ALS AWARENESS MONTH

 

You likely don’t recognize my face, but perhaps you do my handwriting? I’m Sally, and for 12 years I’ve worked in the glassybaby web store; picking your glass, tying bows, and handwriting your gift messages. With music playing, coffee in reach, and no one in sight, I start each day writing notes from overnight orders. Those early notes get my best attention, and a few always seem to break my heart. Of the 75,000 glassybaby notes I figure I’ve written, I bet a quarter have been ones of sorrow and support accompanying angel, strength, and wet dog. Another quarter for celebrate, thank you, cherish and home sweet home. And on and on.  

If hundreds of colors make up glassybaby light; thousands of stories comprise its love. In 90 characters or less, you hint at those stories with the gift messages you have us pen. Truth be told, my fellow note writers and I do sometimes complain about the crazy volume of notes, especially during the holidays, but in this disjointed world of ours your notes regularly remind us how bound in love and kindness we remain.  

Not long ago I drew on the cumulative grace of your words to find the right ones for a seriously ill friend of mine.

It was late summer 2023 when Laura asked via text if I planned to attend our 40th year Colorado College reunion. Not keen on reunions, I quickly answered, “No, let’s wait and go together to our 50th!” She responded with a teary emoji that I found dramatic and out of character. Weeks passed before I understood what that emoji communicated; Laura recently had been diagnosed with ALS, and she knew there would be no 50th reunion for her. My beautiful, joyful, always active, always healthy friend had received a death sentence and had to go hard at life now.

 “Laura, this is not good” I remember impotently saying. My aunt had died of ALS, and I knew the incurable disease’s relentless assault.  

What glassybaby do you send to someone recently diagnosed with ALS?  I’ve tucked hundreds of “you’ve got this!” and “kick cancer’s ass” notes inside hope, but what glassybaby do you pick for a friend newly diagnosed with a devastating neurologic disease? In a helpless onslaught, I sent her strength, then joy, maybe comfort, maybe ocean, then smooch, each with a delicately worded, painstakingly printed note carefully tucked inside. I’m pretty sure I dropped an extra tealight into the votives, too. I do that sometimes...drop an extra tealight inside when the accompanying note suggests a grief so vast that leaving the house to buy more tealights seems unlikely. If one night of light might help, I see to it that there’s at least one more. It’s my agency. Don’t tell.  

Nearly three years into her ALS diagnosis and living at home in Annapolis, MD, Laura is supported by her husband Todd, also a Colorado College alum, three grown children (are we ever grown enough to handle our moms becoming sick?), lots of siblings, her Dad, and many friends. One of those friends contacted me a few months ago asking if I would host a Seattle event to raise awareness and funds for ALS research/care and to welcome him and a few others cycling 4,000 miles across the country this summer to honor Laura. They start riding at La Push, WA on May 1, stop in Seattle on May 5, and finish in Delaware in August. You can learn more at www.coast2coast4ALS.org  Funds raised will be split between Team Gleason and the Robert Packard Center for ALS Research at Johns Hopkins University.  

As a sweet nod to my friendship with Laura and in recognition of ALS Awareness Month, glassybaby will make a $2000 donation to Team Gleason, a New Orleans-based non-profit founded by WSU football player Steve Gleason and the origin story behind awesome ain’t easy. Team Gleason provides assistive technology and equipment to the ALS community, helping them access timely resources and personalized solutions that preserve independence, dignity, and human connection throughout the progression of the disease.  

A few happenings at glassybaby madrona store and event space on Tuesday May 5 coincide with a Seattle rest day for the Coast2Coast4 ALS riders. From 11 to 2 a volunteer from the Society for Calligraphy and Handwriting will design and personalize Mother’s Day gift tags for shoppers and from 2 to 5 sugar cookies from the Madison Park Bakery shaped and frosted as glassybaby will sweeten afternoon visits.  

Then from 5 – 7:30 in the store’s event space, I will host a small gathering of friends and other folks wanting to meet the cyclists and hear stories of why they’re riding for Laura and ALS. If you’re anywhere on the ALS journey and want to be in the understanding company of others, please stop by and/or email me at sally@glassybaby.com 

 

Told one by one, stories light the love at glassybaby. Thank you for letting me tell you mine.