Last weekend we lost a beloved family member, someone I’ve been so blessed to get to know better during the past years through Facebook and emails. I’m copying an email I sent to my writers’ group friends from ANWA, because my emotions were freshest then.
“I’m hoping it was peaceful and that she didn’t feel pain or discomfort during her last hours. She defied her doctors’ predictions and lived over a month past the time they’d given her. She lived to celebrate one last Thanksgiving, a holiday that was always very special to our extended family. Until my grandpa passed away, we used to have reunions with dozens of the Baker and Clark clan attending, and we have so many precious memories from Thanksgivings past.
“I’m crying because I’ll miss my sweet cousin and her amazing strength and inspiration so much. But I imagine her running now, free from pain, the wheelchair, the trach that took her voice, and with the beautiful thick blonde Rapunzel braids she had as a child. Standing taller now than the 3′ 2” Morquio syndrome had limited her to, with bones that are strong and not deformed from her condition. I hope she’s having a wonderful reunion with my grandpa, grandma, my dad, and other members of our family who have gone on before us.
“We’re still here, continuing with the same old struggles and challenges of daily life. But her trial is over, and I can’t even imagine the great joy she must feel to finally be free.”
Not only did Danette live in almost constant pain, but she had to deal with repeated surgeries, setbacks, and the permanent loss of her voice from anesthesia complications over a decade ago. She never complained about anything. She was always upbeat and funny when we kidded around on Facebook. She was a mentor to so many families with Morquio and other dwarfism conditions, she built up peoples’ faith, and was an active participant in programs that donated wheelchairs and other items needed for people with disabilities.
I knew she loved scrapbooking, but only after her passing did I find out that she ate two Oreos a day (three if her nurses spoiled her), and 7 peanut M&Ms before bed–a sweet little slice of life I wish I’d known before.
I learned so much from her about not only accepting the challenges you’ve been given in life, but embracing them and making the best out of what you have. About turning your setbacks into blessings. So many people complain about problems that are trivial, even superficial, in comparison. Any time I feel like griping about some minor catastrophe or inconvenience, I think about Danette and wonder if my little problem is even worth complaining about.