Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

So I feel like we are on this roller coaster. One day we are upset and trying to see what we can do to change the outcome. Then we find that place of peaceful acceptance. Then there is upset and we are again in turmoil. I think it is and always is surrounded by Lily’s seizures. They are what sets us in these highs and lows and again we have to say, and something I say very easily with the other two kids, knock it off.
Last night after Lily’s, yet again, late afternoon nasty hard seizure, Andrew and I had a talk.
We take a med away, she has it. We give her a new med, she has it. That late afternoon seizure happens regardless what we do. So I said “what harm is this causing her?” and I mean it in the long run of her life. She has the seizure she doesn’t cry before or after then she falls asleep. Is she more hurt by it or are we? Andrew just looks at me and says so what are you saying? I am thinking to love Lily is to hate seizures. It seems to be no way around this equation. What if we love Lily and be indifferent to the seizures? Maybe if we put less of an importance on them, maybe we can just love Lily as she is. I am not saying we’d love her more without the seizures I think we just have always felt it would make everyone happier for her to not have them. But maybe that isn’t a possibility. Neuro wants us to do brain surgery. But is that late afternoon seizure bad enough to cut her brain open? Is it bad enough to risk, even to the slightest degree, risk her life? No. It isn’t. Seizures suck. I pray one day they cure CDKL5 and learn to wipe out epilepsy. But as of right now Lily has seizures. She has them everyday. We have fought them tooth and nail and they still win, but we can’t let them ruin us. So here we go again. Another round of Acceptance. Lily is safe, she is comfortable and we make sure those seizures never hurt her. So we will once again welcome that peace that comes from that beautiful three syllable word ACCEPTANCE.

One thought on “Acceptance…. Again

  1. Colleen says:

    Words can't accurately say how I deeply appreciated this post. Our Claire seems to be having the daily seizures and we go in the same circles. Deep breathe, thanks for giving words to what I have been trying to work through in my head.

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