Ask a guy about abortion.

Miscellaneous and Personal Stuff I Must Share
21

The tough thing about it was most of the parents with Down that we communicated with described their kids as incredibly loving and almost absurdly upbeat most of the time. I think that disposition can be kind of a “symptom” of the syndrome, actually.

But, yeah, consensual decisions between two well-informed adults, vs. two adults trying to decide the fate of a life that simply cannot have or express an opinion on the matter at that juncture are two pretty different things. There’s precious little consent involved in the act of being (none at the earliest stages of life), and there’s zero certainty in the future for any prospective parent, I think, of how well one will handle it.

22

I’m genuinely sorry to hear your story.

And no, you weren’t cowards. You did what you felt had to be done. Particularly since you had no way of knowing how bad anything might have been.

As you said, very few people think of themselves raising a child with DS when they first get the news. When my wife was pregnant, her OB was as adamant as she could be that an amnio happen, and my wife refused. Her take on it was that she was Catholic and wouldn’t terminate no matter what. Long story short: our daughter with DS is currently fourteen. Just like you, I certainly didn’t see myself raising a child with DS. And there have been times when I thought I was losing my mind. Her open heart surgery at eighteen months. Hell, just finding out that the pediatrician thought that there was a possibility that she might have DS, and the waiting for test results. At times, it can be a hellishly difficult situation. That said, I still understand completely why the two of you did what you did, and support you (well, as much as some yutz in the midwest can support someone in Boston) in your decision.

And you did precisely the right thing. Both of you. I send out my best thoughts to you, and hope against hope that the next experience is without the grief and angst that this one had.

Yeah, tell it to my daughter. Hell, tell it to me. And I will laugh in your face.

I love my daughter beyond words. And would cheerfully, with a song in my heart and a smile on my lips stomp into components of components anyone who would try to harm her. But there are still times when I grieve for the child that I wanted and expected. And as much as what you went through hurt, it also hurts to want your child to not have DS when you know full well that there’s not a damned thing you can do to make that happen. You have my sympathy and understanding.

Waste

23

** Loopydude**, please accept my condolences and extend them to your wife.

In reviewing this thread, however, I do not see a debate (and I am not at all sure that I would want to see a debate).

I’m moving this to MPSIMS (although there is nothing mundane or pointless about your tragedy, it is our default Forum for discussing personal events–particularly when there is no real conflict in the discussion).

[ /Moderating ]

24

Loopydude,

You have my sincerest condolences and best wishes for a future without such situations and desicions.

I also want to thank you for having the courage to post such an intimate and emotional event and to take questions about it.
Have you run across anyone who (you thought) disagreed with your decision? How did you handle it?

25

No questions or anything. Just hugs.

26

Loopydude and wife,

Thank you so much for sharing your story here. I fervently hope that you’ve already absorbed your lives’ share or sorrow and that your future together is as bright and joyful as this part has been gut-wrenching.

From the heart,

Rysdad

27

Thank you for sharing this.

28

Hi,

I just turned 38 and 6 months ago gave birth to my first child. Just so you know, there is a new test called a neucal translucency test that can be given at 12 weeks that does a pretty good job of testing for downs with no risk of miscarriage, it’s done via a sonogram.

I was a high risk pregnancy, they missed my window for the neucal test by 2 days, my afp test came back elevated risk and was rather hog-tied into having an amniocentesis. They had to blindfold me for the test. I had to wait 3 weeks for the results and fortunately, everything came back normal and I was fortunate enough to give birth to a beautiful, healthy, pointy-headed, hairy little monkey.

I have no words to comfort you and your wife, except to say that life gives you choices and you have to do the best you can, we can’t see into the future. You will never know what that childs fate would have been had you decided to carry it to term. What you do know, is that your child might possibly have faced a very dibilitating, painful, frustrating life and that while you both had that child, you loved it and did what parents are supposed to do, make the best decisions you can. Very few people choose the path of martyr. I am exceedingly proud of you and your wife for working through this together AND for opening the window to adoption. Being a parent is far more than squeezing a kid out of your hoo-dilly. There is a child somewhere that needs you, if you decide to adopt, I hope that you do.

Because my child was premature, she had to spend several hours in the NICU, I was only allowed to hold her for about a minute before they whisked her away. I did not realize they don’t have the old style nurseries, that the child is in the NICU or they are with you. When they wheeled my exhausted, drugged, starving self to see her and I saw the sign that said NICU, I about lost my damned mind. I was threatening bloody murder if they did not allow me to see my child immediately. She was perfectly fine, just a bit lethargic and cold. A week later I had to take her to the hospital to treat jaundice, standing one night next to a screaming baby, seeing 3 nurses holding down a 4lb 9oz baby to stick a needle in her arm, it tears your soul out. Every fiber of your being is polarly opposed to anything that would hurt them, and yet you have to hold them and comfort them and let the nurses stick needles into them. What parents of critically ill children must go through, I can only compare to hell on earth. Babies don’t understand and you can’t explain it to them, you can only hope they don’t remember.

You may be telling yourself that maybe the kid wouldn’t have needed surgery and maybe would have been ok. Watching my child get an IV drove me damned near insane, imagine the strongest, most visceral feeling you have EVER had in your life, multiply it times 10, then imagine suppressing it because it’s “for their own good.”

I can’t express to you what it is like to be a parent, how it changes you, how it exhausts you, terrifies you, and fills you. That is a path each parent must take blindly.

I can tell you that I thank my stars for Roe V. Wade. I thank my stars for pre-natal testing. I thank my starts that fewer children are having to suffer painful lives because of it.

I am also thankful that there are folks like you out there who’s greatest sin is wanting to be parents to a child that will understand what that is.

I wish I had had a dad like you.

29

Thank you for sharing your story, Loopy. I think you have brought a very pertinent and important point of view to any discussion on pregnancy termination. My husband tells me about how he was informed in University by a feminist that he wasn’t allowed any opinion on abortion because he didn’t have a uterus. I think we all know how big a steaming pile that is.

Here’s hoping you and your wife get what you want and it’s everything you hoped for.

30

I appreciate your responding, in your post #13 of this thread. I think we both understand the gravity of my quip.

I’d like to elaborate on my quote, this was not something I thought of myself, but something I read as I was struggling with my own woman-hood, coming of age in the 1970’s. I’d like to give cite but I have no recollection of where I read it.
Just wanted to set that straight. :cool:

I think you made the wisest choice, of what little choice you could make. For what that’s worth.

(((loopydude and wife)))

31

My best friends went through the same situation. When they were trying to decide what to do the baby died. Soul crushing grief if the only way I can describe it.

Fastforward four years and they have an adorable little girl who is living up to the terrable twos, and another due in about two months.

They are happy now but never forget the first one. I wish you all the best.

32

Tom

Thanks so much for your kind words, and sorry you had to move the thread. I rather expected contention, and didn’t want to shy from it. It’s a charged issue, and I’m as guilty as anyone else on the planet for making it so. That said, we’ll go with it this way! A wise decision…

33

Also, thanks to all who have simply offered their condolences, and forgive me for not doing so one-by-one. Like I said, I don’t want the thread to be a pity party for Loopy, but I’d be a churl to refuse the kindness people wish to extend. So, again, thanks.

34

A very powerful contribution, GL, and I’m sure not an easy one to make. Thank you.

Ultimately I think my wife and I came to the conclusion that there’s really no universally right or wrong way to deal with the prospect and reality of raising a child with a disability. Naively one might think this is great, as it frees us all up to be individuals, but lacking some stentorian voice from the heavens instructing us to do this or that, we did find ourselves wishing rather fervently there was a clear directive from somewhere that we could trust.

One of the things that truly gave us pause, after communicating with some of the folks who offered up their perspective in the Down support groups, was that terminating was tantamount to telling those who choose to bring a child with Down into the world that they had made a bad decision, and, worse, that it’s simply bad to have Down Syndrome. Kids with Down are, after all, human beings, and 100% entitled to the same expectation as anyone else that decency and respect be extended to them. Meanwhile, as you know full well, many kids with Down may find it difficult or impossible to effectively navigate the adult world, with all its responsibilities and dangers. It’s hard enough without a disability. I find it impossible to come up with a simple remedy for anyone who faced what you or I did.

That said, I did get the suspicion that some of the folks we dealt with had a bit of an agenda, even if they honestly weren’t aware of it. The parents of Down kids wanted to affirm the experience. The perinatologist clearly took a dimmer view of the prospects, and even warned us (in response to some of my wife’s questions, when she cited the testimonials of the support-groupers) that many (perhaps even most) couples wound up divorced after taking on the responsibility we were likely to face if we chose to continue with the pregnancy (and if the baby made it to term, or much after, at all, of course).

Again, I’m confounded. I certainly cannot pass any form of judgement on another for whatever decision they choose to make in a similar circumstance, and can only lend my support and affirmation for whatever their choice ultimately is. I deepy appreciate you extending me the same understanding.

35

We’ve been giving that option serious consideration. Actually, we’re pretty much attending every RESOLVE conference/workshop we think is remotely relevant to our concerns, and, should we be unable to have our own biological child, weighing options like adoption and donor egg. Both can be horrendously expensive. Sometimes we feel like we’ll get the most bang for our buck by not only having a family, but giving one to a child who is already born and really needs one. That said, donor egg has a lot to be said for it, too, and I’m not passing judgement on anyone for any choice they make.

My wife was terrified of precisely this reality. She was terrified of going through that experience and having the baby die. She was terrified of being somehow happy once it was all over that the baby had died.

I’m sharing with her some of the testimonials I’m getting here (she’s not one for online fora, I’m afraid, except in times of direst need), and your perspective is a valuable one, trust me. It helps her find peace to know her fears weren’t some form of selfishness in disguise.

Well, the verdict is still out as to what kind of father I will be. :slight_smile: I’ve got a temper, there’s no denying. If adversity tell us anything it’s that trying to do one’s best when tested is one way we gain self-respect, and that’s a good thing to have. It helps me feel motivated to improve myself in areas where I too often fall short.

36

Loopydude I am so sorry for all of your heartache.
You made a decision that was right for you, it might not be right for everyone, but it was right for you.

That’s what the DS support group is missing- the uniquenesss of each couple, each child, each situation. There is no one answer, no easy one-size-fits-all solution, and there shouldn’t be.

You didn’t make this decision lightly, you researched this deeply and spent time and effort making sure you did the right thing for yourself, your wife, your marriage and the child. You did good. Hold on to that.

37

I was just thinking that so many adult decisions don’t seem to be right or wrong; they’re more of a “figure out the best of the bad bunch of options” nature and live with the results. I think that’s exactly what you and your wife got dealt here, and it is perfectly understandable if you don’t particularly like any of your choices, and you’re not feeling particularly good about the decision you did make. When did things get so complicated, anyway?

38

Loopydude, thanks.

Thanks for having the courage to write and post about such an intensely personal experience. Thanks for showing what you went through and how agonizing it was. Thank you for your honesty.

I’m not one to judge anyone else for their actions. It absolutely is not my place. As for your ordeal, I simply cannot imagine. Thank you for telling us about it. Thank you for showing a side many simply gloss over - the side of a couple who intensely, heartwrenchingly wants a family, who has a baby that is most absolutely wanted, and for whom things just go wrong.

My cousin was in a situation similar to yours - she was pregnant with a child that had genetic defects (not Down Syndrome). In her case, however, the doctors *were *able to tell her specifically what her baby’s future would be: simply, that there wasn’t one. I don’t know the name of her baby’s defect or syndrome (or even if there was one), but the baby had significant brain and body developmental problems, compromised major systems due to missing organs, and perhaps most significantly, a three-chambered heart. I asked my father (a family practitioner) whether a person could live with a three-chambered heart (the normal human heart has four), and he said that no, it was not a survivable condition.

Although faced with this prognosis and the possibility of no future for her child, my cousin kept her baby, and carried him to term. He died a half hour after his birth. She too faced your choice, but chose a different path.

I can’t imagine making that choice. I think that in such cases, we just do the best we can. You, sir, you did well. Thank you for telling us about it.

My sympathies for your loss. And my best wishes for you on your journey to become parents. May you find all the joy you could wish for.

39

Thank you for posting this, and for being so open to questions and comments. My question for you may be too personal, so feel free to ignore me.

How are you and the wife today? It seems like a quick question, but I can’t begin to image how you might answer it. How is your life? Has your work (and your wife’s) been affected?

I feel very strange asking these questions as they feel pretty impersonal, and these aren’t things that I normally would (or could) ask someone that I don’t really know. Please know that you and your wife have my deepest sympathies and condolences.

40

Thank you for sharing your experience. You, your partner, and your families have my deep respect and sympathy. You faced an impossible decision and chose to approach it responsibly and ethically. The outcome would have been horribly painful any direction the choice was made. In addition to the human loss, you’ve also suffered a blow to your dreams of parenthood. No one should ever legislate the decisions you faced; they are deeply personal.

You’ve given me a gift: your story has opened my heart this morning, which had been closed tight recently due to minor life-events.

I wish you all a future filled with love and joy.