(For Ben and Amber)
It's rare to see a superhero,
But when you do, you know
Not because of a cape or a costume,
But because it's hard to let go.
He brightens your day,
And he makes you smile
His jokes and laughter come in a wide array,
And each one you could keep in a file.
Occasionally he drives you insane,
Doing anything to stop you from going down the grocery aisle,
But that's okay,
Because each step brings you closer to a new mile.
It hurts you to see him in pain,
And some days the last thing that you worry about is a laundry pile.
How do I win this trial?
You want to hold him through the fight,
But he's already asleep so you gently close the door,
While he rests, you lie awake in bed each night
Wondering what's in store
Months go by and he doesn't feel better,
And you haven't stopped worrying one bit,
You take one last picture of him in his Christmas sweater,
He looks worse than you ever hoped to admit.
Spring comes around,
And you think that this is it,
But he's a fighter;
He still has some tools left in his kit.
Summer rolls around;
The end looks nigh.
Too soon he'll be a star
Shining in the night sky.
You sit down and hold him in your arms.
You sit there and wonder what life will be like without his charm.
He closes his eyes and falls alseep.
Only this time, he has entered a new keep.
He has lost the final battle with death,
But at least you can envision his little smile.
Because although he has taken his last breath,
He's the superhero that will always make your life worthwhile.
-written by Daniel Skora
The poem I shared above was written by a Ball State Student. He mailed it to us just before Wayland's birthday this past October. With it, he sent us a letter and in his letter he wrote: "I decided to write a poem about Wayland since his birthday is coming soon...I want to let you know that he's still in many of our hearts, and he won't be forgotten." I had set this poem aside on my bedside to keep for one of those days I just needed "a little extra something." I am finshing up a yoga teacher training course and we often talk about "ripples." I have been taught and believe all of us will start a ripple effect by our lives. Our life can indeed grow and expand to affect so many more people than we ever imagined. My classmates and instructors are so loving, they often express and remind me of the ripples that Wayland has started. I remembered this poem that Daniel wrote for us and it assured me again that Wayland indeed has left ripples in this world. It is such a beautiful poem and it is amazing that Wayland was able to touch the life of a student who really didn't know him, but was inspired by him just the same.
As we are on about to approach the "dawn" of spring in the next several weeks, my husband and I as well as dozens of volunteers are furvently working to prepare for another ripple effect from Wayland. Way back when Wayland was recieving treatments at Stanford, Wayland's neuro-oncologist made the fun connection that Andrew Luck, NFL quarterback, went to School at Stanford and was now playing for Indianapolis and we, who were from Indianapolis, was seeking treatment for Wayland at Stanford. We then dreamed how fun it would be to meet Andrew or ask him to help in a fundraiser for DIPG research. Well, last spring, we asked the question and I guess you can say our dreams came true and Andrew Luck has agreed to take part in our first event as a foundation, "The Play Like a Warrior Football Clinic and Dance Camp." We are proud to officially announce this fundraiser, which will take place this spring on Sunday, May 3, from 8 am - 4:30 pm at The Incrediplex in Indianapolis. You can find the details for the event on our website under the "Football Camp" tab. Please take a look and come and join us if you can. There is going to be something there for everyone; a footbal camp and dance camp for younger children, a chance to ask Andrew Luck a question or recieve a pass from him, arcade games and bowling, a silent auciton. It is a day of fun, but also a day to be a Warrior for those still fighting this awful disease. You can make a difference. Even if you can't make it, there are many ways to still contribute. You can donate to our Packard page (found under the "Donations" tab on our website). That money will go directy to DIPG research. (We are keeping this available until we are approved for our 501(c)3 status.) You can offer an item for the silent auciton or make a donation to our Foundation, The Wayland Villars DIPG Foundation. Or you can spread the word about the event to someone else you know. If you have questions or want to contribute, email us at firstname.lastname@example.org. Or you can visit our event Facebook page, Play Like a Warrior Football Clinic and Dance Camp. As we say earlier on our website, Wayland left us feeling broken, but not defeated. We saw the terrible suffering that he endured due to the nasty disease we call DIPG. Therefore we want to fight so someday parents can hope for the survival of the precious child they hold in there arms. That is our new slogan, "Offering Hope." There is hope for the families still affected by DIPG and we are here to fight for them. We are here to fight, all because of Wayland.
Wayland, you are a superhero and you have made our lives so "worthwhile." We love you so.
Battling from Indy,
Amber, always Wayland's Mommy