There could be no better day than today to introduce myself as part of the Running4Rare Boston team.
But, before I tell you the importance of this date, I’ll tell you a bit more about myself.
My name is Sarah, and I’m a mom of three amazing children. I grew up as a competitive athlete, but only started running in college as a form of exercise to maintain my weight as a coxswain for my college team.
When I graduated college and moved south for graduate school, my sneakers became my therapist. I could throw on my shoes at the end of a rough day in the lab or to calm my nerves before a test or a committee meeting. My husband moved to Nashville to complete his residency in 2006, and I knew that I had at least one year remaining in Miami before I could complete my PhD. Without my partner, I knew my social life would dwindle, so I circled the date of the Miami Marathon thinking that I could cross one goal off of my bucket list. I never made it to that marathon because I ended up having my son in February of 2007. I moved to Nashville, started my postdoc, and had our second child. Â After that, life took over and the dream of running 26.2 went to a backburner.
Fast forward to the spring of 2010. My husband was finishing residency, and took a position in Birmingham, Alabama. We knew we wanted one more child, so I wrapped up my postdoc in Nashville and moved south. I became a stay at home mom, and dreamed of the perfect home, filled with pintrest crafts and perfect meals, all while soaking up time with my last baby.
And that brings us to today, January 19th. Today is my youngest child’s 5th birthday. Madilyn was born 5 weeks early during what became an urgent delivery and immediate resuscitation. “stunned at birth” turned into a 5 1/2 month initial hospital stay, a tracheostomy and coming home with an ICU worth of medical gear.
Madilyn was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS) an ultra-rare disease that affects approximately 1200 people worldwide. Our next several years were spent between the hospital and therapy, with what felt like no end in sight. I no longer even thought of my life dreams or goals. Everything was about keeping Madi out of the hospital, and the rest of the family functioning.
Today feels like a lifetime from 5 years ago, it feels like a lifetime from even two years ago. Madi amazes us at every turn, and we are so thankful for our chance to share her with everyone.
This December I was offered the chance to take part in the Running for Rare Boston team, and I am so incredibly honored to be part of it. I have been paired up with an AMAZING patient partner, and I really look forward to introducing her to all of you as I get to know her.
As for the running aspect of this experience. So far it is nothing short of amazing. Over the past two years I have tried several times to pick up running again, but often cave to the aches and pains and fatigue of my body. There is no push like knowing that you have less than four months until you stand in Hopkinton, representing families nationwide with rare and undiagnosed teams. <3