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Our daughter was seizure free for three years, five months and eighteen days. Last night on the eve of her twenty-first birthday that changed. After over three years we all had gotten used to the freedom, the absence of fear and worry; we had gotten complacent. I believed that we were through the epilepsy chapter in our lives. I was wrong. Today as we celebrated her birthday we were also mourning this new reality. The celebration of her birth was much more important, much more meaningful but we hadn't slept and so the grief was visible in the tiny cracks and crevices of our happy, happy smiles.
We have everything--- God has blessed us richly in so many ways but chiefly with the love and support of family and friends. Our beautiful daughter's sunny disposition and cheerful ways make her easy to love. She has many supporters, maybe people like you. And so we do what we have done many, many times before. We stand up, we join hands and we start to count again. We count the days without seizures. Today is Day One
And a beautiful day it was. I loved celebrating Hayley. She was lovely. We had a wonderful celebratory lunch and only later she told me how much her mouth and body hurt from the seizure. She bravely soldiered in and so will we by her side! You can do this Hayley. Xoxoxo
ReplyDeleteThank you Mary for making her day a special one. If only we all had such wonderfully supportive Godparents...
ReplyDeleteJacky,
ReplyDeleteAs a person diagnosed with left temporal lobe epilepsy at 30, I feel your (damn it) pain. I spent 18 months in my mid-30s coming off Dilantin, and was seizure free for 25. Then 2018 I blacked out at work. Bran scan revealed nothing physiological, yay! but my worry it might be epilepsy loomed. EEG revealed no erratic spiking. Cause remains unknown. But, the blackout preceded with an aura, and I’ve had a few since. I sit, breathe deeply and they come and go. There’s a connection to sleep, stress, fear, and alcohol. I manage myself as best I can, tough these days. The reason I shared my story is to give hope, your daughter can have a very good relatively carefree life. I’m sorry you had the setback, but celebrate 3 years and start living the next many years. ❤️
Thank you Jane. Your story does give me hope. It also reminds me to focus on the good...I appreciate that! Thanks so much!
ReplyDeleteOh, Jaqueline! Our family knows what you are going through. One thing we learned is that Hope somehow rises up. It comes from the One who is Hope. You can do this. There will be many joyful days to come for Hayley. ❤️
ReplyDeleteThank you! Your kind words mean so much to us all...Hugs,
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