Sunday’s purposeful running series continues this morning with an especially moving story. Mary Helen describes her parenting journey from joy to shock to grief and back again. I am in awe of Mary Helen’s honesty, humility, perseverance and strength. You can follow her ongoing training and Damien’s progress at A Written Purpose. And grab a tissue before reading further.
My journey into running was both gradual and, at the same time, kind of happened overnight. To say I ran “casually” throughout high school and college might be stretching it a bit. I had run a few 5k’s here and there, but nothing serious. Running and I had a love-hate relationship that usually favored the ‘hate’ over the ‘love.’ This trend continued until I was pregnant with our first child.
In January of 2011, we welcomed baby Damian into this world. The pregnancy had been nearly perfect as was the delivery. He was the cutest little bundle of joy I had ever seen (although I guess I’m a bit biased 😉
However, once we brought him home from the hospital, things started to get rough. At first it was just the typical newborn stuff–not sleeping, crying, eating constantly… But after 2 weeks, Damian still wasn’t gaining weight despite marathon nursing sessions and supplementing with formula. He was also starting to look jaundiced and sick; and by 3 weeks, we were told he had a life threatening liver disease that would require immediate surgery. Handing your baby over for an intensive 6 hour surgery to save his life was nerve-wracking to say the least!
The surgeon said to expect about a week long stay in the hospital for him to recover. However, it was over a month later that we finally got to bring our baby home from the hospital for the second time. It was during this time that we were told Damian actually had a rare genetic disorder called Smith Lemli Opitz Syndrome. Like most of you, we had also never heard of SLOS. A recessive genetic mutation, SLOS causes the body to struggle to produce cholesterol. While many adults work to keep theirs down, the body needs cholesterol to develop properly. Without it, many physical and mental disabilities can occur; and sadly many children die within the first year due to these complications.
They say when a parent is given a special needs diagnosis for their child what follows is very similar to the grieving process after losing a loved one. And this is painfully true… You grieve the loss of a future you had planned for your child and all the possibilities that might not be now. I was in a dark place for awhile. I was sad and angry that my beautiful baby had to suffer. But mostly I was fearful that I wouldn’t have what it takes to be the mom of a special needs child. How was I going to handle a feeding tube, tons of medication, weekly/monthly doctor’s visits, physical and speech therapies, the constant worry of his liver failing, etc.?
After the shock of Damian’s diagnosis wore off, I decided grieving for all eternity wasn’t the best way to handle it. I needed to do something. Since SLOS is rare, there is not a lot of funding for research so I wanted to help change that. I also wanted to do something that would prove to myself, and hopefully one day to Damian, that I was strong enough to handle this. So while talking with my best friend one night, we decided to sign up for our first marathon (at Walt Disney World–might as well make it fun, right?!) with the hopes of raising $1000 for the SLOS Foundation. We would be the small, but determined, Team Damian! What followed was never expected.
I had no clue what it took to run a marathon (other than moving my body 26.2 miles.) As I researched training plans and hydration packs and gels, I realized this was going to be intense! But that’s exactly what I needed to help me through the grief and pain I was experiencing. And what better motivation could I have than doing it for Damian! Everyday he was showing me he wasn’t going down without a fight. If he could be strong, so could I!
I still remember lacing up my running shoes for that first run after signing up. I thought I was going to die. Ohmygoodness, it was horrible! But I stuck with it. And sure enough, it was only a matter of weeks and I was addicted! Long runs became my therapy, and I looked forward to the cold, fall Saturday mornings. By the time January and the marathon rolled around, I was a new person. And while the entire time I was worried we’d never make our $1000 goal, we more than doubled it!!
The race was a lot of fun, and life-changing to say the least! If you’ve never run a marathon before, I definitely recommend the one at Disney. It’s so well done and filled with tons of entertainment to keep you moving. There’s nothing like running 26.2 miles in the happiest place on earth!
We had so much fun in fact we decided to do it again in 2013 with the hopes of raising $5000! And this time we’ve inspired a few more to join us, and Team Damian has grown from 2 to 11 (and counting!). And that’s the funny thing about running. While it’s a very individualized sport, the sense of community and support I have found from other runners has moved me beyond words. They’re there to encourage you, pick you up when you’re down, and help you put one foot in front of the other.
And while I may have healed and Damian is thriving, I know that there are other families working through difficult times due to SLOS. I hope that Team Damian, though small, provides them some of the support and community that running has given me. And that’s what keeps me running!