4 days until I leave for Everest. It’s almost midnight…I can’t sleep. All of my gear is strewn all over the living room floor and I am just staring at it. Part of me is wondering, “What in the world am I doing? Why did I think I could do this?”
How can I leave my family for 3 weeks and how can I get up that mountain? I have been hiking consistently for a year, but something tells me that may not be good enough. Steve is a very capable father, so I’m not worried about him taking care of the kids…but what if a catastrophe happens and I can’t be reached?
In the video we had made, the first thing I say is, “ I never felt like I was doing something that was really hard for me, but my son is doing something hard every single day.”
I haven’t even boarded the plane yet, and I already feel like it’s been hard…so I guess I’m getting what I asked for. I injured my knee a few months ago, had physical therapy, it’s mostly better. But then I took a MAJOR fall a few weeks ago, hiking Mt. Monadnock with Abe in a storm. I fell so hard, I bounced my chin off a boulder (big bruise), had a contusion the size of 2 softballs on my thigh, and pulled a bunch of tissue/ muscle in my chest wall. At first we thought I cracked a rib…thank goodness I didn’t.
And I was Just MAD….I was thinking, here I am training my butt off so I can do this fundraiser for our foundation and nothing is going the way I thought it would. For example – I thought I would lose some extra pounds, since I’m hiking 20-25 miles per week, right? Um, no. Actually, my rear end has increased in size so much that I can’t even wear my jeans! It’s my gluteus maximus building muscle from all the hiking….but that was NOT my plan. I also didn’t plan on injuring myself so much.
Then the other night, Steve said, “Well, you said that you wanted to do something that was really hard…..” And I realized….I had been thinking that Everest would be the hard part. But it’s been hard all along….and also great at times. I have seen beautiful parts of NH that I may never have experienced without this training, I have spent hours alone in the woods, on the trails, and it’s so therapeutic, I have felt my body get stronger.
And that is what life is like with a child who has a progressive and terminal illness. There are so many great moments every day, because he is funny and smart and goofy and loving and charming….but he is also losing the battle. And that fact casts a shadow over every moment with him. Our hearts swell with love and pride every day…and they break with sadness every day. And it’s SO hard.
I don’t know what my 3 weeks on Everest will be like. I don’t know if I can do it. But I know that I have the best inspiration in the world and I will do the very best that I can do to trek every single step for my baby.
If you haven’t seen our video, please view it here on Go Fund Me or at www.everesttoendduchenne.org and SHARE it, so that we can spread awareness about Duchenne. If you are able to donate, please do – I still have a ways to go to reach my fundraising goal. ALL money donated will go to fund the most promising therapy we can find right NOW.
And please send positive vibes and prayers to the Everest to End Duchenne Team….7 people trekking to try and save the lives of these boys.
Much love and gratitude,