20 Feb A LIFE UNEXPECTED
Each new year typically symbolizes a fresh start and a new perspective. For our family, the year 2017 lived up to that expectation for our family, but in a way that was very different than we had ever expected. This is our story.
On January 1st, we took our youngest child, Luke, to the ER for what we thought was a severe case of RSV. During the initial examination, I asked the doctor if I was crazy for thinking something might be wrong with our son. Luke was 5.5 months old and he still didn’t bear weight on his legs or roll over. He didn’t lift his head during tummy time and we were having to thicken his bottle feeds. The doctor acknowledged my suspicions and expressed his concerns. He concluded that Luke had low muscle tone and that we would need to admit him to the hospital that evening. The next day was filled with a series of examinations. Little did we know that our lives would change in a dramatic way. We had everyone from neurologists to every type of therapist and even the chaplain in Luke’s room. At the time, I remember thinking how thorough the hospital staff was, and how everyone genuinely cared about or son. However, on the second visit from the neurologist, we were told that Luke presented with a classic case of Spinal Muscular Atrophy, also known as SMA.
This trip to the hospital was more than we were anticipating. Never having heard about this disease, I asked one of the neurologists what the worst case scenario was. I was not prepared to hear the words that came out of his mouth, “It is fatal.” He followed his statement up by informing us that children his age and type typically live about two years. Simply put, SMA eventually impacts every muscle in the body hindering the ability to walk, sit, stand, eat, breathe, and swallow. No parent can ever really prepare to hear those words. I sat by Luke’s bed looking at him, wondering how our seemingly perfect, healthy child could have something life-threatening? Everything I knew to be so no longer was. I found myself in a very dark place. I cried for the next 48 hours – not knowing what would happen.
Luke spent the next 8 days in the ICU. He was hooked up to machines that helped him breath and he was monitored 24 hours a day by an incredible team of doctors, nurses, and therapists as we found ourselves helpless to care for our own child. So many thoughts and emotions flooded my head and heart. We were surrounded by our family and friends during this time which provided us the strength we needed to get through each day.
On January 12th, we received a diagnosis confirming that Luke had type 1 Spinal Muscular Atrophy. We then began a very grueling road dealing with insurance companies in order to get approval for the only available treatment to ensure our baby would have the best care. We experienced some of the darkest days of our lives, but from day one, we were committed to fighting for Luke and fighting for SMA advocacy.
If there is one thing, above all else that we are thankful for, it is timing. We learned that a breakthrough had just recently been made in the neuromuscular world and that the FDA had just approved the first and only treatment available for SMA patients. Before Spinraza, the majority of SMA babies diagnosed with type 1 didn’t make it to their second birthday. Thankfully, because of Luke’s age and time of his diagnosis, he was able to be at the top of the list to receive the drug.
On February 21st, Luke was the first patient at Cook Children’s to be dosed. Our life today might look very different had Luke not been given the opportunity to receive Spinraza. He might not even be here with us. However, our life does look very different than we imagined it would, and we have had to find a new normal. We have had to adjust what we wanted in this life to receive what God knew we needed. The prayers we now pray are ones we never imagined would be part of our lives, but when we look at Luke and all we’ve been through as a family, and as a community, there is no denying that his life is a blessing to all those around us.
Something like this changes your perspective in ways you can’t possibly fathom. All of my life I was chasing the next best thing, or so it seemed. My husband once asked me, “Will you ever be completely content?” From the outside my life looked pretty charmed, and it was. But then I began this fight for my child’s survival. Luke’s diagnosis has completely changed my perspective on life. As a mom of another medically fragile child once told me, “We get to look at life through a different pair of lenses.” She couldn’t have said it better. I have had to give up my own sense of control and completely and utterly trust in God’s plan for my life.
Our days are now filled with regimented schedules for Luke’s treatments, feedings, and therapies. Something as simple as going to a friend’s house for dinner is no longer simple in our world since we can’t leave the house without all the equipment he may need while we are gone. We look at our time very differently now than we did before. We are more thoughtful about how we spend our days with his needs and the needs of our family first. It can be challenging at times, but we are constantly reminded of the bigger picture and how our lives and our story are being used for the greater good. In some of the darkest moments we’ve questioned, “Why Luke? Why us?” But we have been abundantly blessed by the outpouring of love and support from our family and friends, and have been blown away by the generosity of complete strangers.
As I mentioned before, ever since Luke’s diagnosis we have become fierce advocates of SMA which has led to us starting a foundation in his honor, Luke181. The night before our son’s gastronomy tube surgery (a surgery in which a tube is inserted directly into the stomach to deliver nutrients), I read what Jesus tells His disciples in Luke 18:1, “always pray and never give up.” Luke was born on the 19th (18+1), and “never give up” is a saying we say in the SMA community. Again, God’s timing never ceases to amaze me – God is in the details!
Another saying we have in the SMA world is that you become a member of a club that you never wanted to be a part of. We are forever grateful for our network of resources. We know despite our hardest days, that we are called to serve the Lord through our son. Luke’s life has allowed us to see so much good and to live with more purpose than before. We’ve seen the good in humanity up close and personal, time and time again, which has built our faith in others and our purpose here on earth. Over this past year, I have learned that with God’s strength, we can get through anything. Good really does come from tragedy and all things work together for His good.
“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” Romans 8:28