Still born

My goodness, it’s been a while. Let’s catch up a bit.

Right now, I’m sitting on my bed while my family hangs out/be crazy/clean up after dinner. I’m supposed to be working on a 20-page term paper on governance and fair trade coffee, because I am a grad student now out of Athabasca University (yaaay!). I was so cripplingly bored and antsy after we moved across the country that I dove in about two years ago. It’s great, but I also have to do the self-discipline thing and actually find the bits of motivation needed, like some buried chocolate in a crappy chocolate chip muffin that is mostly just dry cake, to get things done. Why is this challenging? Well, because I have two bambinos now.

They are everything, but it’s also important for me to not just identify as a mommy. I’m not a mom, I’m their mom, uniquely for them. I’m also a bunch of other things. Another thing I am today is reflective on what Henry means to me after I gave birth to two living children, now 3.5 years old, and 8 months old.

I find myself feeling guilty whenever I lose patience with my toddler, because I should be savouring every second. Also, I do a lot of self-admonishion for feeling that guilt, because momming is fucking hard and challenging, and when there are two of them? At the same time? Fuuuuuuuuuuck, man. Sometimes, my face doesn’t even look like me. My eyes are glaze-y, my nose looks chunkier, I have this big ‘ol mom belly that’s kinda dangly and wiggly, but, I’m strong as fuck. Which is why I was prepared for what life threw at me today.

This morning, a beloved friend was asking me for advice of the worst kind. What should she do for her friend who delivered a still born baby last night? A lot of my answer can be found in this very blog, but basically, there’s nothing you can do. Our friend (or not friend? Or, really doesn’t matter how you relate because too bad) time will chip away at the raw, blistering pain at a life event that just cannot make sense. One thing hit me hard and stayed with me throughout the day — that she couldn’t believe she had to leave the hospital without her baby.

She could not leave the hospital with her baby.

Let that sink in.

I had to do that, too. If you’ve never done that, then you have not walked through the dark valley of hell that is walled with flames, spikes, crying, silent babies, and the oncoming onslaught of offensive images that is other people leaving the hospital with their babies. This woman, who my friend knows, is going through this right now.

The worst thing that can happen to a parent is going on so close to me, and it all comes flooding back, as if I’m also just leaving the hospital, in a fog, just trying to cope. My body compensated by developing a years-long facial tic that makes me feel like I can’t blink hard enough, almost like my body wants to shield my eyes from the pain my waking self is living.

Life is so fickle sometimes. Some babies live, some die, and the only thing separating you from those horrible moments is the time between now and then. It doesn’t matter that I have two amazing, healthy children. They don’t erase Henry, they don’t replace Henry. Henry was and always will be the first, and will always be the great mystery of my life, and my greatest loss. My two living kids bounce along in a joyful raft around the island of my loss, and more and more, that island gets sprinkles of the confetti that is the happiness from my two kids. It’s all still there, but the look is changing. I still wear my locket, and always will. but I don’t feel compelled to tell people who compliment me on it that it’s full of my baby’s ashes. He’s gone, but he was still born, just like my friend’s child. The only advice I can really give for her is, hold on tight, this is going to hurt. But you’ll surface again, so take your time.

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Living in two zones

It’s been an interesting few months. I’ve been very quiet about some new developments because it’s something I once simultaneously seethed jealously over while feeling repulsed, and yearned for with every fibre of my being.

I’ve been expressing these confusing emotions on another blog, and that’s all I’ll say for now!

I’m living in grief for my beloved one who is gone, terror because of what I know could happen next, and happiness for what could be.

I still want to be quiet about it, which is why I’m only publishing this on WordPress and not my usual channels. But putting this out now feels right.

Thanks for reading!

Le life, etc.

The wheels of life are turning. I have a few writing gigs popping up here and there. Not enough to make a living, but it’s a start, and I’m very grateful. To read my work, just pop over to my other blog.

We also heard back from Sainte Justine’s genetic counselor who has been following Henry’s case. According to blood samples they took from Tyler & myself, we’re absolutely not carriers of osteogenesis imperfecta. It’s what everyone suspected, but it’s a relief nonetheless.The counselor said there’s a five per cent chance of recurrence, but I know now that there are ample diseases, defects, and mysterious tragedies that can befall a fetus. So I’ll worry about those instead.

If/when we do have another baby, we’ll be followed by Ste. Justine. We’ll get an amniocentesis at around 15 weeks which will scan for any genetic issues (and will tell us if it’s a boy or a girl!). I had an amnio with Henry, right before we lost him for good. I kept my eyes closed the whole time, so I didn’t see how big the needle was, but apparently: HUGE! It didn’t hurt, surprisingly.

AAAAHHHH!!!!

AAAAHHHH!!!!

And if/when we do have another baby, it’ll be a mix of elation and terror. Time will crawl by. Every moment of the day will be fraught with worry, but also joy at the little bean growing away, all on its own, oblivious of the roller coaster his/her mommy will sit on for nine months.

Making decisions in grief

It’s really, really hard to make decisions these days. Things kind of just have to be thrown at me and I’ll either duck out of the way, or get hit by them and incorporate whatever it is into my day. Most of the time I’d rather duck, but don’t often have the energy for it.

This is quite a bit change from the person I used to be. I was more of a direct-make decisions, no fuss kind of lady. Maybe I still am, I don’t know. I’ve been hit with a Fort McMurray-sized truck of loss, and you don’t come out of the grief-machine the same.

But I am making one decision in my cloud of grief. I know Sweetie, my beloved deceased bunny, cannot be replaced. She was a very special pet, and having her suddenly ripped from my life is really very painful.

My sweet, good girl. Rest in peace.

 

Since losing Henry, she had been one of my main sources of comfort. Watching her eat made me smile, and she was very good at snuggling. We would spend hours sometimes snuggling in my bed or on the sofa.

She also made me laugh when she would weave between our legs, honk, and follow us like a dog, demanding to be pet. She would also flop on the ground and go really flat – a sign that she was happy and comfortable. A light went out when she left, and I’ve been so angry and sad at the circumstances of her death, even though the vets did everything they could to resuscitate her. I think she died of fear, and that tears me up.

One thing is for sure – getting a new bunny that is real and already sterilized is a much quicker fix than waiting to hear from geneticists that our chances of making another baby with osteogenesis imperfecta type 2 are high or low. So I’m going for the quick fix.

In all of this, I haven’t turned to substance abuse to cope with my grief, which I find a bit amazing. Not that I would have turned to hard drugs in the first place, having never done them or had the desire to go down that path. Maybe I’m watching too much Internet TV these days to think of that as a logical progression from multiple losses. My point is, I’m going to get another bunny. Hopefully one that snuggles. I still have Wilbur – my feisty miniature grey rex rabbit, but he’s a biter, not a cuddler. Neither is my cat.

Silly wonderful Wilbur.

I’m finding so little comfort in my life these days. I’m still humbly thankful for all the love and support that friends and family are giving us – I don’t mean to sound ungrateful, but at the end of the day, it’s me sitting with me and my torn lump of a heart that continues to beat for some reason.  The tools to recover, if I ever get there, are within me, and what I feel will give me some ounce of comfort is a bunny from the SPCA. So that’s one decision I’ve made.

 

Ode to pottery (coping with clay)

Many years ago, I read a Stone Soup comic in the newspaper where one sister was teasing her younger sibling for doing a connect-the-dots picture. The mom was in the background and overheard the girls’ conversation. The younger sister was saying that life is unpredictable and uncontrollable, but with this connect-the-dots, she knew she was getting a dinosaur at the end – no surprises. Then you see the mom with a thoughtful expression, and in the next frame, the mom is doing a couple of connect-the-dots pictures with a satisfied and relaxed expression on her face. I’m going from memory, so I might be a little off, but it left an impression.

That’s how I feel about pottery. I can’t control the fact that my son was growing with an incurable genetic bone disease, but I can make a cylindrical cup with grooves or straight edges, or I can make a bulbous, round pot, or I can smash everything. To a degree, I’m in control. It’s one of the only things that has helped me feel like I can get a grip in the past month.

I was signed up for a fall pottery course and had taken my first class the week before our first ultrasound (the one where we didn’t get good news). I dropped out of the class, but thankfully, I have my own pottery wheel, so I can finish the pieces that I started.

My pottery wheel in my messy basement “studio”

One of the pieces I made in class without knowing – a simple little pot with a lid – will be Henry’s urn. I made it while I still had him with me, so finishing it up at home and carving in his name was a surreal experience.

Henry’s urn – with the lid tilted to display his name.

Pottery is my escape when I can’t handle whatever is going on at home. My wheel is in the basement, which isn’t a high-traffic area, so I am left in peace, and the whir and spin of the wheel helps me focus on the lump of clay waiting to be transformed. It’s a hobby I’m glad I kept up with.

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.

Let’s talk taboo

You’re not supposed to talk about dead babies or how they died – it’s a taboo subject. It makes everyone uncomfortable, as it should. It plucks very delicate strings. It touches our moral fibre and puts impossibly difficult choices in our faces. But we should talk about it for all of the parents who suffer with guilt, pain, and self-doubt, and still don’t have their babies with them in the physical world.

I lost my child – my hopes for the future, and now I am terrified at the idea of trying to make more babies in case they all end up with a fatal disease like Henry’s. We’ll find out soon if that’s the case, and it’s normal for parents in our situation to be fearful until our future babies are actually born.

In the past few weeks, I’ve read about and had so many stories of loss shared with me – from miscarriages to stillbirths, and it makes me very hesitant to make any future announcements until baby is in our arms, smiling and kicking. But trying again is definitely at the forefront of our minds.

If you’ve been keeping up with my blog so far, you may have read the tears between the lines. Each post has been both very difficult and therapeutic to write. I know some of it is personal, and in my prior-to-Henry life, I would have been too shy and reserved to share so openly. But when you lose someone so precious as a life that you helped create, some of your old skin is shed, and you start becoming a new person. I have been avoiding spelling out clearly the decisions we made for Henry, and why we made them, and that is what I will do with this post.

On the day that we found out that Henry’s diagnosis was fatal, we howled in pain and agony. We wanted this baby so much. We were smitten and in love with our 21-week old son, and his room was already starting to take shape, and his brother was so excited to meet him.

After Henry’s first ultrasound where the doctor saw that his bones were shorter than they should have been at his stage, we knew we would be getting some news about Henry with the specialist, and we were hoping for something like skeletal dysplasia or anachronism – something complicated relating to bone growth.  We had managed to keep ourselves thinking positively the days prior to the diagnostic scan.

We knew there was a possibility that we could lose Henry, but we really had no idea until the specialist who did our ultrasound told us that he had osteogenesis imperfecta (OI) type 2, and life hasn’t been the same since.

I’ve been a mess of self-doubt; mourning the loss of my first child, trying to fathom the idea that I actually gave birth to him and left the hospital without him, and that I’ll never see him again.

As I write this post, I’m afraid you will judge me, especially if you are not pro-choice. I’m afraid you will think I made the wrong decision. We didn’t want to make the decision that we made. If you disagree, we respect that, and we thank you for respecting our decision in return. Henry is gone. Nothing you or I will say or do will change that, and how I wish it weren’t so.

We were given the choice in the hospital to carry Henry to term. Henry was going to die anyway – there is absolutely no way he was going to survive life outside the womb. If you look at the tab I’ve provided explaining OI type 2, the rarest cases see infants with the disease living up to a year with intense life support. They either die because their lungs inevitably stop working, or from insufficient caloric intake because the demands on their little bodies are too much. And these are the medical considerations without looking at his very, very fragile bones that had already suffered multiple fractures in my womb, and a few more as the nurses handled his frail, minuscule body after birth. Life would be nothing but pain for Henry until he passed away as every Type 2 case does, because it’s the only lethal form of OI.

At the same time that we were given the choice to carry to term, we were also told that we could terminate the pregnancy, and whatever choice we make is the right one. The English language doesn’t have sufficient vocabulary to express the depths of our grief, sadness and shock at our options – both which ended in never seeing our son grow up and thrive.

Choosing to stop a life isn’t something we took lightly. We were praying and hoping for anything but a death sentence. We would have absolutely loved and cherished any form that our baby came out. We would have been bursting with pride if we were going to have a disabled baby, a baby with Down Syndrome, a baby with dwarfism, a baby that would have needed to be in a wheelchair for its entire life, a deaf, mute baby with a deformed head – ANYTHING! But that’s not the hand we were dealt.

We were stunned, sitting in that dark ultrasound room, choking between heavy sobs at the reality of our situation, wishing and praying with everything we had for this not to be true, but we had a decision to make.

I was lying on the ultrasound table with my shirt and pants still tucked up and down, with a towel draped over the ultrasound goo still covering my belly with the image of our dear sweet boy still on the screen when we were gently told what our options were. The support staff said that we could stay at the hospital to gather ourselves (it was morning, and we still had to see a genetic specialist later that afternoon), and we could even have a private room to ourselves, or we could go home.

I didn’t then, and I still don’t have the capacity now to make even the simplest decisions, but somehow, we decided to go home during the break. That car ride was the longest of my life, and I cried, sobbed and howled  the entire way. Looking back now (and this was only a little over a week ago), all I remember feeling is a numb buzzing. I didn’t feel completely in my body due to the trauma and shock of the reality that, no matter what we decided, our baby was going to die.

Through the fog, we made the decision to terminate our pregnancy. We were given a choice of days to come in for the procedure. They originally suggested the Wednesday of that week (so far, everything I’ve written happened on the Monday), but I asked for Thursday because Wednesday was our sixth anniversary. We had two last days with Henry, and I savoured every kick, blip and wiggle he made.

Every day was a river of tears, leaving nearly every pillow in the house soaked through and having been screamed and yelled in repeatedly. We played Henry music, we read to him, we told him how sorry we were, how beautiful he is, how much we love him, and how much we’re going to miss him – over and over and over. I still do.

On our last night with Henry, I felt like I was going mad. I DID NOT want to go through with the procedure. I didn’t want to say goodbye to my son, who was still very much alive and kicking inside me.

It was torture, madness, against every fibre of my body, against my instinct as a mother – to love and protect and cherish my little one. It was against my belief in giving everything I had – of not giving up, of finding solutions, of getting support and help, of helping those in need. I was diving in to a situation where, to let myself go through with it, I had to turn myself off.

The only thing that helped me through these horrible few days was that we learned that doctors suspect that a fetus doesn’t feel pain until the 22nd-24th weeks of pregnancy. It’s what the doctors at Sainte-Justine Hospital told us, and is also what this Discover article discusses.

We tired to see it as our only gift to Henry – that we were stopping his life before the neural connections that let you feel pain are fully developed. And at 21 weeks, we were right at the cutoff point. Of course there is no way to know for sure, but this knowledge, even if it’s just suspected, gave me a great deal of comfort. As Henry’s mom, this was the only way I could protect him. But I still have to work very, very hard to convince myself that it was the right thing to do.

The morning of our scheduled termination came, and I have no idea how I walked out the door of my house. My mom came to get my partner and I to drive us to the hospital. We sat in a suspended silence, waiting, waiting, waiting.

When I was finally called in by the doctor, I first had an amniocentesis so that they could study and replicate some of Henry’s cells (we had agreed to let them use Henry to do an autopsy and to study OI type 2, and our amniotic fluid was going to help them get a better picture). I had my eyes closed during this procedure because apparently, the needle is really, really long, but it didn’t hurt. Then, they showed us to our room.

We had a roster of interesting nurses. Some were a bit quirky and got on my nerves, and others were very sweet and gentle. I had my vital signs recorded every half hour for the entire time we were there (around noon Thursday to 5:00 p.m. Friday). I asked for painkillers only twice – I wanted to savour every last moment I had with Henry with my senses intact.

I suspected that he died sometime in the night, because the induced contractions would have deprived him of blood and oxygen, and, at 21 weeks, a fetus is not viable due to immature lung development. I was very bloated, and I couldn’t feel him anymore.

I was hooked up to an IV to have a constant flow of antibiotics in my body, and, every four hours, had a pill inserted vaginally that induced my contractions.

My partner loyally stayed by my side and in shock the entire time. He felt bad going to the cafeteria to get some food, and he said that he felt nauseous, too.

My water broke after the fifth pill insertion at around 8:00 a.m. Friday morning. I had one last pill strategically placed inside my cervix, then, at 11:00 a.m., I felt Henry descending. I called the nurse, and Henry was delivered at 11:13 a.m. Our beautiful son was born, but he was already gone.

Because he was a very immature preemie, his tiny body was entirely red, and light as a feather. And because of his condition, he didn’t really have a skull. His head was very mushy, and even though he was already gone, I barely touched him while I held him because I didn’t want to hurt him. His left leg was already badly broken, and his delicate skin already had some tears. It then took me  nearly two hours to deliver the placenta, then, as soon as we could, we left the hospital, though we were encouraged to stay.

I didn’t cry during the procedure. I wanted to be strong for Henry, and deliver him so that he could be free. Thanks to our state of shock, my partner and I even cracked jokes, watched TV, and just existed during our stay at the hospital.

We were visited by a psychologist and were given pamphlets and coping strategies and contact information for support groups, and a precious white folder containing a card with Henry’s footprints, and the blanket they swaddled him in while we held him for a few brief moments before we said our final goodbye.

This, my friends, is what hell feels like. And as the days go by, I feel very strange doing regular things since ending my pregnancy with Henry. I look at my belly in the mirror every day to snap myself into the reality that I’m no longer eating, walking, and breathing for two. It’s just me now. I feel guilty reading a book because I travel to the story, leaving thoughts of Henry behind. I’ll watch a movie, and then reality sets back in when the credits are rolling. I’ll shower and eat, but, why?

I’ve been listening to relaxing classical music every day to soothe and change my state of mind. We are even testing doing ‘regular’ things, like going for nighttime walks so as to not run in to anybody, and we even went to see a movie last night, but it felt very, very strange, especially since there were children there. I am living in a Henry-less void – seeing parents spend time with their sons and daughters in a way that I will never be able to do with my child.

This was a difficult post to write, and I’m publishing it with a lot of apprehension. I welcome any discussion that comes from it. It isn’t a cry for pity. I’m not sure what it is, but here you go.

With love,

Mel