Before having my son, I was informed of the countless number of ways—by a countless number of people—that becoming a mother would change my life. And, boy, were they right!
There was learning to subsist on what seems an inhumane shortage of sleep. There was the transition from being someone who wanted all things clean and in perfect order to being someone who—after the three or four “costume” changes a day for both baby and mom—became perfectly content to wear clothing with questionable baby-related stains. There was the fact that everything about my life all at once revolved around the well being of my sweet (and, oh-so-easy-to-love) kiddo.
But there were other things for which I’d never prepared myself—most notably, the way being a mother would change how I looked at just about everything, seemingly related or not.
No longer can this once horror-film fanatic watch even the least haunting of movies, because that gal or guy running for their life is someone’s child! No longer can this once totally obsessed news junkie digest little more than bullet points and brief headlines, because I’ll find myself in a sobbing mess on the floor about any story involving a child.
And no longer do I look at the poor mother or father in the restaurant struggling to get their child to behave and utter a holier-than-thou, “My kid will never behave that way.” Because, well, he does. Not because he isn’t a good child, but because he’s a child. Period.
Instead, I find myself experiencing a level of sympathy and empathy with other parents that I’ve never experienced in any other part of my life. I always try to offer up an understanding smile to the parent in Target whose child is throwing some toy-related tantrum, or the mom with a newborn who looks as though she hasn’t had any sleep—or a real shower—in at least a week. But these are small, fleeting situations and moments that we’ll all probably miss at some point in the future. And I suspect we would all agree that having the opportunity—yes, even the tantrums and lack of showers—makes us lucky beyond measure.
At fall Quilt Festival in Houston, we had the honor of hosting a very special group of parents and their children for a presentation at The Quilt Show booth involving the non-profit organization RARE Science. Each of the children there has some type of rare disease, and most are on varying degrees of the Autistic Spectrum. As anyone who has been to Quilt Festival knows, the show floor can be pretty chaotic, and this proved a challenging situation for a group of children that have difficulty in loud or crowded places.
The mom in me wanted to reach out and hug them, and the parent in me wanted to reach out and hug each of their parents. But those feelings quickly turned to sheer awe and amazement at the strength that each of them showed. This incredible group of parents often don’t have the answer to what exactly has caused their child’s illness—and it’s often the case that even doctors aren’t quite sure how to treat it—but it’s clear that not one of them is going to stop looking for those answers.
And that’s also the goal of RARE Science—to provide a path to possible treatments and to search for answers and connections among rare diseases. In this issue of Friends@Festival, you can learn all about the organization’s work and find out how you can become a part of their RARE Bear Army, which donates special fabric bears to children with rare disease.
Whether or not you’re a parent, it’s hard not to be moved by the stories of these very special children and the organization working to provide them support, resources, answers, and solutions. And I hope that each of you will consider donating your time, money, or a little something from your fabric stash to help them reach that goal.