Miss you

I’m not sure why I’m posting this here. I sat down to write a few notes to Kai…for myself…and here I am copying it here. Feel free to skip this and go straight to a new video that we’ll post.


I love you so much. I miss you so much. I am crushed that you are not here to enjoy life here as well as to enrich the lives of everybody that loves you. You are in such a better place, but it still hurts so much. It’s surreal that you were here and then so quickly you left us. I so much regret that I wasn’t able to have an “adult” conversation with you about how much I love you. I hope that you know that was the case. I so much regret that I wasn’t able to shield you from the pain of this disease. I so much regret that if we had been as aggressive as your disease that we could potentially could have caught your disease sooner.
I think about you all the time. Sometimes I can only think about the end. That is incredibly painful, but that should not define you. That was a short portion of your life. Up until that point you were a tremendous energy. I love that you were reserved and often liked to do things on your own, yet you always demonstrated pure sweetness and innocence the way you cared that everybody else was taken care of. I loved your willingness to share (usually) your toys with your friends.

  • I loved your insistence that you share a bite of nearly every snack with mom or myself, regardless of whether it had been on the floor or already in your mouth.
  • I cherish the love that you showed for your sister, always wanting to include her and do whatever you could to help her stop crying.
  • I love that you couldn’t watch more than 2 minutes of television without losing interest, yet you could endlessly watch YouTube videos about construction vehicles, dump trucks, and garbage trucks.
  • I love that some of those videos were in Russian and that once or twice you referred to a construction vehicle by its Russian name (we assume).
  • I love (in hindsight) that no matter how exhausted I was in the morning, I could never convince you to lay in bed with us and rest. Never.
  • I love that you could be playing outside, near your friends, and flip a switch deciding that you were done and it’s time to go inside and eat. I can see that Maya will inhale her food as she grows up, just like you.
  • I love that you still insisted on milk every single morning out of a baby bottle, for reasons that will forever be unknown.
  • I loved coming home from work and hearing you yell “Daddy!” from the other room. I love seeing Maya make the same face today every time that mom enters the room.
  • I love that I could not take out the ladder around the house without you insisting on climbing up with me.
  • I loved watching you on the video monitor as you sat there in the morning waiting for your alarm clock to light up green, meaning it was okay to get out of bed. We still see your alarm clock light up green.
  • I love that you grabbed canned drinks out of the kitchen and handed them out to us and to visitors, regardless of whether or not we wanted them.
  • I love the videos of you and mom that she would send occasionally. I love watching them today.
These are all small things. But these are the everyday things that are no longer there. I miss all of these things and I miss you. Life is far too quiet now, but I am grateful that we still see glimpses of you in everyday life. I know that your friends are still talking to you and I know that you are still looking after them.



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