Living with CHD, Facing Fertility Questions, and Finally Letting Myself Feel It All

I’m Pissed. And I’m Allowed to Be.

I’m pissed. I’ve always been known as the girl with the positive attitude. “You never complain.” “You never ask why me.” Well I am now. So God, why me? 

Growing up, having a heart condition didn’t always feel like a burden. I got to miss school, wear cool heart monitors, and soak up extra love and attention. My appointments followed a familiar rhythm: skip school, go to my appointment at Rady Children’s hospital, have lunch with my parents, get the “everything looks good” report, and head home. It was always a good day. My dad kept things lighthearted — always cracking jokes and making the experience fun. And I was a kid - I didn’t know any different. And I was a kid - I didn’t know any different. 

As I get older, I’ve started to notice my body slowing down — something we all go through. But with a heart that’s been over-performing since day one, those shifts feel a little more significant. I’m also at the age - well past it, according to society and some of my doctors - where the thought of having kids is on my mind. And for me, that conversation is filled with uncertainty. One doctor says I can. Another says it’s risky. But even the one who says yes can’t give me a clear answer. They base their opinion on my anatomy, my current health, and how well I take care of myself — but the truth is, no one really knows. Because everyone is different. When I ask, “But will it impact the longevity of my life?” the answer is still: they don’t know yet. So… is having kids worth it to me? Still undecided. And I say that with full honesty and transparency in this exact moment — 6/27, 6:43 p.m. My thoughts and feelings might change tomorrow.

There’s always the option of surrogacy or freezing my eggs — but both come with their own physical demands, not to mention the financial burden. They’re conversations I know I’ll need to have with my care team eventually. Still, none of this feels ‘normal.’ These aren’t the kinds of decisions most people my age are facing. And lately, it’s been weighing on me more than I expected.

Dear God / Universe / Higher Power - Why? Why me? Why does my body feel like it’s betraying me? I’m pissed. I’m angry. I don’t understand why this is a part of my story. What is this supposed to teach me, if anything?  I see people abuse their bodies every day, while I do everything I can to care for mine - and still, I’m dealt the harder hand. Is it wrong to feel this angry? Is it wrong for me to be angry? Because I am. I look at videos of women having normal pregnancies and it aches. I want it so badly to be me.