At times, life can seem more like a roller coaster ride than a leisurely walk through the park. You know what I'm talking about, highs and lows followed by twist and turns, not knowing what's waiting for you around the corner. I may be a a positive person, but my life can feel like a runaway train at times, just like yours. In fact, these past two weeks have been filled with highs and lows, which is why I haven't gotten around to blogging.
Two weeks ago, my son became sick. I didn't think much of it. He had a low grade fever, so I assumed he had the flu. However, since we had a family vacation to Disney World right around the corner, I took him into the doctor sooner than I normally would (the flu is going around here with kids with fevers for up to seven days). After numerous tests (physical exam, blood work, and chest x-ray) I was told that he had Pneumonia and possibly a bacterial infection in his blood. I was filled with worry. My little boy had to be okay! And I needed him to get better before our big vacation! Yet, I could tell that the doctor was thinking of sending him to the Children's hospital. Instead, he was given a shot of antibiotics along with two more doctors appointments to monitor him closely to make sure it was safe for him to travel. I was beyond relieved to see him progress so quickly and in no time, we were off on our family trip to meet Micky and Minnie and escape life through fantasyland, just as Walt Disney would have wanted.
Together, I toured the magical world of Disney with my healthy little boy, husband and two daughters. And when I say toured, I really mean walked about 8 miles a day! Sure, my feet were tired, but I was WALKING the parks!!! And I was doing it with ease. It didn't matter that there were people brushing up along side of me. I never lost my balance and I was thrilled to be spending this special time with my family. I even went on a roller coaster, which is something that would have been too hard on my muscles in the past. My daughters were so pleased that I faced my fears and sat next to them on these rides, even if they didn't think they were scary!
My point of sharing all of this with you, is that life is hard. We all face difficult situations from time to time, but more often then not, there are good times just around the corner. But it's up to us to be patient and brave no matter how out of control our life may seem at the time.
I have always believed that I was born disabled for a reason. As a young girl, I felt that if people saw this little girl with cerebral palsy, who was doing her best to run around and play with a smile from ear to ear, that they would realize that they too could be positive and happy no matter what challenges they faced.
These days, I feel like my purpose is so much more than that. Yes, I still want people to look in the mirror and tell themselves that they have so much to be thankful for, but I also feel like I need to help others in a way that others can’t. By writing this blog, and having my FB page I hope to raise awareness about Dopa Responsive Dystonia.
When I recorded the affects of coming off my l-dopa. my hope was that one person would see it, think it resembled themselves and then talk to their doctor about doing a trial of this “miracle drug.” As I mentioned before, the video has helped two women, but today I was told that it has helped several children.
Knowing that I had a part in changing the lives of children who want to run and play, but couldn’t, brings me more joy than one could ever imagine. I can’t help but think about their excitement as they run on the playground with the other kids at school. The kids that they likely looked at with awe and wondered how do they do that? And then I think of their parents…are they able to sleep better at night knowing their child is on their way to a more active life? Are they worried and wondering how long will this last? And that’s when I begin to pray. I pray that these families are able to adapt to all of this without worry and are able to really enjoy every moment of their new lives.
I really enjoy sharing my story with others. In fact, I love sharing my story with others. Every time I tell my story I know that there’s another chance that it may be retold to someone who may be misdiagnosed like I was for 33 years.
I’m proud of myself for going out of my comfort zone and starting a blog because those posts brought awareness to two individuals who are now being correctly treated with l-dopa (my miracle drug).
Back in September, I took it a step further and decided to make a video blog. Even though many people thought I was crazy, I decided to come off my miracle drug for a week (with my doctors guidance). My hope was that it would be seen by many to increase awareness about Dopa Responsive Dystonia (DRD), because it is often misdiagnosed as Cerebral Palsy (CP). But more than anything, I wanted it to change the life of just ONE person.
I’m beyond pleased that two women have notified me that because of my video they did a trial of l-dopa and have seen results. You can’t even imagine how happy this makes me. The best part is that I will actually get to meet one of these individuals while I am at Walt Disney World in a couple weeks.
I’ve always felt like Walt Disney World was a magical place, but I can’t imagine how surreal it will feel when I come face to face with someone who I have personally helped. At this point, I’m just as excited to see my two year old look up to Micky, as I am to greet my new friend. And that will be a Magical Day!
Please help me to help others by sharing this video.
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!