Wednesday, July 24, 2013

One Step At A Time

James playing at the RDS booth
Despite the craziness this week I did pretty well getting my miles in. This week was the National Down Syndrome Congress in Denver. On top of that some exciting news on the research front came out this week. Of course with the research came some interesting discussions about how far this research will go. In the new study the researcher was able to "turn off" the extra chromosome in a petri dish. While this is extremely exciting to me it is still such a long ways from having practical applications for our kids. For me any research is exciting and promising and we'll just have to see as we go. No I don't want to change who James is, but if I can take away the cognitive delays, the medical issues...then yeah I'm all for whatever treatment it is.

It has been brought up to me that this research may lead to "getting rid" of Down syndrome. Personally I think we're a ways off of that with the new research. I think prenatal testing is doing a much better job of getting rid of Ds than turning off a chromosome is doing. But who am I to really say. I love my little guy with two or three 21st chromosomes. He's James. He's not Down syndrome. He's not a cause, not a disease, not a syndrome. He's James! He's James who needs a little extra time to learn things, needs a little extra help breathing, a little extra help from doctors and therapists. But he'll get there with everything...I keep reminding myself of this. I want him to live a life just like any other little boy out there, playing in the mud, bringing home worms and in general bringing utter chaos to our home. If there's a drug that comes out that will help him do all these things, be more independent, learn and communicate better that's pretty frickin' amazing!

My chigger bites!
It was another really hot, muggy week. Monday I had the brilliant idea of running Green Mountain. I say brilliant because the backside from my office is totally overgrown. It wasn't so bad going up but as I cruised down the blades were slicing my thighs and really stung. I didn't think much of it other than that it hurt right then but I thought it was just the blades slicing my legs. That was until Tuesday I couldn't stop itching my legs. From my ankles to short line they were covered in chigger bites! Over the weekend I ran my 19 mile loop again. I was a bit disappointed it wasn't as fast as I was hoping, but got to the car and realized it was 95 so I figure not too bad considering how hot it was. I also didn't have any stomach problems so I think I'm starting to get a good plan for my nutrition that seems to be working for my body. Race day is coming quick!

So this week I ran with a bit more in my heart. Having NDSC in Denver this week I was reminded on every run why I am doing this. Why I'm running this crazy Leadville 100 mile run. One step at a time I will make it through each of those 100 miles. And one step at a time we'll get closer to some therapies that will make a difference in James life.

Week July 15 - 21

Miles Running: 47.0
Hours Running and Hiking: 9

1 comment:

  1. Thank you Siobhan and James for helping us at the RDS booth, spreading the good news about research progress and RDS Runners.

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