this is not supposed to happen

Yesterday I attended the funeral of a seven-year-old boy.  That’s why the silly post about clothes shopping yesterday morning–this just wasn’t something I was ready to process yet.  It was the saddest gathering.

He had leukemia and fought really hard, through multiple bone marrow transplants and graft versus host disease, all kinds of infections and complications, and after more than a year of that he just slipped away.

This is not supposed to happen.

He was just a little kid.

There were thousands of people gathered in the church to remember him and to celebrate his life.  Everyone was crying, including the priest.  Somehow his family will have to go on without him, and I hope they can take comfort in the idea that at least he has escaped the pain he was in for so long.

On my way home I started thinking about this community, and in particular this post by Infertile Revolutionary.  The post is about social pressure to keep infertility and early pregnancy private.  I was going to quote her, but you really need to read the whole thing–don’t worry, I’ll wait.

The family yesterday was (is) moving through enormous, unimaginable pain.  They will never get him back, and he will never get to grow up.  But they are doing it with the support of an entire community.  The whole time he was sick there were friends sitting with them at the hospital, cooking them meals, taking care of the younger son who couldn’t understand why his brother never wanted to play anymore.  And now that he is gone the community has once again embraced the family in their grief.  This is not to diminish what they are feeling–just to note that there is a support system.

Contrast that with what any number of you ladies have been through.  So many of you have lost children to miscarriage over and over again–but you’ve borne it alone because of this veil of secrecy around infertility and pregnancy loss.  My heart aches for you–there should be a church full of a thousand people supporting you too.  The world should notice.

And again, I don’t mean to take away in any way from what the family yesterday was feeling; I am wholly uninterested in the Pain Olympics, and I know that losing a seven-year-old is not exactly the same as losing a pregnancy.  But I also know that the pain those of you who have miscarried experience is no less real than what those parents are feeling.  What would it be like if you had the support of your community through your grief instead of an expectation that whatever happens prior to birth is your problem that no one else should be bothered with?

Infertile Revolutionary has taken a step that I haven’t–yet.  She is telling people the truth, and she has found real evidence* of how pervasive fertility problems are.  Before she told, all of those other folks in her post were keeping it all to themselves too.  Someday I will find the courage to give an honest answer when someone asks me why I don’t have children.  I haven’t been able to do it yet–but I do know that I have to be the change I want to see in the world.  I know that this part is up to me.

And if enough of us tell, maybe infertility and pregnancy loss will become the public health emergency it is screaming to be, given how common it is.  Maybe more states will mandate insurance coverage.  Maybe more will be invested in research.  Or maybe none of that will happen–maybe all that will happen is that each of us won’t have to bear our pain alone.  Which would be an improvement.




17 responses to “this is not supposed to happen

  1. I can’t even begin to imagine the pain of this family.

    Thank you for sharing this post. I think infertility and pregnancy loss needs to be recognized. I hope that someday in the future we will be able to find the support from those around us as we deal with this disease.

  2. This is a great post. I definitely feel that we should speak up and we should communicate that we are going through infertility. How do we expect people to be there for us if they don’t even know we are going through it. I also get that this can be very difficult for some people and not everyone is as open as I am.

    I look forward to reading more.

  3. Here from ICLW. What a moving post. I cannot even begin to imagine the pain that the family is going through. At the same time, you’re right, sometimes I just wish someone would notice the pain those suffering from IF or pregnancy loss have gone through. I am part of the problem — I am not at all open about what we have gone through. It is a self protection thing. At the same time it only hurts myself — no one can possibly understand if I don’t share. And, there are bound to be others who are experiencing something similar that would open up. It’s something I’m working on.

  4. This is a thought provoking post – thank you for writing it. You’ve helped me with how to support a friend: I wasn’t sure how to approach her loss, other than answering her questions about my Dad’s passing away. People do assume that miscarriage is different, but when it comes down to it, it isn’t at all.

    Thanks again.

  5. Here from ICLW 🙂 Great post – we do need to come out of the closet about IF and loss. And we have to be our own advocates, because fertiles don’t know a thing about it and they’re not going to unless we tell them. Thank you for posting.

  6. Here from ICLW. Heartbreaking for the family, gosh, I cannot even imagine.
    At first, I kept our situation private; however, over the years, I have been pretty open with people who ask, “do you have children?” Sometimes it is awkward but I agree with what you’ve pointed out. If more people know about it, maybe, we won’t have to bear our pain alone. I will say, it is AMAZING how many can relate with their own experiences of TTC struggles.

  7. Here for ICLW. How awful for the family!

    I agree that we need to speak up about IF. I always made it a point to let people know what we were going through when we were TTC. I didn’t want someone else who may be going through the same thing to feel as if they were alone. My hubby was also my biggest advocate when people would make thoughtless comments.

  8. Oh my, I can’t even begin to imagine what it must be like to lose someone close to me let alone so prematurely. So tragic.

  9. Living through something like this is just unfathomable to me. I just don’t know how people do it, yet they do. And I feel the same way about women who go through multiple losses. (Which is not to say one isn’t plenty, but I can kinda sorta imagine getting through it, somehow.) As far as being honest…I wish I knew the right language to use with people. I wish I weren’t concerned with their squeamishness. I wish I knew HOW to do what you suggest.

  10. This is a wonderful post. I started a non profit to try and do what you said, give the pain of infertility, miscarriage, stillbrith the recognition it deserves.

  11. I am deeply sorry for this family’s loss. I can’t even begin to understand the pain.

    I am glad you were able to attend and support the family. It is a difficult care to deliver.

  12. Thanks for this post.

  13. It’s always interesting how life’s juxtapositions can help us move forward in small and big ways. The story of this little boy and his family is an utter tragedy. I’m really interested in what thoughts it provoked in you, though. I think that infertile women are surviving their own tragedies, but lack the support they need to feel accepted in their brokenness. I admire your determination to start speaking about it. I’ve been mulling this question over in my mind, and still don’t share this situation with others very easily.
    Thanks for this great post.

  14. Hi G&L. What a thought provoking post. And you’re right, it would be a completely different world if IF was out in the open. I think it goes a long way beyond just being truthful with people about why we don’t have children. There is a huge learning curve for the general public to get through before those of us who need the support would get it. And thats the part that i’ve always struggled with. I am all for openness and honesty but selfishly I don’t want to do this because I know it will be at my own expense. It will take so many many many years for infertility to be considered coffee table conversation and I think if we all of a sudden started to be open about our problems it would get worse for us before it gets better. I do know that it would eventually get better but initially it would be crazy mahem. But I do plan to be more of an educator once I am out the other side and when my personal pain isn’t so raw.

    As for the family who lost their little boy to cancer, it is truely heartbreaking. x

  15. I think life, in general, needs “a community” I have experienced the loss of a child. I have watched my children languish in the hospital. Without the support of others, it would be an awful thing to bear alone. I think, too, that there will always be bitter people that make others feel less than adequate. I ignore/block those people out, in real life and online. Regardless of your life situation, I think you should seek out others and share experiences, good and bad. I blog for myself, if I help someone and make friends that in turn help and support me, all the better. Happy ICLW~Amy

  16. I’m so very sorry for the little boy’s family. What a tragedy.

    In principle I’m all for sharing my infertility with others, but somehow I find it harder to do than to “intend”. Part of this is that it’s not only my issue, but also my husbands, and he’s less keen on sharing (particularly the details) — and since we work together, many people know both of us, so I cannot freely tell unless he’s fine with it, too. But even if he were I guess it would still be difficult sometimes.

  17. Hello
    Found your blog via ICLW. My heart goes out to any parents that loose a child, I couldn’t imagine the pain they’re going through.
    I completely agree that “infertility” and trying to conceive via ART shouldn’t be Taboo. It takes great strength to be vulnerable and open up about it. I also agree that this should be taught in Sex Ed. in HS, so that it is known early enough, possibly treated and/or educates those in need of ART sooner than later. And lastly, it is a health issue and should be required for medical insurance plans to provide coverage for treatment, there are other countries that provide this for free or as part of their state funded programs, why not here in the US?
    The Cs

    I’m grateful for those of my family/friends that I’ve shared with, and have discovered some with infertility issues, have gone through ART and are adopting. And I’m happy to just have started blogging, and find others to connect with and to hear their stories with infertility & TTC, support from others provides great strength.
    The Cs

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