Why I Put Myself Through Hell to Run the Boston Marathon

I never imagined it would be easy…

I never thought it would be fun…

But this year, I am running the Boston Marathon to raise money for research so I can hopefully one day tell my son that there is a cure to his chronic illness and that his struggle is finally over. I am not a runner, and in fact, have never even run a 5k (or wanted to run one for that matter). What would make me think I have the ability to pull off a marathon when I have lived this long with zero running?

I guess deep down, a part of me wants to suffer, to push away the numbness and feel everything, to give my all while realizing it may not be enough when exhaustion sets in and I want to quit. But knowing all along that I will never allow myself the easy way out. I will continue to push myself for my son, I will continue to push myself for every other child and adult who share his struggles, and I will continue to push myself for the families whose lives have been forever impacted by this diagnosis.

Maybe, just maybe, I will be able to get a glimmer of what it is like to live with an invisible illness, of what my son faces every single day as this diagnosis forces his body into the deepest state of exhaustion while ripping away the layers of joy, laughter and even childhood.  Maybe I need to feel that, so I can experience it from the inside, rather than the outside always looking in.

I have spent too long feeling hopeless and powerless with this disorder. Our lives were on a very different path before the diagnosis. I had a plan, written out in extreme detail, of the course my life would take, the future that was to become our reality. That future has changed. All of the planning in the world could not have prepared us for these last five years.

I need to take back control and find a way to make a positive difference. We will not be victims of this chronic illness. My son is a fighter, and we are his army. If a brighter future for him means greater awareness of his disorder, then my life’s purpose is to bring awareness to this cause. If a brighter future means continued research to hopefully find a cure, then I will gladly lace up my running shoes and hit the pavement in order to
raise those funds.

Let there be no mistake: a mother’s love for her child knows no bounds.

To read more about Noah’s story or to support the cause:

https://charity.gofundme.com/o/en/campaign/wake-up-narcolepsy2020/lindsayjesteadt1