In retrospect it’s been since spring of 2005 when she first showed symptoms. It was a slow decline and I aggressively sought help/diagnosis for over a year. Finally diagnosed and started on treatment in January of 2007. Many of you know our journey. Each family of a child with Juvenile Dermatomyositis and other chronic illnesses, has similarities and differences. We are all united by wanting our children to be well, to find better treatments, faster diagnosis, A CURE. I hope our story gives hope. I so desperately needed to know that kids did get through it when we first started.
The statistics were against us in the beginning. More than a year of untreated disease was not a good way to start. There are reasons to ignore those numbers!! My child made it. At least she’s come this far. Every day is a gift.
Believe me there were dark days when I worried about everything. I felt inadequate, angry, helpless. I know you know what I’m talking about. We all have them. But we get through. With humor or faith, running marathons, or simply putting one foot in front of the other. Because we have to.
And then there are those moments of brightness. A smile from our child, an hour where they aren’t in pain, an IV started the first time vs. the 4th time, an astute remark or observation they make, a hug or kiss they give, or whatever it is that makes us realize that to LOVE is what we are here for. We need to celebrate them. Each of them. And, at the risk of sounding like the infinitely broken record that I am, each of us caretakers needs to have moments to care for ourselves. We can’t do it all alone. We do need others. Please, please do this for yourself, AND do it because you will be a better caretaker for your child too.