Category: Posts by Shawn

Thinking of You

We’re thinking of you, Buddy. Constantly. It doesn’t matter if we’re tired. It doesn’t matter if we’re too busy with work and school and life. It doesn’t matter if the day is beautiful and we’re at the park with Maya. We are always thinking about you. (Is that a song lyric?) You see, it doesn’t matter what condition we are in or what condition the rest of the word is in – you are always here.

Some thoughts can be a painful and poor replacement for the real thing, but those thoughts are dwarfed by the rest of them which are a joyous and precious replacement for what is missing. Many times you pop into my head because something jogs a memory. Perhaps I came across one of the many stickers that you placed around the house which are still there (Lightening McQueen will be on the dash in the car for years to come). Perhaps it’s because the sun is shining brightly. Or maybe it’s the water cups the Maya uses that still have your name on them. I love that these things give a nearly tangible nature to my thoughts.

But more often I’m thinking of you for no apparent reason at all. I’m not even thinking about anything in particular. It’s the same way I think about Maya. I just recently realized how much time I spend thinking about the two of you – just general thoughts about nothing in particular. These thoughts are just there. These are thoughts we all have on a daily basis about the ones we care about. I love that these thoughts just exist – as if they are an autonomic function – I don’t have to try at all to think about you or Maya. You are just there!

I haven’t really been able to write anything worth sharing. Every day is up and down, but not particularly interesting. But the constant thoughts and memories are spectacular! Do any of you out there know what these thoughts are – those thoughts about somebody that are always just there in your head? If you do, then I promise that you have something beautiful in your mind that will forever feed you without any effort!

The sun was shining bright today, Kai, but we’d be thinking of you even if it wasn’t.

Love you!


Is this thing still on? In the spirit of a difficult but wonderful Thanksgiving, here is some thanks…

Everyday I am thankful for Kai. He is the one who changed our lives most significantly. Not when he left this world, but when he entered it.

Everyday I am thankful for Maya. She does a lot of things that remind us of Kai. She has similar dance moves and makes the same noises. From another room those giggles and laughs and baby talk can sound just like Kai. On a daily basis Maya asks (demands) to watch videos of Kai and so we wonder how much of the similarity is innate and how much she has learned from her big brother. We are so fortunate to have enough little videos that Maya can know her brother a little bit. But then she can be so different, which is probably a good thing. We need to make sure not to judge her behavior based on Kai’s. We need to be careful that we don’t overlook her uniqueness fearing that it could diminish her big brother in our memory.

Everyday I am thankful for Aki. Her selflessness and love always seems to outweigh any varying levels of stress, pain, and drain in any of her days. She takes care of everybody before herself and is a rock as we all continue forward.

Everyday I am thankful for family, friends, and strangers that provide comfort, love, and support to our family and to others. There are so many people in need of something and I see that more clearly now. We can’t all support everything, of course, so seeing everybody support something is what we need.

We have some pictures of Maya and Kai on our wall at the base of the stairs. When we walk past with Maya she often yells “Kai Kai!” or she tells him “Hi!” or “Bye!”. This is a picture of her talking to the picture on the wall. First she talks to the baby (which she doesn’t understand is her) and then she talks to Kai. I love that she is looking at him and then the picture of Kai on the floor looks like he is looking at her. I love these kids!maya talking to kai

Roller Coaster

It’s been over five months.

Those five months are a small part of a roller coaster that won’t end for a very long time. It’s a roller coaster that goes up and down so much that by the time you recognize you’re at a high point, you’ve already leveled off and started a descent. I’ve walked into Maya’s room at midnight and been lifted to a peak only to walk into Kai’s room next and find myself plummeting!

My thoughts are a roller coaster. For many months I lost the ability to zone out – to focus on nothing when it was a luxury to literally think about nothing. Like those times when you find that you’ve driven for 10 minutes but don’t recall actively thinking about driving – you just went from point A to point B! I could not do that anymore. My heart and thoughts and soul permeated with thoughts of Kai nearly every instant that I was not actively thinking about something else. Driving. Eating. Sitting in a dentist chair (really). Kai. Kai. Kai! Those thoughts were always a 50/50 mix of despair and joy and they are totally exhausting. Nowadays those thoughts are heavier on the joy side. I think less about those terrible days in the hospital and more about Kai playing with his sister.

Speaking of Maya – she insists on watching videos of Kai on our phones. It’s the first thing she wants in the morning. If you take your phone out during the day she’ll reach for it and say “Kai, Kai”. She knows her brother and her face lights up when she sees him. She is forcing me to see the beautiful times with her brother. She even learns from seeing him in these videos. It’s amazing to see the likenesses between the two of them and so gutwrenching that we won’t see the two of them grow up together. Kai’s love for Maya is so evident in those videos and Maya’s love for Kai is so evident when she watches them.

On a micro level so many good things have continued to happen including weddings and healthy new babies to friends and family (including a new nephew honoring his cousin with a middle name of Kai!). Yet I’m also more aware now of all the dreadful things that are happening – car accidents and cancer and very sick babies. It is so hard to see friends struggle inside life altering events that it gives me great respect for everybody that has supported us along the way. Providing support to each other (and accepting it) won’t fix everything, but it holds us together.

While I don’t cry as often as I did a few months ago, I miss Kai more than ever. You can’t help but wonder what he would be doing with his sister and his friends. How would he grow with them and learn from them and teach them? I wrote a letter to Kai on his birthday – here is one line: “I would give anything to go back to a point where we are totally exhausted every single day because keeping up with you was like a never ending marathon.” Kai’s missing energy will never be totally replaced with exhaustive grief because the love that was always there will never go away. The roller coaster has always been there. The only thing that’s changed is that while Kai was riding on it with us for a few years, he got off early and is waiting for us at the end.

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.