Thursday, January 6, 2011

The Bigger Picture

On December 31, a distant relative of my husband’s passed away. At 112 years old, she was the oldest person in Florida, and the 21st oldest person in the world. She remained sharp as a tack, active, and funny to the very end. It was not, in fact, old age that even got her. It was pneumonia.

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.

Incredibly, her parents are still grateful. Grateful for friends, family, and the health of their other two daughters. Grateful for the hospital staff and the technology that keeps Delaney alive. Grateful to have Delaney in their lives.

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.]

17 comments:

  1. Wow! My grandma will be 100 on March 3rd, she is amazing!

    My thoughts and prayers are with Delaney and her family.

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  2. Oh, the sweet baby! Such an angel. It makes my heart hurt just reading about her, I'm in tears as I type.

    I too, am grateful for the problems I have. It takes but a minute to listen to the problems of others, and realize how good I have it. Delaney's parents are an inspiration, just by being who they are.. the whole "keep on keeping on".

    About your relative~ I love listening to people in their 80s, 90s, 100s speak, or reading their accounts about their childhoods, the things they have seen and done and how the world has changed. What a blessing to pass on your experiences of living through a century.

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  3. Sometimes it is a good thing to stop, just fully stop and realize just how lucky you are.

    M

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  4. And I think I have problems... makes me ashamed of my whining... thanks for putting things in perspective!

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  5. Me too, Life in the mom lane.

    I did not make any resolutions this year, but I think I need to make one to be more grateful for my blessings. I am going to try to do better.

    God bless Delaney and her family.

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  6. My son had to have 3 surgeries in 3 years on his ears alone, and then to top it off he developed appendicitis and had to have it removed. You can imagine how upsetting that was. Well, after his appendectomy they had to put him in the PICU to recover because the other ward was full. In the PICU I got to see firsthand what parents with REALLY sick kids had to go through. I found myself so grateful that my guy only had ear problems and a little appendicitis! That really put things in perspective for me.

    My prayers go out to Delaney and her family.

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  7. My son has a very severe case of epilepsy, at times uncontrolled with upwards of 50 seizures a day. Even at his most severe I was always grateful to enter the doors at the medical building where his doctor was located and turn left. You see if you turned right you were heading into the Specialty Center for Children's Cancer. I would also say it out loud, every time so my son could hear "grateful to be turning left" (of course I made sure no one else heard).

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  8. I felt bad every time I stepped out of my sons NICU room, I was so thankful he just needed IV antibiotics and and to be under the bililight while the parents in the room across from us were losing their baby. Its things like this that put everything in perspective and make us so greatful. People like Delaney's parents are amazing, just as you are, prayers for all the moms and dads out there whether they are going through "normal" trials of parenthood or far worse. Thank you for your posts!

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  9. I read about her death in the paper in Tallahassee, Florida and told my kids about her! What a small world it is...thanks for the reminder of how life should be lived.

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  10. Thanks a lot, Hooker. Now I'm crying. This was beautifully written. Thank you for this.

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  11. The story about Mrs. Ponder made me smile, and think of my great gram. She didn't live so long, but she lived an amazing life, big momma of her house with 9 kids, she was a cotton picker and the rock of her family. Theres just something about Southern Women I guess, a hearty breed! :)

    Delaney will be in my prayers, and a million and 6 positive thoughts will go her way. Hope you'll be able to keep us posted!

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  12. What a wonderful post. Thank you for making me cry and giving me a nice swift kick in the perspective.

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  13. I love old people. And little people. And the strong people who care for them both. Thx for the perspective, but know pain is pain, and no one can stand to see their loved ones hurt: whether diaper rash or leukemia. It hurts.

    ps. when i grow up, i want to be Onie.

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  14. Mrs Ponder sounds like an amazing woman to have known. Very inspiring. Delaney will be in my prayers, not because she has an awesome name (same as my daughter) but because she has so much to deal with in her beautiful, tiny young life. My heart goes out to her family as well. <3

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  15. I think everyone should know a child like Delaney...I have such a child in my life that I am privileged to know named Sam. You will never look at your life the same when you've seen an amazing child like this go through the things they have to go through.

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  16. That Onie is something else. She looked about the same age as my grandmother when she passed away and she was only 84! She was a hottie for 110 (in the video).

    As to Delaney, she will be in prayers. And as a parent, in my nightmares. I cannot imagine having to see your child suffer. I will pray for her, that somehow doctors can find a way to make her better, or at least help her be more comfortable. And I will pray for her parents to have the enormous amount of strength it must take watch their angel go through that.

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