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

Libby proofing the house

So, we had made the decision to make some changes to the house to make life safer and easier for Libby.  This included having the bathroom redone. 

Say goodbye to the bathtub where I loved to soak and bathe the animals.  Also, the surround that was there was added by Rachael's dad, Terry and us girls. 

Enter the walk/roll in shower.  After another terrible shower with Libby several weeks ago, I left a year filled message to our caseworker for MDCP(Medically Dependent Children's Program).  Showers with Libby are the worst part of our day. For over a year, everyday has ended with tears and screaming- and Libby doesn't handle it so well either!  Now she has a more accessible shower area.    

Above Access guys Delano and Chad were here for four days and replaced the shower, the bathroom floor, and widened the bathroom door. http://www.aboveaccess.biz/1.html.  

They managed to get us on the schedule

and get the work done thoroughly and quickly. 

Before they arrived this week, we ripped the 

carpet out of both bedrooms.  This will

enable us to get Libby in and around easier.  It

also allows for better cleaning.  Libby hates 

it, but we've promised her a super cute rug. 

Yes, these are the original floors. They're cleaned, 

stained and polyurethaned. We were all a little high

for a few days, but I'm very happy to have the

 work done. I've also mostly finished her room. 

Parts from the prayer kneelers we recycled, 

sanded, painted, and added hooks. 

I painted her desk, made by Rachael's grandpa, 

the chest, found,sanded  and stained whole I was 

pregnant with Mariah and the toy cabinet we bought for 

girls.  We added new hardware and there ya go.

Now, we'll just be getting her used to the changes

Like any of our changes are small. 

"Archimedes" given to Libby by Cassie Foster, 

artist extraordinaire!   More exciting things 

coming from Cassie in the future! 

We took Aunt Judy out for a meal and to enjoy the 

First Friday Art Walk.  We had a fabulous time. 

It was nice to get to hang out and relax. 

Happy birthday Aunt JuJu!!

Blessings and hope

Ileana