Children with disabilities

Breakthrough seizures

Emma has really been hit hard lately. She had a shunt revision in February, norovirus in March and the flu and ear infection in April. Her body just couldn’t handle it anymore and the seizures finally won. Tuesday night Emma had breakthrough tonic clonic seizures that landed her back at Nemours. My poor baby can’t catch a break. Her life and mine are exhausting. I feel helpless and there is nothing I can do to change this. I am slowly feeling defeated and less optimistic about our future. The realization that this is our life makes me feel as if I’m in mourning. No, thankfully Emma is ok but any sense of normalcy of what I thought life would or could be, is dead. I’m absolutely terrified to go on vacation or leave Emma alone with anyone but her nurse. We can’t go to dinner or the movies. Emma’s medical diagnosis’ prevent our entire family from being “normal”. Emma has made me and my husband better people but at the end of the day I didn’t sign up for this. Emma didn’t and neither did her two sisters. I can’t help but resent anyone who has a different life than us. Anyone who can go out to eat as a family or take a trip to the beach without weighing the pros and cons and always concluding that there are more cons. It’s not worth it. This is not fair and I know “it could always be worse” but why should it? Why should it be worse? Why can’t I say “it could always be better!”? For anyone who resents their life sometimes please know you’re not alone. I love my daughter and will and have always done anything I can for her but that doesn’t mean I can’t help but dream about what life would be like if things were different. Just for a moment. Just while I sleep.

1 thought on “Breakthrough seizures”

  1. So sorry to hear about your babe… and the struggles you guys are going thru on a daily basis. Please know that we think you all are amazing, and god only gives you what you can handle. You are amazing. Happy Mothers Day. Sending you added love and strength 💖

    Liked by 1 person

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