This morning, after we had all gotten ready for church, Evie had another seizure. It wasn't a bad one, it was short, but I stayed home from church with her so she could rest. I snuggled her, read, and cleaned for about 3 hours, when she finally woke up.
A few hours after that, at 5, she had another. It was worse, her lips turned blue, her jaw clenched, tears trickled down from her upturned eyes as she clenched her fists and trembled. I kissed her and soothed her. She's asleep now. She probably will be out for the night. I know she will wake up cooing and hungry to nurse, but I'm tired. I'm worried. As the light turns from yellow, to gold, to blue, across the pages of the book I am reading, tucked in beside her, then finally too dim to make out the words, my mind wanders to other things.
On Wednesday, Evie has an appointment with a pediatric opthamologist, who will check for lesions on her retina, which would be more evidence of tuberous sclerosis. I haven't been thinking about it much. Today it hit me that the appointment was this week and that we were going to either know that yes, she has T.S. or no news, good or bad, she can either still have it or not, we don't know. I'm tired. I'm worried.
I have nothing to cling to, to research, I have no group to reach out to, or other parents to console me because we just don't know what is going on. I want to believe when people tell me stories of their children just "growing out of this", but am I setting myself up for more heartache. I don't want to torture myself with stories from people who have children with tuberous sclerosis or brain tumors because, well, maybe she doesn't have that. And what about people who have really ill children, should I feel guilty that my child is perfectly beautiful and wonderful and healthy except for this one small thing, you know, that she has seizures and yet I still mourn for her each time she trembles in my arms? Should I be over this by now? Should I not be emotional? I don't know. I just don't know.
I'm so sorry, Megan. I wish there were something I could say to help, but there isn't. I do know that you're an amazing mom and I am constantly in awe of the grace and courage with which you've handled this. Be kind to yourself. And let us know if there's anything you need that we can help with.
ReplyDeleteThere is no right or wrong way to worry after your children! You're one of the best mamas I know. Hang in there, ok?
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