The Frailty of Fair

We’ve talked a great deal about the concept of fair of late. An odd word, fair. If you look it up in the dictionary you will find it has nearly seven times as many definitions as it has letters. The one that pertains to our conversation is:

conforming with the established rules.

Children all over the world cry daily, “That’s not fair!” I have a daughter who has a justice meter and feels that everything should line up equally. If things do not, she will protest the unfairness of the situation. She gets that from my lovely wife whose righteous indignation will rise at anything wrongfully appropriated. Things must be fair.

But they aren’t, are they?

Fair is a myth. Oh, we try. We make rules and establish laws to make things as fair as humanly possible. But there is something bigger at play. There is an overarching fairness that we can’t comprehend. When we put things in their cosmic proportion, we can make things as equitable as we want to and they will never be fair – because we are not in control.

Tell the orderly little ant about fairness when he is marching in the line, doing his job and he watches fifteen of his co-laborers get stepped on by the careless human. Sometimes, I feel like that ant. I’ve seen the footfall of God land on someone I love. His concept of fair is different than mine.

It isn’t fair that Kylie got cancer. No one can explain how it happened. They told us that somewhere along the line a gene mutated and boom, a tumor appeared. Random. It isn’t fair that she started doing so well only to fall victim to the silent spread of the disease. Likewise unfair is that she had ten tortuous months of treatment.

While she was in treatment, she met a housekeeper in the hospital who she loved. Ms. Nicki made her smile. Whenever Nicki came in to do her job, she made it a point to talk to Kylie, encourage her, and always seemed to find a way to make her laugh. She was sunshine on many awful cloudy days. Early on, Nicki and I started doing a “Going Home” dance together on discharge days. I assure you, she was much a better dancer than me and Kylie always wanted to find her before we left so she wouldn’t have to endure my solo.

 

Kylie with her friend Ms. Nicki

Kylie with her friend Ms. Nicki

 

On a trip with her children recently, Nicki’s car was struck by two cars going in excess of one hundred miles an hour. Two of her children were ejected from the car and killed on the scene. The third died at the hospital a few days later. In an instant, the wonderful Ms. Nicki lost the three things most precious to her because of someone else’s carelessness. Where is fair?

Death is never fair – be it instantly or after a long illness. It leaves too much pain and too many jagged edges.

My heart cries out for Nicki – for her loss, her pain. While I am grieving my own loss, I cannot imagine hers. I pray for a peace that seems as unattainable as fairness in this broken place.

I wish I could make things fair. I never will be able to, neither will you. The only thing we can do is love those we are tied to as long as we are here and as long as they are here with us.

 

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We want to help this woman that Kylie loved. I can attest that funerals are expensive. Here is a link to an account that will help Nicki with that expense.

 Coleman Angels Fund

Kylie’s birthday was on the 24th. Would you give $24 to help Nicki? We would like to help free her from that tangible burden while she wrestles with her own emotional and physical healing.

 

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A New Kind of #NoFilter

I learn things about modern culture from the internet. Most of the time, I learn them just after they are passé to the younger generation. My kids laugh at me when I have a stunning revelation that has run its course and been discarded by them and all of their friends. I feel like I’m miles behind my teenagers but slightly ahead of my peers, so I’m okay with that.

I just figured out what those crazy kids meant by #NoFilter. It is kind of a way of saying, “I took this picture and you can’t improve upon it by manipulating it with the digital filters on your phone.” In some respects, they are realizing the beauty of nature over technology. If they pursued that thread, they might drop the whole thing because that would mean unplugging for a  while to realize that God made some pretty spectacular stuff you don’t need electronics to enjoy. Teenagers aren’t ready for that.

I don’t know much about filters or photography. I do follow a photography blog I greatly enjoy, Images by T. Dashfield. Often the subjects are close up flowers and insects that are mind-blowing. The pictures sometimes list camera specifications, f-stops, iso settings, and other things that mean something to those much smarter than me. I just like the pictures.

For today, I wanted to share my own #NoFilter:

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Isn’t that lovely? We were invited to stay at a place in the mountains where that was the scene off of the back porch. When I see something like that, I can’t help ponder the majesty of nature and its creator. I think of history – how did railroad companies cut tracks through these hills so long ago? How is it possible that the union army marched over those peaks with cannons and supplies?

I also think of tragedy. Specifically my own personal tragedy that I discovered in the wee hours of the morning when I woke up ready to face the day. I found that #Nofilter can mean other things.

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NOOOOOOOOOO!

My cry could be heard piercing the darkness as it rang through those lovely mountains.

 

To the best of my knowledge (and Google Maps), the one place where I could find coffee filters is marked with a red arrow.

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The #NoFilter scene I admired previously brought me only pain and heartache now. Adaption necessary, I had options…

Paper towels proved too flimsy.

I wasn’t rude enough to use linens in the cabin loaned to us nor brave enough to damage anything belonging to my lovely wife.

T-shirts? I only brought enough to get me through the time away.

Socks proved too thick.

However, while I am a light packer who once shoved everything for a two day business trip into a laptop bag, I did happen bring extra of one item that in desperation, I ripped up to use as an emergency coffee filter. It was one of my favorite pairs, but it was clean and available – perfect for such an emergency.

I am not proud of how I came to enjoy coffee that morning and you probably won’t see this brand of filters on the shelves of supermarkets anytime soon. But you never know, maybe I’m ahead of my kids on a trend for once.

How You Can Help When There is Nothing to Say

These final thoughts didn’t necessarily fit under what to say or what not to say, but I think there is some worthwhile information that might help you tangibly support a friend whose child has been diagnosed with cancer and possibly other long term illnesses. I present them in no specific order:

 

Every child going through treatment for cancer should have an iPad. I know it sounds pretty crazy and so first-world, but I don’t know how Kylie would have gotten through the boring days in the hospital without it. (disclaimer: I do not work for Apple.)

 

Texting was the best way to ensure a message got to us. In the hospital, our phones were always on silent to help her rest and we rarely picked up a call. We both probably still have unheard voicemails from last April.

 

In the early days, we weren’t very keen on surprise visits because Kylie’s pain and sickness were extremely unpredictable. I’m sure that varies patient to patient, but we preferred a text first.

 

Help with siblings. This falls under the action part of love, but it spoke volumes to us in the early stages of diagnosis and treatment. It was so hard to balance our need to be with Kylie with the needs of her sisters. Friends grabbed them and took them to dinner, movies, and sleepovers. It was a great relief to know they were not only provided for, but having fun as well.

 

Most families going through treatment need some level financial support or have a fear of fiscal unknown. If you can help, that takes an added pressure off. It doesn’t seem like much, but a card with a $20 bill in it makes you feel better when the rest of the mail is bills.

 

We were fortunate to have good insurance, but the costs that seemed to get very large were prescriptions and gas. If you prefer not to give cash, gas cards or gift cards to grocery stores with a pharmacy are particularly helpful. We also got a lot of restaurant gift cards and they were wonderful to have on hand for our other children – who could use them when we had long days at the hospital.

 

There is a large community of support for children fighting cancer and Kylie received things in the mail nearly every day. If your heart goes out to a cancer patient and you want to help, please understand that you will most likely never receive a thank you. We are good Southerners and it went against every bit of manners we’ve been taught, but we were just too overwhelmed to send out thank you cards.

 

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We read everything – every note, letter, and comment on Caringbridge, Facebook, and Instagram. I assure you that your words matter and comfort. Also, if you are letting kids send letters to a cancer patient, proof-read them first. Kylie got a couple from children who said things like, “it won’t be so bad if you die because you’ll be with Jesus.” We knew they were sincerely hoping to comfort Kylie, but that was not what she needed to hear. We screened all her mail after that.

 

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I hope some of this has been helpful. I know these don’t pertain to every family or patient as I can only speak to our situation. We had incredible support throughout her treatment and we are grateful for it. I pray every family facing this long, terrible battle has friends to lean on. Some days, friendship and encouragement is the only way we made it through.

 

Feel free to comment or email with any thoughts, questions, or suggestions.

 

What to Say When There is Nothing to Say

As a victim of a poor memory, I remember only flashes of our first weeks in the hospital. Visits, conversations, tears, rooms, tests, scans – they all run together in my cloudy mind. There is, however, one event I recall with perfect clarity.

He texted to ask if it was okay if he stopped in on his way home from work. I wasn’t sure we needed a visitor, but Kylie agreed. Freshly diagnosed with Ewing’s Sarcoma, we were in the pediatric cancer wing where Kylie had begun her first round of chemo. By the time he arrived, our patient was sleeping and I got up to greet him quietly. I remember he put his backpack against the wall and opened his arms to hug me.

 

I am not a hugger…

This is weird…

He’s here for Kylie, not me…

Do I hafta???  Why????

I’m okay, I don’t need this…

Not a word was spoken and I promptly fell apart in his embrace. I cried like I had never cried in my life. He just held on for the ride.

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What my friend Steve gave me that day was the very essence of what to say when there is nothing to say:

Love

 

Love is all there is. It can speak volumes without an audible syllable. It can be felt in a quiet room where words aren’t welcome. It might be simplistic, but love is all that can break through the hard shell of pain and fear after a parent has heard the dreadful phrase, “your child has cancer.”

Let me say again, there are no magic words that instantly sooth, but here are some things that resonated with me when Kylie was first diagnosed:

1. An expression of regret – “This really sucks” (or “stinks” for the less crass. But I assure you, it does suck!)

2. A profession of love and friendship. How do you say that? Um… “I love you.” For those uncomfortable with the ever-personal “I”, you can always lean on the family crutch for support and say, “We love you guys.”

3. Presence. “I’m here.” There are few positives in having a child with cancer, but one is that your calls rarely go to voicemail. Availability can be sensed. I knew very little in those traumatic first weeks, but I knew who was there for me, and I called on them when needed.

4. A promise of endurance. There is a long road ahead of the family. Like anything, many people with good intentions begin the fight full of fervor but life gets in the way. No judgments here, I get that. A promise such as, “I am here today, tomorrow, and in six months,” means a lot when given sincerely.

5. A specific offer of assistance. Sometimes, this isn’t even verbal. If you see a need, meet it.

  • We once came home to find a huge painted pot full of yellow flowers on our porch.
  • Sometimes our lawn just got mowed.
  • A woman who bakes incredible cookies would just stash dozens in our mailbox without a word.
  • Friends organized meal calendars, ballet rides, and school carpools for our other daughters.

This is the action side of love. Love does! Love molds unique talents into lavish gifts. Doing love doesn’t have to be grandiose or expensive and is often best when anonymous.

6. An assurance of prayer and/or positive thoughts. To know that my little girl was on the forefront of people’s minds was huge. Knowing that children included Kylie in their nightly bedtime prayers was humbling – especially when my prayers couldn’t get past a groan and balled fist.

 

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Nobody knows what to say to the parents of a child diagnosed with cancer. We didn’t know what to say or what we wanted to hear – it was uncharted territory we’d rather not have explored. I assure you we were glad to not be travelling alone. If you have friends who find themselves on this heartbreaking voyage, I would urge you not to be afraid to approach them. Just step out in love, the right words will come. You might start with a silent hug. Even the bristliest of us cancer parents could use a hug from time to time.

The End of Why

She came to me as I awoke this morning. We greeted many days together while the others slept, my morning flower and me. Kylie was my only early riser and a sweet little sunrise companion. She often invades my thoughts in that twilight of sleep when the mind isn’t quite sure if it is still at rest or engaged for the day – could reality be that the sickness was the dream and she is soon to beg me for a sip of coffee while we whisper to let the rest sleep?

No, it isn’t the case. I felt her clearly this Easter morn as I lay in a strange bed. Through the generosity of friends, we escaped the routine of the holiday where the egg hunts, chocolate bunnies, baskets, and church in frilly dresses leave too big a hole. Too hard. So here I sit on a porch overlooking a quiet lake as the sun rises over the water. My coffee is mine, although I’d give anything for her to mooch it. Why’s as endless as the waves lapping the shore are my only company.

Why did you give her just to take her away?

Why would you let her suffer? Why not take her quietly in the night instead?

Why couldn’t we have had one more week to enjoy the trip she yearned for?

Why? Why? Why?

 

Why is a bottomless hole.

 

I am sure the disciples fell into that hole. As they scattered throughout the city afraid for their lives, it had to be their preeminent question. I wonder what their why’s were. I can guess. Why didn’t you fight? Why did you lead us on? Why did I leave my family and career for this? Why?

I have learned that God is not often inclined to answer the question why.

One day, when I get to heaven, I can’t wait to ask him. It’s the very first thing I’ll do…

But wait. Hold on. The why is in the way.

When I get to see Jesus face to face, it will be because of the very atoning sacrifice that we celebrate today. I will see him only because of the death and resurrection that drove those questioning disciples into hiding. When I see him, there will be a little girl with long brown hair and a perfect body holding his hand waiting to introduce me to him. In her other hand she might hold the most sumptuous cup of coffee that she’s been excited to share with me.

Why won’t matter.

Why will have died.

Why is but a temporary distraction.

Why stayed in the tomb.

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Whatever your questions today, praise God that through his Son, why only matters a little while.