If you knew about your child's diagnosis prenatally

[Anonymous]

If you knew about your child's diagnosis prenatally (T21, other genetic disorder, etc) have you ever wondered if you made the right choice? I ask because we were offered termination at 19 weeks and my husband and I couldn't even consider it. The spectrum of what challenges our child might face was so broad and there were several really happy kids that I read about online. We were very religious and termination was something we were really deeply uncomfortable with. We were going to have our baby and it was going to be okay and we would see blessings come.

Fast forward three years. Our child is on the far end of spectrum for many, many issues and life for the entire family is difficult to say the least. My older child and husband seldom get my emotional or intellectual energy because I'm always dealing with whatever new medical issue has come up.

My faith also is just about dead as well. Why would God keep inflicting all of this pain on my small, defenseless child? My answer these days is that God must not as involved in our lives as I used to think. Just when we think we've managed one of the medical issues, another issue rears its ugly head and there's more that needs to be done. We have a hard time getting support from our church community or families - they just seem to want to exclaim how well DC is doing or tell us what a great job we are doing. While well meaning, being put on a pedestal is not what special needs parents need. But, I know that its hard for anyone to know what special needs parents go through, but I guess I thought prior to this that one of the functions of churches is to offer some level of peace to those struggling. This has just not been the case and it has broken my heart and soul. I feel like my faith has taken a real nose dive - and there was this ***option*** out there that could have saved our family all of this grief and pain. But, I wasn't allowed to even consider it!!!!! Noone, not even the doctors, ever really presented it as a real choice that I could make.

Don't get me wrong - DC is an amazing child and I LOVE him. I am a good mom. I spend much of my time making sure that DC gets the medical care ordered by the doctors, the interventions recommended by the therapists, the paperwork to get all of the equipment/therapy/whatnot and the countless other things that DC needs to be happy and full of joy.

There are many days where life is happy and full of meaning. But, I still have this nagging thought that I wish that I at least explored termination. My religious views have slowly changed dramatically after living this life the past few years. I know that a termination for medical reasons is a heart-breaking choice and that there was no option that would have fixed the situation three years ago.

Sorry for the ramble. Just wondering if there was anyone else out there that struggled with similar second thoughts?

Oh, and I'll be ignoring the inevitable posters who call me monster for thinking this.

[Anonymous]

Oh, honey. I would have terminated my pregnancy in the situation that describe. I can't tell you anything about what God does or does not do or if there is or isn't a God. I can say that if there is one, he is lucky to have you in his corner.

[Anonymous]

OP, I am sorry you are filled with so much doubt and your faith is under fire. That is an uncomfortable place to be. I did not know about my child's diagnosis prenatally and my husband and I had quite glibly discussed that if "anything" came up in the amnio we would abort. The amnio was "perfect" and we did not know our child was special needs until six months, with unfolding diagnosis over the next two years. Of course now I cannot imagine life without this child and the thought of that glib abortion decision astounds me, but I still am pro-choice and won't make that decision for anyone else and understand why others would be glib.

I also want to say that I have days that I wish very much my child wasn't special needs. But I also believe, and I have some anecdotal evidence to support, that moms of "normal kids" have wished their children were far, far away on occasion. That the whole thing is just "too hard." So I think this feeling of some days wanting to be relieved of this burden of the whole incredible responsibility of child-rearing is in some ways universal, not just because you have a very disabled child. Not saying it's not hard for you. Just trying to say -- I don't think you should feel so alone.

[Anonymous]

I wonder if you need another faith community. I don't believe that religion is the answer for all people, but in your case this is something that is important to you and its missing right now. Maybe you need to shop around?

[Anonymous]

Hugs. Just hugs.

I agree with 9:18, you may want to look into a new faith community. If you're interested and want a place to start, let me know. Our congregation is tiny and our denomination is protestant and conservative (though many of our individual members are more liberal) but I can promise you'd be embraced. Our congregation has a number of special needs members and our pastor has had at least one event in his life that would cause the kind of questioning you're going through, and he doesn't mind talking to people going through questioning stages (in one on one meetings if you want).

On a separate note, I'm not the parent of a special needs child, I'm the "normal" big sister of one. My brother didn't have medical issues, but he is severely autistic, retarded, and bipolar. This affected our whole family and caused both my parents to focus on him. I probably said some things to my parents growing up about the time and energy they focused on him and not on me, but overall I knew he needed the focus more than I did. When I got older, I was much more independent than my friends, something that has served me well ever since.

I love, though, that you're aware of the way your attention is focused - because you're probably trying to be sure your other child isn't completely ignored. On his/her behalf - THANKS.

[Anonymous]

I am so sorry for your pain, OP. I am not in the same situation as you, but I have been struggling with faith too after my daughter passed away. Why does God allow suffering? I don't know. The conclusion I've come to is that we can't understand God. Our notion of time is different from God's. This life is a sliver of time to God. Maybe what happened in my case was God's plan, or maybe God doesn't interfere when horrible things happen but instead gives us strength and comfort through the nightmare. I don't know. I believe God still loves us even when we're angry, furious with God. I don't think we can even try to understand God, just trust. You sound like a wonderful mother, just someone who is suffering. Sometimes church can be a comfort, but sometimes a trained, professional therapist can really help in a situation where you might be feeling overwhelmed. I wish you peace.

[Anonymous]

You will find great support and perhaps, some people to help you discover the answer to the questions you are struggling with at these places below:

http://jillshouse.org/?page_id=628

http://www.mcleanbible.org/pages/page.asp?page_id=132215

[Anonymous]

Lots of hugs to you, OP. I appreciate the struggle you're having both with family and faith. I wish there were something I could offer to help you through it - something other than what yyou're going through is understandable and normal. Kid number 3 was not planned and while we really wanted to stop after 2 kids and are definitely pro-choice, we had the resources (emotional, financial, etc.) to take care of a third. I had a CVS with all three kids (I'm older) and would have terminated if something had shown up. But, it didn't. Two of our three kids have SN and even knowing then what I know now, I definitely would not have terminated one. I don't know about the other. It's not as if I don't love him and enjoy him but the day to day burden is sometimes overwhelming. We also don't know what his prognosis is. What really hit me is the recent murder/suicide of the psychiatrist and her DS. I don't have suicidal/murderous thoughts but I can understand why she would think death would be the best choice. Isn't that frightening? I some of the threads going around and it's clear people have no idea what the toll is and how it's not just as easy as asking for help. What I really get angry about is people like you who follow your faith yet your religious community isn't embracing you for it. How dare they then say abortion isn't an option? It's just not fair and one thing I've learned as a SN mom is that I can't judge other people's difficult choices. I can sympathize with the difficulty of their lives and respect that they've made the best choice for the family.

[Anonymous]

Just admitting and sharing that w/ us, is helpful, you are not alone in how you feel about your child........I think you just need a break....when I begin to question, things like that, that's when I know I need a break....good luck to you/family. Please come and post anytime, we will listen!

[Anonymous]

OP...just wanted to send support your way. Your post was honest and raw and will probably help more people than you know. It's not all tulips and frolicking through holland when one has a child with SN. (Yes, I'm a tad bitter about that "welcome to Holland" poem *gag*).

I too was let down by my religious institution and from googling about have learned this happens far too often. Now I unlike you like when people recognize what I do and heck being put on a pedistal every now and then might be nice though nobody has done that. My child's issues are different (spectrum) but too often parents judge spectrum parents thinking we are really bad parents.

I wish I knew the right thing to say. I am sending strength your way and praying the medical issues get resolved soon if that is possible.

[Anonymous]

Dear OP,
I am so sorry you are going through this, and I can't imagine what it is like to be in your shoes, so I won't pretend. But right now, i am going through this from the "do I terminate" perspective--we have discovered that the baby I am carrying has a genetic disorder about which little is known. Prognosis ranges from mild learning disabilities and slower development and hypotonia to more severe issues--moderate to serious cognitive impairment, GI issues, heart defects, cleft palate, etc (some of which we will find out more about this week with a detailed u/s). Right now I am struggling, and I do not have a faith to guide (or misguide) me. Most of my family is in favor of termination, DH hasn't come to terms with his feelings yet, or hasn't wanted to until I come to some sense of what to do, though ultimately it is a decision we have to make together. This is DC3--#1 is s/n, although not severe (learning disabilities, spectrum, anxiety/depression and some physical issues) still requires considerable time, therapy, energy, and we worry about the future. so far #2 appears typically developing. Were it not for 2 other kids I would probably not hesitate to go forward with the pregnancy, but we already feel stretched thin, both emotionally and financially, and wonder about the impact on our family as a whole. And, in my darker moments, I wonder if I am capable of being a good mom, or will I become resentful of the burden, and become unhappy and a bad mother. I think that in this situation, you might never know what is 'right'--if we terminate, I would probably feel tremendous guilt, sadness, and be haunted by the same "what if" feeling that you experience for the rest of my days. The best we can do is try to make the best of our lives as they are, accepting the decision one made as the one that seemed most right at the time.