Posts Tagged ‘Grieve with hope’

Getting Out and About

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.

Kai’s Quick Hello (and smooch)

My heart and mind have been swirling and churning and aching these past few days and honestly I’m not quite sure yet what all of those thoughts and emotions are. I feel restless but unsure what to do or where to go. After pacing outside for a little while it just came to me to come and sit in Kai’s reading chair where we spent each night reading a book, or two, or three, or “last one”, “one more time”. 🙂  Him in my lap or sometimes he’d insist we squeeze in side by side with Cat and owls and bees as well. I felt compelled to write on here but I’ve started and restarted many times and nothing feels quite right that I should post.

So I think maybe for now, I will just share a video of Kai Kai and also I wanted to be sure and say thank you so much for all of you who came out to the Head for the Cure Race in Dallas this weekend. Thank you so so much for your support and being there for Team Kai! We appreciate it so very much.

I had Shawn pull up the videos on the tv today so I could see him. I needed to hear his voice and see him move and jump and play and laugh and squeal and run around. I needed to see his life. When Maya woke up we set her in her chair so she could see the Kai videos on the tv and she squealed and smiled and clapped and kicked her legs. To her it wasn’t a video – she was with her brother and for a moment my heart swelled because I felt the joy of seeing the two of them “together” again.sunshine

That feeling reminded me that Kai is still alive and that my heart is growing with more and more love for him and that his sister is growing in her love for her brother and knowing her brother. In the midst of all that is broken, set apart or distant in this world, in no time at all, it is all brought together by a memory of love that still remains and is growing and full of life.

So I share this little video of Kai – I think he’s about 18-20 months old here (I don’t know where to find the date tags on iPhone videos).

Thank you, thank you, thank you so incredibly much for all of your prayers, messages, support, and so many things that help lift us and carry us forward each day. Thank you so, so much.

Sun’s out, Kai’s out!  I hope this brings a smile and a little light into your day!

I want…

I keep thinking each post will be the last post but then I keep feeling the nudge to post an update of some sort. I think I’m pretty nervous about this one, but maybe that’s the normal fear in being honest.

Through all of this, I’ve realized a lot of old “wants” and desires don’t really exist or mean very little to me now. But, I still want a lot…maybe even more than before.

I want to see Kai’s face, I want to feed him breakfast and fix his lunch. I want him to show me his new trick of how he’s balancing on one leg then does his variation of an Irish jig to switch to the other foot. I want to put his socks on his little feet and help him put on his “daddy” shoes (his running shoes that look almost like his dad’s). I want him to tell me that Maya needs a diaper with Elmo on it and not the one with just a heart. I want to be so exhausted from the day because I’ve been carrying him and Maya, running down the street after him, or tired from the climbing the stairs multiple times because he’s somehow made himself poop twice during nap time in efforts to stall sleeping, and so I must run up and down the stairs to get rid of the “woo-wee stinkyyyy!!!” before our house smells of… not nice smells. I want to have him sitting in my lap. I want to hear him say “car cominggg!” in the slightly Russian accent he would get when yelling that a car was coming down the road. I want to read him a book. I want to clean up the remnants of his day and see how’s he built toys into towers and trains. I want to peek in his room and see him sleeping there with Cat and his owls and bees.
But I can’t have any of these things.

And it hurts. It hurts so bad and I want to flail and throw a tantrum like a 2 year old, but that won’t give me any of those things. So I struggle. A whole stinkin’ lot. I really don’t know how to do this. But I must.

All of these things that I want are Kai’s life — and that still exists. Not in the form I’d prefer, but it exists because so many people still love him. I want to have my “old” job back as his mom taking care of him every day. But I still have the job of being his mom, but it looks different now and I’m trying to learn how to do this. I want to keep Kai’s memory alive. I want to always, every single day, remember his joy and tell his sister about him so she will know him as best she can. I want to give thanks for the gazillion things I have to be thankful for. I want, with every ounce of my heart and being, to make sure that Kai’s suffering, our suffering, anyone’s suffering, is not wasted and that I will be open and God will use me to do good in this world. He can make so much more good than there is pain, even if we will never be aware of all the good that happened because of this. I know He is doing that and I want to keep wanting and living with that hope that good will persevere and redeem the suffering.

Hearing Kai laugh makes me always laugh and it turns out he made himself crack up alot….especially with the anticipation of being tickled.

New Life

On April 21, we were given the honor and privilege to witness the 2014 Boston Marathon and cheer on our good friend Amanda as she ran the race in honor of Kai. As we all know, this race was way more than just a race – it was for redemption of a community; celebrating and honoring those who lost their lives; showing bravery and courage in the face of fear and giving a clear message that Love WINS. New life is here. We have all come together for this race.

I have been part of race crowds before, but this was like no other. We saw the injured – coming back, a different normal, but still standing. I wanted to ask every runner to tell me why they were running and where they came from. We saw Team Hoyt, the father who has pushed his son through over 1,100 different races in over 30 years, witnessing the amazing beauty of a father’s love for his son and desire to honor those who were hurt in last year’s bombing by running their final Boston Marathon. For every mile of this course people were lined up cheering and helping the runners along. And when we got to see Amanda and saw her strength and amazing joy it was absolutely thrilling. Amanda is one amazing person (not to mention stinkin’ speedy and such an athlete) and we were completely humbled that she would be running in honor of Kai and so thankful to be able to be there with her.

We were also given the honor and privilege to spend the Easter weekend with Shawn’s family. This was a a very special time to have together, but also bittersweet because Kai’s absence (and significant addition of volume and chaos) was clearly evident to us. However, we saw how Maya completely lit up when she saw her cousins and the clingy-ness she has been showing to Shawn and I lately, was immediately gone when they were around her. We’ve realized now that whether Maya understands or not, she is missing her brother. At the church service we were reminded of the New Life that Jesus promises. There was a beautiful spoken word presentation given and I admit it, I was bawling – I knew, absolutely knew, in that moment that Kai is there enjoying his new life in heaven, but my heart hurt so badly in missing him here in this life. But, this is grief amidst love and I know it’s ok.

When we were walking to meet Amanda to celebrate the race, we heard so many people thanking the runners. “Thank you for coming back”, “Thank you for running” “Thank you for helping our city”. Together those from Boston and from all over the world came together to bring the city its new life from tragedy.

Forever changed, still grieving, but amidst love and with hope for New Life.

April 21 also marked one month since Kai passed – time is a weird thing to me lately but this hit me harder than I imagined it would. However, April 21 also marked the beginning of a new life with the birth of my good friend’s son who was brought into the world also on April 21st. In honor of the new little munchkin, I thought I’d post a picture of a Kai when he first came into our lives. He looks a bit crazy and definitely doesn’t match (totally my fault), but I just love this picture so so much.

Kai just 2 days old

Kai at just 2 days old



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