Monday, January 19, 2009

My Lovely Girl

I know, I'm a bad blogger. Life just keeps getting in the way!

I will be posting a Christmas-wrapup, but my mind is been focused on Kate lately. She's just been facing a lot. She was on MRSA watch (but ended up with a deep tissue staph infection instead, thank God), has been experiencing a lot of sadness and isolation lately, and just seems very aware of her "differentness" lately. And it seems to bother her. And, of course, her sadness just kills us. I've been spending a lot of time to make sure she's not excluded from places and situations, which is fine, but it's been a lot of effort lately. I guess I'm facing my own issues with it all, as well. It's so difficult that she continues to be such a mystery.

Nothing drove home this point like Christmas. When people would ask what Kate wanted for Christmas, I struggled, stammered and stuttered looking for the right answer. If you were to ask me what Addison would like at any given time, I could easily whip up a list of twenty things that would make him jump up and down and say, "Oh, wow!" But Kate is a horse of a different color entirely.

Which is why the gift from godparents Aunt Cindy and Uncle Russ resulted in my single-most joyous moment of Christmas. From the moment she saw that Hippity Hop Ball, her eyes were lit up and the smile stretched across her face. For that moment, she was so present and happy and free.

Being a family of four was the best part of Christmas, but Kate's sheer happiness was the best single moment of the day. Bad photos, but great smiles.

We will be heading to Atlanta for a fresh muscle biopsy to see if Kate has mitochondrial disease in the spring (which she has all the classic symptoms of), so moments like these help us focus on what matters: our sweet girl.

More later.

Look at those eyes. Isn't she just beautiful?

Thursday, January 01, 2009

Notes to Self

  • Just because the kids go to bed late does NOT mean they will sleep late. In fact, they won't. They will wake up early and be extremely crabby by 9am, if history proves to be any indicator.

  • Telling kids that fireworks are nothing to be afraid of *might* help them not to be afraid, but will not necessarily help them to sleep through them. At least not in Kate's case, who kept signing "hot" and then "work." It took me a while to understand that this was how she was signing fireworks. Very funny.

  • Putting a Winnie the Pooh movie on in the early a.m., in an attempt to grab a bit of shut eye (since I stayed awake until 2am so I could wish my hubby a Happy New Year after he got home from work), is futile. One of my children, who shall remain nameless (k@te!) does not simply watch a movie. She experiences it, as do I -- through her nails clawing into me when she's scared or her contagious laughter right into my face when something is funny.

  • Being tired passes, but these memories hopefully never will. And when the 9am crabbiness rolls around, I plan on bribing them with whatever keeps them relatively happy until naptime (some playtime outside, crackers for Kate, KungFu Panda for Addison). If all that fails, there is always a mimosa for mama. ;-)

    Pics from Christmas and a post about our beautiful kiddos coming soon. Happy New Year to all!

    The Lucky Ones