A Sensitive Topic

Warning: I am touching on a controversial topic.  I am trying very hard to share my feelings but also be respectful.

One of the things I like to do is to monitor the “stats” of my blog- how many views, number of visitors, search terms, where people link my blog.  It makes me feel heard.  I am amazed seeing how far my blog reaches (hello South Africa, Montenegro and Finland!).  And sometimes I stumble on other blogs I want to follow.

There is one site that links to my blog that I can’t see- it’s a closed group on baby center for those who have terminated a pregnancy for Down Syndrome.   I cannot see what they’ve written about my blog, but I do know it falls under the heading ”the mom who chose to carry her t21 pregnancy to term and the result.”  I am not here to pass judgment on women who choose to terminate and women who choose to continue- whether it be a baby with Down Syndrome or average chromosomes, whether she be a healthy baby or one that will be born sick, if even alive.  I am not here to make anyone feel bad about the decisions they make.  I recognize I cannot possibly understand other people’s circumstances, and so I support women in their own decisions about their bodies and their families.

But I hope no one reads this blog and thinks- well, that’s too hard, so I might as well save myself the heartache and just terminate.

This blog tells the story that not every pregnancy turns out the way you would think.  Accepting a Down Syndrome diagnosis did not give me a take home baby.  But choosing to terminate might have ended a pregnancy that would have ended in health.

People can terminate their pregnancy, whether it be complicated by Down Syndrome or not.  That is there personal choice; I have my own personal views.  There are things I would hope I would do in my own life when faced with certain circumstances.  I also recognize I can’t know what decisions I would make until I am faced with them.  However, my professional and political views are simple- support women throughout their life cycle, in whatever way they need.

If there were a woman in this online group who was my patient, I would care for her as gently as I would any other woman.  In fact, I have cared for women who have terminated pregnancies with Down Syndrome.  I want this group to know that their choice was hard, that I do not judge them.

Though I do want to share a few thoughts with these women.  To the women of that group who have read my blog:  Please do not use my baby’s story as justification.  I don’t want Mabel to be anyone’s reason she uses in choosing to terminate her pregnancy.  You had your reasons, and I am sure they were good ones.  Since you are in an online support group for terminating, I can tell you are struggling with your decision.  You were faced with two impossible choices: terminating a pregnancy and continuing one when you are unready. You made the best decision you could with the information you had at the time.  But please leave Mabel out of it.  I made the difficult choice to carry her and give her the chance, understanding my risk of losing her.  She deserved every second of the six hours she lived.  Despite my heartache, I would do it again, even knowing the outcome.

The First Father’s Day

When I saw those two pink lines, he was the first one I told.  He was happy.  He said yes, when I asked if he willing to raise a child with Down Syndrome.  When I would wake up in the middle of the night, crying as I adjusted to the news that our child would have Down Syndrome, he reminded me that it would be ok.  He signed up for weekly emails from babycenter so he knew what the baby would be doing each week inside me.  He was the one who first called her the Karate Carrot.  He would put his hand on my belly when we went to bed, hoping to feel her kick before he fell asleep.  As we heard obstetricians tell us over and over that the low fluid meant our baby had a good chance of dying, he held my hand.  He crawled into bed with me and held me as we cried together over the fate of our baby.

He stayed in the hospital almost every night I was there, making his commute in snow strewn streets twice as long, just so that he could be there just in case our baby was born.  He climbed through knee deep snow in his work pants to get the blanket we wanted to hold her in, because she might come that very night.  He rubbed my back, held my vomit bag and stood by my side throughout the pain of labor that brought his child into the world.  He cut her cord, artfully creating her bellybutton, the only person I would gladly want to sever the tie between me and my daughter.  He listened carefully as the doctor gave the first sad updates that her death was imminent and then came back to me, relaying the info kindly, bringing me down gently out of the optimistic bubble I had built after hearing her cry.  He smiled when the NICU nurse said he could hold her.  He held her like a champ, like this is what he was born to do.  He gave her back to me, even though he wanted to hold her longer, because he knew my chest was the most comfortable place for her to be.  He did not flinch when the doctor said it was time.  He let them take out the vent, even though he hardly had the chance to get to know her, because he didn’t want her to be in pain either.  He put his hand on her back, so she would know her daddy was there with her when she took her last breathes.  He gazed at her with such sad eyes after she died and bathed her with such gentle hands.  He let the nurse take her, when it was time to say goodbye.

He held me up through her funeral.  He played with his little goddaughters in the days after she died because he just can’t not be good with kids.  He visits her grave with me and listens as I read to her.   As I cry over our daughter, taken from us too soon, he says all the right things.  “I know.” “I’m sad too.” “I love you.” He’s my rock, the father of my child.  He’s such a good dad.

Look at him smiling

Look at him smiling

Chris holds Mabel for the first time.

Chris holds Mabel for the first time.