Anger and fear

The lab results for the awful, terrible disease that Dr. Hottie tested Libby for was negative.  This disease is rare, untreatable and fatal.  Libby matches all markers, except for the skin and rectal biopsy results.    We didn't know which way to pray- make this test be positive so we have a reason behind her steady decline? Or, a negative so that we continue to not know why is underneath the Lyme and is causing her slow and steady decline.  

Neuronal intranuclear inclusion disease is not the one. As of now, the doctors have no other ideas or tests to run.  So, we will continue to plan for the DBS.  

The ceiling of Grandma Linda's patio is collapsing due to a leaky roof.  We were preparing that room for the upcoming fix it construction when  we got the call dreaded by every parent. Mariah had been in a bad car wreck.   (We took on a third car payment two weeks ago so that she would have a safe and reliable vehicle.) 

She is okay, her passenger is okay, the other driver is okay.  The car is not okay. I am rotating between ugly anger, absolute fear and immense gratitude.  We had a 40 minute drive to the crash site, during which I released a torrent of colorful words and desperate prayers, while knowing only that she was coherent.  The ambulance pulled away as I pulled up.  

I grieve daily over Libby, in a constant cycle.  Continuously grieving one child is awful, facing the loss of Mariah is simply too much.   Fear and anger are terrible bed fellows. Terrible.  Grateful she's okay, not happy at the risks taken- even accidentally.   

Mariah is okay. She's sore, has a pretty good knot on her head, CAT scan was normal, but she'll be sore for awhile.  She'll be home with us for a few days; if I don't smother her with love or slap her a few times.  

Parenting is amazing and it's not for wimps. Fear and anger may go well together, if they're spiced with gratitude.  She's alive and Libby has another day and hey, never claimed to be any good at this parenting business. And, I am much more grateful than anything else. Be a blessing....

Love and hope

Ileana