The Immense Sky: Space to Deal, Space to Feel

Our Heart Dad Series continues for the second week of June. Here Margaret King shares how her husband Shawn’s reaction to their journey as heart parents differed from her own.  

As I sit here writing about heart dads, I realize that it’s impossible to finish this piece without my husband, Shawn. So, we are camped out on the patio of a local coffee shop on one of those rare, picture-perfect Wisconsin summer evenings that seem to go on forever, talking about our different ways of handling this journey over the 9+ years now since we heard the news of our son’s HLHS at our 20-week ultrasound.

How can two people walk the same road and yet have two very different experiences? It’s humbling to realize that our own perceptions of the same events can be wildly different, no matter how intimate the relationship. Imagine going on vacation to hike in the Rockies with your spouse, soul mate, and/or dearest friend, and realizing at the end of two weeks of backpacking, one of you had noticed every small detail about the flora and fauna you’d passed, whereas the other had focused on studying map coordinates, local lore, and the geological layers of the mountains.

Would you feel like you were speaking separate languages, and find the other person’s view of the trip incomprehensible? Or would you cherish each other’s interests and strengths, and feel your lives were richer for sharing your different scopes of knowledge with each other?

That’s how the marriage of two heart parents can be. Shawn and I had to find a balancing act, a way to play off each other’s different strengths and try to compensate for our each other’s weaknesses, to avoid the utter exhaustion of duplicating the hard work of raising a little person with a single heart ventricle. In that spirit, we thought it would be best to have a “his & hers” dialogue about our different experiences as two heart parents sharing the same child.

Shawn: You’re really good at handling all the little day-to-day stuff that drives me insane. It’s the endless tiny glitches of everyday problems that wear me down.

Margaret: Yeah, and you’re good with the really big things. I can’t handle the big upsets. I kind of tend to fall apart with those.

Shawn: My strong point isn’t networking or making connections with other heart parents.

Margaret: Whereas I’ve met a lot of people and made a lot of great friends on this journey. I couldn’t do it without them.

Shawn: You stay up to date on the current research.

Margaret: You focus a lot more on creating a sense of normality, while I can get into these funks where I dwell too much on the medical stuff. But, I don’t mind dealing with the school and handling all the teacher meetings and IEP procedures.

Shawn: No doubt!

Margaret: I feel I’ve had a lot more ups and downs and this journey, and you’ve been more of the steady one.

Shawn: The heart condition is an ever-present background hum for me, but I try to keep it in its place. But, it never goes away.

Shawn & Margaret: We both think that it’s ok to deal with the realities of raising a heart kid in different ways. Whether you’re married or a single parent, sometimes the complexities and circumstances of raising a heart child are far beyond what any one person can be reasonably expected to handle. As heart parents, we all need to recognize our own areas of strength and build on these, while relying on others to help with some of the areas where we aren’t so strong. In a heart parent relationship, it’s important to give each other the space to deal and process in our own ways, because two people may handle the same situation very differently.

Giving each other space to deal and allowing each other to work as much as possible in our different areas of strength has worked for me and Shawn. It’s allowed us, in the words of my favorite poet, Rainer Maria Rilke, to see the immense sky before and above us.

“Once the realization is accepted that even between the closest people infinite distances exist, a marvelous living side by side can grow up for them…which gives them the possibility of always seeing each other as a whole and before an immense sky.”

–Rainer Maria Rilke

 

Margaret King is the mom to the almost-9 year old mighty K-man, a spirited boy with half a heart who is determined to live fully, and is married to the awesome heart dad, Shawn. A content marketer and writer in Wisconsin, her other interests include hiking and being outdoors, reading, and avoiding going down the thrill water slides her son is passionate about. She hopes to have a small goat farm someday.