Seeing Gwendolyn's eyes filled with wonder and enthusiasm is everything. Everything. She's a happy little girl so she's content most days. But when her entire body lights up with that unmitigated childhood joy as if she's yelling “THIS IS AWESOME!” — those are the days when we know with certainty that in spite of all she faces everything is okay, she is okay. This week Gwendolyn attended Pony Camp with the Little Star Pony Foundation and all was very right in her world.
Pony Camp is not something we simply signed up for. Diane Hall, founder of Little Star Pony Foundation, created it just for Gwendolyn. Although we met Diane through her work as a hospice volunteer, she is now like family. We adore her and her entire family. Diane regularly goes above and beyond for Gwendolyn and for us. And she has outdone herself with Pony Camp. Because Gwendolyn cannot sit up or hold her head up (she never has), she isn't eligible for the programs that involve riding a horse, including the therapeutic riding programs for children with special needs. But, Gwendolyn is obsessed with horses — loves them. So when I asked Diane if there was something special we could do with Little Star this summer, Diane's wheels got turning and soon Pony Camp was born.
All week long Gwendolyn and I arrived at the stables to find a magical day all planned out. Each day was different and felt really special with the activities reflecting the day's theme.
Monday was Secret Garden Day. Gwendolyn helped get Little Star ready, brushing his hair and decorating his mane with stars. Then we headed out with him to hike a tree-lined trail we'd never been before, spotting bunnies and bright birds along the way. When we got back to the stable Little Star showed off his jumping skills, looking to Gwendolyn for encouragement. And she eagerly took these photos of him jumping. We greeted some of the big horses new to the stable, learned their names, and got them used to Gwendolyn's wheelchair (big horses sometimes spook at her wheels). And then we finished the day out with Diane's awesome daughter, Hailey, reading Gwendolyn and Little Star a horse book. Gwendolyn didn't stop talking about Pony Camp the rest of the afternoon. She tapped feverishly, her eyes were bright and she wanted to tell everyone about what she got to do.
She woke up bright and early and ready to go on Tuesday for what we would soon learn was Princess Day. All morning she told me, “Hurry, hurry Mommy!” eager to get to camp and when I told her that I had received a special phone message for her American Girl doll, Willa Claire, to accompany us to camp, her eyes got huge. When we arrived at the stable the picnic table area was filled with pink, purple, and sparkles — Gwendolyn's favorite! Diane and Hailey had a tiara for both Gwendolyn and Little Star to wear, a star wand to decorate, clip-on purple and pink hair extensions for Gwendolyn to put in Little Star's mane, and a special leotard and tutu to decorate for Willa. Gwendolyn was beside herself. We spent the morning decorating everything and everyone and then paraded through the stables to show the big horses and their owners our day's extra sparkle. Little Star seemed to have an extra little prance with his tiara on which made everyone giggle — especially Gwendolyn.
Wednesday was Cooking Day and I honestly didn't know how Diane and Hailey would top the princess extravaganza — but they did. Once again the picnic table was filled, this time with carrots, honey, oats, and a special magical little oven. They had an apron for Gwendolyn to wear that she donned excitedly. They measured and mixed together the carrots, honey and oats then poured the mixture into a muffin pan. Little Star smelled all the goodies and was very excited about this day's theme. Gwendolyn set the muffins in the oven to bake while we explored the goings on with the big horses. The equine veterinarian and the farrier were visiting the stables that day and Gwendolyn loved getting to see them at work. They were both so nice and told Gwendolyn all about what they were doing. We were all mesmerized watching the big horses have their teeth attended to and “toenails” clipped — fascinating. The treats were ready and that meant Gwendolyn got to select a few of the big horses to receive her special horse cookies and carrots. She loved this and was very particular about her choices. Mikey, Hank, Pearl, and Pony were the chosen ones and they felt pretty lucky to have her special treats. They were really gentle taking the treats from her and Gwendolyn was just in heaven. She, of course, gave Little Star and his best buddy, Zorro, also a miniature, the most. This day ended with a book talking about all the different types of horse breeds as Gwendolyn tapped her fingers intensely and Little Star and Zorro both listened in.
Thursday was our last official Pony Camp day and it was Butterfly Day. Diane arrived at the stables really early and set up a scavenger hunt through the secret garden trail with sparkly butterflies for Gwendolyn to find. She told a whole story about the butterflies flying away and that she needed Gwendolyn's help to put them back in Little Star's mane. Gwendolyn was riveted and eagerly said she was up to the task. She loves imaginative games. The butterflies were hidden all over — some up high in the trees, some low in the bushes, but Gwendolyn spotted them all. In fact, she would see them, sometimes at an angle I'm not sure how is physically possible for her to see, before I did. Each time she found one she made a specific “Uh, uh, uh” sound, we'd pull the butterfly from its branch and then she'd clip it into Little Star's mane. By the end of the hunt Little Star was covered in sparkly butterflies and Gwendolyn got to keep the giant butterfly she found at the end of the trail. Back at the stable Little Star and Zorro showed Gwendolyn some of their new tricks and then Diane read Gwendolyn one last pony book.
Friday just happened to be the Fiesta Historical Parade in Santa Barbara, which is one of the largest equestrian parades in the country, and it made for a great way to end our special week of horse adventures. Gwendolyn and I woke up early and headed to the very start of the parade where all the horses gather before the big event begins. There are literally hundreds of horses, all different breeds, with both rider and horse dressed to the nines. Everyone is always so sweet to Gwendolyn, waving, showing her their horse's fancy prancing or special tricks, and even bringing their horse over to her so she can meet them up close. This year, because of Pony Camp, we were able to spot the different breeds and talked about them together. Gwendolyn knew them far better than I but she helped me spot: Andalusian, Arabian, Paint, Appaloosa. Pony Camp taught us both a lot.
As we walked back to the car, Gwendolyn contentedly falling asleep after such a big week, I thought about how fortunate we are to have people shower our little girl with kindness. Perhaps the silver lining in all of this is the constant reminder of the good in the world. Since Gwendolyn was diagnosed with SMA we have been surrounded by thoughtfulness, generosity, and selflessness. Friends and family regularly go out of their way for Gwendolyn and for us. Therapists, nurses, doctors have become friends because they get completely invested in Gwendolyn's joy. Strangers, complete strangers, continually help give Gwendolyn opportunities to be included and experience things that without their help would be out of reach. And because of these people, their love and support, Gwendolyn is living the life she wants. She has more days filled with unmitigated joy than not. And it is her enthusiasm for life, here look of wonder that screams, “THIS IS AWESOME!” that keeps us going. Seeing that sparkle in her eyes is all we need. It is everything. And we are grateful.
Thank you Diane for creating such a magical week for Gwendolyn (and us)! We love you.
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