Note: For those of you who want to know more about Ellia's medical condition, you can read it about it here: http://christinagibson.wordpress.com/2012/09/18/ellias-illness/
We recently got some good news regarding Ellia’s health. Her continuous leg pain and fever were a growing cause for concern and her doctor suspected a degenerative joint disease. After meeting with a rheumatologist at Children’s, we were relieved to find out that Ellia’s leg pain is more than likely a result of hypermobility joint syndrome. In laymen’s terms, Ellia’s destined to be a yoga teacher or an excellent ballerina. She’s more flexible than Gumby. And as a result, her muscles have to work extremely hard to keep her joints in place. So her legs always hurt.
Good news, the specialist said. She only has one extremely rare childhood disorder.
Bad news—she’ll still need to be hospitalized when she has leg pain “just in case.”
Now that Ellia knows she has a benign condition that causes leg pain, she’s very honest about how much she hurts. She’ll prance into my room telling me her legs hurt and singing, “And I don’t have to go to the hospital!”
I haven’t had the heart to tell her she may be going in more.
But, this week, she figured it out.
Her legs hurt, she was running a fever and showing a few early signs of an episode, and I wasn’t willing to take a risk. Even though Ellia can walk at the beginning of an episode, she can tank and lose function from the neck down within a couple hours.
I told her we had to go get lab work. She was angry, panicked, told me she was fine and yelled, “I just have Jello joints and spaghetti legs.” She hid from me and pleaded with me to let her stay home. In the car, she was heartbreakingly sad. She kept begging, “No butterfly needles, Mommy!”
She was quiet after a few minutes.
“Ellia, are you ok? What are you feeling?”
She took a sharp breath. “I hate being this kind of girl! I wish I was another kind of girl, one who didn’t have to go to the hospital all the time!”
I hate it, too. I hate that she has to work through her residual fear and constant anxiety. I hate that she can’t just take Tylenol for a fever. I hate that she can’t go to birthday parties at Chuck E. Cheese in case a sick kid coughed on a game.
I try to explain to her that it’s awful. That it’s stupid she has to do this.
“MOOOOOOM!!!! Do NOT say stu...”
She won’t finish the word for fear her kindergarten teacher will find out she said it.
In my not-so-awesome parenting move, I yelled back, “But it IS stupid! It’s horrible! I’m so sorry this is a part of what it means to be you.”
Ellia looked at me as if she pitied me for thinking that was an encouraging thing to say.
As we got out of the car, I racked my brain for parenting articles that talk about helping your child embrace having special needs.
Shocker—none came to mind.
Instead, I pulled up an episode of the cartoon “Martha Speaks” on my phone. Ellia loves this talking dog, and she stayed absorbed in the show until Albert came to get her for blood work.
Albert has a ponytail. He has beautiful, long silver hair. Ellia thinks he’s a girl. He makes her laugh and takes her blood faster than it’s ever been done in her hundreds of pokes.
We leave hand in hand talking about how much we love Albert and how much we love “Martha Speaks.”
I knew it wouldn’t be helpful to tell Ellia how special she is and how God made us all different. Instead, she needs encouragement to keep seeing life for what it is—a broad spectrum of experiences. Of course there are needles and nurses, but those are couched in laughing in waiting rooms and trying to figure out the lab tech’s gender.
It’s not helpful to dismiss or deny the IVs and the loss of muscle function, but maybe we need to learn to live within those realities.
And we all have them. And there’s nothing wrong with disliking the difficulties. But, does our longing for a different life keep us from being present to the one we have? How do we thrive even in a world of difficulty and looming death? In a world of brokenness and struggle?
Talking dogs and good nurses aren’t meant to eclipse Ellia’s battle. But maybe they can help her remember that she’s more than a sick kid. Maybe we all need to be reminded that we’re more than the things with which we struggle. It doesn’t mean we’ll never want to be “a different kind of girl”—it just means we’re open to life even in places we wouldn’t expect it.