Snow in Tucson??

Well not really snow, but the magical effect was there all the same.

Yesterday, I was thrilled to be able to spend the day with Ethan, and as we tried to enjoy the Christmas season, I found myself getting choked up a lot. One stop we made was at the Children's Clinic for a special visit with Santa Claus. I was thrilled with how patient Santa was with all the special needs children. After spending some time sharing secrets with Santa, and posing for a picture, Santa told Ethan he could pick a gift from the buckets next to the tree. At those words I saw the smile on Ethan's face and I felt my eyes starting to water. Fighting to keep my composure, I helped Rose, pick out something that Ethan would enjoy, and we turned to leave.


A volunteer approached us and told us not to leave, that we still needed to take Ethan into Santa's workshop. Well this was an unexpected surprise, so I followed Rose and Ethan into the workshop and felt just like a kid again as I looked at all the toys laid out on tables.

There was so many wonderful toys, but nothing really for Ethan. Because of Ethan's limitations, it was hard to choose something he could enjoy. As i watched Rose looking at the selection and trying to find something Ethan could enjoy, I really started to cry, as I went back to Christmas '08 memories of Ethan with the family enjoying all the holidays had to offer, including our family tradition of a wagon ride through Winter Haven.

One of the volunteers brought out a Sponge Bob Lego set and Ethan once again broke into a great big smile. By this time, my face was soaked with tears, then another volunteer came up and gave him a soft little Teddy Bear! With help Ethan was able to cuddle his new fiend and with his toys on his lap, we wished all the volunteers a Merry Christmas and headed out to our next stop.

After a few more errands, we headed up to La Encantada to see the snowfall. I didn't know where the even would take place so I saw a woman, with children and approached them to ask as Rose got Ethan out of the van. This lady was very nice and explained where we needed to go. The children's grandmother was there and said just follow us, and I said I need the elevator, and she said no just go down the stairs you can follow us, I replied, I can but my grandson can't, at which point she looked up from buttoning her granddaughter's coat and her gazed moved towards Ethan. I saw the look on her face, that I've seen so many times before, a look of pity mixed with curiosity, and embarrassment. I told her it was okay, as they directed me to the elevators.

We made our way to the courtyard and were trying to decide where the best place to stand was, when I heard a voice behind me say: "I see you made it" I looked and it was the family we'd met in the parking lot. I thanked them again for their help and could still see the curiosity in their faces, so I told them Ethan's story. That prior to June of 2009, he had been a healthy happy boy, who was not only very bright, but funny and kind. The kind of kid, every parent would want as their child.

This family helped us figure out which way to face Ethan's wheelchair so he could get the full affect of the snowfall and enjoy the moment. As the snow started to fall and the Christmas carols were being played, I got lost for a moment in the wonderful magical feeling of it all. And in the blink of an eye, many Christmases flashed through my mind, from my own childhood, to Rose's, to the too few precious one's we use to share with Ethan, when he could sing along and interact with the family. I really started to cry as I watched the children Ethan's age, dance around and chatter with their families.

I tried to compose myself as I looked back at Ethan, and when I did I saw the joy on his face as the snow began to fall. This helped me for a moment forget the pain, I carry with me daily. We moved his chair so he could be under the falling snow and all of us laughed as we watched this 'snow' fall on each other's hair and faces. It truly was a magical moment, with globs of 'snow' on my nose, chin and eyelashes, Ethan laughed and although this moment was fleeting, it was the start of new Christmas memories, in our new life.

You see last year at this time, we were getting ready for Ethan to come home from the hospital, and so we were so focused on getting housing secured and equipment that Ethan needed, there wasn't much time to think of anything else. All we knew was that Ethan would be home in time for Christmas.

I wish there was a way everyone could see Ethan's face in person. He is such a wonderful boy, and when you look in his face you see his spirit is there, the same loving boy is there. It's the one thing they couldn't steal away from us. It's this face and the love that radiates from it, that keeps me fighting. Fighting to get the resources that may make a difference in the quality of his life.

I truly believe there are treatments available that could help him improve, I just don't have the financial resources to provide those and that breaks my heart.