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Beyond IS

Our thoughts about Emma’s journey with

Infantile Spasms and Epilepsy

Monica



Sitting in the waiting room waiting for Emma’s VNS battery replacement surgery and my eyes are fixated on another mom. Her son is in his early teens and is in scrubs waiting for his surgery. He’s playing on a iPad and he doesn’t look worried. The mom on the other hand is crying… a lot. So much so, that she keeps getting up to get more tissue to wipe her tears. Emma is beside me waiting for her surgery. My heart breaks for this mom. I can overhear her conversations but she is not speaking English but I understand her well. I want to go next to her and hold her hand. Not say anything. Just hold her hand. At that moment, her son is called in and she walks him to the door of the operating room and waves and I break down crying. I want to hug her. I know how she feels. In the midst of my tears for her, Emma is called and wheeled in for her surgery and now I’m crying for me too.  This is seriously the worst past of the whole process….. walking away from your child.  I go into the post-operation waiting room and find a private spot and I cry even harder. I can’t stop the tears. I cry for that woman, but mostly for me. I don’t like thinking about it often but I think of all I’ve lost in this whole battle of epilepsy and all the pains I’ve gained. I hate feeling sorry for myself so I cry more. 


​Leading up to today, those people who knew about the surgery kept asking how I feel. I told them I wasn’t there yet. I wasn’t there yet when we drove down to the hospital. I wasn’t there yet when we prepped Emma for her surgery. I wasn’t there yet when I saw the other mom. But I’m here now and I hate it. I wish I wasn’t here and I wish I could hide in the busyness of my life. 



​- Monica

 
 
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