Being a woman of faith, I began bargaining with God to let her live and I would do anything in return. Of course, there were signs of hope before she was born. Like when we were introduced to a baby boy with the same syndrome as our daughters. How he survived but needed constant medical attention. I now feel it was God preparing us for what was to come.
On January 11th, 1995 our baby girl came into the world by C-Section, with a little whimper, surrounded by a team of medical professionals. We briefly met, then whisked away to the NICU to be hooked up to various tubes, and wires. We counted our blessings, she had survived birth, this was our first miracle.
Our baby was transported to a children's hospital where they could run various tests and let us know what to expect. The next day we were escorted to the children's hospital to see our daughter. I remember seeing her in the incubator all 7lbs 7oz of her, hooked up to oxygen, wires, and monitors. It was all so surreal, but this was our second miracle. She has lived longer than expected, maybe there was hope.
We soon met with the doctor and nurses who informed us that she would not survive without the support of the machines, essentially life support. They provided us a room where we could hold her, take pictures and have family members visit. This was our last miracle.
Our decision was to disconnect life support and hold her until she took her last breath. It was a decision that changed me as a person, forever.
Over the next few months, I suffered a deep agonizing pain, something I never had experienced before. I was still a mother, but not the same as before. Going through the motions of caring for my son but still grieving for the child I had lost.
As time has gone on, as it does whether we want it or not. I became busy with life, adding another son to our family and a Brain Injury diagnosis for my oldest child life went by fast. I found out early that people don't want to hear about such tragedies, so I remained quiet as women would exchange birth stories. Even when someone would ask how many children I had I would comment with two boys. Then the dreaded second questions, "you didn't try for a girl?' I would just smile and nod no, feeling guilty as if I had somehow betrayed my daughters memory. Difficult choices to make on a daily basis, but I found that the comments and looks I would get explaining what had happened to our very real middle child were far worse than the denying I had her at all. Either way it was pain, and a small question would instantly put me back to a time that was the most horrible and also the most beautiful time in my life.
I spoke of three miracles God gave us. She survived birth, she lived long enough for us to meet her, and we have memories that have lasted forever. The old adage that "time heals" well in a way that has been true for me. It's been twenty years, and I think of her often, I look at her pictures, I visit her grave and decorate it all in pink. Each year that has passed has provided less painful memories, has helped me believe in miracles, has helped me feel grateful for each and every day.
We will be together again one day
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