On death, impending labour, and threatened with court

My beloved grandmother died early this morning. I jokingly made her promise me last week she’d wait to leave us until the end of the month, when Henry’s brother is supposed to make his debut. I don’t take it personally that she didn’t stave off her severe lung infection needing constant oxygen support, recent heart attack and broken pelvic bones, and chronic several pain, arthritis, and early onset Alzheimer’s just to meet her second great-grandson (what kills me, is we tried. Henry, if you lived, you would have met your Great-Nana). It was time to go back home and be with her family, all of whom died before the age of 70. She made it to 94. What a woman. I will miss her dearly.

My Nana’s funeral starts on Thursday with a few hours of visitation in a funeral home I always thought sounded like a candy store. Urgel Bourgie. Friday is the remembrance mass and burial. Friday is also my soft due date (we’ve been sticking to the 27th – Sunday – as baby’s date of arrival, but in all calendrial honesty, he’s due the 25th).

Will I be at the funeral? Will I be in the throes of labour? I guess we’ll see. You never know when you’re going to come or go in this life.

In bad news, I found out that I tested positive for streptococcus B. If transferred to baby, it’s fatal. Great. More things to worry about. I pray Henry doesn’t meet his brother before I do. But the antibiotics I’m supposed to have as I start labour are supposed to protect him.

And I’ve mentioned I have a step-son before, have I not? Did I also mention his mom is, hmm, to avoid public defamation, is, in the most PC way I can express it – leaves much to be desired in her parenting competency. She believes her high-school dropout roaming minimum-wage earning ass is going to prevent us from moving a few provinces over in the middle of next year, with my step-on, of which we have full custody, to a two-year postdoctoral position offered to my betrothed, at a significant raise and an overall boost to our livelihood.

Forget the fact that my partner (who will soon be my husband) will have myself and our newborn to support, plus his son by this she-devil who, if we do go to court, will drain every last red cent we had saved up for our impending move and to float us by the next few months while we focus on baby. She doesn’t even want to change the frequency of her visitations, which is supposed to be every two weekends, but is usually, maybe, only once per month, with nary as much as a phone call in between. The drama lama has hit my family hard.

Grandma – strep B – ex-girlfriend/step-son … whats’ that thing about women close to labour needing to relax and prepare for the big push? You know, that thingy about them being the priority so they’re feeling good and supported and taken care of so labour goes as well as possible?

Apparently, I have to be super human and try my best to filet away the drama, accept Nana’s gone, and not worry about strep B because antibiotics will take care of it so I can be as relaxed and well-rested as possible for the big (enormously overshadowed) day.

So this is your warning. Don’t you dare tell me everything should turn out okay, or not to worry, or sprinkle sugar on any of this. Shit with sugar on it is a waste of perfectly good sugar. It damn well might not work out at all, and I have no illusions about it. I’m stressed, I’m sad, I’m worried, and I’m supposed to be giving birth within the next week. Please pocket your helpful words of advice because I pretty much guarantee you’ve never experienced compound events like this. If you have, then let’s talk.  Not to sound defensive, but I  can already feel well-meaning words of advice fluttering around this blog post, so, please don’t bother. I’m just pissed off. At life.

I have one dead son, one dead father, and no grandparents left. My last one checked out today and I haven’t really stopped to process her death yet. And a step-son who won’t stop talking about how his mom is going to take us to court, sue us, and win. And a partner who is racing to finish and submit his Ph.D before I give birth. How’s that for a hectic week? Ah fuck, and it’s only Monday.

 

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One, seven, one

I’m really not sure which blog this post should belong to. Since it’s an emotional time of year for me, I’ll let it live here.

One

This Saturday will be my first child’s birth and death day. On September 28, 2012 at 11:13 a.m., my beautiful son, Henry, was born broken and sleeping.

Life has irrevocably changed.

I’m less patient and more patient. I’m less understanding and more compassionate. I’m less tolerant and more tolerant. I’m less hopeful and more pessimistic. Who I am doesn’t really matter. This doesn’t make much sense because losing a child doesn’t make any sense. Life is on a random-generating system, and I’m just a marble rolling around bumping in to things, trying to squeak out a living.

Seven

Tomorrow, on September 26, I will be celebrating seven years with Henry’s dad. Life with him does make sense, and the love I feel for him anchors me. I’m proud to be someone he chooses to spend his life with, which helps shine a light through my wretchedness, essentially making me lighten up and see life isn’t all bad.

A quick Google search will bring up items on there being seven-year cycles. Your body is new after completely regenerating all its cells, then there’s the seven-year itch, and seven is a lucky number, yadda yadda. Appropriately, this year is going to be our last September anniversary. On March 14, we’re getting married, giving us a new date to celebrate.

One

And finally, in one month, if all goes well, Henry will have a little brother. Someone who shared the same space he did within me, and will fill our days with a sleepy contentment that we can achieve parenthood together. A little blue-eyed, delicate human that we made and will raise in our own loving, quirky way.  He’ll have a step-brother, but equally important, we will teach him who Henry was, that he’ll always have another brother no matter what comes. All of this just blows my mind.

I feel reflective, and only slightly willing to peer down the twisting path that has brought me here today. Growing up, I never wanted children. Never wanted to get married. But life shook and rattled me, making me change my mind and seek out stability, companionship and love.

All of this makes me so tired, and sigh deeply. Life is hard work. I’m surprised I’m not more of a hedonist, where I feel it’s okay to escape life and go live out my days getting drunk on a tropical beach, not worrying about a thing.

But it is what it is. Random situation generator, marbles, and all. Even after the death of a child – that horrifying nightmare, that thing that’s not supposed to happen – here we are, one year later. Waiting to see where the marble will roll to next. Hopefully not in some dusty corner.

Two months ago

Two months ago, I gave birth. Part of me will always be in that delivery room on the fourth floor of Sainte Justine Hospital, across from the nursing station, in one of the newly renovated rooms for mothers like me. A picture of a kite blowing in the breeze posted to the door lets nurses and staff know that the woman inside is experiencing one of life’s greatest tragedies.

Two months later, and only because plans for tonight were put in motion in early spring, I’m going to see Leonard Cohen at the Bell Centre. He is sometimes called the High Priest of Pain, so I will be in good company.

Tomorrow, I take to the skies on a weeklong trip with my mom for some rest and recuperation with sand, beach, booze and sun. And I get to bring Henry with me thanks to my pretty little locket :-).

Two months later, life is nearly unrecognizable, but I’m surrounded by the same people, sitting on the same furniture, wearing the same glasses, but with a gigantic Henry-shaped hole in my heart, and an empty womb. I wonder what my beautiful son would have looked like had he lived to seven months in utero?

Just a wee bit of blood

My period finally came. I was wondering if and when it was going to happen. My body has cycled off and is preparing for the eventuality of nurturing another life – just like Henry never happened.

And just like that, lady uterus spits out another one.

My body betrays me. I’ve put everything on hold in my life, and I mean e-v-e-r-y-t-h-i-n-g. How can my biology do this to me when I’m not ready? How can my womb be willing to do it all over again when mentally and emotionally, I’m still in that delivery room, I’m still seeing my child, born dead, I’m still saying goodbye.

It explains my mood in the last week, though. I’ve been irritable and pissy in general in the last month, almost in its entirety. But in the last week, I’ve been shooting laser beam daggers with electrified bees from my eyes with higher frequency.

Frickin laser beams

I’ve been the Sandy of Sainte Anne de Bellevue and the lives of my little family. And now I know why (sorry guys). I’ve been gracefully selfish, too, feeling and even saying that if you can’t handle my mood, then buck up princess, or get out of my way.

How could my body do something so normal as to have a period after I forcibly ejected my baby from my womb a month ago? F*ck off, body.

Don’t be scared or say eewww.. it’s where you came from, darling.

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