Life is a gift. Daily we are given opportunities and it's our choice as to whether or not we make the most of it. Some days may have more unique gifts than others and for me, today was that day.
Yesterday, I watched my kids and their cousins go on roller coaster after roller coaster with huge smiles on their faces. I'd watch in wonderment and try to figure out why do they like that or how do they do that? After talking with my sister-in-law, Michelle, about how scary it seemed to me, she kindly offered to go on Powder Keg with me. I couldn't help but hem and haw, but finally decided that "yes, I'll do it." And I know that this may seem really silly to some, but every time I rolled over during the night, I thought about the start of the rapid coaster. I too would find myself going 0 to 58 in 2.8 seconds!
I have to be honest, there really wasn't any strong desire to go on this terrifying excursion other than knowing that not long ago, going on this ride would't have even been an option. Any stressful or tense situation would have sent my muscles into a big knot and not just during the ride, but likely for the rest of the day, if not two! Plus, I couldn't help but think about those who would give anything to go on a jaunt like this but maybe can't, do to limitations similar to what mine use to be. So, yes, this really was something that I HAD to do.
Once the attendant had me locked into position and the cars moved into the starting position, I looked at my sister in law and said, "There's no going back now." I became a ball of nerves and she graciously offered to link arms and I wasn't about to turn her down. I looked over at the rest of my family (many of whom had already ridden he ride) and smiled at them as the pressure began to build in my body. And before I knew it, we were off on the ride of our lives.
Yes, this was incredibly scary, but I am so happy that I took this opportunity to face my fear and can wake up tomorrow with no regrets. Is there anything better than that?
Short video of Powder Keg
Dear Dopa Responsive Dystonia:
Why are you so difficult to diagnose? Why do all of your symptoms mimmic Cerebral Palsy? Why do few doctors know what you are, yet your so easy to treat? Why did you challenge my everyday living for 33 years, when a little pill could ease all my pain and make it possible for me to enjoy every day activities? Why did you think you could take over my life? You must not have known how strong of a person I really am, because I rarely let you get the best of me.
I hate to tell you this, DRD, but I won! Even though I went untreated for three decades, I was able to make friends, go away to college, marry and have children despite the fact that I could barely move my arms or legs to due to the countless hours of spasms, stiffness and cramping through out my body. Not only did you not stop me, but I was able to maintain a positive attitude and be a joyful person throughout this whole ordeal.
I’m glad you chose me to live so many years with a diagnosis of Cerebral Palsy, because I’m able to share my story with the world and because of YOU, I’m helping people, both young and old. My past and current experiences create awareness for parents who are now able to appreciate all the mundane tasks simply, because they know that I’m grateful for all I can do independently. I LOVE that I can now put clean sheets on a bed, decorate my kids birthday cakes, cook meals every night and drive my children to all their activities. Yes, it keeps me busy and can be stressful at times, but because of YOU and my “miracle drug”, I can do it all with a smile plastered across my face.
Dopa Responsive Dystonia, you may have tried to steal happiness from my life, but what you have really done is helped me realize how wonderful the gift of mobility really is. And for that, I thank you!
Check out this posting on the Mighty along with others:
John may be my third child, but I experience many parenting firsts with this little boy who is full of life. Many parents dread potty training their toddlers and I was no different. Back when I had many physical limitations, my mom helped me potty train Winona and Sharon. I'm guessing that one doesn't notice how physical of a job potty training a little child can be, but if you really think about it, it can be down right exhausting (carrying them to the bathroom when the do the potty dance, pulling their pants down, cleaning up accidents, all the laundry, etc).
I'm so pleased that this time around, I'm doing it myself! It's a wonderful feeling to know that I don't have to rely on my mom to potty train my son! Granted, John is not exactly up for the task (he wants to run and play), but he is more than ready to move on to the next stage of his childhood. I'm pleased to say that he is doing great! We're on day five and he hasn't wet himself in two days!!
I really do love that I can enjoy being an independent, stay at home mom. My children bring me so much joy and I feel so blessed to have the ability to be involved in their lives like I always wanted to be! Yes, even potty training is a gift!
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!