The other day, someone asked me how pregnancy had treated me. I actually had to really think about it. I wasn’t sure if I’d had a bad pregnancy or if Braveheart’s diagnosed condition was what made it difficult. I came to a conclusion: the pregnancy itself wasn’t bad, but the repeated hospitalizations for Braveheart’s condition made the majority of the experience a rather traumatic one.
In my opinion, with pregnancy – even a healthy one – comes the fear of the unexpected. You just don’t know what you’ll get. A baby, yes, but well-being is not guaranteed.
In our case, Braveheart was diagnosed with Hypoplastic Left Heart Syndrome, but Congenital Heart Defects (CHDs) can be such a broad spectrum. While I was pregnant, we read stories of children who needed multiple surgeries and/or a heart transplant. About children who struggled to survive in the NICU only to lose their battles in the end. There was actually a time when I didn’t want to do any baby shopping because I thought “what’s the point? Our baby may die anyway.”
Yet, through all of this fear, there were those stories out there that gave us an idea of what to expect. Stories of hope, no matter what the outcome. Sometimes it helps just to know that there are others out there going through the same or similar struggles that you are going through. Being in situations like these can be very lonely, dark and hopeless. For this reason, I felt it in my heart that it was important to get our story out there. During my pregnancy and even just after our little guy was born, we didn’t talk about his diagnosis much. We didn’t want to, because it hurt to explain repetitively to people. Plus we were still trying to wrap our minds around it.
It wasn’t until recently that I stopped showing him on social media as this perfect child without struggles, but rather as the perfectly imperfect, amazing little human being he is, challenges and all. I’m finally okay with saying: no he doesn’t crawl YET, no he’s not sitting up on his own YET. Yes, he has a soft cry because he once had a completely paralyzed vocal cord. But for a child who’s endured two open heart surgeries and complications, he’s doing fantastic. We are so proud of him.
Our entire life does revolve around Braveheart right now, but that doesn’t mean we don’t find time for fun as well. Or that we don’t take opportunities to enjoy his cute little outfits (and shoes!), his silly nature, and his milestones. We celebrate every moment with him. Even when he cries we celebrate, because once upon a time he didn’t have the voice to do so. We want to show that, even through medical drama, heartbreak, and unexpected turns, there’s always hope and happiness in the midst of it all.