Tag: ATRT

posts related to brain cancer or ATRT

The Brave Little Soul Story

A number of you have been asking about the story that was read by Kai’s teachers at his celebration and I’m so sorry I’ve been meaning to post it on here sooner than now! I was sent this story by a friend from primary school and it definitely struck a chord with us. I’m not sure the background on it or anything, but I think it’s a pretty beautiful story.

The Brave Little Soul by John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”
God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”
The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity.”
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”
God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”
God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”
Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

200 kilometers

austin head for the cure 2014
Team Kai at Central Texas Head for the Cure 2014

Earlier this month we had no idea that the Head for the Cure 5K would be in Austin. After Kai’s diagnosis, we became aware of the 5K, but assumed that we would be in treatment somewhere and would be unable to join. It pains me that things all happened so quickly and here we are, able to participate in the HFTC event this year, yet Kai’s physical presence was not with us.

There was a tremendous turnout this morning. Team Kai consisted of no less than 40 members, collectively putting in over 200 kilometers! While some of us trailed at the back, pushing little ones in strollers, Team Kai featured 3 of the top 11 runners! Chris G, Chris M, and Conor all posted blistering paces. (We now have a HFTC medal generously donated to Kai.) There was even a medal earned in the under 10 age group!

http://www.mychiptime.com/searchevent.php?id=8198

Chicago Altera group race
Amazing group of Altera employees and their families running their own race in honor of Kai!

In addition, these amazing people from work (in Chicago) organized their own 5K while we participated in the Head for the Cure 5K in Austin – we can add another 150 kilometers to Team Kai! While it certainly looks colder there, at least the sun was out. Sun’s out, Kai’s out!

This morning was tough without Kai being there. Still, I felt him with us. When the sun broke through to warm us from the chilly morning we made sure to tell Maya: “Sun’s out, Kai’s out!”. maya at atx head for the cure 2014I was excited to see so many people supporting brain cancer research and supporting both survivors and victims, yet at the same time it was saddening. Writing a message to Kai on a wall at the event brought tears to my eyes. Walking with Maya in the stroller brought tears to my eyes since Kai always had the stroller position while Maya snuggled in an Ergo up against mom. Seeing a distant colleague at the same event because he also has a connection to brain cancer brought tears to my eyes. I never realized that you don’t have to go far in the circle of people that you know before you find somebody with a personal connection to brain cancer (let alone cancer in general).

We all missed Kai dearly today but are glad that events like this are around to raise awareness and funds. It was a beautiful morning and taking the time to walk the course was calming. It was a rare opportunity to speak with friends old and new. Maya was able to sport her Kai’s Choo Choo Crew t-shirt and even made a new friend when she met Pierce. Maya isn’t a happy camper when she misses her nap and Pierce was able to get her to smile, which always turns out to be contagious.

I am thankful that I felt Kai today, even though I couldn’t physically hug him. Love you, buddy.

-Shawn

P.S. – How perfect is it that the 5K was held at Camp Mabry? Kai would always call out “airplane” or “helicopter” whenever we drove past Camp Mabry – there are some fighter planes and helicopters on display at the edge of the Camp such that traffic on the highway drives right past them. No doubt he would have loved running within feet of them today.

Thank you for Celebrating Kai!

Admittedly, I think Shawn and I are at a loss for words today. In all honesty, this morning Shawn and I were on our knees wondering if we could even do this – how do you go to a party you never thought you’d have to host? But, then we thought about Kai – this is his party and we are given the opportunity to honor him and celebrate him, so we prayed for strength to be joyful and remember his life and smile and amazing spirit. And God answered. He created a celebration that we could never have imagined and we are just absolutely overwhelmed with how many of you came to celebrate with us from near and far and the incredible support of so many of you who helped make Kai’s party so wonderful. A friend commented to us that during the celebration she heard all of these joyful noises like at a kid’s party – she saw people smiling and heard the kiddos rustling the balloons or drawing on paper and that makes Shawn and I smile. We hope/imagine that Kai was doing something similar and enjoying running around with his Thomas or Elmo balloon and making grand circles on the big sheets of paper. Kai Kai, we love you and we celebrate you today. God, thank you for the amazing life you created in Kai to share with all of us, we are forever grateful and so thankful for that joy. Thank you again to all of you for helping us along on this journey.

Thank you Doug and Amanda for creating this beautiful video celebrating Kai’s life.

Celebration for Kai – more details to follow

Thank you everyone for your prayers, encouragement, empathy, warmness, messages, food, company, hugs, tributes, and so much more. We would not be able to go through this without you and just thank you so incredibly much. Thank you for being so generous with your hearts and spirit.kai in his car seat april 2013

We wanted to let you know that we will be holding a celebration for Kai this Monday, March 24 most likely at 1:45/2:00 ish in the afternoon. We are finalizing a few details and will post the exact information later tonight. We do want to let everyone know that this will be a celebration of life, so this will be kid-friendly with ways that Kai’s friends can help celebrate him and remember him if they wish.

Thank you again for all of your support and we’ll post more information tonight.