I believe that we are all connected, and that our purpose is to support and to teach others in this life. WIth this in mind, I wrote about our family’s experience in my new book – One Rep at a Time. It is a story of love, loss, hope and faith, and the undying belief that we can endure any challenge, and learn to live a life of passion and purpose.
Journal Entry: June 25, 2010: Graduation Day (10 years after diagnosis)
On Monday, we went to our son’s grade eight graduation. While everyone clapped
Tristan's Grade 8 graduation.
as each graduate accepted his or her certificate, I was sitting quietly in the back row, hiding my tears behind big sunglasses.
See, our son was never supposed to make it this far. When he was 10, he was diagnosed with a serious and degenerative form of muscular dystrophy that causes every muscle in his body to slowly deteriorate over time.
I can hear the doctor’s voice like it was yesterday: “He’ll be in a wheelchair by 10.” (True). “His lungs and heart will weaken.” (True). “He’ll lose the use of his arms too.” (True). “He’ll be gone by his twenties….”
In our family, we mark each milestone by taking little steps, because big steps are too far into the future and too uncertain. Our next milestone is to see him graduate from high school.
We’ve learned to not just live for today, but to live for the moment. There’s joy and richness here, in the moment, and living in the moment is the only place where we have power, for any of us.
Life is a continual dance of holding on and letting go. Our son’s body reflects that dance as it holds on and lets go, trying to hold on to whatever strength it can while letting go little by little into the inevitable. And I am there, beside him, helping him to move with that flow, as I move with my own flow. I am thankful for all it has taught me and I am thankful my son has included me in his life’s journey.
Love your family. Be with them, really be with them. Muscle into every moment. Pay attention to your life. Accept what is, and be grateful, really grateful, for what you have. Say it out loud. Say it often.
Live with arms and heart wide open. Stay open to the possibilities. Lean into your sharp points, and know that you have the fortitude and strength to make it through your own dark night.
Some people think a graduation for grade eight is silly. Not for us. For us, it’s another chance to be able to celebrate our son’s life and all the gifts his journey has taught us.
We are thankful for having the chance to enjoy yet another milestone, and we have come to learn that life’s greatest treasures are to be found deep within these milestones. And life is not to be endured, but it’s to be lived with great courage and love and respect for all things seen and unseen. It’s to be lived one step at a time.
Excerpt from One Rep at a Time, by Karen McCoy – Available now!
Hi Karen.
This was beautifully done (as always) and I have read all the pages and looked at all the pictures on Tristan’s blog/website. I continue to just be amazed by you and am always sending wishes for additional strength for you. I know you are surrounded by many beautiful people who support and value you too
Congratulations on the new bed. I am so happy this will get you some sleep and Tristan the needed nightly rotations to ease pain and create comfort.
Your teachings/training in fitness have stayed with my even as I live in a 13 foot trailer on the road. When I have electricity I still have my morning protein shakes and daily I focus on trying to find those ways to stay fit and in the right shape. I am not sure what my weight is (a scale would take up too much room), but I think I am maintaining and steady.
Please say hi to Tristan. Love to all of you. Sherry
Hi Tristan and Karen: I feel so blessed to have followed the link on Tristan’s Facebook to this blog. I have spent the last hour looking at pictures and reading the material that you have posted. Your strength is amazing and your journey, as difficult as it may be, is a story of love and family.
We have only met Tristan once although Evan still carries a picture of him in his wallet – it is rather outdated now, so perhaps it’s time for a new one! I am very interested in your book and look forward to more information.
Cathie
Thank you Cathie, and to Holly too. It’s nice that you’re following Tristan’s journey and I hope that you are all well. Much love to Evan and Paul too, and if you’re ever out this way, please look us up! We’re heading over to see Joe in a few weeks…we’re spread so far apart, but thankfully we have the internet to connect. Please stay in touch!