Still insensitive after all this time

“Is your grieving finished?” my massage therapist asked me yesterday. Ummm, no? What kind of question is that? I danced around it, trying to explain that my grief is just part of who I am. I celebrate my current pregnancy – I had to give myself permission to feel joy, but simultaneous is the sadness I carry called Henry.

He’s everywhere, and with me always. I wear a small blue moonstone necklace with his ashes inside on a gold chain that also has a tiny pair of baby feet dangling next to him. I put it on every morning from where it rests on my nightstand on a heart-shaped crystal. I say good morning to my baby every day, and goodnight every night. My firstborn. (firstBORN – born born born. Get it?!). My Henry.We’re never, ever apart.

There’s nothing cute about it. I’ve heard every rendition, twist and turn to try to transform my experience with my son into an imaginary picturesque scenario involving fluffy white-winged angels. Frankly, if you do this, you’ve seen too many Disney movies and need to get off the fairy-rollercoaster.

NO, it’s not wonderful there’s an angel waiting for me in “heaven,” – do I even believe in heaven? Where is it?

A beloved friend of mine recently and tragically lost her baby. It hasn’t been a full 72 hours and she’s already been ambushed with ridiculous, insensitive, STUPID shit, like the fluffy angel conspiracy, and worse. I’m appalled by what she’s been subjected to. Especially – – ->

“It’s not a big deal.”

If you said this to a loss mom or dad, ever, fuck right off and eat a bag of shit. No, it’s just her fucking BABY she lost. Her hopes, her dreams, all the anticipation. All the love and preparation it takes to bring a new life to the world. All the attempts to spark this life into existence. The planning, the charting, the changes in diet and life habits. All the physical and hormonal changes. The months of being sick as a dog thanks to first trimester blues. The strands of hope and wishes she clung to while waiting to hear either good or heartbreaking news when she recently was sicker than usual and had to rush herself to the nearest hospital. The earth-shattering news she received when the doctors told her the life inside her stopped. The news she had to share with her daughter that no, in fact, you aren’t getting a new brother or sister for now. The awful feeling that you’re a terrible mother for not being able to keep your baby alive. The feeling that you want to die, too, just so you can meet your dead child, who grew inside you, whose feet you’ll never hear slapping on the linoleum, whose hair you’ll never brush, whose laughter and cries you’ll never hear, whose birthday (which is also their death day) you will celebrate every year to honour their cherished place in your life.

Nah, not a big deal. Have an ice-cream cone, take a bath and move on. It’s just like any other day. Not even as sad as losing a pet, or chipping a manicured fingernail.

Losing a baby IS a big deal. It’s life’s BIGGEST deal. I’d love to know, those out there who have had the gall to say this to a grieving parent, what you define as a big deal. Oprah losing weight? Getting a parking ticket? Spam? A bad hair day?

We move through a scorching fire, and you bloody idiots who say things like “it’s not a big deal” on the other side have absolutely no idea what it’s like. If you’re going to diminish our pain, our devastation, our shattered lives, it might give you more satisfaction to go to an orphanage with your kids and point your finger and laugh at the children and infants inside who have lost their parents. That’s no big deal either, right? They can just get adopted and move on. It would be just as tactful, just as helpful, and just as meaningful to them as it is to us who have had our children die inside of us.

I’ve been tossing this anger around inside me for the last few days. I can’t believe people we consider friends and family can be this insensitive after all this time. I’m not glossing it over this time with “of course your are well-intended.” No. Use your evolved, higher-thinking brain to etch out just an extra second of compassion. Forget your discomfort, and look at the person before you. Understand their pain. Understand that you don’t understand, and for the love of all things breathing, DON’T say something so searing, so unfathomable and insulting as “it’s not a big deal.”

We’re grieving still – there’s no expiry date. We’ll miss our children until the day we die. How dare you assume it isn’t a big deal, or that it’s something we eventually get over?

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When friends lose their babies

On this side of the fence, the grass is crinkly, brown and dead. It’s spread out over a vast space in irregular,  ugly little patches. The flowers are wilted if there were any in the first place. It’s raining, and tall, gloomy trees cast ominous shadows over everything. Surrounding you are deep, dark caves. It’s not pretty, but it’s safe. Nothing can hurt us here because we’ve already experienced the worst scares and the worst pain life can dish out.

(The chorus of this song doesn’t fit well here: “What kind of paradise am I looking for? I’ve got everything I want, but still I want more.” Fuck that. We want our babies. But the rest of the song is very fitting.)

We don’t climb over the fence from happy expectation to the field of bereavement by choice. We’re catapulted and find ourselves in an unknown land, disoriented, with sparks of well-meaning encouragement flung at us from people standing in a sunny field who have a very detached, vague concept, but can’t see where we’re standing and what’s surrounding us. (I try to dodge these sparks, because they mean nothing, unless they’re gently handed to me from people not in a rush to make me feel better, and are there to actually understand and comfort.)

There’s thousands upon thousands of us standing in places like this. And when our friends join us, it’s not a happy occasion. It makes us tear up the dead grass, fling it at the sky, and fill the air with cries of “WHY? WHY THEM? WHY NOW? WHY THIS WAY?”

It’s ridiculous, impossible, and unfathomable how many pregnancies fail. Twenty-five per cent of them, actually. I guaran-frigging-tee you know a good handful of people who have lost a baby, an infant, or can’t conceive. They may not let you know about it, but the next time you’re with a group of people, look around you, and just assume (without saying anything, of course), that 25% of those  present have had life, dreams, desires and hope ripped from them, tragically.

When a friend joins this side of the fence because they had to say goodbye to their precious, perfect and enormously loved child, no matter what stage of development they were in, it takes everything in me not to fling myself to them and smother them with the things that helped me inch forward in the days following my own loss. But that would be really a really dumb thing to do. Grief is a slow drip, and it’s not my job to gather the evidence of pain to show I understand. I’d be a fool to do that. Only they understand what they’re going through. I went through my own loss, and only I know what that was like. Now is a time to listen and listen and listen and love. That’s all.

Image courtesy of wallpaperstock.net

Image courtesy of wallpaperstock.net

Something really scary for Halloween

It’s only been one and a half months since we learned there may have been something amiss with Henry. Since then, I have been earning what might equate to an elementary degree in fatal infant diseases. These horrible, often life-threatening conditions forge parents into warriors and experts in their own right. I hope parents of healthy children know how fortunate they are.

 

I just learned about late infantile batten disease – a neurodegenerative disorder. Infants with this disease have poor eyesight, seizures, and start showing signs with slight personality changes. This can include slow learning progression, clumsiness, poor speech,  and other physical symptoms (slow head growth, poor limb circulation, curvature of the spine, and much more).

I heard about batten disease through a facebook group that I am part of, dealing with pregnancy and infant loss. Amelia is a little girl struggling with this condition. She may live to be five or 12 years-old, depending on the progression of the disease.

Batten reminds me of Krabbe disease – another fatal disorder that affects the central nervous system. Infants also begin to show signs of slowed growth progression and become lethargic, often needing respiratory support. There also may be a loss of vision and hearing, and limited movement. Little Lauren is living with this condition (I went to high school with Lauren’s mom). Her life expectancy can be to two years, or longer (with hope and prayers and research).

There are so many things that a baby can have. I only knew about brittle bone disease through one of my favourite movies, Amelie. Mr. Dufayel, the fictional l’homme de verre (man of glass), who has every corner in his apartment and joint on his body padded to protect himself from breaking bones, and lives as a recluse must have osteogenesis imperfecta type 1.

How could I have known that there was a fatal form of this genetic disease? Osteogenesis imperfecta type 2 is rare, incompatible with life, and what caused my son to only have a short life in my womb.

Then there’s MTHFR, which is an enzyme/gene defect that can cause neural tube defects, several forms of cancer and chemical reactions that a typically growing baby doesn’t have, essentially cutting their lives very short.

So many miscarriages are due to conditions that are incompatible with life. Many happen too early to really detect what went wrong.

And the two last heartbreakers I’ll write about are the maddening, unfathomable, mind-blowing, life shattering SIDS and stillbirth. I’ve read that 50 per cent of these deaths have unknown causes, blindsiding parents who thought, or actually did, bring home who they thought was a healthy newborn.

So if you were looking for a good scare on Halloween, I hope I delivered. And there’s so little I know and understand. It’s amazing anyone is born “normal” and that anyone has healthy pregnancies. I want a baby – it’s high on my to-do list, but what are the odds of actually having one that will live, even if I get to bring my future son or daughter home?

Keep you baby away from me

I truly am very happy for you and all of your healthy babies – really I am, but stay away from me (for now).

I save my daily walks for nighttime because the chances of running in to children and babies in strollers is significantly diminished. When I see little boys especially, I get punched in the heart.

Seeing babies makes me feel like I’ll never have that. Looking at pictures of friends who have babies (a lesson in torture) bewilders me. I’m so surprised now to see healthy, alive babies. The thought that I’ll ever be able to make one of them is unfathomable right now. I feel like my womb is a cursed place where only sick babies destined for death can grow for a short while. I feel like my subsequent pregnancies are all doomed to miscarriage, to stillbirth, to SIDS, to genetic disease.

Logic ramble: Yes, of course, I know that I may have healthy babies in the future. But I also know that it’s a risk. I know how many pregnancies fail, and I know genetic hiccoughs are more common than we suspect. I also know that I really am happy for you and your birth – you are very lucky parents, and I hope to join you one day. And this is a lot coming from someone who spent most of her life saying she never wanted kids.  Oh, how life turns tricks on us.

I know this post makes me sound crazy, but that’s my feeling for the day. I’ve spent a month grieving after what I thought was a healthy pregnancy, for five whole months. And of course, I do not want to offend anyone who has a child. I’m sorry if you feel offended. But I honestly don’t know when I’ll feel comfortable being around other people’s babies.

Am I jealous? Of course I am! And I judge myself for knowing this is petty and selfish, so I’m putting this out there knowing full-well that this is a post that might offend some of you. And this self-judging and feeling bad for writing this post isn’t healthy for me. But putting this out there is right, because I know, with 10000000% certainty, that I’m not the only bereaved parent who has thoughts and feelings like this. So I write it for you who are in this boat with me.

– Crazy woman out.

You aren’t alone

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.

No thanks.

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.