It’s hard to believe that four years ago today, my little girl was asking me with tears in her eyes, “I’m scared Mommy – scared of how my body doesn’t work anymore.”

As I look back on the blog posts I’ve put together from day one and most years after (if you’re not familiar a few links, 2012,  2014, 2015), I am so grateful that I stayed up way too late writing down thoughts and memories, even if they are heart-breaking reminders of many things I had temporarily pushed behind a curtain in my mind.  At times, Maura pulls back that curtain, with a surprising, “Mom, I don’t want to have this anymore, I just want to be like everyone else.” or “Am I allergic to the sun? The kids at recess say that I am.”

From 2015: “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.”

Maura’s Journey – year 4 with Juvenile Dermatomyositis from Amanda Couch on Vimeo.

 

Hopefully, someday Maura will know that we recognized all the work she did, both physically and mentally, and how proud we are of her for approaching this as a fighter.  It will never be okay that she lost years of childhood. But we don’t look at this as a “it could be worse” attitude, because no one with a sick-child would ever wish this on another child or parent.  Instead, each day is an opportunity to move forward the best we can – whatever that is for the day.  We are so grateful that for us, each day she has showed improvement and that has gotten us to a place where she is now medication free, swimming 3-4 days a week, flourishing at school, and giving us a hard time at home like any 7-year-old should.

Some highlights (read- humbling moments) of our fourth year parenting a chronically-ill child.

1) Being excited about the last dose of chemo meds, celebrating, only to have a crying little girl, who is scared that without it, she will be sick again.

2) Sitting at swim club with happy tears in my eyes watching her begin to be able to keep up with the others.

3) Any and all Make A Wish events.  This past year Maura had the opportunity to give back and create some art to be sold at a fundraiser.  The kids were treated so wonderfully, did such a fantastic and original job, and then at the end – left all the parents in tears when they said, “We didn’t want you to go home empty handed, so our artists painted your wishes for you.” And proceeded to give each of them a beautiful and personalized art piece, even wrapped with care and love.

A month later, she was able to take part in thanking donors at a large event in our area.  Watching all the wish kids walk into a ballroom packed with people they don’t know, march onto stage, and wave happily while being led through, “Thank you for making our wishes come true,” by a terminally-ill, graceful, kind, and gracious girl – was more than I could really process.  (All while they played, “Fight Song.”  Not a dry eye in the place.)

4) When driving home from school, you hear crying in the back seat from your first grader and the answer to “What’s wrong?” is this:  Mom, today at school they talked with us about shelters and how people go there when it’s not safe for them to be at home with their families.  I’m worried that they are going to come and take you and Dad there because I used to hurt you when I was on prednisone and it wasn’t safe for you to live with me.  I don’t want them to take you there.”

What I have really learned through all of this, is that everyone has something going on in their lives, a struggle in their own life or family.  I am past spending time being angry that this happened because the reality is that it did and no amount of energy spent on anger will change that Maura will always have JDM.  Instead I try to spend my energy on helping her be a good, kind, and gracious member of the world, no matter the hurdles in her way, after all, she was the one that taught me when faced with adversity to smile and just work harder.