As weird as this may sound, this post is probably the hardest one, or rather the one where I’m erasing, changing, wiping the whole screen clean again and again. I think it’s because I know that I am no expert, no mobilizer, and honestly trying to figure out how I can make a difference each day on a “big” or “small” scale. And I know I can never speak to any issue with the depth or knowledge or eloquence that so many others can. But even with these things I lack, I do feel like I should at least humbly try to convey what I’ve been thinking about.

May is Brain Cancer Awareness month.  go gray in mayDid I know this two months ago? No, I didn’t. Did I know that brain cancer is the second leading cause of cancer-related death in children? No, I didn’t. Did I realize that almost 700,000 people in the United States right now are living with a brain tumor and 140,000 of those cases are malignant? No, not that either.

But, the truth is, no matter if every single person was diagnosed with a certain disease or if only 30 per year are affected (like with Kai’s diagnosis of ATRT), when “it” – a disease, disaster, crime, accidents, anything – affects someone you love, then it changes everything. 

Our world is so broken – there are so many causes, beliefs, disasters, research, you name it, to support. And so I think, for me right now, I just want to say let’s find a way to do something to get involved in LIFE. And I am using Kai as my inspiration.  I think of Kai Kai who did life at about 117% and was curious, took risks, and didn’t hold back from loving anyone who came in his way, even if they were squirming out while he tried to grab their hand or give them a hug. I remember him asking me sometimes incredulously, “does he/she not like hugs?” like he couldn’t even believe this.

So for Brain Cancer Awareness Month, I am trying to figure out how to get more involved in life and would love if you would join me in whatever way makes sense for you. Maybe this starts with “small” things such as reaching out to a friend or even just picking up something a stranger dropped on the ground or waving hello or smiling. This means I’m going to try to overcome my social anxiety and get to know more people who I see every day but have been too shy or not known what to say and say yes to getting more involved in my local community.

In our journey with Kai, we all came together as a community and the world is better in many ways, just like in the story of the Brave Little Soul. So maybe it’s donating to the cause close to your heart, maybe it’s just even saying YES, and making the decision to get involved in life, whatever it is I want you to feel like you’re alive and if you need help, just ask.

If you do want to learn some more information about brain cancer or how to get involved in those efforts, my sister-in-law, Kai’s Aunt Caroline has a great post on her blog In Due Time. And also, please feel free to share in the comments or on the Pray for Kai page any of those causes or activities that you’re involved in that you’d like to bring awareness and/or invite others to participate.

And I think as we live life, how we are involved may look different but, I thought no matter what that might look like today, a little Kai Kai could be some good inspiration for life. I love you Kai Kai and miss you every second  – thank you for bringing so much life and light into this world, thank you God for allowing me the privilege of loving him.

10 Comments on Getting Out and About

  1. That’s a beautiful video! Thank you for sharing it and for your inspiring words. You are always in my prayers.

  2. Aki this is such an eloquent and simple message reminding all of us to engage in life at whatever level we can and even a smile for some is way to reach out. I love the video and every time I watch it I smile too!

  3. Dang it! That video gets me every time! Sun’s out today, you know what that means!

  4. Thank you for your inspiration. I love seeing the joy of Kai shining through in the video

  5. Aki–You are so great to be turning a tragedy into a way to help others. I am going to get the word out at my company and see if we can make note of May as brain cancer awareness month on our website. As always, my thoughts and prayers are with you and your family.

  6. Caroline is hosting a Stella and Dot Trunk show at the end of the month at her house. I’m donating my commission on the sales, 20%, to Head for the Cure in honor of Kai. We would love for you to join us at the party but if you can’t come you can shop online following this link: and it will be added to the party. There is jewelry, bags and accessories, buy something for yourself or someone else and know that you are helping donate to an amazing cause! Lets help find a cure and honor sweet Kai!
    Aki and Shawn you are in our prayers daily!

  7. Aki, You never cease to amaze me! I am getting involved in LIFE this month. I have been trying to do more little acts of service, from helping a lady in the grocery store parking lot with her groceries, to donating to charity, to helping a neighbor by giving them some of the dirt with got for our yard, to spending time visiting ailing relative, and bringing dinner to a friend who’s new baby was in the hospital. I haven’t been perfect (I’ve missed a few days) but I’m trying and I’m thinking about Kai and others I know and love who are experiencing challenged and grief because of the imperfect world we live in. I know you will see Kai again and that families can be together for eternity! My thoughts and prayers continue to be with your family! The suns out in Utah and so is Kai!

  8. Oh how I LOVE this video. can’t stop watching it! Thanks for the reminder to do things for other people! Kai is a perfect reminder and since I’m always thinking of him I’m in turn always reminded to seek love and serve others!! xoxo

  9. I just wrote a post about choosing love… which was prompted by something that has been stirring in me since my grandmother died three weeks ago. Caroline read my post and then told me about your post and I told her I would love to read it. So here I am.

    Since my grandma died, I have this overwhelming feeling to love… to choose love. In all circumstances to choose love. There are no regrets if you choose love. There is always more love if you choose love. I want to show it to everyone around me… whether I know them or not. I wrote about it to reach across oceans and spread my love to every corner of the world. If it weren’t for Christ, I wouldn’t have this love to give.

    I am so sorry for your loss. What a blessing and a light Kai has been. May God continue to shine his face on you and your family.

    Beautiful video.

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