In the fall of 2011, my husband Patrick and I had been married eight years and our family was rapidly growing. Our oldest child had just turned six and we were expecting our fifth child in December. John Paul was born on December 6, 2011. We knew immediately that something was very wrong. The delivery itself was traumatic, during which his arm was broken. When he was finally delivered, he didn’t make a sound. He couldn’t breathe. He was barely moving. He was whisked away to the neonatal intensive care unit. In the days and weeks that followed, we gradually started to understand the severity of John Paul’s condition. When he was 5 weeks old, he was diagnosed with Spinal Muscular Atrophy (SMA). We learned that SMA was a genetic, progressive and terminal neuromuscular disorder. Gradually, every muscle in John Paul’s body would weaken and eventually waste away. Usually death is caused by complications from a common cold because of respiratory weakness. You can imagine how we felt being told that our son would die from complications of a common cold, knowing that we had four children at home, several of whom were not yet adept at covering their mouth and nose when they sneezed or coughed.
Of course, Pat and I were devastated. We were trying to wrap our heads and hearts around the reality that confronted us. At the same time, we were also quickly falling desperately in love with our son. We saw his first smiles and he could even hold my finger in his hand. During our time in the NICU, it was a rollercoaster of singing lullabies and whispering sweet nothings one minute and the next using emergency procedures to bring his oxygen saturation levels back to normal because he couldn’t clear his airway the way most people do by swallowing or coughing.
We had gleaned some hope from families that we had been put in contact with who had children with the same diagnosis. They were living at home with their families, growing, learning and loving despite their weak bodies and many medical issues. In many cases, they were living way past what doctors were anticipating. We desperately wanted that for JP. We wanted our other kids to get to know their new brother and we wanted JP to feel the love and joy of a home and his family.
When he was 7 weeks old, JP had surgery for a G-tube, to enable us to feed him with a feeding pump and a tracheostomy because he required constant breathing support from a ventilator. When he was 3 months old, we brought him home.
It was beautiful to see the other kids interacting with him. Joey learned to use the suction machine and would practice reading to him, Liam loved learning to do his physical therapy exercises with him, Madie danced for him, and Ben would kiss him and play peek-a-boo. At every meal they would fight over whose turn it was to give him his medicine or hook up his bag of formula to his g-tube port. This was our “new normal” and we loved it.
We also had some pretty major struggles in getting adequate nursing care and ended up doing much of his 24-hour care ourselves, taking shifts through the night on weekends, frequently jumping from bed to assist a nurse in clearing his airway and help him recover his oxygen saturations to normal levels, taking him to appointments with just about every specialist you could name. He was hospitalized several times for infections. We also observed him quickly losing strength. Within a few months of his homecoming, he had lost the ability to smile, what little movement he had in his fingers disappeared and he was increasingly losing eye control.
Having a child who was so medically fragile introduced new challenges to our marriage as well. Never before was communication so critical. In some ways, it was easier to understand where the other was coming from. We were more sympathetic and patient because we were both going through the same sleep deprivation, emotional exhaustion, and tension of caring for a child whose life was not a given from one moment to the next. We were more unified and accommodating, and we literally knew where the other was at any given moment. John Paul gave us opportunities to love each other in new ways, like delaying waking the other when it was time for the 2 a.m. shift change or making sure the other got “snuggle time” with JP. We were reporting to each other when we needed to step away from John Paul’s side so that the other was “on call.” We also literally didn’t have the emotional energy for petty fighting. Did both of us snap sometimes in exhaustion, stress or frustration? Absolutely, but neither of us put that much weight on it. We both knew we were as vulnerable to the same weaknesses. Things that weren’t critical to the mission were quickly forgotten.
In other areas, our communication was more difficult than it ever had been. We had to make decisions about the future of our family and about how to do what was best for our son who was on life support, and we didn’t always agree. Little by little we learned that even when we disagreed quite strongly about the course we felt our family should take, we had to respect and trust the intentions and heart of the other. Resolutions were not always made overnight. Ultimately, because we both truly did have the interest of John Paul and the entire family in the forefront, when action needed to be taken, we were able to see eye to eye with time and prayer.
In February of 2013, we learned that much of John Paul’s brain had wasted. There were also new concerns that he had developed a type of nerve cancer. With a lot of prayer and peace, we discerned that God was calling John Paul home. On February 20, 2013, our parish priest said a Mass in our family room and, surrounded by family and songs of praise, JP joined the saints in heaven.
It has been a little over a year since John Paul died. Pat and I are learning how to support each other in the different ways we grieve. We are learning to be better listeners and better sharers. There is a deeper bond between us now. I can only compare it to what I imagine the bond is like between two soldiers who are fighting in the trenches together. I say “fighting” because even though John Paul isn’t with us now, the war is not over yet. It won’t be until we are both reunited with our little boy. There are plenty of battles left to fight and only God knows what they will involve. They may include more children with SMA. They may include more healthy children with other struggles. They will include the challenge of helping our children get to heaven.
Many times in the last two years, it took getting to that breaking point, whether it was feeling like getting adequate nursing care was impossible, receiving yet another call with bad test results from a doctor, or snapping at my husband in exhaustion, before I surrendered the circumstances to God. Ultimately, God did work everything out, but had I trusted Him with it sooner, perhaps I could have appreciated His hand in those moments rather than in retrospect. There are many statistics about the damage the death of a child can do to a marriage. Sadly, I don’t doubt their validity but it is a number that is unnecessarily high. When God gives us more than we can handle, it is because He wants us to entrust it to Him, let Him take care of it. We can only fail if we try to do it alone. Of course the myth is in thinking that we can do anything without God. Whether it is sharing the last piece of cake or burying a one year old son, we constantly rely on the grace that God gives us in our vocation to get our spouse and children to heaven.
About the author: Elena Kilner is the author of Letters to John Paul: A Mother Discovers God’s Love in Her Suffering Child, http://mooringspress.com/letterstojohnpaul.html.
About the photo: Patrick and Elena Kilner with their children, used with permission.