These days I often find myself asking questions like ….wait, what just happened?!?!…..Is this real? Is this my life?…. I had a son, a little boy named Kai, right? And he slept in this house and he ate in that chair, and he talked to me and laughed with me and threw tantrums and refused naps and giggled and played…. Right? I carried him in my belly and felt him kick and squirm in there, and he was born and rocked our worlds…….. right? And then, I start thinking about when he got sick….the first time he had a weird episode that we now know was the cancer…. Never in my mind would I have thought it was cancer. How could we know? Should we have known? I honestly don’t think there’s any way we could have known. He was so resilient and darn it kids are always sick so we thought it was just a stomach bug or that he was randomly throwing up because he just did seven forward rolls, a spin jump off the couch, had his dad swing him around in circles upside down…. all after eating like 3 servings of dinner. Anyone would throw up after that…. Wouldn’t they?
It all seems so unreal. A number of days I feel like I’m watching myself go through my day. I am not trying to be, nor do I think I’m being fake – I never, ever want to be fake about this.But, I feel kind of split in two. I think there’s part of me doing well and living the “new normal”, while at the same time, having a very real, very present grieving side is, but I admit it’s such a weird feeling – seeing myself do things and interact and it is all real and is good but then having this part of me inside that is just sobbing and grieving and still trying to comprehend the fact that…. he died.
Is this for real?
Tell me this is an awful, terrible, horrible dream.
Is this for real?
There was a little boy named Kai and he did get sick with ATRT and he passed away.
There was a little boy named Kai, and in June of 2011 Shawn and I were given the utmost privilege to become his parents. And he did rock our worlds…. He still continues to do so. And he was real – his life, his joy, his ups and downs, the amazing-ness of it all, was and is real. Oh how I wish he was still here with us, I miss him with every ounce of my being and I want him to be real here on earth still. But he is – in my heart, in your hearts.
And God has blessed us with little Maya who is this amazing little person we’re starting to see emerge and has her own quirkiness and resilience…. And she reminds us, Kai Kai is real because when we love her we realize how in this crazy unknown way our hearts have grown so much through their two lives — with love of the same unconditional amount, but love for each of them in such different ways for the different people they are.
So I always do come back to the fact that yes, this is real – the pain, the longing, the events that unfolded. But this love for our son is real. And it was created by God and it is stronger and everlasting and will redeem this pain that is so real to us at this moment.
The picture I wanted to share today was a gift to me one day while I was really missing my little boy. I loved taking Kai on walks, we’ve always done that – as a newborn it’s the only way we could get him to sleep and as a toddler it was our time to go take a look outside (and for momma to get some exercise!). Now Maya is in that seat…. And, well it turns out that making yourself comfortable while riding in the stroller is something these two siblings share.
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.
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. Did 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.