New Year’s has never been my thing. It carries too much expectation for change and improvement. That’s fine if the year stank (2014), but when it was great (2015), I’m not ready for things to change.
2015 was wonderful. Julianna was healthy for all but one week, and the one unhealthy weak was miraculously benign. Our pink, sparkly princess got a pink, sparkly room. We shared our story more publically than we could have dreamed, and this has given some meaning to our past pain. We laughed a lot and shed very few tears. It’s hard to imagine that things could get any better.
There are some troubling signs, though. Julianna is weaker — this is undeniable. She got over her cold largely unscathed, but she needs more respiratory support now. Her scoliosis is a lot worse. It’s also been almost one year since she was able to use her wheelchair. The ridiculously expensive and heavy power chair (in “pop star pink”) is taking up space, but it’s hard to give away. Doing this is an acknowledgement that her relentless and evil disease continues to rob Julianna – and us.
Summer 2013. Julianna loved her wheelchair, and she was a good driver. She liked to go FAST – I smile thinking about how she always “forgot” to change it to the (slower) indoor settings after being outside.
I’m not sure what to expect from 2016. To face it, I need to remember the hard-learned lessons of a past that I usually want to forget. (I wanted to elaborate more on these points — this was supposed to be a meatier post – but the words aren’t flowing today. )
1) Control is an illusion. God is real.
I can’t fix Julianna – my best isn’t good enough for that. I have to trust God.
2) I can’t see the full picture.
My mom/doctor instincts were correct, and J has an awful neuromuscular disease. But there has been beauty and grace in this life, and it has sustained us. I could not have imagined it because my vision is limited. I’m only human.
3) Enjoy the here and now.
This is all we have, and it is good.
J gets a new doll.
J: She is ravishing!
M: Julianna, where did you learn that word? Do you know what it means?
J: It means super beautiful.
A triple ponytail (J’s idea)
Alex makes Julianna happier than anyone else, and he’s been doing a lot of it lately. In past winters, we didn’t allow this because he always seemed to have a cold. This winter, he’s been healthy and affectionate.
M: Alex, it’s so great that you’ve been snuggling with Julianna. She loves it.
A: Do you like seeing it?
A: (like he’s admitting a state secret) I like it too. She’s not an ordinary girl.
A: Because she has CMT — and she’s my SISTER!