Posts Tagged ‘brain cancer’

Letter to Kai – your 3rd birthday

I realize that this post may seem cliche or cheesey – so I feel like a disclaimer of this sort is me totally owning up to the nature of what I’m about to write. So here goes.

This 4th of July weekend, I’ve thought a lot about the word freedom. I remember when Shawn and I lived in Romania and learned what the people of Romania had been through in their history and seeing how many liberties and freedom we had, honestly, taken for granted. It was a needed wake-up call for us. I also reflected on how many sacrifices so many people have made for establishing this country – my dad had us recall what we learned in school back in the day – it was good to try and remember those things (though I admit, I had to pull up google for some things!). And then I think about Kai – I have these letters and notes that people wrote to Kai and I do have permission to share them anonymously and I will soon, but one of the notes was written on one of the folded cranes sent in and I remember it said, “you’re free Kai, free as a Krane” (yes, it was spelled with a K).

He is free.

Free from this broken world, the pain he was suffering. A new freedom. And as I think about that, I think about the letter I wrote to Kai last week on what would have been his 3rd birthday (June 27). I kept thinking – should I post this? Does it show too much broken-ness? Should I post something not so bittersweet? But, a wise and kind woman who has also faced (and beat!) cancer with her son, reminded me of the freedom there is in being honest about the broken-ness. We are all broken in our own way from our individual paths, stories, heck, just because we’re human. We’re in this together – and I guess this is me just saying, I’m broken, I’ll never be perfect, and I don’t know what/how this journey is supposed to look, so all I know I can do is be honest and try to look for the good….. to grieve with hope.

Thank you, thank you, thank you to all of you who were out there spreading light and love on Kai’s birthday. Thank you so very much.

Dear sweet Kai Kai,

Today (June 27, 2014) would have been your third birthday. Oh how I wish so much, so much that you would be here with us and we could have thrown you this celebration today and you would be here. I hope that you felt/saw/heard, however it works in Heaven, all the people here wishing you a happy birthday and loving you and then doing good, kind things for others in honor of your life.

Kai, I miss you so much.

There is such a huge hole in my life – you have not left my heart, but it’s just so different and so hard learning how to be your mom and love you from afar when all i want to do is hold you and talk to you and watch you learn and grow and challenge and investigate and run, jump, sing, scream, cry, talk and grow up. I would love to see you and Maya together.

We were watching our old videos of you and even seeing the one video your Dad had taken right after Maya was born where you were on the floor crying and throwing a tantrum and Maya was next to you screaming and crying and since we couldn’t figure out how to calm either of you we just decided to video tape it for the humor in it. At the time, it was so frustrating, but tonight it’s so funny how when I saw that video, my heart ached so strongly to be able to have that again with you. I keep thinking back to the last few months of your life – I keep thinking if I noticed signs you were sick or if there was any way we could have known. I feel so awful if I missed if you were in pain or if I made you “work out” your tantrum for too long when really it was the brain tumors that were making you unable to settle like you once did. I feel so awful Kai. I know that I didn’t know and that as your mom it was my job to love you which meant not only the hugs and laughs but the firmness and discipline and tears. But, I know there were times I lost my temper and I screamed and I hate that – and I know that I apologized to you and told you when it was wrong of me to lose my temper so badly but I remember your face and how sad you looked when I’d do that. Oh Kai, you were such a patient little boy when I was learning how to be a mom to you and your new baby sister and just had no clue what I was doing. You were so sweet to your sister, such a good, good helper to me.

I wish I had new videos of you and new pictures of you. I see your friends changing and growing up and I wonder what you would be like now. I know I’ll only ever know you in your little 2.5 year old body, but I feel like these days your spirit seems wiser or older somehow.  I’m so happy that last year you had such a good time in the backyard for your birthday party. I know that you had no idea what was going on but you were so so happy – Dad carrying you on his shoulders through the sprinklers and your half-smile in amazement as everyone sang you Happy Birthday. And kai birthday surprise 2013then THE best face you made when you realized what a present was and you opened Uncle Richard’s present and saw the dump truck and it was like the most amazing thing ever and you shrieked in such excitement. I want to imagine that when you took your first breath and opened your eyes in Heaven the joy and excitement and love you must have felt were infinitely beyond what you experienced here and your face lit up more than it did that day. And that’s all I ever wanted for you – to know you were loved by us, know how to love, and know that God is taking care of you always and you are safe and secure no matter what. Kai, we will always be here with you here and always celebrate you. I will always miss you and I think I will only be missing you more and more as the days go by – I can’t even imagine more of your birthdays passing by without you here. But we celebrate you today Kai – did you see the balloons? Did you hear your friends shout Happy Birthday? We love you so much Kai – you gave so much to us. And your sister – this morning, I picked her up from her bed to feed her and she was absolutely insistent that we look at your picture before she ate. I don’t know if you see her do this every morning – but you’re still being such a good big brother to her. I love you Kai, so so much. I don’t know what to say to express it, but I’ll ask God to let you know – I know He can tell you perfectly. Happy, happy birthday Kai. I’m so thankful to celebrate three years of knowing and loving you. mmmmm-waaaa!

Zilker Zephyr Train Redo!

Since our first attempt at the Zilker Zephy train ride was a little soggier than we expected, we thought what better weekend to try again then Kai’s birthday weekend. 5397b9c8e9cb6aa5025e955c
We’d like to invite you to come out on Sunday, June 29 to take a ride on the train, play onthe playground, say hi, and enjoy a few treats. We’ll be out there from 10:00 – 12:30ish, and feel free to come and go as you please, there’s no hard start time. The train runs about every 20-30 minutes.
Please let us know if you’ll attend by responding on the event listing on the Pray for Kai page so we can get a head count for food and train tickets.
Sun’s out, Kai’s out!

Kai’s Choo Choo Crew

In remembrance of Kai, the plan for today was to treat kiddos to rides on the Zephyr train at Zilker Park. The weather didn’t exact cooperate, so the train did not run, but that didn’t stop many of us from going down to the train and staying somewhat dry (yet cold) under the covered area. Thank you so much to those of you that joined us, many of who drove in from Houston or Dallas!53422918ac7ee9e4232ea4d2

Despite the cold and the rain, the kiddos there seemed to enjoy the train even though it was stationary, which was really all we needed.

And thanks to everybody out there in Kai’s Choo Choo Crew posting pics of your t-shirts! We’re blessed to have so many who care so much.
https://www.facebook.com/PleasePrayforKai

Be on the lookout for a new day and time to reconvene at the Zephyr. Thanks to great friends who put this together, we’ll plan to do this annually.

We missed sitting with you on the train today, buddy, but you were still there with us.

zilker train try 1

The Brave Little Soul Story

A number of you have been asking about the story that was read by Kai’s teachers at his celebration and I’m so sorry I’ve been meaning to post it on here sooner than now! I was sent this story by a friend from primary school and it definitely struck a chord with us. I’m not sure the background on it or anything, but I think it’s a pretty beautiful story.

The Brave Little Soul by John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”
God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”
The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity.”
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”
God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”
God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”
Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

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