Tuesday, June 26, 2012


I forgot my bag of wonders when we went to giraffeboy's eye doctor appointment the other day. The kids are getting older, and I wrongly assumed they didn't need me to bring so many distractions for these appointments. And as I sat there in the waiting room waiting for the drops to dilate his eyes, I recognized a kindred spirit across the waiting room, who gladly shared some books with my kids, making the 2 1/2 hour appointment more bearable. Once again, I was so appreciative of the bond shared with other moms in my position.

We're the MOSKS, or Moms Of "Sick" Kids. You can recognize us in specialist's waiting rooms across the country. We're the Moms whose kids go to the doctor more often than they go to the mall, whose kids have entire pages in their address books for the numbers of all their various specialists. We're the ones who drive long distances, sometimes even flying across the country, in order to get our kids into the right doctors who know our kids' disorders. Were the ones who can tell you our kids' days off from school next year before the last school year even ends, because we're trying to plan our kids' appointments around their days off, so they miss as little school as possible. We network online with other parents whose kids share the same condition, hoping to give our kids the best life and medical treatment possible. And we are the ones who aren't afraid to tell a complete stranger about our kids' conditions, hoping to spread awareness and also change how the world sometimes sees our children as "different."

I've never met another MOSK at the doctor whose kids had marfan syndrome, but I have learned of so many other challenges a child can face from my conversations with them. Our kids have heart problems, eye problems, orthopedic problems, or a combination of these. They have down syndrome, muscular dystrophy, heart disease, and any number of other medical conditions. Although varied in their challenges they face, they are all amazing. They have learned over the years to be patient, and the waiting rooms we've shared have not been their first, and certainly won't be their last.

You can recognize a fellow MOSK in a waiting room with a quick glance around, especially at our eye doctor. While many of the parents bring their kids sans toys or entertainment, my fellow MOSK's have their bag of wonders in tow. The bag is simple: books, coloring supplies, snacks, our kid's favorite toy. But for the kids who visit these places frequently enough to be bored with the doctor's toys, it is essential. And for the parent whose kids visit once a year or are new around the place, it isn't necessary. But for those of us who have a membership card to the MOSK group, we visit frequently and have learned to adapt to make the trip bearable. And somewhere along this journey to diagnosis and treatment, we've lost the need to hide from each other what our kids face, and have instead learned to let down the walls we so often build and honestly discuss our kids' conditions.

Which brings us back to the other day. I looked over and saw the mom and her daughter, bag of wonders in tow, and struck up a conversation. We talked about her daughter's eye condition she was born with, I shared about the eye issues my kids face from their marfan syndrome, and she generously shared some of the bags contents to entertain my kids. Chances are, we will never see each other again, as I have rarely run into the same MOSK a second time. But I am grateful for the knowledge I've gained from other MOSKS over our many conversations, and the reminder that the challenges my kids face are like those of so many others. I didn't ask for a membership card to this club, but I have enjoyed meeting some of the various other members, and gaining a knowledge and appreciation for the challenges they've faced.

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