I cannot believe it’s been another year since I mispronounced Dermatomyositis as Dermato-mitosis…and now that I understand the latin better, I think I’d prefer the latter, but we were not given choice in the initial onset, so here we are.  I don’t think you can prepare to have a little girl who has been on medication for half her life.

A lot of big things have happened this year, no more prednisone, Make A Wish Hawaii(!!), starting first grade, changing her chemo meds to all pills, and I’m sure many more.

Maura’s Journey – Year 3 with Juvenile Dermatomyositis from Amanda Couch on Vimeo.

Many thanks to Kim Ebert and Josh & Jenny Solar for all the amazing photos they took of our family this year.

When I watch this video, my heart aches for Maura and all the kids, families that have to go through watching the effects of prednisone.  Don’t get me wrong, I know how it saved her from being on a different track with this disease.  She was progressing so quickly, (I remember her doctor described her like a ball rolling down the hill except he thought she was teetering on the edge of a cliff… so there’s that) without prednisone I don’t know what would have happened and frankly, I am so grateful we never had to find out.  You can see over the time frame how much it affected her and then how magically it seems to go away.  The video doesn’t show the devastating side effects that happens in their minds, but she worked hard to stay positive and has shown just how resilient and strong she truly is.

Make A Wish was such an amazing and humbling experience.  When we were there, over 40 other families were on the island on their child’s trip.  I can’t even imagine.  All the heartache and pain that these little ones go through and Make A Wish gives them a little piece of normal, of special even.  And what a gift it is.

©Kim Ebert

She still has a way to go.  She will be on the chemo for at least another year.  But the chance of remission is a gift.  Many children with JDM are not afforded that opportunity, and maybe she won’t be either, but that won’t stop any of us from trying our hardest to get there.

We still have to figure out a way to teach her the true dangers of a flare so that she understands to stay out of the sun.  But how to do that without raising a child who lives in fear?  Somedays you just have to move on and enjoy life (and secretly hope that the passionate 12 year-old you imagine asking to go to the beach with her friends, will someday forgive you for saying no and won’t sneak off there anyway…).

Without a crystal ball we will just have to keep going day by day, and take her lead on approaching each day with joy.