This post is written in honour of the parents who have shared their stories of loss with me, miscarriages consisting of the bulk of them. While I didn’t suffer a miscarriage, Henry’s disease is so rare that I doubt I’ll ever meet another parent who has lost a child to osteogenesis imperfecta type 2. Losing a child, no matter how the loss occurred, is absolutely devastating, and needs to be recognized by your friends and family.
I’ve been in contact with some parents whose children are suffering a terminal condition, and if it’s anything like the few days I spent between wondering, finding out, and deciding what to do about Henry, I can assure the rest of the world for you that these days are difficult and dark, but also that you are tenacious and brave.
If you’re not one of these parents, and you don’t know what to say to us, that’s OK. We were like you before our own losses. I came across a post yesterday that brilliantly summarized what to say, and what not to say to those of us who have lost a child. Please have a read here.
If you have lost a child, the book “When your child dies” by Nagel and Clark is very helpful. It validates every type of child loss in short, succinct paragraphs, and gives empowering healing tools for parents, like breathing techniques, creating memorials for your child, honouring important dates, expressing and accepting your grief no matter what form it’s in (sorrow, anger, regret, relief), and imagining what you want in the future (for me, that idea is far-fetched right now, but I’m glad its covered in the book).
This book brought on a wave of shock when it was given to me because the fact that I now owned it meant that my baby was dead. I knew that I gave birth to Henry in the hospital several days prior, and I knew that he wasn’t alive when he was born, but this book was a physical recognition of my devastation and loss.
We all grieve differently, but one thing I have had in common with some parents who have shared their stories with me is that messages of faith actually do not help. Hearing that it wasn’t meant to be makes me feel like I just lucked out of winning at a gambling machine. Hearing that losing a child or having a sick child was “given” to us because “God knew we could handle it” is a crock of shit to me. And anything that tries to make this event cute, like, now I have a little angel watching over me, is actually quite painful to hear, and diminishes my experience. These are covered in the article that I mentioned above. But if spiritual and faith-based messages help, that’s great – you have to take what works for you. But because I don’t believe in that, it doesn’t work for me. And if you’ve expressed any of these to me, I still thank you for it, because there’s no way for you to know what I need to hear. Not even I know sometimes.
I spent time searching for support groups online, and I came across a few websites that I found beautiful, inspiring, and made me feel as though I wasn’t alone.
Still Standing Magazine posts articles, stories, resources, special dates and more. They publish poems weekly on Sundays, and often have calls for submissions for stories, which I hope to participate in one day.
Small Bird Studios and Carly Marie Project Heal are amazing sites run by two mothers finding ways to express their grief. I think they know each other, too. Each site is beautiful, and reach out to parents through crafts, sharing stories of loss, and recognizing important dates for parents of loss worldwide. I sing praises for these women. They have been a real source of comfort for me. Carly Marie has worked to have international days of awareness for infant loss and infertility. The entire month of October is Pregnancy and Infant Loss Awareness Month, and her beautiful work has helped push this month and its pinnacle date, October 15, into the spotlight.
I have isolated myself for nearly a month, but I have rarely felt alone thanks to the resources I have mentioned, and the constant flow of love and support I’ve felt from friends, family and colleagues.
As one parent who shared her story of loss with me said, the more we talk about our experiences, the more comfort we can feel. Whether you have fertility complications, have had miscarriages, stillbirths, have a child who is living but you don’t know for how long, had a child who was only with you for too short a time, or you’re like us and had to choose to end your child’s life due to a fatal genetic disease, you are unique, but you aren’t alone.