The due date

It’s coming. In six days. When Henry was supposed to be born.

I’m observing myself.

How do I feel? Am I okay? How should I feel?

And there aren’t any roadmaps here. It’s desolate, and hard to see three feet in front of my face. I don’t know what’s there. I don’t know how to prepare myself.

There could be smooth road, or there could be a giant pothole, like a swimming pool, and if I’m not careful, I could drown in it, or at least wallow for a while.

My non-pregnant self is desperately scaling the walls. She wants to have a baby in her, this womb of mine. It was supposed to have a baby in it, but genetics had a say about that and took away motherhood after we thought we were in the clear.

And now the due date approaches. It’s going to come quickly. Fiercely. Ruthlessly. For this son of mine who was already born. A due date for a dead baby who already has a birthday.

There’s no logic for this. Babies aren’t supposed to be dead. They’re supposed to pass milestones and make friends and learn and grow and laugh and cry and change and be hugged and loved and taught. They’re not supposed to be dead. But mine is. The Grim Reaper was beside me the whole time. Waiting to collect what was his. And now he has Henry, and I’ll never get to hold him again. Aside from his ashes, worn around my neck, close to my heart.

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?

What if

This is a beautiful quote a friend just shared with me:

“Perhaps they are not the stars, but rather, openings in heaven where the love of our lost ones pours through and shine down upon us to let us know they are happy.”

Thank you L.B. I hope so.

xoxo

Remembering Henry on October 15

Image courtesy of Small Bird Studios

From sharesv.org:In October 1988, President Ronald Reagan Proclaimed October as National Pregnancy and Infant Loss Awareness Month. “When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, their isn’t a word to describe them. This month recognizes the loss so many parents experience across the United States and around the world. It is also meant to inform and provide resources for parents who have lost children due to miscarriage, ectopic pregnancy, molar pregnancy, stillbirths, birth defects, SIDS, and other causes.”

October 15 is a special day in this month of awareness to break the silence that surrounds pregnancy & infant loss, and infertility.

I will never forget my son. From the moment I found out I was carrying him, to every moment until the day I also pass on. I remember his kicks. I remember seeing him wiggle away from the ultrasound wand the first time we got to see him, and how we fell hard and fast in love with him all over again. I remember his birth, and his bright red skin, and how absolutely beautiful he is. I remember that he has his dad’s ears and my mouth. I’m reminded that there isn’t only pain in this journey – Henry brought us a lot of happiness.

We miss you, every moment of every day.

A story of lost hopes and dreams, or, the little things

When you lose a child before he or she is born, parents like my partner and I often aren’t recognized in our grief and sorrow.

Even though we have been sheltering ourselves from the world, we have still managed to hear the stinging, slap-in-the-face comment from some well-meaning friends and family of “you can just try again.” Or people liken our experience to a miscarriage.

I even had one family member call me the other week – it was a nice intention, checking up on his niece, but he did all of the talking. He went on and on about things that are not meant to be, and how he and my aunt actually went through the same thing when they were young and weren’t ready to have kids, so they had an abortion long before my cousins were born. He then told my mom that I sounded fine, and didn’t see what the big deal was. I’m young, and it was just a fetus – why don’t I just try again?

How am I supposed to talk to someone like that, though? He called with a certain agenda, to “make me feel better” but I felt he was so out of touch with what actually went on, and he gave off a vibe of “been there, done that, it’s not a big deal,” so I just said “uh-huh” until he felt like he gave me sufficient ‘help’ and I could just hang up and get back to my mourning.

I know it’s difficult to talk to us. It’s difficult for us, too. I know there are no words to adequately express anything. There isn’t anything nice anyone can say about losing a child. Any silver lining this dark cloud has has already been exhausted by us (yes, we ended Henry’s life before he could really suffer, yes, we at least had five whole months of being happy expectant parents, yes, it wasn’t meant to be, bla bla bla). We don’t need to hear filler, we don’t need to be distracted from our pain – that’s only going to make us feel guilty for leaving Henry behind. We’re not there yet.

Let me gently spell it out for anyone who has thought of, or wondered these things:

No, it’s not the same thing as a miscarriage or electing to have an abortion because you’re not ready to be a parent (absolutely no judgment for those who have had an abortion for whatever reason, and we do feel terribly sad and sorry for you if you had a miscarriage, which is also an enormous loss – I’m just saying what we’re going through is in no way the same thing as these).

No, we’re not going to “just” have another kid – we didn’t lose a puppy that we can just replace, and we didn’t simply “lose” our baby. We actually chose to end the life of our son. He had a fatal disease. His life was ripped from my womb through dose after dose of medication, and I gave birth to a tiny, non-viable, dead baby. We gave him a name. He is part of my family. We love him and cherish him, and, we already have to stick up for him as a baby that counts in this world.

And our grief is real. We’re not going to just ‘get over it’ and make another one to fill the void Henry has left. If we have other kids, it will be on that kid’s terms, and not as a replacement for the one we had to say goodbye to.

The type of loss parents like us experience is a loss of dreams and hopes and the little things we did in preparation for Henry in our lives.

I had a closet full of maternity clothes that I had not even had the chance to wear. When I picked out those clothes, I had bigger, winter-sized me in mind. And another full set of clothes sent to me from a dear, beloved friend. I was even starting to look for a winter coat that would encircle my rotund shape.

We even had a package in the mail that was en-route from a dear friend in New Zealand for our baby. It arrived after Henry was gone, and I didn’t open it. All the maternity clothes are packed away and hidden at my mom’s house to stave off any reminder of the ignorant bliss we lived in for nearly half a year.

We had an entire bedroom set up, and a few months prior, we rearranged our house to make room for baby. We moved the rabbits downstairs, and my step-son in to the rabbit room. My step-son’s old room became the baby room. The room had been filling up with so many wonderful gifts of clothes, furniture, books, baby monitors, and many other useful things. It still smells like a baby room, and even though it has now been emptied, I can’t go in there.

We were looking in to daycares here and in the city we might be moving to in a few years, and were giving hints for the baby shower friends and family were planning for us and had a registry all drawn up.

We were wondering what this little person was going to be like, and were already figuring out the types of books we would read to our precious little one. We definitely wanted him to be well-versed in imagination and happiness, with an early introduction to good music and science.

We were preparing for months of sleeplessness, and rearranged our room so that our bassinet would fit on my side of the bed. We even bought a new dresser that better fit the new setup. We had everything planned for how long we were each gong to take off work once baby was here.

We thought we passed the first trimester miscarriage danger mark that all parents-to-be endure. We assumed we were in the clear. I could feel baby kick nearly constantly, which brought me so much joy. My food preferences and body had all changed for baby. I visualized daily play and snuggle time with baby on my living room floor on a blanket I was making for the occasion. I pictured myself spending my days outside walking, introducing Henry to animals, trees, and how the outdoors smells and feels, and couldn’t wait for Henry to meet and play and grow up with two other newborns of my partner’s best friends.

This baby was real and already the most important part of my life.

My dreams and hopes shattered at around 11:00 a.m. September 19 when that first ultrasound doctor didn’t tell us that our baby measured just fine. Now, we’re that couple, walking the nighttime streets with our heads bowed low, just wandering, just the two of us – no longer three. We’re mourning Henry and the dreams and hopes he brought with him when I first saw that positive pregnancy test.

We lost our child before we got to know him. We’ll never know what he would have looked like, sounded like, what foods he would have preferred, what hobbies he would have picked up, and the relationship he would have had with this step-brother. We mourn our son as though he has always been here, and our nerves are sensitive and raw on some days.

Please feel compassion for us before asking us if we’re going to try for other kids, like Henry never mattered. Please don’t wonder how long it’s going to take us to move on. We move with – not away – from the child we made and love who is walking on the other side.

This song has been with me since last night, thankfully replacing the “I lost my baby” torture song. I don’t understand what Grimes says in the song, but the feel of the tune is about right, and the video is interesting. And, because sometimes I feel like a mad-woman, I like watching the ladies mess up their faces with makeup, or paint, or whatever, and their dancing.  Enjoy.

With love,

Mel

Lost for words

I feel drained and at a loss for words today. Yesterday’s taboo post said and took a lot to post, and I’m having another sad and down day today.

I’ve had a cruel song stuck in my head the past few days, and I wish I could shake it out, and it’s ironic, because I lived part-time in Ottawa when I found out that I was pregnant with Henry: 

With peace,

Mel

Happy one week, Henry my love

Henry was born exactly one week ago at 11:13 a.m. at Sainte-Justine’s Hospital.

That’s about all I can say for today.
Some days, I feel like my heart is dying, and all I do is cry.
I miss my baby.

Rest in peace my angel.

Since his birth and death a week ago, I have:

  • worn almost the same clothes every day
  • not worn any makeup or jewelry
  • not really spoken to any friends or family, and if I have, it’s been brief
  • had friends and family clear out Henry’s room. All his stuff is in storage until I don’t know when, including all of my maternity clothes
  • resisted smashing some pottery that is in the drying stage in my basement
  • called Mount Royal cemetery to arrange the pickup of Henry’s ashes
  • made a 6-week appointment with my OBGYN
  • began working on finishing a knitted blanket I started years ago
  • learned that I am experiencing both grief and trauma
  • have only been out of the house three times
  • started this blog

I try to make little goals for myself for the day. If I don’t achieve them, it doesn’t matter. Some days, it’s to take a bath (still haven’t gotten to that one yet, though I’ve taken a few showers, miraculously), other days, it’s to read one of the pamphlets the hospital gave us. Surprisingly, the only daily goal that I’ve been able to keep up is this blog, and to make sure my rabbits and cat are fed. I really don’t care about anything else right now.

With peace,

Mel