Sandals

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.

A Mother's Intuition

One month ago I sat at a meeting with various members of our school's special education staff and my husband, discussing the social situation for my son at school, and the possibility of testing him for social disorders. The meeting stemmed from my son's spring conference, where his teacher told us that giraffeboy had "no friends". I asked if it was possible to look into this at the conference, but as I sat at the meeting and listened to the school psychiatrist describe his brief observations of my son, I already knew what they would find, and I wondered again about the difficulty of being a mom during the tough times.

To me, "Mother's Intuition" is that ability that we as mother's have to know there is a problem before anyone else does, or to perceive what our child needs before they tell us. It varies from the basic packing snacks and drinks before we leave the house to stave off our kids hunger (and before you argue that this is common sense, when was the last time your husband packed the kids snacks or beverages when you didn't have to tell him to?) to knowing something is wrong in your gut before someone says something or something happens. It is the second kind that is the tough times, the kind that you know will differentiate your child yet again from what is "normal", the kind that will lead to the revelation that something happened to your child that was bad, or the kind that means you will start on another long journey. What makes this kind hardest is that they come with things you can't "fix" for them, problems not easily solved, and they leave you feeling like an inadequate parent. They leave you with the "what if he'd had a better mom?" kind of questions that none if us like to ask ourselves. 

I can distinctly remember the first time that my "Mother's Intuition" resulted in a whirlwind of events and I wondered to myself "what have I done?" My daughter was just over a day old, and as I sat holding her after our last visitors of the day had left the hospital, I remember thinking "something isn't right". The best way to describe it was that she was wheezing.  So I called my nurse, and they took her to the nursery to check her out better. Fast forward less than an hour and my full term daughter had been admitted to the NICU. There they hooked her up to a litany of machines, wires everywhere, and her three days in the NICU had begun. Thankfully for us, when all was said and done it was just fluid left in her lungs that didn't get pushed out during birth because she was a c-section baby, and my daughter was just fine. But those three days of waiting for an answer while she endured various tests were some of the scariest days of my life.

There are times in life too where my "Mother's intuition" has failed me. My daughter's diagnosis of marfan syndrome is the one that stands out the most. I wasn't prepared for her positive genetic test, and it hit me hard when we found out. I really had no idea, and I really thought she didn't have it. Even when it comes to this situation with giraffeboy, I always just assumed he'd be the kid whose happy with only a few close friends. It wasn't until he got into kindergarten that I began to really worry there was more to it than that. And even then it took me more than a year to really acknowledge what I'd begun to suspect and push for the testing. So it's definitely not a foul-proof sense for me, or at least I don't always listen to it.

Which brings us back to yesterday. I sat again at a new meeting table with many of the same staff at our school. The results of the month of testing and survey filling-out were back. And the results were what I suspected all along. My son has an Autism Spectrum Disorder. It doesn't change who he is or how I feel about him. It doesn't change how much I love him. He's still the kid who is so smart, whose smile can make my entire day, who gives spontaneous hugs and kisses, and who will randomly say "I love you mom" to me for no apparent reason. He's high-functioning to be sure, but it's still there. One more challenge he will face. One more road block he'll have to overcome. And I will be there with him every step of the way making sure he's not alone, making sure he knows how much I love him. I don't have all the answers to help him right now, but I will be doing everything I can to get them.

After all, that's what a "mother's intuition"is for. It's the horn that rings in our heads and hearts to warn us that we should prepare for battle. And even if our "enemy" changes every time, being a mother means we'll fight the war no matter how big the problem. We'll fight it until we find a solution, fueled by our best weapon, our unending supply of love.