Category: General

Fumbling but Trying

It’s hard to know how to start this entry – it’s hard to know how to do a lot of things these days. We’re home, we’re participating in parts of what was our “normal” routine, but everything – every.single.thing – is completely different. We have Kai’s little blankets that he always had at home and at the hospital (his owls, bees, and “rawrs” as he called them) laid between our pillows, it may seem silly but it’s comforting for us right now.

Looking back we now realize how sick little Kai was before we ended up admitted to the hospital. But even more so we’ve realized how stubborn and resilient this little guy was – he wasn’t going to let some cancer stop him from living life and loving people! He would try and play like almost normal and then would all of sudden just start crying and just collapse in our arms needing us to hold him. We had no idea what was going on at the time, but just knew he needed us.

We’re not really sure how to even to start again. It’s not getting “back” to normal, we have a new normal but I’m not sure what that looks like, I think that it will continue to change, but Kai will always be with us. I’ve been telling Maya when the sun comes out “sun’s out, Kai’s out!” and she smiles. I feel like somehow the littlest ones are able to connect with God on a level those of us who have seen more of the brokenness of this world cannot.

We hurt a lot. And Shawn and I have talked a lot about how easy it can be to just fall into the “we’ll never get to experience ____ with him” and “he’s not here” and “I should have ____” but we can’t stay in those places, right? Maybe it’s kind of like Kai, we’re sick with grief and not sure what’s going on, but when we collapse, God has been holding us: providing us support through your prayers, friends and family keeping us company, bringing us meals, hugs, laughter and so much more, through providing a friend who has connected us to start grief counseling, and through baby Maya who somehow has learned to do the fish face and also created her version of a stink face at 7.5 months old. silly kai

This may sound kind of dumb, but I’m not sure how to pray for Kai these days, but we do pray for Kai. My sister in law said to just tell God that and he’ll show us. So we are kind of fumbling and stumbling with prayers and with the little things every day, but we’re committed to trying and God, I just thank you for being so generous to us and pray you’ll continue to be with us and help us move forward and choose life and love even amidst tears or confusion.  Thank you again so much for Kai’s life and all of the good we’ve witnessed.


We are headed to the ER right now because Kai has not been quite right and worse than yesterday and we are worries about the swelling. I am scared and I don’t know if this is dumb to be posting right now but wanted to ask all of you to pray for our little Kai. Thank you so much. 


As Aki noted, the steroid medication wreaks havoc on poor Kai. He seems to pass most of the day by asking to have a bite of every possible food item in the house, but rarely has any desire to stick to that item. It also causes insomnia which makes for long nights. That being said, his grandmothers (Mia and Nana) appear to have just the right touch. Little Buddy took a nap on the couch with Mia this morning, actually took a nap in bed this afternoon, and now is taking a nap with Nana! And what does he always ask for after waking up? Milk or food, of course!

kai with nanamia helping kai sleep 03.16.14