Thursday, January 6, 2011
The Bigger Picture
This was a woman who was so hardy, that back when she was a young 95 or so, she got hit by a car. As a pedestrian. She went out for her daily walk around the nursing home grounds, and another resident backed his geezermobile right into her.
She was fine.
Also? She pointed out that if she had ever lost all the weight her doctors wanted to, she would have snapped like a twig.
This was a woman who credited her longevity to her faith in God, and also to years of having coffee and two doughnuts for breakfast every morning. At her 112th birthday party in September, she enjoyed that chocolate cake.
She enjoyed life. She began losing her sight at age 80, but still went on cruises with my mother-in-law and played bridge with giant-print cards well into her 90s. When she eventually went blind, she could recognize people by voice.
She didn’t sweat the small stuff, but recognized what was truly important. She voted in every presidential election from 1920, the first year women could vote, to 2008, when she was the oldest person in America to go to the polls. For 112 years, she was grateful for what she had: friends, family, health.
I never met this woman, but I followed her adventures through family stories, and countless newspaper and magazine articles about her. I would think about her when people would say to me, “I don’t know how you do it.” I’d get that comment a lot when the kids’ allergies were really bad and I was cooking four different dinners every night. When I was constantly going to Children’s Hospital of Philadelphia for some appointment or other: GI, Cardiology, Dermatology, Ophthalmology, Orthopedics, Allergy.
“I don’t know how you do it.”
You know what? Back then, the Allergy and Immunology Department was on the same floor as CHOP’s Pain Management Center.
Do you have any idea how grateful I was, every single time I stepped off that elevator, that I was heading to Allergy and not the Pain Management Center? I cannot imagine the agony of watching your child suffer through chronic pain. My kids’ bleeding diaper rashes made me weep. The thought of bone-deep pain? Makes me dizzy.
Good friends of mine are watching their tiny daughter Delaney suffer through that kind of pain. She has mitochondrial disease, and is currently on the kind of pain killer usually reserved for post-surgical pain. Mitochondria are the parts of your cells that make energy. Her mitochondria don’t work properly, so she’s always running on low-battery mode. She uses a wheelchair or leg braces, wears glasses, and needs almost constant therapies. Of course, their insurance doesn’t cover nearly enough of this.
As I write this, Delaney has been in the hospital (this time) for six days. She already had a G-tube for feeds, but had a GJ tube inserted yesterday. (A GJ tube delivers some nutrition to the stomach, and some directly to the small intestine.) Even the tiniest amount of formula delivered this way is still making her throw up.
Seriously? It just doesn't seem fair to throw up when you didn't get to eat the food in the fist place.
Oh, and bonus: Delaney picked up RSV while in the hospital. Yeah, good times. RSV has added complications with Delaney, because there's only so much cell energy that she has. She basically can't fight off germs and process food at the same time. While her GI system rests, she's being put on IV nutrition.
I have so much to be grateful for, including the people who remind me to feel grateful.
For a video of Onie Ponder, who lived to be 112, click here. I aspire to her awesomeness.
To read more about Delaney, click here. If you’re in a generous mood, you can chip in any small amount to help out with her medical expenses. If you’re a praying person, your prayers are greatly appreciated by Delaney's family.
To read more about mitochondrial disease, or to find support, please see the Mito Action website.
[Note: Delaney's first name, photos, and information shared here with the permission of her parents.]