My mom likes to say I'm a spitfire. That I was gifted with an outsize zest for life, as though I instinctually understand the value of time and don't want to waste a single moment. I don't know if that's true, but I do know that I laugh easily, that I don't sweat the small stuff, that I love practicing my penmanship by writing spells, and that Opalite is the best track off Taylor's new album. Also that I'm going to be Wednesday Addams for Halloween and it was very important to me that I wear her black and white dress and not just her plain black one. You see, I have Hypoplastic Left Heart Syndrome (HLHS), but it doesn't define me. Well at least not most of the time.

When HLHS rears its ugly head though, it looks like me not being as fast as my friends, like me having to longingly watch them tear up the playground when I have neither the muscle tone nor stamina to do so, and like me with blue lips wearing a sweater and parka when the temperature starts to dip into the 60s. BUT, have you seen my zipper scar? It's rad as hell and it got there from four open heart surgeries. How many kids can go through all that and make every day look like it's no big deal?! I'm tough, I can admit that, but it's also A LOT at times. I've only ever known life this way which helps, but I'm getting to be old enough to know that most kids don't go through what I do, that they don't know hospitals like the back of their hands, that the phrase "losing access" from a vasculature standpoint is nothing they will ever experience, that they can talk about what color they want their first car to be when I don't even know if I'll still be here in a year. Fun fact: I've been in heart failure since I was three years old and have now been listed for a heart transplant for 852 days (and counting) with no offers. I am what complex congenital heart disease life can look like and I wish there was another way.

You know what though, there can be another way. It's not here yet but if I'm lucky enough there will be some other ways in my lifetime, however short or hopefully long that lifetime is. Possibilities and medical advancements will only come with research, which will only happen when there is the funding in place to support it. I ask you to join me now in becoming part of this significant journey by supporting my fundraising efforts for The Children's Heart Foundation and their stated mission of advancing the diagnosis, treatment, and prevention of congenital heart defects through groundbreaking research.

Thank you for your generosity and for standing beside me in this mission. It means everything.