Deep (and possibly offensive to some) thoughts.

I hope no one feels judged by the following. I do not judge the decisions others make, I’m simply going to discuss the decision that my husband and I have come to regarding our family circumstances and how we’ve gotten there.

We’re done.

There will be no more biological babies born into our household. We’ve made the decision but we still grieve the consequences deeply. What is very strange to me is that, as I was growing up, I didn’t want any children. I liked babies just fine but there was never any urge to have my own. I never felt that desire to see the features of my partner or myself on a child of our making. Then I met my husband and we experienced an unplanned pregnancy. I was on birth control and we were being responsible adults and yet, there we were, completely shocked by the circumstances.

As the shock wore off we began to get excited and make plans for a life together as a family. We found a new place to live since my studio was too small for all of us. He made plans to move to MA rather than to NH as he’d intended and he began job hunting in MA. Things were suddenly taking an unexpected and happy turn.

I miscarried.

I remember laying there as the doctor looked for any sign of a heartbeat, as he took measurement after measurement hoping to see some sign of growth, and thinking how unfair this all was. I never wanted this, I was perfectly happy before and now I was completely devastated over the loss of this amazing and unexpected gift we’d been given.

We took some time to heal and reconsider all the plans we’d been making and we decided to move forward as a family. Five months later we got the happy news that we were expecting again. My husband made it very clear he wanted 2 or 3. I was content with the 1 we were now expecting but I was open to more, if that’s what he wanted. As we experienced the sheer joy of the pregnancy and Monkey’s infancy it became clear to me that I wanted a houseful of little boys. I would settle for 2 or 3 but I was now open to even more.

Just before Monkey’s 2nd birthday we received the news about his diagnosis. We had not, for one second, believed that the test would come back positive so the blow was intense. In a matter of minutes, it seemed, our entire lives were derailed. We were given no support at all by the pediatrician who had made the diagnosis and felt very much alone in a strange world. After we made contact with the National Fragile X Foundation we began to assemble a support structure of physicians and specialists but, looking back, I’m still not quite sure how we survived that first 6-12 months.

Two years out from the diagnosis, I still have moments when I think I just can’t do this. We are so much better equipped now than we were back then and yet we still feel helpless and lost at times. We don’t know that we’re doing enough. We are doing our best which is some comfort but there is still that nagging voice in the back of our heads. There is also the ever growing list of things we won’t get to do with Monkey. We have a try everything approach but it’s clear that he has limitations specific to his Fragile X that will not let him participate in many of the things that we had hoped.

So many things remain unclear. We really have no idea how far he can go in this life. We have no idea what treatment options will be available. There are just so many unknowns, the biggest being will he ever be independent, that we feel we can’t risk limiting the resources we have to share with him.

Another child with special needs will need all the same time and money that we’ve expended and continue to expend for Monkey but we have limited quantities of both. Another child with special needs will mean all the same joys and sorrows that come with being Monkey’s parents and, as much as we love him and as dedicated to him as we are, we just can’t find it in ourselves to sign up for another ride on this rollercoaster. Don’t misunderstand me, we would never, ever give up the ride we’re on but we just can’t see doing it all again by choice. It’s not a rejection of him. It’s an acceptance of our limitations as parents and as a family.

We have explored our options with some very knowledgeable people and we’ve decided we cannot justify the emotional and financial cost of IVF and PGD. My health insurance covers PGD but not IVF in my situation so the price tag, coupled with the lack of guarantees of a successful outcome, are just untenable for us. We could make it happen but the cost is just too great.

So we’ve closed the door, unhappily, on more biological children. I’m a firm believer that there is always a positive for every negative. We’re exploring other options of growing our family but, again, there are emotional and financial costs associated with all of those as well that we’re still trying to work out for ourselves. What we are working on now is coming to terms with the loss of the life we had dreamed for ourselves even while reminding ourselves that there is more to come. I believe that something that was meant to be is in process, even now. I can’t wait to see what it turns out to be.

Edited to add that these blogs are all discussing this topic as well:

Fragile What?!

Life With My X-Men

The Other Lion

7 thoughts on “Deep (and possibly offensive to some) thoughts.

  • April 8, 2008 at 8:54 pm
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    I was talking to all those other FX moms on Sunday and each one of them agreed that they were glad that they never had to make the decision you and your husband are making now. They were already pregnant or had already given birth to the second baby. I dread having to sit down someday and decide this for myself, but I imagine I will be coming to the same conclusion. And it sucks. That’s just the plain and simple of it. But like you said, there is a magical something — perhaps someone — in the making.

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  • April 9, 2008 at 9:05 am
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    Thanks for sharing. It makes me want to blog about this topic.

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  • April 9, 2008 at 2:39 pm
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    I’m not sure how Umma feels, but this is the hardest part of it for me…. telling everyone.

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  • April 9, 2008 at 7:07 pm
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    My 3rd (and last) child was 3 months old when we got the diagnosis that our eldest son has Fragile X. Quite devastating considering my oldest sister had genetic counseling and was told the “retardation” was passed from female to male and since our father was fine there was no need to worry. This was over 30 years ago. I’m glad now, as are my sisters, that we didn’t know then what we know now. To conceive or not is a difficult and entirely personal decision that requires no explanation so you need not give one. Would I have had my other two if I had known? No. Which is why I’m glad I didn’t know. Would I “change” my son if I could. No, because then Robert wouldn’t be Robert. He is my sunshine. Unless you’re living it people just can’t understand how hard but joyful life with FX can be. Enjoy your little Monkey. He will grow fast……God bless…….(.Erika’s Aunt) Kim

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  • April 14, 2008 at 7:34 pm
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    Kim, thank you for commenting. It gives me great joy to read your description of life with FX as being joyful, one thing that worries me is that over the long run I may get worn down/out. I hope that I too can keep in mind the joy of living with my little Monkey…he does make it easy so I think I have a decent chance!

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  • December 31, 2008 at 1:15 am
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    Thanks for this honest post. I’ve been reading all the blogs’ postings on future kids, and it’s really interesting and helpful for me as we make this decision.

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  • April 8, 2011 at 10:17 pm
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    We made the same decision to just have Jacob after we learned he had Fragile X. Taylor and I marrid later in life and I didn’t get pregnant until I was 35 so combined with our age and Jacob’s FX we decided to not have anymore kids. It was a hard and sad decision we wanted to have one more but as you know life is not fair and I believe that God has a plan for Taylor and me and what we planned wasn’t his plan. Just wanted you to know you are not alone in a very stuff decision! God Bless Take care Wellin Family!! Thank you for sharing!

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