My Love for the New CHD Parents
I'm not sure how we got here, but somehow I've blinked and my son is 19. He's a sophomore in college and a premed major who's already a Certified Medical Assistant.
He's also a four-time open heart surgery survivor.
He's got lots of acronyms attached to his Congenital Heart Defect (CHD) history and, as of last year, he's added ventricular tachycardia to the mix. He's had four open heart surgeries, two stents, one melody valve, one ablation, one Link monitor, and countless MRIs and CAT lab visits. He still goes twice a year - and now to two different cardiologists: one general and one for the v-tach.
This path is not for the weak. It stinks. That's it. There's no shiny way to spin it. Being a CHD parent is the most difficult thing I've ever done, and I suspect just about all of us would say the same. There is no cure for the myriad of different CHD combinations any child could be born with. And that's a really tough pill to swallow. It never gets "easier," but unfortunately, you do learn to adapt.
I say all of that to say this to new and younger CHD parents:
Be scared on the days you need to be scared. It's OK and don't let anyone tell you otherwise. Cry if you need to. I did. But, for all the days in between, treat your child like anyone else - and others will follow.
If your child falls, let them fall. Try as hard as you can not to see an imaginary bubble around them. I regret not taking this advice when my son was small.
As they get older, it's really important not to treat them like they are broken. They are not. Their histories are just different. It's up to us to change the perceptions in our own heads about what their childhoods may look like.
None of what I'm saying makes it any easier for you. I've been there and still live there sometimes. You're angry. You're frustrated. You're helpless. Believe me, I know. The memories of every hospital stay, surgery and visit are forever burnt onto my brain.
However, I try to remind myself that my son doesn't know any different of a life. This is his journey - as much as I hate it. He doesn't have a "before CHD," so this is all it's ever been for him.
As your child gets older, when it's appropriate, educate them about their bodies. If they have restrictions, meet them with a positive outlook (as best you can). If they're on meds, do the same. As my son got older, we encouraged him to ask questions and to learn more.
Now, as he's gotten older, he's taking control of his own health (with me still there, of course; I'm not leaving).
Despite all of it, he swears he wouldn't change anything because it's made him who he is and opened doors to his future he would not have had. As his mom, I, of course, still disagree.
I am still a VERY emotional mama, but I have reconciled in my mind that as much as I'd take it away in a minute if I could, I can't. It's easy for me to say this right now (especially since he's stable and healthy), but I know the emotion and anger and all of it is hard. I still hold my breath at every appointment. I still smell the smells and see memories at every turn. It never goes away.
This path is not easy. It sucks. We'd all take it away if we could. But CHD parents, just know that you're doing great. Give yourself some grace. Take it one day at a time. There's no roadmap for this. Every single child's journey is different.
You will overwhelm yourself if you project a decade down the road. Enjoy the quiet moments. Enjoy the calm as best you can. Remember that for all the tough days, there are also so many good ones.
Lean on other CHD parents or family that will let you be in your feelings and not tell you how to feel about a situation they can't even fathom.
I am wishing all of you the very best. I will say that in the close to 20 years we've walked this walk, we've seen many medical advances. I still keep hope that one day there will be a cure. Until then, I will keep walking beside my son and supporting him as best I can.