Our Baby Story: Chosen

On my 40th birthday, I received the most precious gift:  a positive pregnancy test. I was elated and screamed for my husband, who was packing our bags for a trip to Maine the very next day. I showed it to him, and we tearfully embraced over our newly discovered miracle and called the doctor’s office to make an appointment to confirm the pregnancy upon our return to Kansas City. We told only our parents and set off for Maine.

Our trip was filled with conversations about having a second child, what we would name him/her and how we would make our house work with two children. Being a stay-at-home mom, I remember thinking about how precious my time had been with our daughter and wondering how she would adjust to having this new person invade her space.

Upon our return, I went in for a sonogram. We were thrilled to see the heartbeat and start planning life for another child. Given my age, I elected to do testing for Down’s so that we could best prepare ourselves for this new little one.   On Oct. 23, at 14 weeks, I received a call that changed our lives. It was a genetic counselor from Children’s Mercy. They wanted to meet with us at noon. It was 11:00—so I knew the urgency was not a good sign. I lined up a sitter, picked up my husband from work, and we went to our meeting. I thought our child had Down’s and had always felt a special connection to Down’s children, so I wasn’t sure why they couldn’t tell me this over the phone. The news we received was not about Down’s—I had never wished for a Down’s child more than I did leaving that meeting. Our child, who was a boy they informed us, was a Trisomy 13 baby. The odds were so staggering we thought for sure the test was wrong. So we got a second opinion. It came back the same.

Knowing your child is not going to survive once he is born is obviously an incredibly hard journey. It was filled with grief, heartache, questions, doubts, anger and confusion—yet at the same time, we also found ways to celebrate his life. Thankfully, we were referred to a Kansas City-based non-profit, Alexandra’s House. As a perinatal hospice, Alexandra’s House offered us hope. They connected us with other families that had gone through the same or similar experiences. My husband and I both came from loving and supportive families, yet no one in either family had experienced infant loss, so Alexandra’s House provided us a comfort that literally no one else could. We cannot say enough about this amazing and wonderful organization and its staff.

Prior to our son’s diagnosis, we had already chosen a boy’s name: Isaac Paul. The biblical Isaac was asked to be sacrificed to God, but then spared. We clung to the hope this would be the journey our Isaac would endure. We elected not to search and scour the Internet as the stories and photographs were too painful for us to face. We prayed intensely and stayed in most of the winter. Facing others that were pregnant and excited was so difficult even though we knew everyone deserves that happiness.

On Feb. 5 of this year, because I had developed preeclampsia, we were hospitalized. I was 29 weeks. Our midwife had told us early on that this often happens with this diagnosis. While we were disappointed, we were not completely surprised. After being told we would stay in the hospital until Isaac’s birth, Isaac left our world the very next day. His heart stopped, and it felt like ours did too.

For anyone who has lost a child, you know the pain is unbearable. You think that you will never return to any sort of normalcy. Everything changes. Had I not had my faith to cling to, getting up each day would have been impossible. Our church community and family helped (and continue to help) me through days that I felt I couldn’t move. The kindness and generosity of others brought tears that helped cleanse me.

The thoughts that keep me going to this day are simple but powerful: I know that one day my husband and I will be reunited with our son and that he did not suffer or despair when he entered into this world. This has taught me to value each day and that the miracle of life is not one to be taken lightly. It makes me hug my daughter tighter and cherish even the smallest of milestones. It has also made me much more sensitive to miscarriage, death and to children who have life challenges.

Many have asked us how we could choose to go on this journey once we knew Isaac’s diagnosis. My answer is we wanted to know and love him the way any mother and father would. We didn’t get to do this in the way we wanted, but we cherished the time we did have with him. Being a loving parent doesn’t end with your child’s death. It is a role you will fulfill with honor, no matter how much time you get or what the circumstance is.

For anyone that is going through this journey, please know you are not alone. Seek counsel from Alexandra’s House if you feel there is no one to turn to. Even though I can’t lie and say any part of this journey has been easy, it has given me great comfort to know there are others who have loved and supported us every step of the way.

At the onset of our son’s diagnosis, I told my husband I would not survive if Isaac died before I got to meet him. Now on the other side of his life, I realize I did survive and some wondrous day I will get to meet him. I eagerly await that day and, until then, will do my very best to honor his life while I am here.

Photography provided by Brindy Nichols, Now I Lay Me Down To Sleep (www.NowILayMeDownToSleep.org).