Little Things I Thank GOD for

Little Sprinkles I Thank God For

It’s amazing the extra protection you get from wearing a hat and the right kind of sunscreen. When you learn that sun exposure is harming your child, you begin to think about every time the UVA and UVB rays reach your child’s skin.  You think about the times you are good at applying sunscreen and all the times you neglected it. The more I think about it, I have to thank GOD for a few things that protected my child. 

1. The daycare my son attends has requested sunscreen as a supply for a few years and applies it before outdoor playtime. 

2. My husband has always taken my vehicles to be tinted with UVA and UVB protective tint.  

3. Three days before I learned my son might have JDM, I was told he had psoriasis.  I learned that it’s a good idea to get extra sun if you have psoriasis.  I took my son to the local water park that weekend, thinking it would be good for him. That morning, a voice inside me (I believe it was GOD) continued to tell me to put his long sleeve water shirt on. I found his old water shirt from last season and put it on him. We used a lot of sunscreen that day.

We are not Alone

I’ve stayed up late, unable to sleep, searching the internet for information about juvenile dermatomyositis over the past few weeks.  I ran across the CureJDM Website.  It was what I needed.  There are people advocating to find a cure.  There are resources, links to blogs, videos, a community, stories, fund raisers and events.  I even found a book, Myositis and YOU.  I ordered it right away.  FYI, it was about 400 pages long.  I made it through all of the chapters that applied to us pretty quick. I want to continue to learn more and spread awareness.  

I think about what may have happened if our dermatologist didn’t recognize my son’s hand rashes as a pretty good sign of JDM.  After all, his pediatrician seemed to believe eczema was what all my fuss was about.  I have read so many stories about children who had signs for up to 2 years before learning it was JDM.  We had no idea for about 7 months. Mean while, I had no idea the sunny places he loved to play beamed harmful rays on my baby making him sick.  

I joined the CureJDM Community that night.  With such a rare disease, I did cross my fingers and search for someone who lived in the same city as we do. Would you believe it?  I found another Mom to connect with.  I even found events planned across the United States to bring families and children living with JDM together.  

Even more amazing, a friend contacted me the other day to let me know that one of her family members was diagnosed with JDM at 3 and is now a healthy 20 year old in remission.  This gives me hope.

Things have been a little hectic. I can’t wait to meet these people.  It really does help to know that there are people I can reach out to. With so much uncertainty, I’m thankful for the little sprinkles of hope and the people God has placed in my path recently.