When my world shakes, my heart breaks

Our lives have been flipped upside down in recent weeks.

Our young daughter Abby, 13, has been having seizures. So far there have been three. Two occurred two weeks ago and in her sleep. One here at home then another later that night in the emergency room. After several tests, she was diagnosed with Rolandic epilepsy. We were told she would likely only have them when she slept, and that she'd likely grow out of them in a few years. We also were told she could possibly never have another seizure again.

So not a perfect scenario, but at least I figured if and when she'd have a seizure she would be safe at home with me, down the hall in her bed and I'd hear her, I could care for her. I could keep her safe. I thought at least she wouldn't be alone out in the world surrounded by strangers, without me if a seizure struck.

I thought at least in the daytime I could breathe.

But two weeks later, one of my many fears came to be reality. About 8:30 a.m. on Monday  school called.  Abby had a seizure in math class (with a room full of kids).  Her school counselor made the call. I can still hear his voice. So calm, empathetic and careful.

I panicked, drove up to the school in my PJs. As I pulled up to the school there was the ambulance, fire truck and police car, the typical response to a 911 call.

I ran to the classroom where I found my baby girl on the floor surrounded by paramedics, teachers, the school nurse, counselor and the principal. They were yelling at her to respond. She looked so dazed, lost.

But at one point she looked up at me and smiled - which felt so amazing to see - although later she said she didn't even remember seeing me.

Her last memory before waking up in the ambulance was sitting in her desk going over a math packet handed out by her teacher to study for ISAT tests. A typical uneventful moment in an average day in middle school. No real triggers to speak of. No warnings.

So now the doctor says she doesn't have the typical Rolandic epilepsy, he first diagnosed her with. This means there is no way of knowing when a seizure will take hold of her little body.

It is unpredictable and unkind. It is as if a demon has come into our lives and refuses to leave. It is as if there is a dark cloud over my home and over her where ever she goes.

Damnit! I just want to swear and yell and throw things!! I hate this demon! I hate him!! Get out of our lives!! Leave my child alone!! Damn you!!

I hate this for her. I was so comfortable giving her some freedom, letting her come home on her own after school when I was at work. She loves being home alone and doing her own thing, dancing, singing.  I never worried about her alone. She is at the age where she is old enough to shower when she wants and go swimming, bike riding, hiking even. I don't need to hold her hand and follow her everywhere she goes.

But that has all changed. Now I feel like she is a toddler all over again and I need to watch her every move.

I don't sleep well, because I listen for her down the hall. I listen to hear her headboard bang on the wall. I fear I will hear that sound again. I don't ever want to hear that sound again.

When she is at school and the phone rings, I panic. When she is in the car next to me I look at her when she isn't looking. When we are in the family room, kitchen, out at a restaurant or at the store, I watch her so closely. If I hear something drop on the floor or hit the wall in the next room, I run. I watch her  as I did when she was a baby finding her way around her new world.

The doctor, the expert, says to live life as normal. He says to let her do what she wants to do. He told me "You can't put her in a bubble."

Truth is, I would if I could. I'm actually looking for a bubble!

I have heartache, fear, anger and panic rushing through my veins. I am so mad! And you know what? Abby is fine. She says she doesn't care about it and knows the medicine will work, we just have to get the right medicine, she has said. She doesn't even care that she had a seizure at school in front of the other kids.

She makes me want to be a stronger person. I am in awe of her strength and fearlessness. May I find the same. But I know it won't be today.

Please like, share and comment. I have more to say about this experience as it is still on-going, and I'd love to know of any similar scenarios in your lives.

Until next time love each other

 

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  • The demon in your home can be controlled. By medication, it may take trial and error till the dosage is right but there is a light at the end of that tunnel. Be thankful for that. The demon that entered our home took from us almost 4 years of my sons' youth. I didn't know the young man that the demon resided within. That demon created anger, frustration, tears, fears, depression, lack of trust, and even some hatred. Did I yell and scream? Yes. I even physically fought, but the demon I fought against was stronger than myself, my husband, our younger son, and any one who tried to help. I had to let my child find the depths of just how awful this demon could really be. It broke my being, I had no choice, our family had no chance of survival if we didn't let the demon have its way. We tried rehab, didn't work, wasn't ready? I can't say. But the demon took him to the brink of deaths door twice. Only through the grace of God do I believe he was rid of the demon. Why him, I believe to to the work he's trying to accomplish now. You may have read Amandas' article about him. He's trying to open The Other Side. It's a sober bar in Crystal Lake. A place for young people to go without the influence of drugs and alcohol. He's been an inspiration to many,but to me he's my son and I'm so proud to say we no longer have the demon in our home. Our demon was drugs. The demon that nearly killed him twice. HEROIN. We never saw it coming, don't let demon find your home. Know your children's friends, trust you gut, and don't worry if they don't like you. It's part of parenting, it gets better as they grow up and realize you really do know a thing or two. Just thoughts on a Demon.

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