Tag: Celebrate life

A little glimpse of Kai

I thought a little laughter would be good today. Parents of little boys or really parents of any toddlers/preschoolers can all understand the pre-dinner/bedtime wired/tired phase. This video shows pretty clearly what our evenings would like with Kai trying to figure out how to use all available furniture as his own jungle gym/adventure park. My favorite part is that while doing said shenanigans he says to himself “don’t fall down” – clearly showing me that yes, he heard what I said but, belly flopping onto the couch is a much better idea.


Someone once commented me to that Kai had such a tender heart and could be so kind to others. I admit, through the mom bias, I too thought he was such a kind soul, but also (through the other mom bias) knew his temper tantrum kicking and screaming side :-). But, the truth is, as Shawn and I are recalling our memories of Kai and trying to write them down I am struck by the many memories I have where Kai showed such tenderness to others – his baby sister, his friends, to Shawn and I. How amazing a spirit is that. What a great teacher in such a small little boy.

When I remembered that comment about a tender heart, I also feel like that word describes what my heart feels like right now, but in a different way than what was said about Kai. The veil of shock is starting to remove itself and our new reality is becoming clear – Kai went Home and we will miss him every single day of our time here on earth. The sharpness of this reality feels almost like a sting and at times I  wince because it’s like it somehow truly physically hurts – it hurts my tender heart. I wish he was just taking a nap right now (or having “quiet time” which meant jumping on his bed while singing songs in a whisper so that he was being “quiet”), I wish I could go to the grocery store with him (the Buddy Bucks store he called it… HEB shoppers you know what I mean :-), give him a bath, read books, fix him a snack, so so many things. And we’ve talked about how we grieve that he won’t be able to experience so many things here even though we know his experiences now are so much greater than anything here on earth. In these moments when the memories, the “I just wish…”, and the sadness seem almost suffocating, we’ve tried to get outside. Yesterday we sat out in the sun, and the absolutely amazing day God created, and God and Kai felt so close – they were close, I know it. And Maya, Shawn and I smiled together.kai and maya hands

And yes, it’s not the same – our hearts will always ache in pain as long as we draw breath in, but maybe our lesson right now is that while our hearts may be tender to us, we can transform that pain and that definition of “tender” to be more like our little guy –  to be kind and tender hearted to others. I think the other thing I’ve realized through this is just how.much.suffering. there is in this broken world. I would get overwhelmed with this in the past, but it is even more real to me now. But, then I feel a little crazy because I can see light now because I know love and community and hope can help overcome each of those situations. I think of each one of you who stepped in to walk with us and while it couldn’t take away the pain and suffering, it for darn sure showed that Love won this fight, hands down, no question.

I know each of us have parts of our heart that have been hurt through our experiences in life, and sometimes it’s easier to harden those parts or hide them or let them become too raw – but maybe it’s those parts that help us more easily reach out to each other, bringing more good than hurt to the world. I don’t quite know how to do this myself yet, but I’m keeping these memories of the unconditional kindness I’ve seen in Kai, in friends, in strangers and I’m hoping that I will turn towards that direction when the pain stings and I thank all of you who have been teachers to us in how to keep moving forward day by day as we navigate our new normal. Thank you so much for your kindness and tender hearts.

Kai’s Choo Choo Crew

In remembrance of Kai, the plan for today was to treat kiddos to rides on the Zephyr train at Zilker Park. The weather didn’t exact cooperate, so the train did not run, but that didn’t stop many of us from going down to the train and staying somewhat dry (yet cold) under the covered area. Thank you so much to those of you that joined us, many of who drove in from Houston or Dallas!53422918ac7ee9e4232ea4d2

Despite the cold and the rain, the kiddos there seemed to enjoy the train even though it was stationary, which was really all we needed.

And thanks to everybody out there in Kai’s Choo Choo Crew posting pics of your t-shirts! We’re blessed to have so many who care so much.

Be on the lookout for a new day and time to reconvene at the Zephyr. Thanks to great friends who put this together, we’ll plan to do this annually.

We missed sitting with you on the train today, buddy, but you were still there with us.

zilker train try 1

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!


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.


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.