4th Birthday Photo Session

4th Birthday Photo Session

Monday, June 4, 2018


Fear is a jacked-up emotion.  Since the sudden passing of our last friend, Messenger is aflutter with different groups of friends from the CHARGE Syndrome community and we're all struggling with our fear!  The Mom of the child who passed is trying to comfort their other children who are now afraid to sleep because they fear they might not wake up like their brother.  Grief is a process.  Fear is a jacked-up emotion.

I myself have been up since 3 a.m. dealing with our too-usual tummy ache.  We moved to the couch, where I sleep far too often - and neither of us could get back to sleep.  I had Andi propped up on pillows and she was gurgling the joys of reflux.  Then I sat up on the couch and had her sit up with me.  That worked to get her to sleep but as soon as I moved to shift a leg that had fallen asleep, or grabbed my phone, she'd wake.  She crawled off me and back to the pillow a few times, and it wasn't until me and my cell phone left the room that she actually fell back to sleep. 

So, I went on with my routine and went to ride my bike. That's my time and I'm trying to be better about putting myself first.  But the entire time I was upstairs, and she was downstairs on the couch, unsupervised, I was horribly afraid. Real fears like, 'what if she refluxes and aspirates?"  These are real possibilities and one that a CHARGE parent normally tackles, but it is more pronounced in the days since we've lost so many.  From our Facebook group, I've been told that we have lost seven children with CHARGE Syndrome in the past seven weeks.  SEVEN.  That's insane.  Seven lives gone far too soon. It's no wonder that we're all sitting here holding on tighter, stifled by the grasp of fear.  This is our reality.

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