Not quite interested in anything traditional this year...don't care to stay up to midnight, but I have to... in order to give the midnight IV dose of Zosyn antibiotics..
I supposed in my heart I'm still moderately traumatized from the severity of this pneumonia and horribly sick Daniel became so quickly. Its as if another of the "predictions on the great list of predictions about children with PMG" has been born to us.
And I don't know what to do except keep battling for him. and battling for him. Giving Daniel his bath tonight I caught a look of gratitude and relief from the warm warm water.... and he has these deep big round brown eyes that just melt my heart.
Losing him is not any kind of an option in my book. I refuse to accept that.
Sarah is growing up... she is out at a party and I miss her. I miss having her here watching TV with me on New Year's Eve.
Perhaps someday we'll find a way to go out to a dinner...or even dance... its nearly impossible for us. So we cope....and dance around the kitchen.
Curled up in the chair in Daniel's room. New TV show is on now... and in 10 minutes Daniel needs to have a breathing treatment and vest treatment.
I let our nurse Dave go home early...because he has a 21 year old life....and sitting here on New Years eye is not fun...
New Year's resolution... to get myself healthy. To resolve his scoliosis as much as i can...and to get him communicating better with his IPAD and Eye gaze. I have to list them out....
But this has not felt like a holiday at all. Christmas in the ICU changed my feelings about the entire holiday process. We still have gifts under the tree that no one feels like opening. It was just so sad to have our family ripped apart and terrified right on the holiday and days after. I remember sitting under the Christmas tree picking up an ornament and bursting into tears on Christmas eve...as John stayed in the ICU and I came home with Sarah and Thomas.
Out of the smoke comes kindness... and we had 4 families deliver meals, 3 families deliver family treats, and 5 people sent some money to help with all of the expenses we have been enduring. Daniel may still yet end up back in the hospital...but he's doing better tonight.
I'm grateful to those people who paused during their own holiday mayhem to tell us they care. Warm thoughts and prayers went a long way. When visitors showed up at the hospital... it brought cheer to Daniel's eyes... and the favorite moments of Christmas are things like...
- Lorine Watkinds showing up with Christmas cookies just after I had been crying
- Santa Claus coming around and giving presents in the ICU
- Daniel's school donating a turkey dinner that we brought to CCMC and had our family meal there.
- The food that came to make sure we had warm meals... chili, soups, pasta, pasta sauce, ziti, and lasagna. And offers to give food...
- Meeting new friends in the hospital... because we were not the only family spending the holiday in patient.
- Hearing about the prayers that people offer up for our family
- Financial donations which helped with gas for the long long drives and continue to help with the huge expenses that just pile up relating to Daniel. If you could ever know how grateful we are.... its beyond words.
- Thomas calling me the first night in the ICU...crying because our family was going to be separated for the holiday..
- Seeing the pure love in Daniel's eyes for his sister as she leaned in to hold his hand...and hug him...
- Learning how to administer IV medication....
Those are things. I ddnt even get Christmas gifts... well....I bought myself a coat and a wallet... and they wrapped it
Now its New Years Eve...and I'm sitting here alone in the chair... well...not alone... Daniel is resting next to me.
I just want to sleep. I want to sleep and blink to next Christmas because maybe Santa will bring Momma an IPAD. or a camera... lol
I'm sure many people get to put on fancy clothes, go out to dinner... or go to friends' houses and have dinner and have fun. But we don't have that. As much as I would love it.
I'm curled up in the chair. Just looking forward to planning my next week and staying sane.
December 31, 2011