Tag: video

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.





Six months. Six months…I wish I could be writing something else after those two words…maybe like today marks six months since Kai learned how to ride his tricycle or look how much Kai has grown in six months. But, today marks six months since our sweet boy was able to let go of all the pain and suffering he felt and be free.

For some reason, this milestone is hitting us harder. I think they say it’s because the shock is gone by now and it’s just… real. The absence of his physical presence – the whirlwind of energy, the little voice talking nonstop, the constant to/from the refrigerator or pantry because he loved eating. This past weekend we had an amazing uplifting weekend of getting to do the Houston Head for the Cure race and spend time with friends who are family to us. But coming home from trips out of town always makes his absence feel so much more present, coming home isn’t complete without him. My home here, well, in my mind and heart should have Kai in it.

I’d love for Kai to be in this home, but he’s Home now.

The smiles and joy I had the chance to see on his face here is nothing compared to the joy and smiles God has prepared in His home, and for that, how can I be nothing but on my knees grateful to a loving God that Kai is not suffering, but instead living this new life of goodness and joy I can’t even imagine. I try to keep that image of the true Home in my heart and plant my roots there and keep my eyes focused on Him while living this life. I feel that I fumble so much in doing this, but I am trying.

It’s interesting they say that at six months the shock is gone because now I feel like Shawn and I are more often saying, wait, what just happened?!? I find myself asking, “Kai was real, wasn’t he?” I know that may sound stupid, but I think I ask that so much because now it feels like all of it was too good to be true.

Kai was born – healthy, beautiful, crazy, awesome. Maya was born two years later – healthy, beautiful, crazy, awesome. We got to see a brother and sister interact – Maya’s first smile was because Kai was tickling her; she crawled for the first time because she was trying to get to Kai. I got to sit in-between them while they both cried in their car seats on long car rides – Kai holding my one hand and Maya the other.

It was almost too good to be true.

None of those gifts were because we deserved it or we were entitled to it. Not one single thing on this earth is because of that. Every thing is truly a gift. This moment, this breath, this memory, this love and pain in my heart – it’s a gift. Those moments, the good, the bad, and the ugly, they were a gift.  So even though these six months have been marked with pain, they have also been marked with an infinite number of gifts and opportunities to live with purpose and love more. We have encountered so many people who are suffering and yet they are giving, loving and sharing with others. I want us to do the same. We have so incredibly much to be thankful for, we should be sharing these gifts.

I wanted to share this video, well because I love it so much. I think I just loved this moment I had with Kai and this video seems to capture so well the sweet side of his spirit – it was a rare, quiet moment when Maya was first born and was actually asleep. Kai at the time had taken to sleeping on the floor and he decided this little sleep mat was his “new bed”.  You’ll hear him say “there’s no daddy on there”…. Ahh “kids these days” and their technology – he thought we were FaceTiming with Shawn and expected to see a smiling Shawn he could talk to.

Thank you, thank you, thank you for all of your support, prayers, friendship, messages, kindness, donations to charities, and so much more. We are sincerely grateful and would not be able to be still standing today without you all.



This week will mark our little baby girl Maya’s first birthday. Holy moly – I know they say time flies, but I just truly can’t believe it. Maya has recently become almost obsessed with watching videos of her brother on my phone. And in the morning if Maya sees a phone she points and says “Tai Tai” and so I let her watch some.

I love seeing him but it also makes me realize how much I took for granted and that pains me so much. Seeing his videos for the umpteenth time, I notice all of the little things – those movements, expressions, nuances of his voice that I know in my heart, but now notice with my eyes and I wish so much that I had just focused so much more deeply in those moments. I find myself watching Maya – the way she is discovering new things, trying out the different octaves (screeching) of her voice, her laugh and funny gestures. I want to be more present. I want her to know she is loved every moment. I don’t want to wait do those things. Don’t wait to give her that hug or tell her I love her even though she has no idea what that means. Don’t hurry her up because I “need” to run an errand.

I hate this but I admit that there definitely was a part of my life where I often lived in the future….Focusing only on what was to come, making plans, or thinking about what could be and not being in the present. I also admit that I did this a great deal when I became a mom – the immediate upside down flip your life takes hit me right upside the head and I grieved the loss of certain freedoms. Yes, in becoming a mom I also got to see how stinkin’ selfish I am. I was also scared because I didn’t/dont know how to do this whole thing —  make him stop crying or help him learn how to sleep, I kept thinking ok, when he’s so many months old it’ll be better, or I wish I could fast forward through this part. Oh, I hate, hate, hate remembering that I had those thoughts. I would give anything for those moments again.

With Maya turning one, I feel so bad because I feel like there is this chunk of time when Kai started getting sick and then of course the time in the hospital where my focus was Kai, and I feel like I missed part of Maya’s first year, I wasn’t fully present in the moment. I don’t remember some things.

A million different thingsare going in our lives, we get “busier” every second. Sometimes I feel like I’m living life in fast forward. But, it’s hitting me hard this week – STOP. The message, “don’t wait”. Don’t wait to live your life. Stop spinning and live it now. We all wait for the “right time” to do something, or waiting to feel less anxious or less busy or whatever the reason, but don’t. Don’t wait to live. Don’t wait to go after your dream or tell someone you love them, or reach out or give a hug.

I think maybe we wait because we’re scared or we feel something is more important. This is what I think causes me to wait at least. But I want to be better. And we’re scared of being hurt, we’re scared of it being too hard, we’re scared of the unknown. But, life is full of bumps and challenges we can never anticipate, prevent or prepare for and when they hit you have no choice but to deal with it. And we can.

I never in a million years thought any of this would happen. And of course I wish so so so much that this didn’t happen. But, every second of this pain means my heart grieves the loss of a love that is still alive — I get to love Kai, and I got to experience his life. What’s that saying —  it’s better to have loved and lost than have never loved at all – and as much as this hurts so bad, the love I feel for Kai is so much greater than that pain and there is no doubt whatsoever that it’s worth it.

So, please don’t wait to be in the moment. Don’t wait to live life. I realize I’ve learned this lesson in some ways a little too late. This a beautiful life amidst the broken-ness, and I don’t want you or I to miss one more thing.

And I do love how kids do really live in the moment, fully being themselves and not waiting to live. And if you feel like howling like a coyote in the backseat like our buddy Kai, you go right ahead.*


*(for those concerned howI obtained this video – yes I was driving, but it’s not what you think. I heard him doing this so I picked up my phone at a stoplight and then just pointed it backwards haphazardly hoping to at least capture the audio and somehow luckily got the video too)

Waking Up

I think we’ve all had moments where we feel we just need to get away – step outside to clear your head, do something completely different, or just close your eyes to rest. Admittedly, I have this feeling alot, every day – I think it may be why I now have to go for a walk first thing in the mornings when I wake up and then go outside and walk around the block after Maya is in bed. I think it’s still hard waking up and realizing Kai’s not here.

And it’s not that I don’t want to think about Kai – actually when I do “get away” from the house, I think about Kai the whole time and I want to think about him, but somehow it’s different when I think about him during the day seeing all of the things he’s not here with us for vs. me being outside by myself just thinking and remembering him.

The other week I had a dream about Kai. The dream was so real to me that when I heard a cry on the monitor that woke me up, I thought to myself, “oh! Kai’s up!”, and it took me a few seconds (you know that waking up fog) to remember oh no, that’s not Kai. And that realization hurt like someone jabbed me in the stomach and pierced my heart. But then, I heard Maya again. oh goodness. God, you are so gracious in creating this little miss maya, what an amazing, feisty little one she is. I am so thankful for this little girl and also the way she recently has been waking up – she now wakes up happy, smiling, babbling, showing her little teeth that are coming in. We didn’t experience these happy wakeups with Kai as a little baby — let’s be honest, Kai was what we call a wee bit of a grump sometimes when he’d wake up. But we loved, loved, loved going to get him each morning – I think we may have even rock/paper/scissors (or roshambo as some of you call it) on who’d get to go get him because as soon as we picked him up and he had his milk he would talk a million words a minute and want you to fix about a hundred different things for him for breakfast and he would crack us up.

I feel like I’m waking up multiple times during the day. Going through all of this, I’m more aware of the little things Maya does, that Shawn does, that each person I meet is doing. I realize that I’m becoming more and more aware of all of the pain/challenges we all are going through. This was kind of overwhelming at first and of course still is at times. But, I feel like God is trying to teach me and tell me through these wake ups that I can do more for others. And so I am trying to learn how to be a better mom, friend, neighbor, partner…. how to be a better “human”. It’s hard — I’m feeling more awake in ways, but then it’s so easy to forget or take for granted a moment — and I do know it’s impossible for us to be perfect in this, but yes, I realize that being awake, while maybe makes things a bit more overwhelming or painful at times, it also allows me to more fully enjoy and love others more than I have before. And honestly, I have these more overwhelming desires to do more for others and to love others better including Shawn, Maya, my family, friends, strangers, even if I’m not sure what to do sometimes. So I’m praying for guidance, courage to reach out, wisdom, patience, healing and everything else that God knows I need in my brokenness to hopefully do some good.

I want to be thankful for each day I get to wake up even with the pain knowing that Kai’s not here and not try to sleep this pain away but be awake and seek God and what His purpose is for me each day. And one day, whenever that may be, I will hopefully get to wake up in the next place, and Kai will be there to greet me.

Oh… and that dream I had about Kai…. I loved it, it was a memory of something I had to do manyyy times before and it was a gift for sure….but oh, little Kai, it wasn’t a sweet dream of cuddles or reading. My dream was of me having to chase after a disrobed, poopy Kai because he had dirtied his diaper and did not want me to wipe the #2 off his bootie….. ooooh that little stinker…..I love you little stinker.