March 4th Hike: Thoughts on HOPE

Today as I was training, I thought about hope. In my world, I have a never ending struggle in my mind as to whether hope is useful or counterproductive. Being in the transition phase of Duchenne Muscular Dystrophy with my son Anthony has brought about even more questions. 

I thought about our upcoming expedition. The minute my son expressed his wish to experience the bottom of the Grand Canyon, without question, I knew I had to find a way to make it happen. Of course it was mostly for him; to do anything I can to allow him to pursue his dreams in the midst of all his challenges. But I would be lying if I said it wasn’t for me too. 

When he was younger, I did all I could to stop the disease. I raised money for the cure, stalked scientists, dragged Anthony through clinical trials, went to conferences, talked to everyone and even pestered everyone in Washington DC to try to affect policy and change on a greater level. But it’s still happening. He’s still getting weaker.

Now I feel a new level of helplessness. When we wake up in the morning and he has suddenly lost another skill, one I know that will never come back, I have to wonder how helpful hope is. Is having hope living in denial? I wonder if I’d be better off learning to live life on life’s terms so I can handle the situation as effectively as possible without all the emotion.  I wonder if I am I avoiding the work of accepting reality and being in gratitude for what I do have, by hoping it will be different. When I am hoping things will be different, how am I truly living in the moment? And believe me, in my circumstances, I don’t want to miss a moment no matter how hard it is.

On the other hand, hope has been so useful in helping me to carry on and not stay in self-pity too long. As a mother, I believe it’s impossible to be told there’s nothing you can do to help your son. Those of you who are mothers know that’s not something we can even process. Since I have tried for so many years to change the outcome for my son and it’s still happening, I honestly need something to focus on to make me useful. So when Anthony’s asked me to get him to the bottom of the Grand Canyon, my first thought was….now THAT I can do. 

I don’t know which is true about hope, but I do know this. During this time where he is rapidly changing, I jump out of bed in the morning to take care of him and my other son, to continue to make calls to get sponsors for our trip and to train so I can make this happen for him. And I do have hope right now. I have hope that we will find intense joy and connection with others through this experience. We all have something to look forward to. So for today, I am in gratitude for what I have and not only am I accepting reality, but I’m choosing to make the most of it. Not just for me, but for everyone around me who may also need a reason to keep going.