Month: May 2014

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.

http://www.youtube.com/watch?v=HE3O6kqlSgc

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!

http://www.youtube.com/watch?v=5pbol8rmWZI&feature=youtu.be

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.

http://www.youtube.com/watch?v=Fr8Ql0Kk2-Y