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.

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?