Fragile X
written by: carrie peterson
president + founder, beacon's closet
Who is Beacon? Why is there a baby head for a logo? We have gotten these questions, perhaps more than any others, in the 20 years that we have been open. The answer is sadly mundane, but who Beacon turned out to be is perhaps more interesting.
Beacon is the namesake for the baby that I decided not to have, a fantasy baby, and the unfortunate name that I would have given to a child if I would have had one in my twenties. Beacon's Closet was to be the thing that I nurtured, and ultimately a rejection of motherhood in favor of entrepreneurship. For most of my life, well into my thirties, kids to me were just sort of . . . meh.
The success of Beacon's Closet was empowering, and exceeded my expectations for career fulfillment. I was already lucky, and 9 years into the life of Beacon's Closet, my husband and I both got luckier. We managed to have a baby . . . and to not name it Beacon.
From the first moment that I held my child, I understood all of that sentiment that I had read, or avoided reading, on mommy blogs. I was overcome with a sense of monumental connection. I felt that I was given a gift that I didn't even realize I needed. It even seemed extravagant, like way more happiness than I deserved. I loved him. I would die for him, I would defend, and protect him. I felt this confidence for exactly one week.
Complications from what we later learned stemmed from fragile X syndrome, made me feel like I was not doing my job of protecting him very well. I felt powerless as he stopped eating, showed signs of developmental delays, and later developed seizures. Fragile X symptoms vary wildly among the affected population, but this is how it manifested in our child.
Fragile X syndrome. It actually sounded kind of cool, and at least some of it is. A lot of kids with FXS have an incredible capacity for humor, kindness, and an intense magnetism. Even the most detached subway riders in Brooklyn find themselves winking at our kid, grinning, complimenting him on his smile, or simply laughing with him about his overwhelmingly obvious enthusiasm for trains.
Complications from what we later learned stemmed from fragile X syndrome, made me feel like I was not doing my job of protecting him very well. I felt powerless as he stopped eating, showed signs of developmental delays, and later developed seizures. Fragile X symptoms vary wildly among the affected population, but this is how it manifested in our child.
Fragile X syndrome. It actually sounded kind of cool, and at least some of it is. A lot of kids with FXS have an incredible capacity for humor, kindness, and an intense magnetism. Even the most detached subway riders in Brooklyn find themselves winking at our kid, grinning, complimenting him on his smile, or simply laughing with him about his overwhelmingly obvious enthusiasm for trains.
Valuable information can be found about fragile X syndrome here: fragilex.org. While one in about every 150 women is a carrier of the syndrome, both women and men can be carriers of Fragile X. Any female carrier has a 50/50 chance of passing it on to her baby. Men can also carry a fragile X chromosome, as they have one X and one Y, so if they are carriers, they will pass their carrier status on to all of their daughters but none of their sons.
It is through Beacon's Closet, my first "baby," that I am able to support our family, and to have been introduced to my partners, and all of the amazing humans who help me run it. I couldn't trust that job to anyone else. And, to all of our customers, the greatest of thanks, for supporting us and helping us maintain and grow a thriving business.
On that note, Happy Fragile X Awareness Day! 100% of profits made from web sales today will be donated to the National Fragile X Foundation. Feel free to share this story and spread the word about the prevalence of fragile X syndrome.
We will donate 100% of online sales on July 22nd to the National Fragile X Foundation.