Motivation is a beautiful thing. It can sneak up on you and take you for the most amazing ride. The key is to not miss this moment as it can be fleeting.
My mom and I are running a half marathon in a month and while I would like to say that I have been training all summer, I have not. I have enjoyed the farmlands of Minnesota with my sisters, the waves of Kauai with my family, and the laughs of home with family members that I don’t always get to see. It has been a wonderful summer and while I’m not quite to the point of running 13 ten minute miles, I have accomplished much that I had wanted to do.
Since getting back from my trip on Monday, one can say that a fire has been lit on my “training” for the half marathon (training is in quotations because anyone that knows me knows I don’t actually train, I just do what I see fit to get me ready for this race, i.e. run… a lot). Tuesday night I went to the gym, set a goal for myself and started running. Running for long periods of time is not really my forte; I’m more of a ‘you want to run a mile, do it fast and get it over with’ kind of girl. That doesn’t work when you are running for an hour nevertheless two. So naturally 20 minutes in, I decided I needed to cool it because this wasn’t going to be easy at the rate I was going. I encountered a communication error with the treadmill when I accidentally hit the “cool down” button. Let me tell you, there is NO going back once you hit the cool down button which as you can imagine is quite defeating. Now that my time and speed had been effected I needed to make the necessary adjustments, and you will be happy to know that I did not stop right then and there (which in the past I totally would have, and yes, this has happened before). I set the time and continued on to my goal. The last five minutes were agonizing. I wanted to stop. I was done. I had run enough. My mind started wandering and I thought about how my friend had just told me that during her half marathon she too was losing her stride in the end as it was all uphill. She said that thanks to her friends, who talked and joked with her on the last stretch, she was able to do it AND she set a new personal record! In remembering this, each step got a little easier. And I thought to myself, I can run all the way…
I finished my goal. I ran the miles I wanted to and then some in the time given, but I left the gym a little disappointed in myself. Why? I hadn’t made any leaps or bounds with Run All the Way. My research took the back seat of my summer plans and summer reads. Disappointment can be overwhelming at times, but in this instance it was inspiring. I needed that run to get me back in the mindset that anything is possible and that knowledge is everything.
First I needed something to research. While there are many disabilities out there, all of which I plan to learn about, there is one that hits close to home and one that I needed to research first: Rett Syndrome.
Since this will be my first post about a disability please bear with me as I work to find a way to relate the information that I have learned in a manner that isn’t as if you are reading a dictionary. Each time I post about a disability there will be some background information regarding the disability, the research that they are currently conducting, the foundations and organizations out there supporting the cause, and any other beneficial information I think you should know.
So let’s start running…
Rett Syndrome
Rett Syndrome is a developmental disorder primarily in females caused by a genetic mutation on the MECP2 gene of the X chromosome which leads to severe physical handicap and significant delays in intellectual development. Now I don't expect you to remember this gene, but it is important to know that it's on the X chromosome and that the reason why this disorder is primarily in females is because most males don't make it to term since their X chromosome has been compromised. The signs of this disorder, which appear around 6 to 18 months, are most commonly confused with those of Angelman syndrome, cerebral palsy, and autism (www.rettsyndrome.org).
Here are some beneficial sites which can help you further your knowledge:
- http://www.rettsyndrome.org/
- http://www.nichd.nih.gov/health/topics/rett_syndrome.cfm
- http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002503/
There are many foundations currently behind the research for treatments and cures of Rett Syndrome. Since the realization of the mutation on the MECP2 gene, there have been significant advances in what to study. In 2007 the principle of reversibility was established and brought about a great hope that Rett Syndrome and related disorders may be reversible. The International Rett Syndrome Foundation has contributed over 24 million dollars in direct grants for this research to keep moving forward. Please see how you can contribute! http://www.rettsyndrome.org/content/section/10/994%20/
The diagnosis of Rett Syndrome in a family is no simple thing to swallow. This last week I have read countless stories of hardship and sadness. But the one amazing thing that I found in each of these stories was great love. Rett Syndrome is life changing, it can throw a family onto a path they weren’t expecting to live, but with love and hope and a great faith, life can go on. Just one step at a time.
