On Sunday, September 18th, I will be running the Philadelphia Rock ‘n’ Roll Half Marathon. It’s not my first race, or even my toughest one, but it might be the one that it is the most meaningful. I am racing for my niece and goddaughter, 6 year old Calliope Carr. Cal and I share the same birthday, December 23rd, and a devastating diagnosis. At the age of 40, with three young daughters, I learned that I had MS and that same year Cal was diagnosed with leukodystrophy. Leukodystrophy and MS are both white matter diseases. In these past four years, Cal has lost the ability to walk, talk, and eat. She receives hospice care. Since my diagnosis, I have fought to regain a sort of balance and reclaim control of my body. With determination, hard work, and the support of my family, I have fought my way back and am in the best shape of my life. I am ready to run, and I want to raise $5,000 to help kids with leukodystrophy. These funds will support pioneering research that will help find a cure for leukodystrophies in a decade.
It is not a great time to be adding anything to my life. Sending three girls to college within four years of each other was bad planning on my part twenty years ago. Working full time in multiple positions has been taxing on my mind and body. In addition, my MS moved forward without my permission. This numbness in my feet that only disappeared after two miles into each run even in the summer, was the disease-not the cold New England weather. I also discovered at my last neurology appointment that the unexplained pain in my jaw that had sent me to multiple dentists was Trigeminal Nueralgia. When my Dr. said that some patients felt it was as painful as childbirth I said, “That sounds about right.” I have also been feeling the heat. My skin feels like it is on fire at times, especially this extra hot summer.
So today, I went for a run and ignored my feet because my legs still work. I am lucky that there was no pain in my jaw when my alarm went off at 5 am. And, I am thankful we are out of a heat wave today.
So why did I jump into this project and come out of race retirement? This spring, as we were quickly approaching the 4th anniversary of Cal’s diagnosis, I was reminded of phone calls from my sister four years ago. Those phone calls have changed on both sides as both of our tragedies have progressed.
Four years ago, I realized that when someone you love is going through hell words are cheap. I learned that I don’t know how she feels and her pain can not be my God’s plan. I learned that I can not carry her load or give her a break from suffering. I learned that this is her journey and I am just watching from the sidelines. I have gone to her numerous charity events and cried. Although I consider myself a beast in my life, standing in her corner makes me painfully weak, but I refuse to leave that corner.
This spring, my regular phone calls and texts were met with dead silence. I kept reaching out to my sister but she would not call me back or respond to my texts. She finally called me back and confessed that the typical conversation starter, “How are you?” is the most painful question when you are in the midst of a tragedy. When you love someone all you want to do is help, but offering to help is just a waste of words. I made the decision to not talk about helping and do something.
Honestly, I did not always appreciate my big sister. Growing up, I found her strength and conviction incredibly annoying. We were five years apart and she was Marcia Brady. I can still remember a bottle of Jean Nate’ she had received as a gift that she never opened and allowed to collect dust on her bureau for years. I desperately wanted to crack open that bottle and become Farrah Fawcett with one Jean Nate’ bath. I sat and watched that bottle go unused while she was busy participating in yearbook, French club, Latin club and more. I am not sure all those clubs even existed but I did hear her drone on about all her activities. In high school, I refused to join any clubs as a way to rebel against the establishment. I hated to conform to what anyone in our town expected from its high performing students. Yes, I was a pisser and owe my parents a big fat apology. So, while that bottle was never opened, and eventually disappeared when she went to college, it represented our differences. I never understood my big sister and when people would tell me how great she was I couldn’t hide my surprise.
My 80’s obsession
We were polar opposites growing up, but we have both changed and grown closer with time. Even so, I am convinced that she would not open that bottle of Jean Nate’ and I would feather my hair and wear a red swimsuit with that bottle, no question.
However today her determination is no longer annoying as I witness the beauty in her resilience.
When Maria started the Calliope Joy Foundation years ago, I came up with the idea to have a 5K in the Fall to raise funds. She was all on board until she came up with Cal’s Cupcake Challenge . Of course my sister would pick an event all about sugar and nix my run. I love my sister, and her idea was brilliant. All plans for my run were dropped immediately and my sister redirected her focus on making her new goal a reality. In the past four years she has made Marcia Brady look like a slacker. (Read her blog post about it: Four years later)
On September 18th, I will finally get to run for Callie and for my big sister. My MS has progressed, Cal’s disease has progressed, and both our lives have become more stressful. It will never be a good time to take on a new project, but it is time to make this run happen. When my sister and I speak, instead of asking the normal questions that have become too painful to answer, we discuss running jerseys and fundraising.
I know you get asked to donate to many causes, but I need your help. I have learned that every charity event is not about the t-shirt or food at the end of the race. Those names on the running shirts have meaning. There is a smile, laugh and story that belongs to each name. I will now begin every charity run with a little prayer. I will pray for the name on the shirt, because they are so very special. I will pray for the people that organized the race, because they’re hurting. I will pray for the strength to make a difference because this life is too short.
Please join me in supporting The Calliope Joy Foundation by donating or joining me on the run. I’m hoping my sweat will be hiding my tears on that day. I wish I could be stronger in front of my sister, but no matter what, I am in awe of my sister’s strength and Cal’s beauty.
Although I will be weak from standing in my sister’s corner, I plan on PR’ing on this run, and hope that you can join me in supporting this tremendous cause. I need your help to fill the streets of Philly with sweat drenched cupcake shirts and Cal’s name. We need runners for the 5K on September 17th or the Half Marathon on September 18th.
Join Team Cupcake
If you can’t join me on the run, please consider donating
Please donate here