Gwendolyn went surfing! Yes, surfing. And it was absolutely incredible!
This is something we have wanted to make happen for Gwendolyn for some time. She loves the beach. She loves watching the waves, scanning for dolphins, looking out at the sky, going for walks along the coast, and her favorite restaurant is at the beach. We've taken her down in the sand but, because of SMA, she hasn't played in the water since she became dependent on her breathing machine.
Last year theGSF was chosen as recipients of the Keiki Paddle — an incredible annual paddle boarding fundraiser put on by children. Yes, children. It was a truly beautiful day filled with so much good and we were so honored to be part of it. And Gwendolyn was inspired seeing all these kids out there in the water and she wanted to join them. We just didn't know how to make this happen safely with a breathing machine.
Gwendolyn surfing would definitely have to be very modified. Our goal was for her to get to be down at the water line, feel the movement of the waves, and of course, feel the ocean water. But we also had to be mindful of not getting any water or sand on her bipap breathing machine, and we had to make sure a wave didn't overtake her face or her mouth because she would choke, and she had to remain flat. With a little creativity inspired by seeing other SMA parents try different things, this year we decided to be brave and try something new. We used a plastic snow sled and added a soft gel pillow to raise her head up. We were a bit nervous but Gwendolyn was totally game. The second we got down to the beach she wanted to jump in the water and try her hand at this surfing thing — no hesitation whatsoever! She does live in a beach town after all so surfing is something she hears about, sees, knows very well.
Bill held the sled/surfboard and watched the waves to make sure Gwendolyn was safe. I held her bipap out of the water and sand and also held an umbrella over her fair skin as she gets sunburned very easily. We also had a friend help us so we had an extra set of hands just in case and she took pictures and watched Eleanora (who sat perfectly under the cabana eating sand ). When the first wave came up, Gwendolyn let out a tiny squeal when the cold water first hit her and she then giggled watching the waves come close. She was so excited and clearly felt like the Queen of the Waves! A big wave did catch us all off guard but she was unfazed and wanted to stay out there for quite a bit longer.
Afterwards we asked Gwendolyn how she felt and she said “adventurous!” Yes, our sweet butterfly, you are definitely adventurous! And, once again, you have taught us to quiet our worries and get out there, try new things, and have adventures — because that is what living life is all about. “Just living is not enough,” said the butterfly, “one must have sunshine, freedom, and a little flower.” — Hans Christian Andersen
NEVER GIVE UP. NEVER GIVE UP. NEVER GIVE UP.
PS — It was also Eleanora's first time at the beach, touching sand and feeling the waves. She, per usual, took it all in stride.