It wasn’t up to us to finish
As we paused to silently share some photographs we innocently took that fateful morning, now nine months later, the tragedy is over; our son, passed – there was a feeling of the surreal, yes, even now. We hope we never really know why this happened to us, and yet we are often told that we were ‘chosen’. That doesn’t feel very comfortable, I assure you. However, people are just trying to help.
My wife, Sarah, and I took our 15-month-old son to the ultrasound rooms. It was July 1, 2014. A day none of us will ever forget. Another thing we will never forget is Ethan’s concern for his mom and his dad as we cried on the way home. It was another eighteen days before we discovered our baby’s plight: the amniocentesis confirmed Pallister-Killian Syndrome (PKS), an incredibly rare condition that affects chromosome 12.
We were told at that early stage that our baby deserved “comfort and respect.” The looks on our geneticists’ faces when we said it wasn’t our place to end up spoke loudly, yet they respectfully didn’t say a word. They honored what was the only thing we could do. We were praying for a miracle. Many people joined us in praying that God would twist the formation of our little one’s internal organs so that the lungs would have room to develop. We had faith that anything could happen and our role was simply to be true to our little life inside Sarah.
During the four months between diagnosis and the eventual stillbirth, we take many opportunities to take it out, to enjoy its movements inside the womb, to get to know our little one. We treasure every memory that our imagination could create. Our obstetrician nicknamed him “little cheeky” as he often moved suddenly during the eight amnioreduction procedures Sarah had: Two liters of amniotic fluid was drained each week. Nathaniel had a lot of character!
When the time finally came for Nathanael to be born, our only hope was to find him alive. Our expectation was that he would quickly pass away in Sarah’s arms. We were devastated when she passed away due to cord prolapse due to shoulder presentation during induction. We had grieved our loss well up to this point. The day after Nathanael’s birth, Heartfelt came by and took beautiful pictures for us. That night we sobbed and sobbed with Nathanael in our arms. But we had 179 hours with our little man until we finally said goodbye on November 7th.
We knew it wasn’t up to us to finish. We feel an instant confirmation of this. We never doubt our decision. We received a lot of peace, a peace that we cannot understand, I think, because we resolved ourselves in the first moment. We entered our reality anew each day and were given the joy of the moment, procured by a very simple courage to do what only we could do. Does any father do anything less for his son?
Now we know that the experience we suffer is not only for us, but also for others, just as the experience of others sometimes encourages us. We now have such warmth in our hearts for those who have lost a baby. We are connected through pain and yet we are connected as sister and brother.
Nathaniel will live in our memory, forever!
© 2015 SJ Wickham.