The dark calls, and it feels inviting…
Each morning we wake up and we hope. We hope todays the day that starts the rest of all the other good days. We tip toe around the house with light feet and heavy hearts as we wait. Sometimes we don’t wait very long, and other times we wait hours, thinking we have evaded the bad days, even when it’s a day or two, but the unwelcome visitor arrives still.
Whether it be a car whizzing by outside, a neighbor’s lawnmower starting up, a zoom conference echo or a toy that we didn’t know triggered spasms, they break through the good day.
We hear her speech stop. Her breathing change. Her nervous movement start and then there they are. Her head tilts to the right and her eyes shake to the side as she reassures me at first “I’m fine.” When I hold her head, I tell her she is safe, and she is going to be okay. She then confesses “I’m having a thing”. The cluster lasts as long as it’s going to as there’s no way to tell once it starts and as it ends, she flops to my arms, and cries. I wonder if she cries from discomfort or from confusion. I have no answers.
While I have no answers, I have hope and faith and I pray for a better day tomorrow.
#epilepsy #westsyndrome #infantilespasms #anxiety #motherhood #epilepsyfamily #epilepsywarrior