February is a significant month for me, for a lot of reasons. First of all, Valentine’s Day (or maybe I prefer February 15th, when all the chocolate goes on sale… let’s be real), and also my birthday are in this month. Secondly, February is congenital heart defect awareness month. CHD has an impact on my life. Not only do Ben’s career plans revolve around helping people with CHD (he wants to be a cardiologist), but my mother-in-law was born with a ventricular septal defect, which is a congenital heart defect. She had surgery a few years ago to correct it, and it was quite the process. Additionally, CHD Awareness Month means a lot to me this year because in 2018, I lost someone to CHD.

You know, I have sat down to write this post so many times. I wrote it in my head every night for a month while I cried silently into my pillow. I have wondered, why do I even need to put these thoughts out on the internet? What purpose is that going to serve? It felt selfish, somehow, to vomit all my grief and guilt and confusion into the digital world. Maybe that’s dumb, but like I said, I’m feeling a lot of confusion and guilt. Does losing someone always involve guilt? So far, it always has for me.

Today, though, it seems like the right day to do this, because today I know it will serve a better purpose. Currently, it’s congenital heart defect awareness week, and telling this story is my way to bring awareness to CHD. In doing so, I think I am doing something that would make Becca glad. And I only want to tell this story if I think that she would like it. Otherwise, it’s not fair.

On October 12, 2018, my friend Becca left broke free from her pain and left the world a little emptier. To me, it seems that her kind heart broke over an unkind world. Medically, it had beat as many times as her tetralogy of fallot would allow. She wasn’t supposed to survive infancy, much less childhood, yet she had lived a few days past her 26th birthday.

I can’t stop thinking how unfair it is to have to say goodbye at 26.

You know, Becca seemed really typical. She was pretty, funny, and ambitious. She didn’t seem like someone who needed to be on oxygen or park in a handicap spot, so people didn’t really understand the big deal about her CDH. I don’t think I really was aware of it for the first couple years I knew her.

I met Becca 15 years ago, when I was eight or nine and she was 10 or eleven. We were in a sign language choir together. I remember one year, we were performing a song about heroes. I wore nurse costume, and told her it was because my grandma had been a nurse. She was wearing a doctor costume, and told me it was because doctors kept her alive despite her heart condition. I was ten at the time, and hospitals were foreign places to me. I don’t think I thought much of it until years later during one of her scarier surgeries. She was never “the kid with the heart condition” to me. She was always just Becca– “You know, Becca with the pretty blonde hair.”

As we entered our high school years, I remember Becca coming to practices lugging an oxygen tank behind her. She would walk in, look around in mock surprise, and declare, “Didn’t you get the memo? It’s B.Y.O.O. night! Bring Your Own Oxygen!” We’d laugh, and get to work.

I stopped going to the choir when I was 14. School was demanding. I didn’t have time for it anymore. But I did keep in touch with Becca by email, and I saw her face on the cover of a medical magazine once. I remember reading it and thinking, wow, this CHD is really big deal. She’s kind of famous in the medical community.

We lost touch for years. I don’t know how. I lost touch with a lot of people as I transitioned from high school to college when I was sixteen. I remember thinking about reaching out during my late teens and, in my immature insecurity, worrying that she wouldn’t want to stay friends with me– after all, I was younger, and she was more popular in our circles, prettier, funnier, more outgoing. It was dumb of me to worry about, since she had been so nice to me during all my awkward middle school years. If fact, she had made the tornado of teenage social crap a lot more manageable with her consistent kindness. But teenagers don’t always think their insecurities through.

Looking back as an adult, I feel a lot of guilt that I didn’t try. Of course people come in and out of our lives, so I don’t know why I feel so guilty. I think mostly, under the guilt, there is sadness. I lost several years I could have had with a friend that I had cared about. I’ve lost touch with a lot of people in my life. Some I have reconnected with, others I have not. I guess I always think that, thanks to Facebook, it will be easy to strike up friendships again once we stop moving all over the place.

As we were planning to move back to Arizona, I thought about the people I’d like to reconnect with. Becca was one of the first people I thought of, so I sent her a Facebook message and we became “official” friends again. I was hoping to see her when I moved back in July.

But by July, Becca was in California in the hospital. She told me in the fall that she wouldn’t get to come back home. That was really hard to hear. We messaged back and forth a bit for the next couple of weeks.

When I went to the hospital to have my baby, I thought about her a lot. I was not enjoying getting stabbed with needles and feeling so much pain and being walked in on all the time. But for me, the hospital stay was short and ended with a baby, joy, and a new lifetime to look forward to. Becca was also experiencing pain, intrusion, and plenty of needles. But her hospital stay was so different, and the end result was the opposite of mine. It made me so sad. It was not fair at all that I got to experience this and have so much to look forward to. Why couldn’t she have the same?

The last conversation I had with her, I sent her a photo of the baby. I wanted to talk with her about something that didn’t have to do with medical stuff, since she probably had to talk a lot about that sort of thing. Then, a few days later, I read her mom’s post on Facebook and all I could do was cry and cry.

I had a really hard time processing everything. Part of me felt like I didn’t have a right to grieve, since I hadn’t seen her in person in almost a decade. I went to her beautiful memorial service but not the reception (even though I would have been welcomed), because I didn’t feel like I had a right to go when I hadn’t been there enough during her life.

I’ve been trying to process this all for the last four months. First, somehow I don’t really understand death. It doesn’t seem real that someone can be here and smile and make memories, and then suddenly they are just gone. I believe in God. I believe in Heaven. I believe people live on after physical death. At the same time, death doesn’t register with me at all.

Secondly, there’s something so wrong about a 26-year-old having to say goodbye to everything and everyone. It’s not fair. CHD is FREAKING NOT FAIR. Have I told God this? Have I questioned Him a lot in the past few months? Yes, I have.

Finally, I have been thinking a lot about the person I am and the kind of person I want to be. I have been dealing with guilt. I have talked to Ben a lot about how I wish I had understood CHD more and how I wished I knew better how to be a good friend to Becca. The idea of visiting her at the hospital when we were younger did cross my mind. But I thought that might be a nuisance, and I didn’t want to be a nuisance. I didn’t realize until I read her blog years later that a hospital visit would have been most welcome. As an adult, and as someone with more understanding of disabilities, I realized a lot of things I could have done differently to be a good friend. When we were both at the state fair, it would have been awesome if I had hung out with her rather than gone running off to enjoy the thrill rides. I didn’t even know that rides were off-limits for her, and I never thought to ask. I could have sent her an email after a procedure to ask how she was doing, but I thought maybe bringing it up was rude, like when someone inappropriately comments on a missing limb. Stupid to think? Maybe, but I didn’t really get it.

So why am I sharing this? Maybe a little bit of it is personal processing. Maybe a little bit of it is regret. But mostly, this is a story of how I was not aware of CHD. I think it’s easy for those of us without much experience with disabilities or sickness to brush off “awareness months.” What does awareness do, right? Shouldn’t we be donating to research or something? Sure. But awareness is important, too. Being aware of CHD, and educating ourselves about them, will help us to relate to people better. It makes us better friends. Becca had a lot of awesome friends who “got it” better than I did. She had a lot of friends — both in the CHD community and out of it– who were educated on CHD. Or maybe they weren’t, and they were just good friends in general. I don’t know. But I do know I personally missed out because I wasn’t as aware of CHD as I might have been.

So the moral of the story is this: be aware of CHD! Don’t be afraid to admit your lack of knowledge so you can learn what life is like in that world. Recognize that heart conditions are often invisible illnesses. Have a friend with CHD? You might need to ask questions– like, can you eat at this restaurant, or should we pick a different one? Can you do this hike? What would YOU like to do? How are you feeling today? Or, you may have to be extra understanding when someone with a CHD has to suddenly cancel or is feeling super low-energy. And don’t be afraid to be there. I am always afraid of being annoying. Don’t worry about being annoying. Be there. Be aware. Be a friend.

Want to learn more about living with CHD? Start here, with Becca’s blog.