This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Saturday, March 15, 2014
Such a heavy heart
I don't even know that I could utter these words out loud, but I believe my worst fear just occurred. Daddy was home with Jayen and Brilyn while I took Dalan to a friends house to play. I was taking a longer time than anticipated because I was talking. I figured daddy was calling to tell me to get home so I didn't answer. (SHHHHH Don't tell him!) But when he called back a second time, I knew something was wrong. I wasn't prepared for what he was about to say, but in the back of my mind I already knew it. Jayen just had a seizure. I'm so crushed. I'm so pissed. I'm so upset for Jayen and all of our family. Did we really just go through everything this past month only for these damn things to return? What the hell just happened? Why the hell did this just happen? Not even sure what to do or where to go from here.
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