Wednesday, May 21, 2014

One chapter in the big, beautiful story of her life

We have a diagnosis for Audrey. ++ It isn't a diagnosis that comes wrapped up in a pretty bow with a straight forward plan of attack to make it all go away and let life resume as normal for a really fantastic, active, beautiful, almost 8-year-old. It is Juvenile Idiopathic Arthritis. JIA.

It is a diagnosis based on a set of symptoms, the ruling out of a lot of diseases based on blood tests, a best guess, a plan of action, and many follow ups to see if we're on the right track. Audrey has met with pediatricians, pediatric rheumatologists, and ophthalmologists. It has been really hard for her, but her bravery has shone through, even as the tears flowed. All day she plays and learns and reads and laughs, but at night, when she slows down, when she lets her thoughts catch up with her, she wonders what's wrong and why her body feels weird and what we can do to help her feel better.

For that reason, the diagnosis is kind of a relief. On the other hand, the thought of her living with this forever is scary and overwhelming and I automatically fall back to the big part of me that wants to take it all from her. I haven't shared much with her beyond the name of it and the plan of treatment. She feels so much better with that knowledge and I don't want to scare her with too much information.

When she worries, I tell her that I'm in charge of the scary stuff like doctor's appointments and medicine and she's in charge of the fun stuff like planning birthday parties and picking toenail polish and deciding where we should put the sprinkler.  She usually smiles a bit, a tired, knowing smile that I'd rather not see on my 7-year-old's face, then say she just can't help it because it s all too scary. Try hearing your daughter say that without having to choke the tears back until you leave her bedroom. Impossible.

Today she smiled a little brighter when we talked definitively about our first plan of action, but she said she is still a little worried, but not as worried. I tried to think of something, anything, to say to ease the pain in her tender heart. I pulled her close. She put her head on my shoulder. I said, "Your life is like one big, long, beautiful book. There are already lots and lots of chapters in your book. You have a chapter about dance recitals and one about broken legs, another about baking, one about road trips. One of your chapters is JIA. Everyone has at least a few hard chapters in their life book. It's kind of a bummer, but it's just how it goes. You also have a whole lot of chapters that we don't know about yet. That's kind of fun to think about." She breathed a big sigh and smiled at me. A big smile that didn't seem to hide worry. At least not in that moment.

Here's what you should know about my daughter. She is awesome. She gives nice tight hugs, laughs huge hearty laughs, practices accents to tell funny stories, throws footballs with her brothers, dances and crafts, talks a whole lot. She is a flower blooming before my very eyes. I get to call her my daughter and that is an unspeakable honor.

JIA is but one tiny piece of her life, one little chapter in the big, beautiful story of her life. Wouldn't it be nice to edit the book of our life to take out the hard parts? Heck yes. But we can't. So we try to look at the whole book together and realize that the beauty dwarfs the horrible. The joy trumps the struggle. Unfortunately, it is a lesson my baby girl is learning early.

park fun

park selfie

singing Jamie Grace's "Beautiful Day" at the co-op variety show
What's your favorite chapter in the book of your life? And what's the hardest?
++I asked Audrey if it was ok if I wrote about this. She thought about it and said it was ok because there was nothing embarrassing or bad that happened.

2 comments:

  1. Thinking of and praying for your daughter (and you!). She's lucky to have you as her mom!

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  2. This is brave of both of you to share. I am just crushed that Audrey has this diagnosis. But it is good that arthritis treatments have come so far. I can attest to that. Plus she has so much love around her that she doesn't have to worry about people caring for and supporting her. But I just am sad that she has to endure this at such a young age. I remember one of my hardest life chapters was my RA diagnosis. The pain was excruciating but I survived and now, with medical advances, my pain is almost non-existent except for my eyes. I have so many good chapters that it is hard to pick a favorite but the birth of my children is way up there followed closely by the birth of my grandchildren. I am here for both of you!

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