I Walk the Line: What it's like Being the "unaffected" spouse and parent

I've written this blog in my head a thousand times since the conversation about the term marf back in April. (If you missed the dialogue, you should read Maya's Blog from April 9th, where she did a fantastic job of reminding those of us who are "unaffected parents" what our role is in raising kids with marfan syndrome.) The blog, as well as the online conversations surrounding this got me thinking again about what my role as the "unaffected parent and spouse" is in a family of people with marfan syndrome.
So what does "unaffected spouse and parent" mean for me? It means that I am the only one in my household that does not have a chromosome 15 mutation. It means that while the rest of the family goes for yearly echos at the heart doctor I watch and wait. It means that I can be sympathetic to what my kids deal with but not empathetic, since I could never truly understand what having this condition feels like. It means that every new challenge anyone in our family faces from this disorder, I have to filter my thoughts and opinions, and be ever considerate of the rest of the family's feelings first. It means that I even question terms I use to describe marfan syndrome, wondering if the members of my family and marfamily will be offended if I use terms like condition or disorder. And it means that I often turn to my marfamily, the group of amazing women I know who are my age living with marfan syndrome for advice on when I need to let my kids out of the safety bubble that would be so easy to keep them in.
It's hard parenting kids, and harder still parenting kids who are not perfectly healthy. And there is an extra challenge when the other parent shares the kid's condition. Every time a new challenge arises for my kids because of this condition I wonder "How will Giraffedaddy feel about this"? When we are talking about how to handle sports activities at school or with boy scouts, I am ever conscious of my words, my tone. There is always a question in my mind of whether Giraffedaddy's experiences growing up should have more weight than my gut feeling, whether to put more weight on his emotional scars or on my mother's intuition. When my child is heart-broken over not being able to do what other kids his (or her) age can, I can't turn to my husband to vent my frustration and heart break for them after bedtime without worrying how he will feel.
The same week that the Marf conversation happened on Facebook, I saw a post from a friend about The Ring Theory, which gives a map of how not to vent to the wrong person when someone you love is going through a tough time or dealing with a medical condition.

While I don't agree that someone going through a hard time should have an open reign to continually vent to everyone around them without regard for anyone's feelings, I absolutely agree with the idea that it is not ok to dump our emotions and frustrations to people more affected by the situation.  Which leads to the challenge of being the "unaffected" spouse and parent. When it comes to my kids, they are the inner circle, and my husband and I would be first ring. But with his shared condition, he has that little edge in closer to the center, that little extra fact that puts me slightly further out on that first ring. It's like I am first ring, once removed. And that simple fact means I spend my life walking the line between honesty in how I feel and consideration for all of their feelings. My husband doesn't expect this from me, would never ask it from me, but it doesn't change the fact that it's the reality of the "unaffected spouse and parent". Marfan Syndrome affects so much of my life, but as the "unaffected spouse and parent" I am left to stand quietly by and let those I love dictate it's significance in our life. It's a hard place for the family scheduler and organizer to be in.  It's a choice I made long ago when we started our life journey together, a choice I would still make today, but it doesn't change the fact that sometimes it is a really hard place to be.