This run is first and foremost about our Momma, Dawn VanEssen. Our mom’s dream for her life included one thing: to be a mom! She said that if my dad would have agreed to it, she would have had 12 kids! They settled for 6! She was a dedicated, loving, energetic and attentive mom to all of us from the day we were born to the day we said goodbye. She taught us kindness, generosity, humility and most of all, how to love one another deeply. She lived a very dedicated life of faith and passed that on to everyone around her by living her faith out by example.
When our mom was diagnosed with ALS in February of 2008, she had been consulting with several doctors as to why she occasionally had slurred speech and struggled to swallow. No one knew and doctors would recommend she go see specialists. After about 6 months of this, her doctor finally come to the conclusion of the ALS diagnosis. It devastated all of us! With an average 2-5 years life expectancy post diagnosis, we mourned the reality that time with her was limited. Visits became more frequent, gatherings with laughter became purposeful and I(Jillaine) left graduate school in North Carolina to help care for her with our dad. The disease took hold of her even more quickly than we imagined. Within, months, walking was tough for her, and by November, she had to have surgery to have a G-tube put in because she could no longer swallow food. She needed more sleep than she (or we) wanted, as spending time with the people she loved really was her priority. While she tried to stay positive, a lot of tears were shed for the things she knew she would miss (quality time with grandchildren, graduation of her son from college, and future weddings of three of her kids)
However, soon after this journey began it became clear that this run was not going to only be about our mom and her struggle. We wanted to reach farther and touch more people. From a discussion with a friend of ours who is a serious marathoner (she’s run more than one and therefore to us considered to be a serious marathoner) she inspired us to dedicate each mile of the marathon to a different individual who is currently living with ALS or who has also passed away from ALS. Therefore, we want to be intentional about telling the stories of others. We hope to find at least 24 others, for whom their stories can be shared and for whom we can run. Mile 1 and 26(.2) are for our mom, whose story we have shared here and the other 24 plus have yet to be to told. Help us tell other’s stories. If you or someone you know is living with or died from ALS, contact us!
This run will be hard. The training will be painful and time consuming. It will include days in which we’d rather stay in bed or go out with friends. At these times, we know our mom and the journeys of others will make us move and get out the door. We run because WE CAN and to help find a cure for ALS so that others do not have to endure its pain.