Tag: epilepsy

Anything about June

~ Helle Cecilie Palmer ~ 7 Comments

Whenever I think about June, there’s a song that always pops into my head. You can simply say “June” to me, and I’ll immediately respond with:

You can call her June
Though she wasn’t born that month

It’s one of those wonderful songs that makes me wish I could sing and play the guitar.

And the things I could’ve sung for her
Would have been about all I wanted

So as I sat down to write a blog post about June, naturally I had to listen to this song.

And nobody knows
Why she was left alone
Nobody knows
Anything at all
Anything about June 

I know what I want to write about. I want to write about how wonderful it is to not have to dress Aurora in layers and warm clothing (which she hates). I want to write about the joy on her face as she lies outside in the sun, the breeze caressing her face and playing with her hair. I want to write about how much easier it is to take her places, to feed her. I want to write about how summer means a greater sense of freedom.

Oh June
Who would sleep through all of November
And some things growing in my window sill
Are there to make me remember 

And I want to write about last June. Last June, when things were relatively good. By the end of May, Aurora had stopped screaming every day. She could tolerate being in a room with more than one person, meaning we could finally have dinner together as a family, the four of us. I want to write about how we were optimistic, and how everything changed one Friday afternoon. I want to write about that horrible weekend when we googled “infantile spasms” and feared the worst.

I want to write about how we pulled through. Again.

 And nobody knows
What she could have been
Nobody knows
Anything
Anything about June

But I’m not able to start writing the blog post I meant to write. Because I listen to the song. I listen to the lyrics. And I know that this song was written 20 years ago, and that it’s not about Aurora at all. But it might as well be. That’s the awesome thing about music, isn’t it? Nobody knows what she could have been. Nobody knows anything about June.

I want to write about how difficult it is, not knowing what the future, let alone next month, will bring. I want to write about the constant uncertainty, the lack of straight answers to our questions. But that’s another blog post, I think. For now, I just listen to the song. And think about June.

Oh June
Who I know disappeared in May
And the things you would hear in a lifetime
Are nothing
Nothing she would say 

And nobody knows
About her wind and where it blows
Nobody knows anything at all
Anything about June
Anything about June
June 

Anything ‘Bout June is a song by singer/songwriter Unni Wilhelmsen. Check out her website and find her music on Spotify. 

This has been a Finish the Sentence Friday post, hosted by Kristi Rieger Campbell at Findingninee. This week’s sentence is “Hey June…”

Trust your instincts

~ Helle Cecilie Palmer ~ 1 Comment

Did you know that “just a cold” can turn deadly in a matter of hours?
Monday, 7 pm
Just look how sick her big sister is. No wonder Aurora gets it even worse, she’s just a baby!

Tuesday, 1 am
Should we see the doctor again? But we had her checked only 12 hours ago!

She’s had a fever for three days straight, no wonder she’s fussy.

Wow, I just sneezed loudly twice, and she did’t even react. Usually she jumps out of her skin at loud noises. She must be really sick, poor thing.

Should we take her to the on call doctor? But it’s the middle of the night. And it’s -15 degrees Celcius outside! Will we make her even worse by taking her outside now? Who will go with her, and who should stay here with Iris? Should we call their grandparents for help? But it is the middle of the night. Should we just wait until morning?

Tuesday, 3 am
Wow, that’s a lot of spit-up, even for her.

Why won’t she sleep?

Tuesday, 9 am
No wonder she’s lethargic, she hasn’t slept all night, she’s really sick and she has a fever.

Tuesday, 11 am
It looks like she has a stomach ache, maybe she’s caught a stomach bug?

Tuesday, 12 pm
Why won’t she nurse?

Tuesday 1 pm
What if she becomes dehydrated?

Good, at least she’s drinking some milk when I feed her with a syringe.

She won’t swallow.

She’s not reacting to my voice.

She looks dead. But she’s breathing.

Okay, call the doctor. Now.

From “just a cold” to deadly disease
At some point during those last 12 hours Aurora’s cold (which, we learned later, was an RSV infection) turned into deadly meningitis and encephalitis. Meningitis symptoms in small children are very much like cold or flu symptoms – so how can you tell if your child has meningitis before it’s too late?

24Hours

The first thing you can do is educate yourself. Know the signs and symptoms. Not just the late symptoms, such as seizures and rash, but the early warning signs, such as nausea, headache, sensitivity to light, fever and so on.

Symptoms children

The second thing to do, is trust your instincts. If your parental instinct tells you to call or see a doctor, even if you did so just a few hours ago, do it. Do not write off your worries as hysterics. Harshly put: it’s better to nag a doctor than to lose your child. Meningitis can turn deadly really, really quickly.

I wish I’d trusted my instincts that night. Instead I waited until morning and early afternoon before taking action. It could have been to late. Although everyone keeps telling us we did everything we could, I can’t help but wonder if the after effects would have been less severe if Aurora had gotten to hospital earlier. There is no way of knowing. What I do know is, if Aurora had died that day, I would have blamed myself for the rest of my life.

Effects

All images are from the World Meningitis Day toolkit, which can be found on The Confederation of Meningitis Organisations’ website.

Coming to terms with my daughter’s disease and disability

~ Helle Cecilie Palmer ~ Leave a comment

I need to wake up from this nightmare. Because it is just a nightmare, right?

Aurora is screaming. Her spastic body is tense in my arms: fists clenched tightly, legs extended and stiff as a board all the way down to her toes. Her neck arches backwards, pressing into my chest. Every now and then her arms and head make a jerking motion, as if she’s startled by something – a sign of the epilepsy that has gotten worse these past days.

A few months ago she was a healthy, typically developing five month old baby. And I was a typical mother of two small children, trying to juggle life with kids, marriage, work, mortgage and hobbies. Then, all of a sudden I found myself sitting next to my youngest child’s hospital bed in the paediatric intensive care unit. What started as a cold had turned into meningitis and encephalitis. A tube was draining fluids from her brain. A rack with several syringes was pumping strong pain killers and sedatives into her bloodstream. The painkillers were so strong that they literally took her breath away, and she had to be on a ventilator. Twice a day antibiotics were shot into her bloodstream through an IV line in her neck. For weeks my husband and I was with her at the hospital, watching her gradually get better. Fuelled by denial and hope and coffee, I coped, handled it, tried to stay strong for my daughter. The nightmare felt so real back then. But I would wake up eventually, right?

The amazing intensive care doctors and nurses saved my daughter’s life.

But the disease stole so much from her. It took away the things she had learned the first five months of her life. It tok away her motor skills. It took her vision.

And it gave her things she never asked for. It gave her epilepsy. It gave her cerebral palsy, making it so much harder for her to catch up on her motor development. And it caused her so much pain.

I know – I know – that you can live a perfectly good life with epilepsy, CP and vision impairment. And I do realise that even if her cognitive skills should also be impaired, she will be fine. We will be fine.

But what gnaws at me constantly is this: It should never have happened. Granted, there is (for the time being) no vaccine against the type of bacteria that caused her meningitis. There was nothing we could have done to prevent it. But still, this should never have happened to her. She has done nothing to deserve the kind of pain and suffering she’s been through, and all the obstacles and challenges that await her in the future.

The disease has changed her. To what extent we have yet to find out. She’s still our darling little girl, and at the same time she’s not. I love her so much it hurts. And I find myself mourning the girl that I lost that day in the ambulance on our way to the hospital. I will never get her back just the way she was. I know that. But I miss her. I look at photos and videos of that healthy happy baby and I bask in the wonderful naivete I surrounded myself with then: It will never happen to us. And then it did. And it changed me as well.

How does one come to terms with one’s child almost dying and being left disabled? How do I rid myself of the guilt I feel every single day, although deep down I know I did everything I could for my kid? The doctors saved her life, but so did I, because I got her to them in time. She would have died if her father and I hadn’t acted quickly. I know this. But I still blame myself for what happened to her. Because I am her mother. I’m supposed to keep her safe.

I tell myself I should be thankful she survived. And I am. But I’m also mad at the disease for what it has done to her. Dealing with what has happened stirs up so many confusing and conflicting emotions. I’m angry, but I’m thankful. I’m bitter and depressed, but I’m also happy and optimistic. I’m sad and sorry and worried. I smile and laugh and cry. I am trying to come to terms with our new life, and I’m mourning the easy, normal life we used to have. A life without medication, seizures, endless doctor’s appointments, physical therapy and gut-wrenching worry. What wouldn’t I do to rewind time? But the past is slowly fading. This is our life now. We must be moving forward.

I hold Aurora tightly as her screams subside into sobs. I remind myself that this is one of the bad days. That most days are better than this, after all.

I press my cheek against her cheek and mutter into her ear: “Shhh… It’s okay, sweetie. Mommy’s here… I’m here…”

We will be fine. I don’t know how yet, but we will be fine. We have to be.

This is a post I wrote back in June, but I figured it was a good place to start this blog. A lot has happened since then, and I will write about that at a later time.