Missing My Baby Girl

My Audrey Grace.

My very much wanted and planned for second child. My sweet pea. My baby who had Trisomy 18, a third copy of her 18th chromosome… a condition considered “incompatible with life.”

We welcomed her into the world on October 15, 2003, knowing well in advance the ultimate outcome. My baby girl would have been 11 this year. If she only had two copies of that 18th chromosome, she would have been full of life and hormones about now. She would be bugging her older brother. She would probably be driving me crazy… and we would have been crazy about her. Life would have been very different indeed.

But life doesn’t always turn out the way we plan.

I told my mom when I was a teenager that I thought I would have a child with different needs. She told me I wasn’t normal 🙂  She said that “normal” people see themselves with “normal” children. When I found out that Audrey wasn’t “normal,” I had a sense of peace and calm. I knew God had prepared my heart many years in advance to be the mom of a very special child. I didn’t plan to have a child with different needs, but I somehow always knew I would.

Knowing in advance simply does not prepare one for the onslaught of care and decisions. We knew at 15 weeks and 6 days gestation that she would not be with us for long. We chose to carry her to term and spend as much time as we could with her. We purposely chose to face whatever came our way.

Knowing in advance didn’t make the loss easier. Visiting funeral homes instead of pediatricians was never on my radar for a pregnancy activity. Choices of what type of care to pursue and not to pursue? They don’t have a class on that. You visit on line sites and pray a lot. You listen to others who have traveled the road you are traveling. No two families have the exact same journey, just like no two children with any Trisomy (or any birth defect, for that matter) are alike. You do the best you can with the information you have at your disposal at the moment. Sometimes the choices are easier. Sometimes the choices are almost impossible.

When the time comes to say, “Good-bye,” whether you knew you were going to lose her or not, it is gut wrenching. I believe I had it a little bit easier than many. I knew ahead of time that my daughter wasn’t built to last. It wasn’t a shock. Did I feel my insides get ripped out? Yes. Did I cry? It took about two months, but I was able to cry. Did I get angry? Of course. Seeing healthy babies come from moms who didn’t care, drug moms, babies left in dumpsters… it wasn’t fair. We could have given our much wanted second child a beautiful life. Grief ebbs and flows. Some days are easier than others. Some days you can barely function. Some days you can take solace in the care of those who don’t know what to do or say. Some days you can laugh at your other children’s antics or a TV show. It’s okay to laugh, but just because you are able to laugh doesn’t mean  your grief is instantly over. Everyone must take their own journey through this. Each journey will be unique. Some journeys are shorter. Some are very long. Be gentle with yourself. Healing will come when it comes.

In the end, you have to believe that you did the very best you could. You have to know that following your heart was the best choice. It isn’t easy. My grief journey started before my daughter was born. It intensified when her soul left her body as I held her in my arms, just 40 minutes before Mother’s Day in 2004. I have made it to the plateau they call “Acceptance.” Does that mean I have ceased grieving? No. It just means that the waves of grief are much farther apart now than they used to be. There are still days I question, days I wonder what would have been, days I long for her hugs. That will never end.

She will always and forever be my baby girl.

My Audrey Grace.
She was a wiggly one and liked to pull her oxygen tube out… we had to gently tape it in place.