Four Years

Maya is at the age now where she likes to find books she can “read” to us (aka books she has memorized). She likes to sit on a chair, pretend she is a teacher, and read the book to Edie and me – it’s Maya story time and it’s great. The other day she brought me our very well-loved copy of Brown Bear, Brown Bear. This was given to us as a gift for Kai, and Kai loved this book so much that there is a decent amount of tape on this book to hold it together from Kai’s enthusiasm in turning the pages.

I remembered that we have an audio clip of Kai “reading” this book with Shawn. I pulled it up so Maya could hear. I heard his sweet little voice with his little kid “accent”, and my eyes welled up immediately.  “Mama?”, Maya said, “What’s wrong?” I just shook my head, I couldn’t talk, the lump in my throat was too big.  They both then scrambled into my lap, Edie kind of clawing at my eyes (ha!) with a puzzled look as if to ask what was wrong, and then the tears wouldn’t stop.

I was crying because my heart aches for my son, but also because I felt so horrible realizing how much time I let go by without taking the time to truly stop, be still, and remember him – listen to his voice, look at his little face in the pictures, and fully grieve his absence.

Today marks four years and these past few months have been different for me. I find myself having flashbacks at times while not even thinking about what happened and just feeling like my heart is heavier. I think it may be that I haven’t been grieving well or even living well, and perhaps these are signs of that. God has sustained us through every moment, no doubt, and maybe He is trying to tell me something: reminding to rest in Him, and grieve with Him and not just gather strength from Him.

I struggle too with trying to “balance” how what happened manifests itself in our life, such as making sure Maya or Edie doesn’t feel like Kai overshadows them, or that it’s all about losing Kai. Instead, maybe it could be recognizing that all of our struggles, whatever they may be, are defining moments in our life, but they do not define who we are.  It’s the daily challenge and choice we all face – living fully and presently in the midst of chaos and struggles as well as the joy and amazing moments.

Thank you again so incredibly much for continuing to support and love us so well. Thank you for continuing to share your Kai stories and how something reminded you of him. It has helped so much these past four years.

Kai Kai, goodness gracious, we love you and miss you so much. I am so happy you are pain free and experiencing such joy, and we send you all the love our hearts can hold and more!

Kai’s 6th Birthday

When I think of Kai and the grief hurts and sadness hits harder, I often then feel this desire to “fight” –, fight for those things that matter, fight to good, love well….. to serve God in this life. I stumble and fumble a lot in these efforts and I don’t know what I’m doing, especially these last months, but I want to do better. Today is Kai’s birthday and I love this little guy and I miss him and I renew my promise to him that I will try my best to honor his life by living this one well. We love you Kai!


Dear Kai,

Happy birthday my sweet boy! I cannot believe that today you would have turned 6. An almost first grader – sometimes I truly cannot believe that you aren’t here and we don’t get to see you hit these milestones. I shake my head and say did this all really happen? Your dad and I were talking last night and your dad articulated this feeling we’ve been struggling with since you’ve been gone. I hope you know, I think you know, that we have never, ever stopped loving you and we are always your mom and dad. Our love for you grows more each day and it’s an active, dynamic love – but we don’t get to “give” it to you – we can’t hug you or take you to see something new or teach you something or talk with you or cuddle with you – those little things we all do to show someone we care. We have all this love to give you but we can’t here. I so wish we could.

the three siblings – even Edie making a crazy face. Photo: Susan Uccello

Your youngest sister joined us this year and she shares your name as well as your old room – thank you for sharing it Kai Kai :-). Maya, Edie and I are in there a lot and I remember your shenanigans in there and I tell Maya about them – like when I came in and saw your stuffed animals facing the corner – you said it was time out because they didn’t listen (ha!) or when I came in and you were jumping on your bed but whispering a song so that it was having “quiet time”…. not exactly what I had meant by quiet time, but pretty genius. Your room is such a special space and your absence is palpable Kai, goodness you would be so good with these two crazy girls – you have your own brand of crazy and energy that’s for sure, but I can only imagine the worlds you and Maya would be creating and I bet hands down you would be so much gentler with Edie than your nutty sister. I remember how gentle and kind you were with baby Maya – it blew me away! We miss you big brother. Maya asks for you so much – especially when Edie’s main activity was crying. Kai, there are no words. I love you, I miss you, I wish you were here. I celebrate your life and goodness gracious I’m so thankful for those two and a half years. I thank God for this day when He brought you here to us and we will love you forever Kai, and every day more until the day we meet again. Happy birthday little buddy.

Love, Mom

It’s September…

On Maya’s 3rd birthday, a milestone we were so thankful to celebrate, as I was putting her to bed, she suddenly became inconsolable – like that awful hiccuping crying. When she finally said why, it was because she wanted her brother. I asked her if she wanted to see and hold his picture and she threw it and said no, I want him to be here, I want him to play with me. I want him come back from Heaven… I felt a familiar feeling – helplessness – helplessness to alleviate her suffering. It was the same feeling I often felt with Kai because what I saw was that this is part of her burden, part of her cross to bear in this life.

childhood-cancer-monthSeptember is Childhood Cancer Awareness Month and as I mentioned last year, it’s also a month to raise awareness about many, many other burdens that people must carry. I struggle with if or how to say anything during this month. In some ways I feel I must – but I also feel torn because while yes, we have experienced the burden of having and losing a child to cancer, each of you are carrying the weight of suffering that also deserves awareness. Natural disasters, the daily challenges of managing mental illness or physical illness or an illness no one can diagnose, PTSD, paralysis, poverty and financial stress, abuse, crime, discrimination and war. The list unfortunately goes on and on.

Yes, September is Childhood Cancer Awareness Month and for the 25,000 children around the world who will be told they have cancer this month, and the harsh reality that a quarter of those won’t win their battle — that reality is absolutely terrible and horrific. I wish those children and families would never have to face that reality and carry that burden. But I also know that each of you face your own suffering.

Additionally, it seems we are in a time where our country and our world seem to be more focused on what divides us than what unites us. We’re closing in on ourselves, shutting others out, becoming less of a community. Social media, the news, every day conversation seems to be filled with more divisive talk than supportive talk. While our views and our lives all differ, our hearts can still be broken. And some burdens are more “acceptable” to share or to rally behind – others are more subtle or maybe less understood. And the obvious truth is that we will never be able to alleviate all of the suffering in this world. So, how do we manage all of this?

cranes for banner
Photo credit: Susan Uccello

As we unexpectedly had to face planning Kai’s memorial celebration, we came home from the hospital to hundreds and hundreds of origami cranes folded and sent to us by friends, family, and those we have never met. Origami cranes are a Japanese symbol of hope for healing and it can be a tradition to make these during challenging times. The power of that message of support spoken through the rainbow of cranes provided an almost tangible lift to us as if we could truly feel the message from each of the creators of the cranes that said, we’re here to help carry your burden. We’ve kept all of them and keep them hanging in our house as a reminder of hope and the power of community and what God has provided to us.

photo credit: susan uccello

During the time when Maya was inconsolable and she was sobbing in a ball on the floor, I remember searching helplessly around her room for something, anything, and prayed God please help me help her. I know I can’t give her what she wants and bring Kai back, but I want to help her carry this weight. At that moment I saw the tail end of her favorite lovie sticking out with Kai’s name standing out so bright – this lovie was with Kai when he passed and it has his name embroidered on it. I said Maya, Maya look- what does this say? It says Kai! And this is your favorite Kai monkey and I know you miss him and I’m so, so, so sorry he can’t come back from Heaven. But God loves Kai and God loves you and I love you and you can hold and hug your Kai monkey and think of him and love him because he’s still in your heart. I half expected her to throw the monkey at me like she did the picture, but she looked at his name and closed her eyes and hugged that monkey so tight as I held her.

So I feel like in this month, Childhood Cancer Awareness month, I think I just want to encourage us to step back from the negativity, from the divisiveness, and just remember we aren’t in it alone. kai-runningWhile we each carry our own unique set of challenges, in the end each one of those burdens can cause suffering and for our heart to hurt. And even though we can’t cure it, we can at least try. You’ll be amazed at the power you hold to help someone else. We sure as heck saw your strength.

If you’re interested in how to help kids and families facing pediatric cancer, check out St. Baldrick’s Foundation or Alex’s Lemonade Stand. Last year’s post including some photos of Kai’s journey can be found here.








Kai’s 5th Birthday

We are truly overwhelmed by the love and support and celebration of life we’ve seen in honor of Kai’s 5th birthday. It just floors me and makes my heart feel such gratitude and inspiration and I cannot thank you enough for loving our Kai Kai and our family so well. Thank you so very much.

kai's arrival
Kai’s Arrival

Five years ago today, this little nugget entered the world. I always forget how teeny they are. I don’t know how to celebrate my son’s birthday when he’s not physically here so we try and fumble – like much of parenting, we’re absolutely 100% winging it.

It’s difficult for me to express what my head and heart go through on this day and the most driving urge I have is to talk to my little buddy.

Dear Kai Kai,

Happy 5th birthday! We miss you so much little buddy and wish so badly you could be here and we could celebrate you. I think that hit me this morning when we asked Maya what today was and she said Kai Kai’s birthday and Shawn asked her how old is he, and she raised up her little hand with five fingers and said “5!!!”. I think I realized that this could have been the first birthday where the two of you could really celebrate together and both understand – that would have been so much fun.

This birthday would have marked a big milestone for you – graduating pre-K with your buddies and entering Kindergarten this year. I loved getting to see your friends at the graduation, so grown up and goofy and happy.

Maya helping make your birthday cake today.

And that’s the bittersweet thing about Maya’s milestones…. Kai, your baby sister is now “older” than you were here on earth. We’ve entered new territory – and let me say I think you may have been a little less dramatic of an almost 3 year old than your sister 🙂 I caught myself with Maya thinking “oh, I don’t want her to grow up, I want her to stay like this” and I cut myself off mid-sentence because you didn’t get to grow up and I wish you could have kept growing and changing. Such a weird thing, our hearts overfill with love and joy in moments and we just want things to stay that way forever, but life keeps going and we have to let go. We had to let go of you physically too too too early, but I guess the lesson I’m learning is that I had to let you go physically, and I must let Maya go to grow up, but I can always, forever keep those memories in my heart and mind and through each day my heart can grow bigger and deeper for how much I care for you both.

One day I hope I’ll understand how this all works, but goodness I think you somehow communicate with so many. I know many of your little friends and our “big people” friends talk to you and remember you each day, but your little sister – Kai Kai every day this past month she has said she is sad because she wants Kai Kai here or she misses Kai Kai. Today she got so upset and threw a tantrum saying “Kai Kai’s not really here, he’s not really here, I want him to be here to play with me.” So we watched some more videos of you and talked about how we can always carry you with us in our heart. I wish you could be here next to her bugging her, playing with her, and talking with her – she talks a lot so I have a feeling with the two of you the volume in this house would never have been “quiet”.

IMG_5924Kai, it’s amazing you still impact so many through your short but beautiful life and goodness gracious I am so undeserving to have been chosen to be your mom, but I am so thankful, for each of the days we had together and I love each day I have with you now even though I really, really wish I could hug you while you try to escape and watch you grow.

Kai Kai – as your family we will try our best each day to celebrate your life, love you better, and use the blessings God has given us to honor Him. We miss you terribly, love you unconditionally, and will forever carry you with us.

Happy birthday sweet boy! Love you.IMG_4782