Monday, January 25, 2016

Photos 2


Saturday, October 10, 2015

The Race Against Time

Lately I have been thinking a lot about what it means to have mental strength. The mental toughness to keep going.

I recently ran my first half marathon. I had fully intended to spend my summer and fall training, but life got in the way. Our wonderful night nurse who had been with us since William came home with his trach and ventilator moved to be closer to family. I assumed the role of night nurse 7 nights a week. So my training ended except for my long runs on Saturdays (thanks to my awesome husband).

On race day I found myself standing in the corral waiting to start and fighting back tears. I hadn't  slept in my bed in 45 days. I was mentally and physically tired and about to run 13.1 miles. I snapped myself out of my pity party and decided I started this goal and I was going to finish it (even if I had to walk a little). 

The weekend after my half marathon, I had the amazing privilege to attend the Global Genes Summit in Huntington Beach, CA. I found my self surrounded by the most inspiring people imaginable. At the presentations of Champions of Hope Awards I was in awe of the mental toughness, kindness, humanity and overall perseverance in the room. The awards stage was full of legends in the world of rare disease. I found myself thinking about the mental strength I see in all of our MTM children and families. The strength to keep going despite the pain, the suffering and the hardships.

Below is a video clip of Alison Frase receiving the Global Genes Champion of Hope Award for Patient Advocacy. I love the term Champion of Hope. A champion is a victor in a challenge and there is amazing power in hope in the world of rare diseases.

I have often thought about our journey as a long distance race. A race that we didn't train for, doesn't have a course map, has an unknown distance and too many hills to count. Despite our difficult course our community/ Our Team is awesome! Our only opponent is MTM. We race against time that we fear our children do not have. Throughout our race we have learned a valuable strategy from our pace leaders. Perseverance. Perseverance is our strategy in our race against MTM and we are going to crush it.

Tomorrow is the Chicago Marathon and five amazing individuals are running to raise awareness and funds for medical research for Myotubular Myopathy. Collectively they have raised over $10,000 dollars and the donations continue to come in.

A special Thank You to all of the runners in the Fox Valley Marathon and Brooklyn Half Marathon. You are an inspiration.

* Chicago Marathon Pictures coming soon!