Just Keep Going

By Michelle


I have never been a fan of winter; every year while in the middle of another brutal Missouri winter like we are having this year, I question why I still live here. January of 2014 was no different. It was bitter cold and unbeknownst to us, the beginning of what would be a 5 month long stay at Children’s Mercy Hospital. By the end of January, almost a month into our stay, we still did not have answers to why Eliana was having hundreds of seizures a day despite multiple anti-epileptic medications. The stress was starting to get to Chris and me. We began to question how we would ever get through this seemingly endless and terrifying experience.

On January 21, during my daily vigils at Eliana’s bedside, I happened upon a quote someone had posted on Facebook in honor of Martin Luther King Jr. Day. The quote was from a 1967 speech he gave in Cleveland. Dr King very eloquently said, “We must keep going. And so, if you can’t fly, run. If you can’t run, walk. If you can’t walk, crawl. But by all means, keep moving.” I vividly remember reading this quote and feeling like it was meant just for me, to encourage me through this difficult time.

Just a few days later, we would receive earth-shattering news: Eliana’s genetic diagnosis. Even though not much was known about SCN2A at the time, the prognosis was not good. We were told by a genetic counselor that she would likely not live to see her second birthday and if she did, her quality of life would be very poor. Diagnosis Day, sometimes referred to as D-Day in special needs circles, was the worst day of what would be the longest winter of our lives.

Since that initial genetic diagnosis, numerous other diagnoses have followed. One of them being Dysautonomia, which causes Eliana to have an overactive sympathetic nervous system. If you don’t know, the sympathetic nervous system is responsible for your “fight or flight” response. This is our body’s physiological response to stress. For Eliana, when her body encounters stress, like a tummy ache, her body jumps into “fight” mode and cannot get out of that mode without medical intervention.

When staring down adversity, much like Eliana’s sympathetic nervous system, we have two choices: fight or flight.  We can run from the threat, try to avoid pain and survive to live another day. This flight response can prove quite useful when dealing with temporary threats. Like this past summer when I was cleaning out our long neglected garage and stumbled upon a hive of very protective bees. I chose that day to run. I got away from the threat as quickly as possible and lived to clean another day.

Unfortunately, many threats in our lives are not temporary. They are long-lasting and life-altering and that flight response simply won’t do. The other choice we can make is to face the threat head-on: to fight. This option, which opens us up to the possibility of pain and potential injury, also provides us with the opportunity to weaken or even eliminate the threat.  As the poet Robert Frost said “the best way out is always through.”

I must admit, there were times in the early days of being in the NICU that I wanted to run from the threat of an uncertain future and daily life-threatening crises. Many evenings, when we should have been snuggling Eliana in the comfort of our home, enjoying our newborn baby, we sat in an empty nursery, crying and grieving the life that we had meticulously planned for our new family, while our daughter fought for her life in a hospital across town. Early on, Chris and I made the conscious decision that we must face this threat head on. That while we might want to run and hide, we must stand and fight. So every morning, we woke up, got dressed and made the trek across town to Children’s Mercy to spend the day fighting with Eliana. At this point we were just crawling (and we crawled for MONTHS), but we were still going, still moving forward, still fighting.

So, no matter how cold the winter may be or how terrifying the threat may seem, in the immortal words of Dory, a small blue fish,  “just keep swimming, just keep swimming.”