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.