Our Tommy started his life as a miracle, nearly dying before he was born. He learned to laugh and smile to himself, keeping the rest of the world separate. He couldn’t crawl, so he just rolled himself around the room, spinning from corner to corner. He seemed to have his own language and talked vigorously to himself. But then one day he stopped smiling and laughing, not even at the things he saw in his own world. He started to have seizures, trapping him in a blank, ugly place we couldn’t reach him, preventing him from eating, causing him to wither.
Then there were the doctors, the pediatric neurologists, the neurosurgeons. The doctors were kind. Tommy didn’t want to talk to them, or anyone. He would curl up into a ball and cry. We couldn’t reach him. There was the brain tumor. Was it more? Was it progressive? “Go home and enjoy him.” No treatment, no cure. One day this specialist, the next another. One day he would come home with electrodes decorating his head, the next to an MRI. Then to bloodwork. And another MRI. And on and on, so many issues, for Tommy a world of pain.
We were blessed that the tumor stopped growing. Thanks to wonderful teachers and specialists, we were able to get Tommy to come into our world over the years. He was clearly becoming receptive to us, but would not express anything. I didn’t know what his world was like, or how he perceived ours. How could he navigate our world? What did he think of our landscape?
I realized as he became more expressive, that the landscape of our world was pain to him. When we would go out on trips around town, he would say, “That’s where I got blood tests.” “That’s where there’s the MRI.” “That’s where there is Dr. Angel.” He could tell us what “MRI” stood for, but couldn’t tell left from right. He could mimic the sound of the hospital machines, but would cry at the sound of laughter. That was his understanding of the “real” world.
But then we saw the Spirit Open Equestrian therapeutic riding program. I had ridden horses when I was younger, and I remember all of the confidences I used to share with them. I hoped the horses could help Tommy be less frightened of our world.
We took him to get boots, breeches, and a helmet. And then to his first lesson. We were surprised that he wasn’t afraid of the ponies. After awhile, he smiled at them.
Tommy started talking about them to us. He was waking up to something nice in our world. He couldn’t wait to go to lessons. He talked about how the ponies breathe gently (“whiffle-snuffling,” as he says) and that he loves how they feel. He tells me that they help him talk. During his first lessons, you could see him struggling to respond to instructions on how to sit, how to hold the reins, where to look. He didn’t have much confidence in himself or the world.
But the wonderful thing about the Spirit program is that Ms. Dada and the instructors have this magic way of understanding each student’s needs, and pushing them just enough. They allow Tommy to be a kid, but they don’t condescend. There is a right and a wrong way to do things, and that has brought out a sense of accomplishment for Tommy, an understanding of goals.
Now, after two years of riding, Tommy’s landscape has changed. We drive down Fairfax County Parkway and he says “That’s where I go riding.” He saw a woman one time and told me “She looks like Ms. Dada. Ms. Dada is a good one.” We pass by the saddlery and he says “That’s where I get my boots.”
His teachers and therapists remark on his progress, his ability to socialize more. He now has a topic to share with people – horses – that anyone is happy to talk about. His world isn’t just hospitals or clinics.
Tommy still has his own world, but he’s willing to share ours, too. After 18 months of lessons, he trotted on his own. Ms. Dada looked at him and smiled and said “you’re very good at that!” Tommy grinned impishly and said “I know.”
Last month, at his 12-yr-old physical, he still didn’t want to talk to his pediatrician. The offices still remind him of pain. But then I mentioned he was riding. He suddenly looked up at the doctor and said, “I like Huckleberry! I’m talking about horses here!” And he did.
I cannot begin to tell you how much the program, Dada, the volunteers, and the ponies have meant to our family. The Spirit program is one of the reasons we will stay in the DC metropolitan area for as long as possible. Tommy would not be the same without it.
