Tag Archives: grief

Grieving the daughter I’ve lost

21 Jun

I was talking to a friend after coming home from Vancouver and told her that one of the most difficult things about this epilepsy thing is that up until now, for all intents and purposes, Jade was a perfect little girl. Little kids don’t act up on purpose, they just don’t know any better. And despite there having been hard times and long sleepless months, she’s such a happy, easy-going, social child that it was easy to shrug those times off as normal developmental things parents have to go through.

But now that she has epilepsy, it’s like she’s… broken.

Suddenly, I have a child who has special needs. It’s not quite as hard as having a newborn again, but going back to the inflexible sleep schedule and the constant vigilance, well, it is a step back.  Assumptions and expectations for her future (will she grow out of it? will she have trouble learning?) are suddenly in question.

Today was kind of a rough day; Jade was emotional, had more seizures than she’s had for the last three days, was on her second full day of potty training (6 puddles of pee, 1 pantload of poo, 0 drops of toddler sewage actually in the potty) and she also had a couple of accidents (not the potty-training kind) that made me cringe.  After lunch, she somehow pulled a dining room chair over onto herself, tipping her backwards.  It would have been bad enough to have her land on the floor with a chair on top of her, but she also hit the back of her head on the wooden rocking horse when she landed.  Then, after supper, she asked for a bottle, which I gave her.  Thank God I gave her a plastic one instead of glass.  As we headed over to the living room couch to cuddle, she had a short but very strong seizure that caused her arms to jerk forward, flinging the bottle away from her.  She lost her balance while the bottle bounced off the wall and came to rest exactly where her forehead was on its way to meet the floor.  If she doesn’t end up with a black eye, she’ll at least have a lovely big bump on her eyebrow and nosebridge to show off for a week or so.

I might just add here that I am paranoid about head injuries (besides, God knows Jade’s brain doesn’t need any more trauma right now).  I grew up terrified of head injuries.  I have an uncle who, as a small child, was thrown off a tricycle by a bully; the blow to his head apparently caused some brain damage because learning became a much bigger struggle for him ever after.  Perhaps it was this that made my mom extra vigilant, but her frequent warnings made me scared to have even a little bump to the head, lest I lose a few IQ points.  In our house, we were warned to never land on our heels when jumping, because the jarring would travel up our spines and could hurt our brains; I have no idea if there’s any truth in this, but I cringe whenever I see anyone land this way.

Anyway, it was a tough day, and I decided it was a good time to make a phone call for support.  My friend Yukon Jen put me in touch with another woman whose daughter started having seizures about 18 months ago.  It was great to connect with her, although we had to keep our chat rather brief because that very daughter was asking her to do some crafts with her.  Ann was very comforting in some ways, but our conversation also made me realize that in many ways I’ve been waiting for this all to be over sometime soon, even though I know better.  That’s probably one reason today was so hard on me; after three good days with very few seizures, going backwards was traumatic.  But that’s how this thing goes. 

Another thing Ann said was that having a child with seizures changes a lot of expectations and that she’d had to grieve over that, and maybe even still is grieving.  That struck a chord with me because even though I’d told my friend that it felt like Jade was “broken”, I hadn’t thought of it as grieving something I’d lost.  The frustrations of the day came to a head and I had a good ol’ cry after we hung up.

I know I need to keep things in perspective, that there are worse things that could happen.  Ann also said that even though it’s hard to have a daughter with epilepsy, she’s glad that her daughter is with her and not someone else, because she can take care of her.  Michael said something similar last week.  At least Jade has two strong parents who can lean on each other.  Even if one is a big cry-baby after the baby goes to bed.

She soars

11 Mar

I got some sad news today from a friend who got pregnant right around the time I had my miscarriage. She helped me a lot through that tough time because I felt I could share all my sadness with her; it was also therapeutic to focus on her happy news and excitement. Unfortunately, today she found out that she lost her baby. She’s devastated and I can’t even begin to say how sad I am for her and for her whole family.

It reminded me about a post I’ve been mulling over for some time but haven’t written, the one with the song I wrote to help me process my miscarriage. I think this is it.

Back in January, I was using Google Images to find a picture of a GT snow racer and ended up on a blog post that was several years old. The blog had been started by a woman who was expecting her first child. After reading a few of the old entries, I clicked on the masthead to see the most recent post. The most recent post was a year old and linked to the writer’s new blog, but the one right before it told the story of her daughter Ava’s birth. It was a heartbreaking read because Ava died only 7 hours after she was born.

I clicked over to the new blog and — happily! — was greeted by a picture of a gorgeous one-year-old boy. Karla still blogs, and many of her posts are about her beautiful son Nate. That blog is now one of my regular reads.

In exploring the blog, I found a poem that Karla had written for Ava, which she entitled “She Soars“. I’d been wanting to create something to honour the little baby we never got to meet, but I wanted it to be hopeful rather than depressing. Karla’s poem was exactly what I needed to experience. I started out thinking I’d set Karla’s poem to music, but my laptop died and I couldn’t get back on the web, so instead I wrote some new words based on the idea she had given me.

Michael took this recording for a me a couple of weeks ago and I wasn’t entirely happy with the take, but the camera batteries were dying and now he’s out of town, so I guess I’ll live with it. The video quality is lousy because I compressed it so much (slow Internet connection from my oooold computer) but I kinda like the underwater effect, don’t you?

This song is dedicated to Karla, Ava, Stacie, Bobbi, Amanda, Heather, and all of our little angels.

(Here’s a direct link to the YouTube page in case the embedded file doesn’t work for you: http://ca.youtube.com/watch?v=qIxhrAgeHyo)

She Soars

You can float, you can fly
To the heavens so high
Still you will never fly too far from me
You can sing, you can sigh
But you’ll never have to cry
As my love holds you up like a boat on the sea

You can laugh, you can love
As you watch from up above
You will never have this weight to drag you down
You are pure, you are free
You are all that you can be
And my music holds you up on a river of sound

Soar so high
You’re still mine
Tears for you are true
She soars so high
On wings divine
You’re in my heart
So fly, soar so high

You’re a hope, you’re a dream
You’re the one who’s never been
To a place where hurt and pain can bend you low
Like a spark, like a star
I love everything you are
So soar, my little angel, I’m letting you go

Soar so high
You’re still mine
Tears for you are true
Yes, she soars so high
I’m so glad that you can fly
You are in my heart
So fly, now soar so high

— January 9, 2008

Copyright © Fawn Fritzen, 2008