Our Gift

Some might think me odd, but one of the greatest gifts my family has ever been given is the gift of Juvenile Dermatomyositis! What, in God's name, is that? It is a rare, life-threatening auto-immune disease diagnosed in my son when he was nine years old. "Miles-a-minute" had been turned to mush. This disease attacks the body's muscles as if they are a virus. Obviously dangerous, it can attack swallowing, breathing, and movement. It is NOT good!

Then why would I, a seemingly sane and intelligent person, say it was Our Gift?
Let me explain.

With every stress and trial in life, you are given two choices:  let it run you over or look up, stand up, and fight back! With the devastating news of this horrific disease ~ we chose the latter! I will not fib and say that life was a bowl of cherries. Far from it! There were many days that I found myself in my closet, not wanting to fall apart in front of the children, sobbing nearly to the point of nausea. But, having gotten that out of my system, I'd wash my face and return to the task of keeping the kids in as positive a frame of mind as possible.

Deanna was blessed with an additional barrage of caregivers; folks who eagerly took her under their collective wing and entertained her, taught her, and loved her when my attentions were called elsewhere. Miles' family of caregivers grew exponentially. I still cannot fathom the devotion of All Children's nurses. Normally maybe two would begin the average IV for treatment. Miles almost always had three to four nurses who tended to him. He had one to start the IV, one to be sure his good luck charms and headphones for situated properly, one to rub his shoulders or simply to keep him calm and relaxed, and one to massage his feet. There was barely ever room for me to stand anywhere near him. The interesting thing is that these nurses WANTED to be there.

After several months of treatment not working too well, we began hospital visits. Again, not a fun thing, but by no means a bad thing! Again, our family grew to include and envelope these folks. Miles was granted a dream by The Children's Dream Fund. And was shortly thereafter asked to be an integral speaker during All Children's 2005 Annual Telethon. And we realized our opportunity to "turn the tide" on this tragedy!

We realized this obstacle was placed in our path that we might have the opportunity to help others in our same situation. We've been doing fundraisers ever since for both groups. We've been to All Children's to counsel other families going through similar issues. We've been to Washington, DC to advocate for children's health and the hospital.

What a rare and incredible gift we've been offered to help other people. Although my brave and brilliant children went through the brunt of treatment, as I sat helplessly by their side, we went through it as a family. We beat it as a family. And we will continue to offer our assistance to others as a blessed unit of folks who realized the possibilities, instead of becoming bogged down in the burden of all things Dermatomyositis-y.

It may have been wrapped in rather odd packaging, but Our Gift is what we chose to make of it. We chose to turn it positive, helpful, loving, and progressive. If you are facing difficulties, maybe . . . instead . . . it is Your Gift and you are just not looking at it in the right light. Light always makes a difference!