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.

*     *     *

 

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.

 

image

 

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.

Focus on Positive

When life throws you down a crooked track, hold close your family, latch onto new friends, throw up your hands and find something to smile about.

IMG_0177

While 2014 was definitely a crooked track for us, I want to close it with a look to the good. Shortly after our diagnosis, I had a friend reach out to me amidst his own health crisis. My advice to him was, “Hear the negative, focus on the positive and know that God has both covered.”

Good advice? I think so – but much easier said than done. This world screams negative. We are bombarded with the bad. The nightly news covers everything wrong with our world first and longest before they throw in one human interest story just before saying good night. (If you missed Kylie on the news, you can watch it HERE)

While sifting through the ruins of this broken world, how do we see what is good? I have seen a lot of things in my 47 years. To borrow the movie title, I’ve seen the good, the bad, and the ugly. I have driven a man out of the slum of Port ‘au Prince, Haiti and watched as he was given the keys to his new home. I have been fortunate enough to help put a roof on a hut in Swaziland for a family decimated by HIV. Beauty plucked from ugly, good snatched from bad. Both started with a choice to engage.

Despite my experiences, never in my life have I seen the good side of humanity more than from the day Kylie was diagnosed with cancer. The flood of well-wishes, prayers, and support for our family has been as overwhelming as the diagnosis itself. When you hear the words, “Your child has cancer,” the temptation is to curl up in the fetal position, shut out the world and cry. When I was at my weakest, I found an abundance of arms to hold me.

Friends, family, our school and church rallied to our side.

The nurses, doctors, childlife specialists, and staff of the Aflac Cancer Center at Children’s Healthcare of Atlanta became dear partners in this journey. We also found great care at Levine Children’s Hospital in Charlotte.

Organizations came alongside to help navigate and let us know we aren’t alone: 1 Million for Anna, Make-A-Wish, Cure Childhood Cancer, The Truth 365, Rally Foundation, Melodic Caring Project, The Jesse Rees Foundation, Along Comes Hope, 3/32 Foundation, Blessed Beauty, Open Hands Overflowing Hearts, Kingdom Kids, Lily’s Run.

We have built a network of people who pray faithfully for Kylie. To be totally honest, I admit there are times when I cannot lift a word to heaven. Maybe a grunt, maybe an angry shake of the fist. Without a doubt, I know there are many people praying for my little girl when I can’t. That is incredibly humbling.

Then there is encouragement and love. Kylie gets cards and letters daily. At least a dozen young ladies have donated their hair in Kylie’s honor. People all across the country and literally around the world have been #SmileyForKylie. As of today, 87 countries have done it. Grown men have written it on their bald heads.

Between Twitter, Instagram, and Facebook, we have received over 10,000 smiling selfies for Kylie. Unreal. We have gotten them from celebrities, athletes, and Kylie’s beloved Broadway performers. Idina Menzel made a video. Kristin Chenoweth made two pics and talked about her on a radio show. Laura Osnes posted a word of encouragement to her. She got a box of Broadway treats from Hunter Foster. She had pics from 9 out of 12 musicals nominated for Tony Awards, and the cast of her favorite show, Aladdin, have reached out to her over and over again. Sometimes we can trace the web that led to the picture, but most of the time we have no idea how they happen – we have no line to these people. It’s just good. And it is out there – making a choice to engage with our little girl in a time when she so desperately needs it. A thank you will never be enough, but all I can offer.

Regardless of your view of the Bible, Philippians 4:8 gives us sage advice:

“Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.”

I’ll not be able to change everyone’s mind. You can remain a cynic if you choose to. But the things I have experienced in 2014 prove to me that there is good in this world. I choose to think about such things – it is what has kept me going.

In 2015, we look forward to hearing the words: No Evidence of Disease and watching Kylie resume a normal life. That will be something worth throwing up our hands and smiling about.

 

Happy New Year from Portsong, your humble mayor & Kylie