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?
3 comments:
Yes, she is beautiful and mysterious. It may be hard to define Kate’s desires and thoughts at times, but it is clear she loves God and her family. We look forward to living more moments in the present with Kate. I wish I could borrow a pair of lenses to see the world through her eyes. Imagine her frustration disappear if someone simply understood her view. In the meantime, I treasure every smile and belly laugh!
Love,
Aunt Cindy
Oh this makes me cry - she is SO Beautiful - love that girl and want so much for her to be the best she can be and have so much joy that its overflowing. Great job catching the moment at Christmas. Sorry she is feeling sad. Keep us posted, remember we are out here in bloggyland loving your family and rooting for you guys.
Melissa continues to do well, but changed preschools once more. They didn't understand her needs well (said she was not playing with the other kids enough, and her parents too protective when we found out they encouraged jumping (being pushed off) block retaining walls that require a railing by building code standards). They say she should learn from such activities and alternately tell me she is uncoordinated - which leaves me to think she should not be pushed off walls to "FIX" that. Oh well. It turns out she is now having nightmares about her old school and negative interactions with the teachers. Her new school has brought out a vivacious, assertive, much less fearful Melissa who has taken the big step to get past a bad experience and her fear and go back to swimming lessons. She is also very social and outgoing now as opposed to sitting by herself at the old school and coming home worrying that her skin was darker than the other kids'and that was bad. Too bad we did not understand the dynamics there.
Do keep us posted - you guys are probably super busy etc., but Melissa and I are interested in going to an 855 get together and would love to see you all there - not sure yet if Bruce is up for it, but Melissa is sure she wants to go.
Stacy, Bruce and Melissa.
Your post made me sad, too. Kate is looking to much more grown up, and to know she's feeling different is heartbreaking. But remember, at least she's here with you, and will always have your love and utmost help.
I wonder when David will feel "different" for the first time. He doesn't seem to care, or if he does, he hides it well. Kids at the playground call him "the baby" since he can't speak. Does he understand the significance? Who knows? All we can do is be there for our kids, love them unconditionally, and be their advocates. You and Scott are already doing that. The puppy will also help, by loving the kids no matter what.
We'd love to see you more often, too. Caroline
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