big moment for John, but for me as well. When the girls were toddlers, I wasn't able to lift them while standing, much less hold them while I cooked dinner at the stove. I couldn't control the tears stinging my eyes and found myself hugging my little boy.
Sure it took me longer to finish making dinner with John on my hip, but this was a moment I will treasure in my heart forever.
My husband Steve, just returned form 10 days traveling to Costa Rica and Brazil (for work). That left me alone with our three children and a very quite home in the evenings. Because I have never lived on my own (I went from living at home with my parents to living with Steve), I don't fall asleep easily knowing that I'm the only adult to help my kids in case of an emergency.
As I've explained in previous posts, if I don't get a full 8 hours of sleep, my physical abilities are limited. During those ten days Steve was gone, I dropped items, experienced leg cramps, tripped on my own two feet, etc. Luckily, he doesn't have to travel for work often and I am able to take a nap in the afternoons while John sleeps. Plus, I can take additional L-Dopa as needed.
L-Dopa...is my miracle drug. It allows me to experience life in a way that I never dreamed. You see, I was able to be home alone with my kids. Before L-Dopa, when Steve traveled for work, we had to make arrangements for someone to stay with me or plan for friends and family to stop by and check in on us. To be an independent mom is so liberating. Yes, it's a lot of work, but knowing I can do it makes the days go by faster and worry free while my husband is gone. Instead, I think about how lucky I am to have the ability to do it on my own. What a gift!
My goal in life is to help others. I'm hoping that through my book and blog I can inform others about my misdiagnosis and offer hope to kids and adults dealing with physical disabilities. I always felt that God made me contorted and spastic for a reason and if I could help just one person everything I went through would be worth it.
Today was that day! Not only did someone tell me that their daughter tried L-Dopa (my new medication) after hearing my story (she is now walking without assistance), but I also got a response to one of my blog entries saying that I have given a reader's daughter hope that she too can find love and marriage despite her inability to walk.
I am so appreciative for the life I was given. And I mean All of it! Yes, all of it. I would relive my life of falling multiple times a day, painful surgeries, body cast, being stared at and teased all through middle school. I am so blessed and hope that I can continue to help others through my blog, upcoming book, Twitter and Facebook. Never in a million years would I have thought that little ol me could make a difference in this big, big world.
This morning I woke up feeling refreshed and grateful for a good night of sleep, which means I will have better mobility and dexterity today. I turned on the news and saw that it woul be sunny with a high near 50 (it's been months)! I shot out of bed thinking Nothing's going get me down today!
Sadly, when I was leaving the YMCA (after a great workout), I was told that the gentleman who takes care of my son in the childcare had passed away last week. It came as such a shock since I had just seen him earlier last week, with his usual happy greeting and a high five for my boy. Dropping John off in the childcare will never be the same.
This is a reminder that life is short and we really need to take the time to appreciate the little things in life. When you go out to enjoy the nice weather this afternoon, I ask you to take a moment to think about John's friend and give thanks for all the people in your life who may not be close to you, but make your days a little bit brighter, like Darrel did for me and John.
You will be missed Darrel.
Today has been a great reminder that I am not normal. I have fallen twice today and find that frustrating. Yet, at the same time, I am so grateful that falling is no longer a daily occurrence for me. Years ago, when I would tumble, I would have to crawl to the couch and pull myself back up OR call for help.
Yes, my ankle hurts and my knee is slightly skinned, but I could get myself up off the floor without any worries. I would call this a good day and I am so grateful!
Now that I'm on Twitter, I've been thinking a lot about inspiring quotes to share with others. Forest Gumps' "Life is like a box of chocolates, you never know what your gonna get," came to my mind and made me smile for many reasons.
First, I think the quote is spot on! When I wake up in the morning, I'm not certain what will happen, but I can choose how I react to it. I try my best to stay positive, but I am human and can overreact (just ask my husband).
Second, Forest Gump came out the year I graduated high school. For the first time, I felt like I related to a character in the movies because Forrest wore leg braces as a child. I'd tell my friends that those braces looked like the ones I wore and they'd smile and say, "Run, Jeanie, run." Of course, we'd burst out laughing and repeat our rendition of the movie a few more times.
Lastly, Forrest stopped having issues with his legs and became quite the runner. Sure, I am not able to run like Forrest, but I'm able to walk on the treadmill, yoga and chase little John around the house (all things I never dreamed would be part of my life).
So, yes. I really do believe life is like a box of chocolates and every one of them has been a blessing!
After living the first 33 years of my life thinking I had Spastic Diplegia, a form of Cerebal Palsey, I was correctly diagnosed with Dopa Responsive Dystonia (DRD). I am on new medication and doing things that I never imagined possible. This has changed the lives of my husband and two daughters. I truly believe that I am living a miracle each and every day. Life can't get any better than this!