Coming to terms with my daughter’s disease and disability

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.