Some days we sing and some days we cry...

Friday, December 5, 2014

It's been almost a year since Paloma's first seizure, a traumatic day I wish I could erase from my memory. Now some fifty and counting seizures later, this trauma has become our way of life.  Our new normal. I'm hopeful CBD will improve the quality of Paloma's life, but I know that it's quite likely she will have seizures forever. I've been asking myself this past year, how do I live in this continual chaos? How do I let it not kill me? I'm planning on talking to someone soon, but I doubt they will have the answer either.  I have PTSD from witnessing my oldest child almost die.  Now I have to live through the same fears on an almost monthly basis. Some days it's all I can do to keep my shit together. I have two other kids whom I'm partly responsible for not completely messing up.  I have to not only hold it together, I have to show them the way to live through this. 

  We don't make many plans anymore. I've had to say too many times this past year, sorry we can't do that now.  Just the other day we were on our way out of the house to the museum, when Paloma had a bad seizure that wouldn't stop.  After calling 911 and arriving at the ER I had to make the hard decision of either getting on a helicopter with Paloma, who was having trouble breathing due to the massive amount of medicine pumped into her body, or leaving the other two alone in the lobby with a hospital volunteer until David arrived.  I chose to not get on the helicopter, not knowing if I would see Paloma again. The second time I've had to watch helplessly as my children were lifted away from me.  I overheard the volunteer comforting the other two in the lobby, explaining what was going on with their sister.  They looked unfazed by it all.   This is our life on any given day.

 I can't say I've learned how to balance the fear and hopelessness that comes with having a special needs child.  I don't have much of anything figured out but I have learned that on the good days, days when everything feels right, days when we can almost forget the word seizure, we celebrate. Sometimes we go over the top.  We've practically lived at Dairy Queen this past year and said yes way too many times on the toy isle, but I don't feel guilty about it anymore. It feels good in the moment and it brings a small amount of comfort. Last weekend we walked all the way through IKEA  before we had to leave because of a seizure and it felt good to walk through the store and pretend that curtains and cabinets were the biggest decisions we are facing right now.  Those days get us through the tough ones.

The inevitable bad days, days when I have sit in the front of an ambulance on the way to the ER , when all I can think about is how I'm going to tell my family that Paloma didn't pull through this one. On those days  we cry, we scream, at each other, at God.  We try our best to not take it out on each other, to be allies against this awful, unfair syndrome, but sometimes it cuts between us with cruel words I'd hoped my children would never hear.  There is no getting over it and moving on for us. There is no getting used to seizures.  Every single one could be the one that takes her away from us. 

The other day I noticed a child the same age as Paloma.  I watched him for a few minutes, comparing, taking mental notes. His mother must have noticed me eying him, noticed my face shift from a pleasant smile to a sullen look.  I was angry and jealous looking at him.  He could walk with ease.  His eyes weren't blinking and shifting causing him to pause every few minutes like he was lost and confused.   Up until that moment I hadn't really let myself think about how Paloma might be falling behind.  It wasn't until I came face to face with this kid that I grasped the full reality of Dravet. It's not just the seizures, the calling 911, the endless inconveniences. It's that she is now different from kids her age and it's noticeable.  It's a hard reality to face. 

 We now treasure every little milestone made. I wish we'd given that same celebration to the other two but we didn't know then, didn't know what life would like just a few years later. I guess one positive of Dravet is it teaches us to live in the moment, to pause and take notice. I try my best as a mother to help my family live  life fully amongst all the chaos . As the years pass I hope the balancing the good days and the bad comes with an ease that I've seen in other older, wiser special needs mothers.  It never gets easier or less demanding but they have a grace and peace about them that I only pray will come with time.






 




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