Sunday, May 27, 2012


My husband wore sandals today. We took a road trip around Lake Pepin, enjoyed the nice weather along the river, and during a stop for cheese, beer and ice cream about half way around I realized he was sockless in sandals. I didn't say anything when I noticed, afraid I would ruin the moment, afraid an innocent comment would send him back into socks and shoes indefinitely. So when he finally acknowledged it as we got nearer to our house. I was overjoyed and proud of him.

So what? I know most of you are asking that question right now. So here's the deal. My husband is 36 years old. I have been with him since we were both 19, and not once have I seen him wear sandals when it didn't involve water. Even then, it was only in the last 5 years that he traded in water shoes that fully covered his feet for a pair of sandals. My husband has hammer toes, a trait that my kids are slowly showing signs of, that leave his toes an intricate weaving, resembling a work of art. They are beautiful, interesting, uniquely his, but to him they have always been something to hide, a source of difference in a world of straight toes. He has always been amazed by my feet, not in a foot fetish type of way, but in the way you marvel at something you covet. So to see his feet exposed to the world is a huge thing.

I can't say I don't get it, that need to hide the parts of you that are different, that people might notice and exclaim over. I have always been overweight, and I'm not talking about a few pounds, and the initial trip into my swimsuit every time I've gone into a pool has always been a dreaded experience for me. Once in the water, I'm able to let it go, but the walk from the safety of a cover-up to the edge of the pool or beach seems like miles to me. But I do it. I love to swim. And more importantly, I won't let my weight stop me from enjoying the water with my kids, who love to swim too. So I get it, I really do.

For my husband, marfan syndrome has also left him with a slightly protruding sternum, and so in addition to his foot sensitivity he doesn't like to wear thin shirts, or things that cling to his chest. Getting him to swim with the kids has been a work in progress, and I'm glad to say he's finally reached a point where he does it without a fight, and enjoys it too. Someday, maybe he'll even reach the point of comfort where he can swim without a shirt, but that doesn't really matter to me. Being in the water with us is enough.

I don't think I truly got the big deal about his chest protrusion until recently. Maybe I'm just used to it after all these years, and it's just another feature that makes him who he is. But a recent experience helped me get it much more. I was with his aunt waiting for a minor surgery, and the anesthesiologist was doing a medical history preparing to do her job. "What's this?" she asked, poking his aunt's protruding sternum. It was so insensitive, so thoughtless, and unnecessary. And yet I realized in that moment, it was not the first time she had been asked that way, that it was probably an experience that many marfs, including my husband had faced. And it suddenly made sense why he was so sensitive about it. How else would you react to being asked that throughout your life? Who can blame a person for hiding the things that make them different from others when that has been their experience?

Which takes us back to today. We talk often about the need for both of us to find acceptance of ourselves, so we can teach our children to love themselves for who they are. Since so many of the things that might visibly differentiate our kids from their friends are related to their marfan syndrome, much of the burden to set that example falls on Giraffedaddy. And today, one more wall was torn down. one more victory in the fight for self acceptance and self confidence was won. And this wife couldn't be more proud of the amazing man she's married to.


  1. Bravo to your husband! I can understand why he feels the way he does about his toes & my daughter understands about the chest. I also have hammer toes (now starting to get really bad) and I usually wear covered shoes (mostly because my feet are freezing all the time) but during the summer when it is warm enough to wear sandels, a look at my feet often draws a comment or two of "what's wrong with your toes?" and my daughter gets the same of her pectus carinatum.

    It has taken time to adjust to this as just another way we are unique, but there are also times when we just want to be "normal" (whatever that is! LOL!).

    Hoping you all have a very good summer!
    Shelly & Daniel Moore

  2. I hope you are having a great summer too! And I hope both you and your daughter (and husband and the rest of the family too) see the beauty in your "uniqueness". And I love your blog, and I'm amazed by your story. Take care!