After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

A Favorite Christmas Gift

In this Christmas season where kindness and love should blanket around us like snow, I wanted to share one of my all-time favorite Christmas gifts. One year, about four Christmases after I had been sick, Mama asked me what I would like for Christmas. My answer was that what I really wanted (that was realistic and not counting the unpractical things that my body could not do) was to put a smile to a child’s face that might not be smiling. My plan to achieve this was to buy the stuffed bears that went to support St Jude's… as many as we possibly could, and then give them all away to children who needed them. I had experienced such a bad couple of Christmases before, and I so wanted to do something that would be positive for someone else.

Mama agreed. Only, she was determined that I would go shopping and purchase them with her. So, on a day when I had just enough in me to do this special outing—mind you, it's a chilly, winter's day with only a couple of inches of snow on the grass—we load up myself, winter jackets, my cold-trapping steel frame wheelchair, and my first service dog, Zella, and headed to the mall. Once there, we parked where only the faintest whim of wind got through.

Inside, we zigged in and out of stores, looking for only the softest and most cuddly bears—really only the kind that my own hyper-sensitive nerves would approve—and began piling them up along me. Thankfully, I have a recumbent wheelchair, with a seat (with legs and feet) that reclines about 60 degrees, allowing for extra storage space along my legs and feet. We had the bears in bags, allowing us to hang them from the handles, my foot supports, pile them down my legs. Only once I was so piled up that only my mouth was visible (so I could breath), and two little hands popped out where they were strategically placed to hold a few more, did Mother declare we had to stop. My back was ablaze in pain, my brain kept telling me it was time to lie down before I passed out, and my mouth was turned in the most radiant smile. I felt like I had been given the world.

When we got to the car, I could hear Mama begin to mutter about how on earth we were going to fit all the bears, me, Zella and the wheelchair in the car. That, I thought, was no worry at all. (I mean, worse case, we could lay them on top of me in the car; Zella, on the other hand, did not agree to being encroached.) I finally reckoned we had gotten enough only when I saw there were bears being stuffed in every crevice available in the car.

Later that day, after I had rested enough to be able to speak again, Mama asked me when and where I would like to deliver the bears. That's when I realized a key part of the communication failure.

"Mama, I told you, I only wanted to go and buy them. You can deliver them wherever they can go where they will get to children who need them". For, I am a terribly shy person in some things, and I hate to be there when someone actually receives a present I've given.

Mama, apparently, didn't like to deliver presents much more than I did. I confess, I totally used my physical weakness, possibility of getting sick by braving the elements a second time, sheer exhaustion, and not knowing if the places she would be dropping them off were wheelchair accessible, along with any other legitimate excuse I could think of in my counter argument. In the end, it was convincing her that it would look less conspicuous with her just walking in and depositing them that won the argument. I am so grateful it did, as it enabled me to keep one of my favorite Christmas present memories in unblemished form!

 

Author's Note: Want to Give the Gift of Thanks this holiday season?

You can give to St Jude's Children's Hospital here

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