If they ever create a vehicle that can drive to the past, I know exactly where I’d take it – straight back to September 4, 2014. I’d cruise the shiny new machine to the covered parking garage and hustle to the waiting area of the cardiologist clinic, making sure I arrived in plenty of time to greet my younger self. As soon as I saw my pregnant body trudge, dazed, out of the consultation room, I’d envelop her in a hug and rub her baby belly. I know her mind is spinning from the diagnosis of her daughter’s congenital heart defect. I’d take her for a drive to process the news (she does her best thinking and talking on the open road). I’d let her do the talking, but I know she won’t say much. She’s too much of an introvert to spill all her inner thoughts. So, knowing what I know now, and knowing that I still don’t know much, this is what I’d tell her.
I am sorry. I wish it wasn’t this way. I’m sorry Daisy has to go through this, sorry that any baby has to go through this. I wish that every child was born with a perfect heart that would sustain their body through a lifetime.
Be flexible. Congenital heart disease is complicated and unpredictable. Trust in the plan from the doctors, but don’t marry it, the plan may change. Daisy is in charge; she’ll dictate the care she needs.
Don’t be afraid to speak up. You’re the momma, and you are an integral part of the team that cares for Daisy. Don’t be afraid to speak up when something doesn’t seem right. You are Daisy’s best advocate; she needs you.
Finally, you’re not alone. This life will feel lonely at times, but you’ve instantly and irrevocably become part of a league of parents, families, individuals, and medical professionals who fight congenital heart disease every single day. You’ll be surprised by the knowledge, support, and care of this heart community. And when you’re ready, reach out to them. Even though you don’t know them, they’ve already welcomed you in.
I’d embrace her again, wipe her tears, and send her on her way. But then I have to return back to the present and savor every moment. I better hurry to ensure I’m home when my future self rings the doorbell. There’s still much for me to learn.