If you read my first blog post (click here), you know a little bit about me. One of the things people are often surprised to hear is that I am one of the many, many parents who has lost a child. I am thankful it wasn’t an accident or a sudden shock. I know the trauma would have been so much worse if we had lost her unexpectedly. We knew before my daughter was born that she was going to die. She had an extra chromosome. The presence of a third copy of a chromosome is called a “Trisomy.” An extra 21st chromosome will give you Down Syndrome. An extra 13th will give you Patau Syndrome. An extra 18th chromosome will give you Edwards Syndrome. Down Syndrome is the most common Trisomy, followed by Edwards Syndrome.
When we had Audrey Grace, the statistics I found said that 85% of Trisomy 18 pregnancies will end in still birth or miscarriage. Trisomy 18 affects about one in every 5000 pregnancies. Roughly 1000 Trisomy 18 babies are born alive in the US each year. Of that 1000, 50% will not live to be a week old. 80% will not live three months. 90%+ will not celebrate their first birthday. My baby girl defied all predictions and lived to be six months and 23 days old. 206 days. Seven days shy of seven months. Our life with a very fragile, terminally ill baby was not easy, but it was a blessing. Given the option to have never had her or to have had her and lost her, I would choose to look into those wise, gray eyes every time.
My Audrey Grace.
She was a wiggly one and liked to pull her oxygen tube out… we had to gently tape it in place.
One night, she kept pulling it out, making it blow into her eyes. I ended up taping it to the end of her nose, LOL. Don’t worry, it didn’t hurt. It just looked funny.
When we had our precious Audrey Grace, my son was four. He had just turned four the month before she was born. I was so blessed to be able to stay home with both of my children through this time. We had time to build memories. We knew her time with us would be short. We chose life. We chose faith. We chose love.
My baby girl passed away in my arms 40 minutes before Mother’s Day in 2004.
Today, I sat down to write a book I have been wanting to write for ten years. I am writing a book that will help other parents with a pregnancy that has a terminal diagnosis due to a Trisomy or other chromosomal abnormality explain to their older children how their new sibling won’t be with them long. It will be a short book, probably a picture book, written from the viewpoint of a three year old. It’s not an easy thing to write, but I have always said that if my experience could help just one other family… and I already know that it has. God has continually brought into my life people that need to hear my story or people that just need someone that had “been there.” This book is my way to help more people. This is my chance to tell how we prepared to survive the worst thing you can even imagine.
Today is my “anti-procrastination day.” I am writing my story.
My children in the NICU the day after my daughter was born.
What have you been putting off? What is in your heart to do or say? Do you have a story to tell? Remember what Eleanor Roosevelt said (“You must do the thing which you think you cannot do.”) and just get out there and do it. Nothing worth doing, nothing worth having has ever come easily.
loving the mom life 