This Star Won't Go Out

Monday, June 28, 2010 11:16 AM


Wooh Hooh! Make-a-Wish event is this weekend, and gets started early with the arrival of two of Esther’s friends on Wednesday. Thursday we go to the hotel in Boston, and the other 4 friends arrive. It will be a busy, busy week for Esther, who is normally overstimulated by an hour or two with a visitor (like the recent visit with her cousins Victoria and Alex!), or the exciting weekly visit to the Jimmy Fund Clinic!!! And of course we have lots to do, what with getting a hospital bed and oxygen tanks delivered to the hotel, airport pickups, house cleaning, packing about 1000 things for Esther, and our own bags with swimming suits and party gear . . .


Pray and hope for health and strength and joy and awesome memory-making to last a lifetime . . .


Lori





MAKE-A-WISH WEEKEND



by Lori and Wayne Earl


A few days before the Wish weekend began, a bulky package arrived and everyone got their first view of the deep lime green bracelets which would become synonymous with hope and with Esther. (In fact, from that moment on, this color would be referred to by her friends and family as “Esther Green.”) On the bracelets were etched five simple words: THIS STAR WON’T GO OUT. Included in the packet was a note:

Dear Esther and the Earl Family,

The enclosed were created by the world design team of Alexa Lowey and Melissa Mandia. We hope you enjoy them. Approx 80 people are already wearing them and we will be ordering more shortly - the demand by those who know or who have met Esther has been huge. Remember “This Star Won’t Go Out!”





Alexa later explained that she and Melissa had been considering different phrases when this phrase suddenly “just came” to her.


Esther’s Make-A-Wish event was actually two years in the making. She just couldn’t decide what she wanted or needed. The Make-A-Wish counselors plied her with suggestions: Disney World? “With an oxygen tank?!” A trip to meet a celebrity? She couldn’t think of anyone else she wanted to see, or meet. She flirted with the idea of a shopping spree at Sephora, since she loved eye shadow, nail polish and makeup brushes . . . But once she came up with the idea of meeting her Internet friends from Catitude irl (in real life), she was 100% focused. Though it was an unusual request, the folks at Make-A-Wish, helped by local “Friends of Esther,” did a great job at making her dreams come true.



from LINDSAY BALLANTYNE


I often asked Esther about her health, and seeing her regularly on video calls made me sure I knew what to expect. She warned me that she was in a wheelchair most always since she didn’t have much breathing strength, but there was no way to grasp the full scope of her condition until I saw her in person. It was a wake-up call, but also a privilege to help care for her basic needs even for such a short time. I said goodbye to Esther during a marathon recovery sleep session, feeling that was the last time I would see her in person and doubtful she would even remember it.





from KATIE TWYMAN


The weeks leading up to Esther’s Make-A-Wish trip were packed to the brim with planning. We were so excited to see each other, and we wanted to make sure we took advantage of every single second we had in each other’s presence. Hours were spent coming up with the most ridiculous ways to pass time together. We put a lot of them in a list, which contained the following ideas, among many others:

? go to waffle house at 3 a.m. and eat cheesy hash browns and read books aloud

? Speak in British accents at least 40% of the time

? LARPING IN HOTEL 4EVA

? Hugging Abe (& others not as important)

? BAGUETTE DUEL

? generally making Arka uncomfortable



Obviously not all of our ideas made very much sense, and ultimately only a few of the things on the list ended up happening. Once we were finally all gathered in Boston, it didn’t take long for us to realize that what we actually did was not nearly as important as the simple fact that we were doing it together. Hours were spent cuddling, gorging ourselves on candy, and laughing at nonsense. Mostly cuddling. And when I think about the trip, those are the memories that come to mind first. After all, that’s what the trip was for: spending time with people you love and finding little ways to show that you loved them.