Missing Kylie

I have been absent from posting for a few weeks. The reason is that Kylie took a sudden turn for the worse and left her battered body on February 13th. I miss her every day.

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There are so many questions and very few answers. My lovely wife and I had to plan out her funeral, which was truly heartbreaking. During the discussion, I felt compelled to speak at the memorial because I knew that Kylie would never want anyone to waver in their faith because of her passing. So I did. It was one of the hardest things I have ever done, but I made it through.

I would like to share the video with you. If you would rather read the text, it is at the bottom of the blog’s Kylie page.

There is no formula to recovering from this type of thing, but I think we are doing as well as can be expected. We intend to grieve well and then get on with the two charges our little girl gave us – Mommy has to take care of her kitten and I got the easy one: cure childhood cancer. Her social media sites are exploding so she is handing us a platform for it, which we intend to use. Right now, we have no idea how… But we will figure it out because Kylie told us to.

 

 

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.

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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