Well, today marks one week for Kendall's run with the max dose of Vigabatrin. No dice. I'm calling tomorrow to see what our future holds...
I have this bad habit of thinking I can ignore something and it will go away. For instance, I pretend I don't see Kendall's seizures when I'm here with her alone. We're supposed to keep a running count, but if nobody else is around, I pretend they're not happening. It doesn't work.
So, when I came home today my mom was upset about a bird situation in our backyard. We have been watching the bird's nest for a while now. Apparently, the mama bird decided it was time for the babies to leave the nest. My mom said the mom perched on the fence almost all day trying to teach the babies how to fly. Around noon, my mom went out to check on them and found one of the babies drown in the pool. She told me about the birds, but remained optimistic that the second baby still had hope. The mom hadn't left the second baby's side in hours. My mom said it was as if the baby wanted to fly, but couldn't. The mama bird (sparrow) kept flying down and walking in front of the baby to show her how. Like, "come on, this is how you do it, I won't leave you, watch me, I'll show you how." I've been checking on the baby all night, making sure our dogs don't go outside and harm it. She's still huddled next to the fence, its getting dark, and the mom is still perched on the fence cheering her on.
I'm sure I don't need to point out the symbolism. I sat in the backyard tonight and bawled my eyes out. Not just cause I think the baby bird has Cerebral Palsy, but because I think the baby bird could also be me. With my mom perched on the fence coaching me along with undying encouragement and love.
It's been a rough year. But my mom hasn't wavered, not once. I can only hope I can be the mom to Kendall that my mom has been to me.
Hudson Rests in His Hands 5/14/2007-1/2/2022
3 months ago
5 comments:
Sniff sniff. I miss my mom, and this was so touching.
I know how you feel. I can't bring myself to counting seizures either. Why bother. I just know there are lots. Way too many to count.
My mom and I are super close...I couldn't have made it through all this without her. We're so lucky to have great moms.
I made the mistake of thinking Finnian's seizures weren't as bad as tehy were and was shocked to find out he was having 40+ spasms in each cluster and he was having 12+ clusters a day. Sorry the vigabatrin isn't working has anyone said anything about the Ketogenetic diet for Kendall? its worth a try it works with meds for us some kids go seizure free once they get into ketosis
Big hugs!!!
A beautiful post, Jocalyn.
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