One Year With the Crippled Kid

How it all began – the “sausage digit” That’s really the medical term!

One year ago this morning, #4 woke up with her now famous swollen toe.  This morning marks the anniversary of the day that our Juvenile Arthritis journey began.  Last year, I was staring at that swollen and purple toe and wondering how she could have broken it in the night and not felt a thing.

What followed that morning were days and months of fear, pain, and uncertainty.  We saw specialists and learned to wait to see specialists.  I stayed up late at night researching and looking for cures.  We prayed.  I wanted a cure and she just wanted to be able to walk up the aisle for her First Communion without needing a wheelchair or a cane.

We saw one of the best rheumatologists in the country and hoped for a cure.  We prayed she could make our daughter healthy again. Instead, we received a definitive diagnosis and learned about managing chronic disease.

We learned about shots.  I learned to give shots.  She learned to get shots.  Her dad learned how to hold her so that she doesn’t flinch.  We all learned how to not cry during shots.

The girl who had been a promising dancer now walked with an awful arm-flapping lurch.  We bought a cane for our 7 year old. She quipped “If life hands you lemons, at least make sure your cane is bling-y.” and bedazzled it.

I took her to see a holy man with a reputation for healing.  I told him only her name and age.  He placed his hands upon her head and then looked at me.  “I could heal her arthritis,” he told me, “but it would be to take away what God is using to make her holy. Do you still want me to pray for her healing?”  #4 answered him, “No.”

Gradually we saw her begin to improve.  She walks with only a small limp now, although there’s a bit of a hitch in her giddy-up when she runs.  Her body doesn’t seem to be fighting her anymore, but she has changed forever.

Walked it without the cane

The girl who wanted to be invisible, the child whose fear of being laughed at and embarrassed often meant that she hid and cried…that girl has become saucy and bold.  She still doesn’t like new people, but she’s no longer hiding.  The tiny giggle she hid behind her hand has become a peal of laughter which can fill the room.

She writes letters to her 92 year old Great-Grandmother which begin “How is your arthritis doing?  Mine is better.” and sees the humor in that. The bones in left foot have grown and it can be hard to find sneakers that fit, so she giggles and tries to talk me into letting her wear heels.

I didn’t know how much she had truly changed until the day I heard her teasing her brother and his friend.  They were playing video games and the boys were ganging up on her.  “I see how you play!” She tossed at them. “Ganging up on the crippled kid!”  The boys paused for a moment in shock and she mowed them down with a laugh.  “The Crippled Kid rides again!”

Her father tried to explain to her that “The Crippled Kid” may not be completely politically correct.  She just shook her head and laughed at the ridiculousness of it all. She has the knobby knee and limp, and figures that she can call it what she wants.  I happen to agree with her.

One year in and her father and I still hope and pray for health and healing for her.  She’s not the girl she was a year ago. While his disease has deformed her bones and makes her hurt when it rains, it has also taken the girl who was afraid of life and given her laughter.  It seems an odd thing for sickness to bring laughter, but it has.  Laughter and an odd gallows humor which I very much enjoy.

Looking straight at the camera.  One year, a limp, and a new bold approach to life.