When we paused to share in silence some photographs that we took harmlessly that fateful morning, now nine months later, the tragedy ended; our son passed away, there was a feeling of the surreal, yes even now. We hope that we never really know why this happened to us, and yet we are often told that we were ‘chosen’. That does not feel very comfortable, I can assure you. However, people are only 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 forget. Another thing we’ll never forget is Ethan’s concern for his mom and dad as we cried on the way home. It was another eighteen days before we discovered our baby’s plight: amniocentesis confirming Pallister-Killian syndrome (PKS), an incredibly rare condition that affects chromosome 12.

At that early stage we were told that our baby deserved “comfort and respect.” The looks on our geneticists’ faces when we said it was not our place to finish spoke aloud, yet respectfully they did not say a word. They honored what was the only thing we could do. We were praying for a miracle. Many people joined us praying that God could deform the formation of our little one’s internal organs, just 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 the diagnosis and the eventual birth of Nathanael, we took many opportunities to take him out, enjoy his movements in the womb, meet our little one. We treasure every memory our imaginations could create. Our obstetrician dubbed him a “cheeky little one,” as he often moved suddenly during Sarah’s eight amni-reduction procedures – two liters of amniotic fluid were drained each week. Nathanael had a lot of character!

When it was finally time for Nathanael to be born, our only hope was to find him alive. Our expectation was that he would pass away quickly in Sarah’s arms. We were devastated when he passed away due to a prolapsed cord due to shoulder presentation during induction. We had mourned our loss a lot up to this point. The day after Nathanael was born, Heartfelt came and took beautiful pictures for us. That night we sobbed and sobbed with Nathanael in our arms. But we spent 179 hours with our little man until we finally said goodbye on November 7.

We knew it was not 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 were determined in the first moment. We entered our reality anew each day and we were given the joy of the moment, obtained by a very simple courage to do what only we could do. Does any parent do anything less for their child?

We now know that the experience we undergo is not only for ourselves, but also for others, just as the experience of others sometimes encourages us. We have so much warmth in our hearts now for those who have lost a baby. We are connected through pain and yet we are connected as sister and brother.

Nathanael will live in our memory, forever!

© 2015 SJ Wickham.

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