The First Year

I keep saying to myself… I can’t believe it’s been one year. There’s no way it has been that long since I’ve been able to see, hold, and love on my baby boy. He was just here. I can hear his laugh and the way he would inflect his voice and the sound of his furiously fast feet running down the sidewalk. But the seasons have changed, time has continued forward and we are here at the one year mark even though everything inside feels like it just happened.

I remember when we left the hospital after Kai passed away. When we had first entered the hospital just two weeks earlier, winter was still hanging on, there was a chill to the air and the trees were still bare. When we left, I remember it almost being shocking to see how the world had changed…. The world was green and bright and showing signs of new life that happened while we were inside…. inside where Kai’s life had been withering away and the darkness and barrenness of winter felt like the more appropriate season.

I didn’t know how this first year mark would affect me. Every day the pain is just below the surface and a simple memory can rip it freshly open, raw and vulnerable and new. Every day I want to shout, “you can’t see him but Kai’s here!”. As a friend who also lost her son wrote, “it’s like living life with an asterisk” where you want to add the asterisk to every picture and memory to say “Kai is here too”.photo(3)

The anniversary of the date we found the tumors was incredibly hard, I’m not sure why but the memories I had forgotten came flooding in of how everything started – the beginning of the end. Kai couldn’t move, he was groaning constantly in pain, his little hands clutching mine while he tried to rest his head against my chest. I can still feel the warmth of his hands. Then the days continued and the memories kept coming… I can hear his moans that still echo in my heart… “mommy I want to go home… mommy owie, owie”. His piercing black eyes looking at me pleading to help him and confused why I wasn’t making it better. Mommy is supposed to make it better. If love could have healed your wounds Kai, you would have been healed immediately.

March 21. The day Shawn and I got married 6 years ago and the day our son left this earth almost to the minute in line with when we got married. If love could have healed your wounds Kai….

 ….Love Wins.

Those were the words that God was lovingly shouting in my heart when Kai passed away. If love could have healed your wounds…. But oh Love did heal your wounds. You are pain-free not only from cancer but from the pain of this world and this world is so much more filled with love and community and service. Our brave little soul.

We have been surrounded by so much love and support this year, it is truly unbelievable. Shawn and I are not worthy of this amazing life and sacrifice and compassion we have been shown by God and each and every one of you. We don’t know how to do enough to serve you all and give thanks. Thank you to all of you, sincerely, sincerely, sincerely, thank you for helping us hobble and limp through this year.kai and shawn at zilker

Kai, my sweet baby, big brother… our little nuggie …. Goodness gracious how much I love you so and how I wish I could just get to be your momma in a “normal” way… but Kai Kai we will keep being your parents and love you every single day of our lives and thank you for teaching us all so much in your short but beautiful life.





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!

What Community Can Do

Welcome to the new, still under construction, home of what we hope will be a venue where we can continue to share, but more importantly we hope we will be able to provide resources, raise awareness, and do good somehow, some way to others! Forgive us (me), as I am still learning the ropes of all of this and please don’t hesitate to let me know any feedback.

It’s 2015.

New Year’s was hard. It is still hard.  I’ve never been one to make a huge deal out of New Year’s celebrations, but this year I did not want the new year to come. Not. one. single. bit. I completely recognize that this is all semantics, but leaving 2014, well leaving 2014 meant that I was leaving the last year that Kai was alive. I know, I know, he only lived 3 months of 2014. But, he lived! He was here… and in 2015… he’s not. And it makes it more and more… real. This is our life now. Maya will hopefully turn 2 in 2015….Kai was 2…..He will forever be 2.

I’ve reflected so much on how did we even get through these past 9 months and I was reading through the posts when setting up this site, I found the picture of Kai on that precious day we had with him home from the hospital and he said “I want to ride bikes”.  I remember that day, I remember seeing Kai, the spirit, the heart of Kai, trying to push his way from behind the scars, the meds, the surgery, the disease, and how his family, friends… his community helped him be a little boy again, even if it was just for a few minutes.

Community is a powerful thing. It’s life-changing.

God has provided one heck of a community to help us in this time and we cannot thank you enough. I apologize so so much… we had the best of intentions to be able to send cards, emails, phone calls to thank each and every one of you for what you have done for us – but we did not get to all of you, and there are also so many of you who have supported us that we may not even be aware of… so to all of you ……Thank you, thank you, thank you.

  • Thank you for your visits, phone calls, messages, texts, posts, comments, prayers, letters, cards and all of the different ways you let us know you were there.
  • Thank you for understanding, then and now, when we don’t know how to answer the question about how we’re doing or we are simply silent, cry, and/or are not able to engage. Your presence makes a difference.
  • Thank you for feeding us when the last thing we wanted to do after Kai passed away was eat or think about eating.
  • Thank you for staying by our side.
  • Thank you for asking us how we are doing.
  • Thank you for asking for us to walk with you in your grief.
  • Thank you for walking with us when it was time to let Kai go.  No parent is prepared to watch their child pass away before their eyes, and leaving after it happens, it is an impossible, unnatural feeling….you always need one more goodbye, to hold them one more time, to hold them for forever.….we needed you
  • Thank you for talking about Kai and sharing how you and your kids still remember him. These stories lift us up and we appreciate so much being able to talk about our son.
  • Thank you for donating to hospitals, foundations, and nonprofits (you all are so generous!), lighting luminaries, running, walking, praying, serving others, celebrating, and all of the many amazing ways you all have honored and celebrated his life by bringing life to others.
  • Thank you for participating in so many events, building community, and making connections (train rides, races, birthdays, fundraisers, and more).
  • Thank you for sharing your connections, research, and resources. While Kai never had treatment, we talked to those doctors and those conversations helped us realize the truth about Kai’s situation and helped make our decision clear.
  • Thank you for caring for us, lifting us up, and for helping carry the burden of this grief.

Kai’s story and the acts of support, kindness, and community that you all have shown have inspired others, and while you may not have thought you were changing the world, you were absolutely changing ours.

Our hearts have been absolutely broken through the loss of our son….but through your love and support of us, you have broken our hearts open….to love and serve more. This can’t be undone. And while I wish my son was still here more than anything, I don’t wish for my old heart… and I thank you for everything you’ve done. So if you think that you can’t do anything that will make a difference in someone’s life… think again. You’re pretty amazing.

Thank you for everything and for celebrating and remembering our buddy.




First Christmas

It was a beautiful day today – the sun was out and we made the most of it by going on on walks with the family, taking out the biggest kite we’ve ever seen (thanks Richard!) and spending time at the “blue park” as Kai called it where Maya and her cousins made many, many laughter filled trips up and down the slides. A day of mixed emotions – so incredibly much to be thankful for, our cups truly overflowing, but simultaneously a stark emptiness felt from Kai’s absence and the pain still resonating so deep. Shawn said it so well – everything now to some degree feels broken and incomplete and I think that’s just us feeling the reality of this world.

But we go to bed now, with hope and joy in our hearts even if a tear may come along and we are so, so, so thankful for today and the moments we’ve been lucky enough to experience in this life.

Tonight we wanted to include Kai in our Christmas celebration. Kai loved Christmas lights and sparklers, so it seemed only fitting that if Kai’s up in Heaven celebrating, I’m pretty sure he found a way to probably find the best sparklers ever. So we read aloud the poem below (thank you Kathy for sharing this on fb) and then lit up sparklers to celebrate Christmas with Kai. And thanks to Aunt Caroline, Uncle Colby, Uncle Michael and Shawn, we had some fun with “sparkler” writing that maybe, just maybe Kai somehow could see.

We wish you all a wonderful holiday and thank God for you and the hope you bring us each day.

christmas sparklers

My First Christmas in Heaven (Author Unknown)

I see the countless Christmas trees
Around the world below,
With tiny lights, like heaven’s stars,
Reflecting on the snow.

The sight is so spectacular,
Please wipe away that tear.
For I’m spending Christmas
With Jesus Christ this year.

I hear the many Christmas songs,
That people hold so dear,
But the sounds of music can’t compare,
With the Christmas choir up here.

For I have no words to tell you,
The joy their voices bring.
For it is beyond description,
To hear an angel sing.

I can’t tell you of the splendor,
Or the peace here in this place.
Can you just imagine Christmas,
With our Savior, face to face?

I’ll ask Him to light your spirit,
As I tell Him of your love;
So then pray for one another,
As you lift your eyes above.

Please let your heart be joyful,
And let your spirit sing.
For I’m spending Christmas in Heaven,
And I’m walking with the King!

I know how much you miss me;
I see the pain inside your heart.
But I’m not so far away,
We really aren’t apart.

So be happy for me, dear ones,
You know I hold you dear,
And be glad I’m spending Christmas
With Jesus Christ this year.

I send you each a special gift
From my heavenly home above.
I send you each a memory
Of my undying love.

After all “love” is the gift,
More precious than pure gold.
It was always most important
In the stories Jesus told.

Please love and keep each other
As my Father said to do,
For I can’t count the blessings
Or the love He has for you.

So have a Merry Christmas and
Wipe away that tear.
Remember I’m spending Christmas
With Jesus Christ this year!

-Author Unknown

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