By Christy Sillman
21 Feb

Heart Mom 2.0

Friday, February 21, 2014

I thought pregnancy/labor was going to be the hardest part of being a mother with congenital heart disease, and let me tell you, it wasn’t exactly a walk in the park—but what I’ve found most surprising is how challenging motherhood itself would be in the face of my CHD.

Regardless of how you become a parent – old fashioned baby-making vs. surrogacy vs. adoption – you never really know what you’re getting into until you’re there. It’s a club only parents understand. I thought working 12-hour night shifts in a busy pediatric ICU was motherhood “training,” but little did I know that I’d later view those 12-hour shifts as my mommy breaks!

You see, it wasn’t until I became a mom that I truly felt my CHD. Part of the reason was because of how sick my heart became after pregnancy (I developed postpartum cardiomyopathy), but mostly it’s because I’m suddenly deprived rest, sleep, and the general ability to care for myself because I am now devoted to this tiny little human who needs me 24/7.

Gone are the days of lounging around in PJs, taking the time to cook delicious heart-healthy meals, or sleeping in. My now four-year-old son is a constant ball of energy and I’m forever chasing after him. When I do get “me time,” I suffer from a commonly-known condition called “mommy guilt.” You’re never really free as a mom; you’re constantly thinking about your child, even when they’re not with you.

There’s also the unique experience of my son. I realized the other day that at four years old, my son worries about me. He’s incredibly empathetic and thoughtful, a definitely positive trait in my opinion, but he frequently asks “you not feeling well Mama?” I hate not always having the energy to keep up with him. It makes me feel sad. Then he holds my hand, puts a blanket over me, and stokes my hair while whispering “I love you, Mama.” He’s going to be an amazing person because of his CHD upbringing.

I’m forever grateful that I was able to have a child. I know many of my peers will struggle in their journey to parenthood, if they choose to become parents. It’s costly no matter how you go about it – I paid for my “natural” baby-making through my heart health, and others may pay through their wallets or the deep emotional tolls of failed adoption/surrogacy.

It’s because of our unique journey/experience as parents that I’m reinventing the term “Heart Mom” or “Heart Dad” – these titles are traditionally used to describe parents of children with CHD. ACHDers who are parents need to upgrade the term.

I’m a Heart Mom 2.0 – the new generation of “heart parents.”

The survivors who fought death and gave life.

The generation of parents with CHD – raising children who will know CHD in an entirely unique way.

I don’t want to demean the parents of CHDers’ journeys, because your journey is valid and unique as well – but we deserve a title within our CHD community to exemplify the spectrum of the congenital heart lifelong experience.

I think we can all agree that we hope to live long enough to hold many titles – Heart Spouse, Heart Mom/Dad 2.0, Heart Furry Mom/Dad, Heart Athlete, Heart CEO, Heart Hero – HEART AWESOME.

Here’s to all the Heart people out there – no matter what title you hold.

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