“I get mail; therefore I am.” ~Scott Adams
Dear SD:
I’m impressed by your blog. I’m going through a difficult time after terminating my pregnancy at 24 weeks because of cerebral anomalies (very similar to those of the professor you mentioned in one of your previous posts … I have no idea on how severe it could be, now of course I imagine she would have been not too bad). My partner didn’t want a disabled child while I wanted her; she was still my baby and she was already there. Of course I was afraid too and we had terrible discussions, he told me he could leave and that I would be turning the whole family into a living hell. We have another little girl and I felt responsible for her too and time was very tight – just a few days between the last exams results and the legal deadline to terminate in my country so eventually I gave up and had the termination. Now I just think I’ve sacrificed my baby, I can’t stop wondering what she would have been like.
Maybe in such situations no choice is the right choice but I can’t avoid thinking I made the wrong one.
I like you speaking about heaven where Pearlsky will talk and run … I’m religious too, but with so many doubts and it’s so hard to believe I’ll ever meet my baby again. By the way we would have called her Hannah.
I don’t know why I’m writing you this, probably I’d like to know your opinion even if I’m not in your shoes and you’re not in mine.
And I responded …
I have always said that with children like these, there is no “right” decision. I find myself always wondering what if I made the other choice? Should I have? Anything from medication choices to surgeries, to color of wheelchair! Your decision, of course, was much more monumental, but you would always question going either way.
I can’t offer an opinion either way. We went on to have a second child, after Pearlsky, and did a lot of prenatal testing. I do not know what we would have done if we had a diagnosis at that point. David did end up as disabled as Pearlsky. Should we have terminated if we knew? Am I glad we did not terminate? I honestly don’t know.
Your life will be very different than if you did have Hannah and she was severely disabled. I don’t like that you felt as though you “gave up” (prefer to think you “gave in,” but not a great difference) and thus terminated.
I was involved with the termination of a pregnancy many many years ago, and have doubts and regrets. That may have been a “typical” child, one I may never have.
As for the professor you read about, here is his wife’s blog, The Socially Inappropriate Mom. Their little girl is severely disabled.
I wish you the strength to go on, because that is what we do. You will never forget Hannah, and always wonder “what if” but you must not let it take over your life. I believe you will catch up with her in heaven, why else would there be a heaven?
Thanks for writing. Be strong …
That email came in yesterday, and the author agreed to allow me to post it. And there is my response. What’s yours? (Comments such as “the partner should have been the one aborted” will be removed)
I teared up reading this – my heart goes out to her – we never know what the right choice is. Much love to her.
Sniff. Was that…a soft, squishy side I just saw of you? OMG BFF XOXO!!!!
OK, sorry, just lost it a little for a second. I thought the response was great. Maybe you should take over that ‘Dear Prudence’ asshats column…
That is sad. I can’t say what is right, but with both my pregnancies, I opted to not find out anything including sex. My Hannah was born perfect, but actually not. There was a slow growing, benign brain tumor which started while in utero. She is definitely not the perfect “normal” anymore. She my perfect “special” girlie. Que Sera Sera.
To the letter writer: I am so sorry for the loss of your Hannah. I terminated my first child in January for Trisomy 18. I can’t say I was in your shoes, because it was the decision that both my husband and I wanted given the prognosis of our baby. That said, I live with sadness and wondering what could have been. There is an online community at babycenter.com: Termination for Medical Reasons that I invite you to check out. All of us there have experienced the loss you have been through.
SD- You gave a wonderful response. As usual, you’re so compassionate and thoughtful. Pearlsky hit the jackpot with you.
Though it would tear me apart, I would terminate. It’s not for fear of what my life would be like, it’s for fear that I would predecease a child too disabled to self advocate. My child would then be placed in a state or community facility, and I would have no way to protect them. Although there are good, kind, loving places, what I have seen is predominately facilities where people who are disabled are warehoused for profit, and that’s terrifying.
Any child can, of course, be born typical/normal and then develop significant disability, but the odds are lower than for a child who is already showing signs in utero of a cognitive disability.
I can certainly relate to having all your dreams of a perfect child, perfect pregnancy coming swiftly to a painful end at 24 weeks. I am so sorry for the loss of her Hannah.
I have two friends who had to choose what to do with a scary result from prenatal testing. One, a blog friend, chose to terminate because her husband responded very much like your writer here. Another, a real life friend, chose not to terminate because her husband demanded she not. After a very dangerous and difficult pregnancy, their son was stillborn at 39 weeks. We are partners with our husbands in our pregnancies, but these situations test relationships in an awful way and who knows how any of us will respond until we’re in them. So I won’t judge him either. Other than I’m so sorry, I also want to say that I hope she has the support she needs in her real life, and that her husband can find it within him to be a true partner in her grief.
Wow I can relate……first off very kind SD.
To the author I am sorry for your loss. My first child is severly disabled and if I woukd have known during that pregnancy I still would have had her….I think. My second girl is “typical” as for a third pregnancy well at five months we found out it had the same rare disease. I had an abortion my Heart ached and screamed I loved that baby already but my head….well my oldest is such a daily struggle and I didn’t think we could Handel it emotionally or physically….I didn’t think we would do justice to either of our 2 children if we had the child. It’s been 10 years since that decision it still haunts me….since then I had my son who is “typical”. Time doesn’t heal pain like people say….just try to make peace with yourself and continue to move forward. Remember there are people who understand you and do not judge…good luck!
I’m a bit of an outsider to this community, because I have no children at all — I know SD personally so I read this blog to see how he and Pearlsky are doing. So I can’t comment on the pregnancy or any “what ifs.”
What does stand out for me is the possibility that this very difficult decision was made with the writer and her partner not being “on the same page.” Since they have a daughter, I would recommend that the writer seek professional counseling and, if possible, couple/marital counseling WITH her partner, because such a monumental and heartbreaking decision that was mostly one-sided has a tremendous potential to put a huge wedge in their relationship — and for the sake of their daughter it would be best if they keep their relationship as strong as they can.
To the writer from “The Professor’s Wife”:
I was touched by your story and am sorry if you felt pressured to make your decision. I don’t know how it must feel to have made the decision you made but I can share a little with you how it feels to be living with the aftermath of choosing life for a child with so many challenges.
I have realized over the past two years that we made the wrong decision. I love our daughter Aria so much and am thankful that she is at least capable of experiencing some joy but I realize that she suffers every day because of a decision we made. When we chose life for our child we tricked ourselves into believing we were making a selfless decision. In hindsight I realize that we were being very selfish. We didn’t want to be “those parents who terminated”. We didn’t want to live with the “what ifs”. Now Aria lives with the concenquences. She is on a ton of medications including morphine and valium four times per day just to make life tolerable. She is deaf and blind and spends far too much time in the hospital. Our entire family has been affected. Our once “typical” child is far from typical at this point and I fear that the bulk of her behaviors come from being thrown to the wayside time and time again. The guilt of having to chose one child over another is soul crushing. Watching your normal child regress because you’ve spent months and months and months in a distant hospital with your other child makes you fell like a total failure.
I can’t tell you what would have been for your sweet Hannah since outcomes for children like ours tend to be mixed and unpredictable but I can tell you that I wish I had been strong enough to make the truly selfless decision and prevent all of this suffering. You made a SELFLESS decision. Anyone who tells you otherwise simply does not get it.
Please take care of yourself and feel free to get my contact info from SD if you’d like to communicate further. The “Best of” section on the upper right hand corner of my blog is a good place to get some insight into a day in the life/psyche of Aria’s mama.
I appreciate the honesty, care and candor of this discussion.
Rachael A,
Your comment was the most touching, honest, moving piece of writing. Your willingness to share your thoughts should earn you whatever the Unitarian Universalist equivalent of sainthood is. I am in awe of you every single day, but all the more so after your comment above.
Thank you and the author for posting this personal email. I would have written you a similar email if I was brave enough. It has been one year since I said goodbye to my son. I am heartbroken and only recently pushing forward. It did take over my life. Many days/ weeks under my covers. It’s still hard and I wonder all the time if I gave up on my son. Did I fail to give him a chance? What if? I decided to go back online and check on the children I was following during my two weeks of hell deciding what to do. I remembered two blogs I followed/ stalked. It was my best and worse scenario. One led me to you yesterday and it helped so much. I had to thank you. I still have a long way to go. I still have to decide if I want to try to have another child. I am so afraid and running out of time. I truly hope this life of 100 years or less turns out to be a test. I hope there is a point to all this pain. Heaven better be awesome. I am counting on it. Its all i have to keep me going. I asked/ begged for forgiveness. I am broken over it. I hope one day I will understand why. I am counting on heaven. Until then, I will continue to try to wake up for my other kids, help my PDD-Nos son, love my husband, work and prepare for the future. I am a spiritual person. I believe in god but hardly go to church. I guess I make up my own rules. Not very catholic I know. But I try. There are things I don’t agree with. My heart breaks when they talk about abortion in mass. They don’t know what I have been through. I am supposed to pray with them to end abortion? What I did was a “culture of death”? I hate and can’t stand I participated in the death of my son. I have a whole in my chest for it. NO ONE should participate in such a thing. I hate that I was in that position. I love my son.
Sorry, I am starting to vent and going off track. I will never get work done today if I let myself go down that road again today.
I just want to say sorry for the road your family is in. I wish I had words like you. I wish I could comfort you and your family some way. I truly admire the soul/energy you are. I am sorry you have this task and hope in heaven you will hear thank you dad. I hope this life and pain will seem like a small price when we get 1000-2000 years of happiness with our loved ones. Heaven better be awesome.
Kitz