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.

Head for the Cure

If you will be in Austin this Sunday, the 30th, please consider the Head for the Cure Central Texas 5K.

The Head for the Cure Foundation is a 501(c)3 nonprofit organization dedicated to raising awareness and funding in the fight against brain cancer. The 5K events are not only successful fundraisers, but unique tributes to those who are fighting brain cancer and those who have lost their battles. Their memories carry on through the teams that formed around them, and the teams return year after year to celebrate their legacies.

http://events.headforthecure.org/site/TR/Events/General?team_id=1502&pg=team&fr_id=1050

The Head for the Cure Foundation works with the Brain Tumor Trials Collaborative. BTTC was created as a network of medical centers with the expertise and strong desire to participate in state-of-the-art clinical trials investigating new treatments for malignant brain tumors.

Included in the BTTC are Dana Farber and MD Anderson. We spoke with oncologists at both of these institutions who were more than willing to share their expertise on Kai’s case. The oncologists and neurologists at Dana Farber, MD Anderson, Dell Children’s Medical Center, and St. Jude’s shared immense expertise while being honest and compassionate.

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 – March 24, 2014

To celebrate Kai’s life, we will be gathering together for a kid-friendly event this Monday, March 24, 2014. 

Details:
Triumphant Love Lutheran Church Fellowship Hall
9508 Great Hills Trail, Austin, Texas 78759
1:45 pm

This will be a kid-friendly event including some art activities for children to participate in if they wish. There will be a brief more “formal” portion of the event that will start at 2:00 pm and a small reception to follow including a few of Kai’s favorite snacks.  

If you asked Kai his favorite color, it would change depending on the day. So feel free to wear your favorite color or any thing else that is bright and happy. We look forward to celebrating Kai’s life with you. 

In lieu of flowers, please consider donating to a charitable organization such as St. Jude or Livestrong..