Tuesday, April 19, 2011


I wish I was still blissfully ignorant to this pain. I wish I never had to meet another person who experienced(s) the loss of an infant (or child). I know that is naive and unnatural. Death is a part of life. I am not scared to die...when it is my time. Watching a friend experience the death of a parent or grandparent is hard. I empathize with them and wish they weren't in pain. I'm sad for the loss of a person who impacted the lives of others positively. And it doesn't make it easier that the person was older. But it is supposed to be natural to lose them before your children. Nature has failed me.

"That would never happen to me." I thought that. It's a cliche, but I honestly did. When a friend unexpectedly and completely unfairly lost her almost two year old, I thought it. I was 39 weeks pregnant with my son when we attended the funeral. The pain was indescribable. The mood in the room was a mixture of shock, grief and love. I hurt for my friend and struggled to find the right words or actions to comfort her. I left the service in tears, hugging my belly...thankful it wasn't me. I'm sure friends and family felt the same way January 15 when we notified them that Ellie had died the prior evening. I don't blame them. I hope they hugged their children a little harder that day and continue to look at them with utter amazement and humbleness. And that is ok. I really am glad Ellie could touch the lives of others, although I would rather her be here with me now.

I want to go back to a time when worry about gaining 30 pounds during pregnancy, maternity leave or saving for college were my major concerns. Of course I worried about my son's health and still do. All new parents obsess over bodily fluids and sleep (theirs AND the baby's)! But I couldn't even fathom him dying. It was an impossible outcome; something that happened to other people.

I don't want to be a cautionary tale. "It can happen to anyone. Look at her." I have given life to five babies and only have one, beautiful three year old and a 13 week baby bump to show for it. (Don’t get me wrong, I am beyond thankful for every second I have/had with each one.) Maybe I am a cautionary tale...not to others, but myself. Maybe I wanted too much. Maybe loosing Ellie and Baby K in November were Nature's way of saying, "You lucked out with your son. He is your statistic. Your miracle. You don't get anymore."

We just found out that I am a carrier of the Cystic Fibrosis gene. It is the most common fatal recessive genetic disorder in Caucasians. In people of European descent, 1:30 are carriers (higher in Northern Europe). Approximately 30,000 people are living with CF, the median age of life being the mid-30s. It is not curable, but advancements have been made and many people live good lives with CF. My husband was recently tested too and the results will be in late next week. If he is a carrier (because both parents must be carriers), our baby will have a 25% chance of having CF. Statistics have ruled my life the last 15 months. Ellie had a 20% chance of survival. Of all heart defects, her type represents 1%. Of that 1%, 1% is classified as “isolated cardiac anomalies” which means no known chromosomal connection. Approximately 20% of all pregnancies end in miscarriage. Approximately 25% of all multiple pregnancies end in the Vanishing Twin Syndrome. The chance of having a miscarriage after 12 weeks drops to 5%. We have a 6% chance of having another baby with a heart defect. We have a 1:1,000 chance of having a child with Down’s Syndrome and a 1:10,000 chance of having a child with Trisomy 18. What is the statistical probability that my son will die too? And on and on and on. With this pregnancy, I have been so focused on having a child with another heart defect and making it past the 12 week mark that I was completely and blissfully ignorant to anything else happening.

Nature is still trying to tell me to wake up. I think I have finally stopped hitting the snooze button.