Every once in awhile, amidst the quiet confinement of Lily’s immune compromised life, we would get a reprieve. Her counts would rise and she could come out of quarantine. Well, kind of. Basically, she would get to live the way most of us are living today. Socially distanced, hand sanitizer at the ready and with minimal exposure to human contact. But it didn’t feel like a prison back then. It felt wonderfully, gloriously free. Compared to what life as an immune compromised child had become, this was a taste of the way life used to be. And we did our best to make those moments count.
One of the most memorable of these occasions for me came when my mom and I decided to get Lily together with my grandkids. My oldest grandson, Frankie, is close in age to Lily and my granddaughter was just under a year at the time. We made plans to meet up at Lily’s house and then take the kids out for some pizza. But we didn’t choose just any old pizza place. Heck no! Not when you’re getting some freedom from isolation! We took them straight to Organ Stop.
What is Organ Stop you ask? Oh, my friends, you must go! At least once. For many of you, that will be the first of many trips. For others, well, once might be enough! Organ Stop is an incredibly loud musical experience that comes from one exceptionally large, you guessed it, organ. This is not your ordinary organ though. When it’s time for the show, this organ rises up out of the ground onto a platform high up above the crowd. The talented organist at its helm sends music pouring through pipes that are literally covering the ceiling and floors. Little puppets come out and dance, bubbles float down from the ceiling. Requests are taken and people clap and sing along. All of this, while you are seated on long benches or tables in the alcoves munching on pizza and sipping soda. The pizza is not the best I’ll warn you…but you’re not there for the pizza. The salad bar is decent, but nothing to write home about. And I can’t even remember if they serve beer. Oh, and it’s all cash. If you’ve forgotten what that is, there’s a little ATM machine at the front entrance to help you out. It’s an experience for sure.
But the absolute greatest part about Organ Stop Pizza is watching a little one experience it all for the first time. When that unexpected first loud note hits and that giant organ rises from the floor, their little eyes light up like Christmas. The music fills you from head to toe and it’s such a joy to watch a kid feel that for the first time. As I watched Lily’s eyes light up and her and Frankie laughingly sing along to the Little Mermaid, while bubbles cascaded from the ceiling, I was flooded with such gratitude to know she got to have that transforming moment. And I didn’t care that we had to pick a table really far away from other people, off to the side and not in the central part of the restaurant. I didn’t care that we had to wipe everything down with disinfectant and sanitize her hands before she ate. None of that mattered. Because as she clapped and sang and laughed with glowing eyes of joy, she was just like every other kid there. Happy and excited and having a blast.
Lily was fortunate in many ways. Her quarantine and isolation had moments of reprieve where we could take her out and give her tastes of childhood. We had little carved out pieces of time where her cousins could come over and play and we could take her somewhere other than a hospital clinic. I know there are other littles out there who never get a break; whose childhood lives are full of separation and missed out experiences. That’s why Lily’s Pad is so important to me and my family.
Right now, I’m focused on the hyper clean part. I’m getting a solid education in hepa filters and humidity levels, pressurized rooms and mold counts. I’m training on our disinfecting system and trying to understand the importance of air changes per hour and positive versus negative environments. I’m reading SDS sheets and deciding on moisture barriers and floor coverings. Everything I am doing today revolves around creating a space that can offer an immune suppressed child the safest and cleanest alternative to play in. My main goal right now is to design a space that makes parents feel comfortable, that the medical community is willing to recommend and that ultimately provides a low risk of infection playspace for a child with low immunity.
After all of that is done and we have assured ourselves and our experts that the space is clean, that’s when the fun begins. That is when I get to build a playground! A magical place that will transform the ordinary confined day that these kids face into a joyous and exciting adventure. A place where kids will walk in with wide eyes and excited hearts. Laughter and signing and dancing and playing and pure childhood fun will fill the air. Parents will get to have that same moment I did when Lily transformed into just a “regular kid” at that first organ note. From the moment these kids walk in the door, I want them to forget all about the things they can’t do and be overwhelmed with excitement at all they can do at Lily’s Pad.
I’m so ready to bear witness to that moment when these kids get that joy. When they grab hold of childhood and own it for all they are worth. I hope all of you reading this will help me. Just remember every dollar you give, every post you share, every connection you help make pays for so much more than just drywall and furniture. It is an investment in childhood and joy and moments of transformation. Please help me build Lily’s Pad.
-Written by Dawn Garza
Director of Operations at Lily’s Pad and Transforming Childhood Moment Enthusiast