It’s hard to look back and fully comprehend how different life is from a year ago.  Last year Kai was here.  Kai played.  He smiled and snuggled.  We were settling in to  this crazy world of pediatric cancer.   We were staying the course and sticking to his chemo.   He was stable. 

A year ago we were fighting.  We still had some sense of hope….

In so many obvious ways this has been the most difficult and trying year of my life.  2012 will always be the year my baby died.  I want so badly to say I am  glad for this awful year to end, but this was also the year where Kai did most of his living,  so it is hard to see it go.

I will admit, when I first think back,  I think of 2012 as the year of slowly watching him slip away.  Such a delicate decline that sometimes I  didn’t even notice from one week to the next.   Every day our reality became something new.  We adapted and moved on because we had to but as Kai’s personality, abilities and strength faded from one day to the next, so did our hope.

Hope is a funny thing.  At times I have felt guilty for not being hopeful enough.  At other times I have resented the whole premise of hope- as it seemed to me, nothing more than a failed attempt at tricking myself into a life I was not living.

It was a dark year at times and as much as I wish to believe the promised hope and rejuvenation the new years tends to promise,  I am sometimes afraid the darkest days have yet to come.

For all of the heartache and disappointment I am still not ready for 2012 to end.  I actually wish I could relive it forever.    Spend everyday with Kai,  solely focused on him.  I got to know him this year and he helped me get to know myself.   We lived a lot.   We had the opportunity to do some wonderful things and meet some amazing people and ALL of these experience with Kai, the good the bad and the ugly,  have changed my life forever.   As devastating as the last few months have been it is hard to imagine a better year ahead.  A better year without Kai just doesn’t seem possible.

I feel like I have lived most of my life in fast forward, thriving on the possibility of what’s next.  So excited for the future that it is sometimes hard to enjoy the moment.  That part of me seems so far away now.

Having a child with a brain tumor changes that.  Living with Kai changed that.   For the past two years I was incapable of thinking of the future.  I made no plans or commitments other than to be with him.  It was an adjustment to live this way, and at times it made me feel very lost and alone.  At other times it was liberating.  We did what we wanted, whatever Kai was up for that moment.  And that was enough.

Now that Kai is gone, the future is hard in a whole new way.  It is hard to thrive.  It is hard to be excited or to put hope into the possibility of something better ahead.  At the same time I am incapable of living in the past…it just hurts to much.

But maybe this is how it’s supposed to be.  Maybe today is enough.  Maybe in the joys and heartache of 2012 Kai has taught me the true lesson I have been fighting against my entire life.  Because of Kai (today, at least) I can truly live in the present.

I really have no other choice; it is the only way I can survive.

So instead of recapping the last year or looking ahead to the next I will say this; Today, right now,  I miss him.  I feel lonely and lost, inspired and invigorated all at the same time.  .  I am savoring the past year we spent living side by side, I am open to the future and I am also perfectly content just feeling today for today.

I really have no other choice; it is the only way I can survive…


28 thoughts on “2012

  1. Your blog is such a beautiful testament to your love for Kai, and a lovely memory of all the happiness, hope, sadness, pain, joy and heartache that the last few years have brought. It is a treasure.

    Love to you and your family as the days go on and Kai is forever alive in your memories Xxx

  2. Dear Kerri –
    Continuing to keep you, Kai and your family in my heart and in my thoughts. Wishing you peace in 2013. Sending love and hugs.
    Mary Pat


  4. I had very similar feelings as you at the close of 2011. It will always be the year in which my daughter died but she also did most of her living in 2011 and I spent most of the year WITH her. When we changed years it felt like I was leaving her behind somehow. And it hurt. It still does. This New Year has been hard too, as we move further from our darling. But it also doesn’t sting like last year did. You will survive. One day at a time. One moment at a time. Impossible as it seems to continue without Kai. Impossible as it may seem to breathe without him and to survive without him. I wish you peace and hope for the 2013. Much love, Em

  5. KERRI – today is enough … day by day there is no rush to anything many people do not go through so many things as u have gone thru in their life time . Kai was and is wonderful. In every way … even though he is not physicaly here with you and with all of us his spirit will be with you and next to you forever … I believe its hard for you and no one will ever really understeand how are you feeling , its ok not be strong all the time , even when u feel lonely there is so many people that wish they could be with you just to give you a hug and be a support for you . U have done so many amazing things … even when you think you are not strong you dont even realize how strong you are in eyes of all the people that follow you and all the people that join Kais Village
    YOU have though many people how to value life and what really matters in life . You are absolutely amazing . Remember there is always someobody thinking of you . BE strong hugs and kisses XO ❤

  6. When I am in despair, I bury myself in the Psalms.

    “I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the Lord.” (Psalm 40:1-3)

  7. You are more right than you will ever know!!!!!! Today, and only today is enough!!!!! You have reminded me that the only true living that can be done is in what is happening NOW, TODAY, in the moment. I continue to think about you and your family daily and am thankful for your posts, as I feel your undeniable wisdom can cast light for us all…..TODAY, right NOW you have given me new hope in the struggles that I deal with daily in my personal life. TODAY right NOW I realize that, that is all I should be worried with in order to get by!!!! Thank You So Much!!!!

  8. Today is all you need. You are an amazing woman and mother and have inspired people across the nation to just breathe, slow down, and enjoy every minute in this crazy thing called life. Your love for Kai is truly unconditional and knows no boundaries. Through the heartache, as well as the joy, Kai had the only thing he needed in this world…the true, unconditional love of a mother. A mother who held him, a mother who touched him, a mother who knew him better than anyone else, and a mother who would sacrifice anything for him. Many babies in this world do not have that luxury in their trying times and Kai was so very blessed to have you in his life, just as you were blessed to have him in yours. Time passes, but healing take a lifetime. It’s ok to cry, it’s ok to scream, it’s ok to withdraw, it’s ok to just be. Thinking of you and sending you all of my prayers.

  9. Kerri-
    You are so amazing. Thank you for posting. I continue to pray and think about you and your family every day. All we can do is live for today. Each moment at a time! May God continue to give you the strength and the wisdom & health & peace. Sending love and prayers and thinking of you and Kai always! Xoxoxo

  10. I followed a tag or two of this post and ended up at your Letters from Camp. You talk there too about living totally for Kai, immersing yourself in your life together, relishing the HOPE that you felt that you would find your way to the other side of cancer, and relief being yourself around other people who totally got it.
    You expressed it beautifully and poignantly. The hope and excitement was jumping off the page. That to me summed up 2012 for you. I thought you were hopeful to the end of Kai’s unfairly too-short life.

    Please don’t lose your lifeline, the people here, in the present, who need you, love you, admire you, worry about you, want good things for you, empathize with you, look after you, and you look after. I’m certain Kai was not the only one, although undoubtedly was and always will remain the most important one ever. As alone as you feel, there are 7 billion people in the world. I know that a good handful of them at least care very deeply about you. As of this minute, 1,122 of them consider themselves a member of Kai’s Village, raising up his spirit and his memory. And at least 680+ of them are checking up on you and Kai, and sending their hearts and prayers out to you. Not many people can say that. ❤

  11. This is just what I needed to read at this very moment in my life. You are so right in every word written. Think of you often. Sending warm thoughts and hugs.

  12. Kerri I truly believe you are a liaison for the Lord. Your words, your thoughts are so inspiring and true. I hate that you have had to endure such pain, I wish I could do something. I wish I could take it all away. But I think that the mere thought of wanting to do something, of sharing your pain is exactly what God intended. You have connected so many on a deeper level. Your pain will ease. I believe that with all my heart. And Kai waits for you, always guides you, and will always love you.

  13. Today is as important as any other and so it is enough to live that way. You have every rigt to feel all of the things you are feeling. Your words are an inspiration. We have been thinking of you and wondering how you have been doing. Thank you for sharing all of your feelings with us.

  14. Kerri, how I wish I had the words to surround you in a comforting embrace and ease even the tiniest of your pain. Your beautiful words have allowed so many to pray for and grieve for your precious Kai. He is the sweetest of angels. I, like so many, have been so touched by him and you. In his short time here, he changed lives. I think about what I want for my own children, and Kai accomplished it all. He loved and was loved and he changed the world for the better and he is happy. Although I was not fortunate enough to have met Kai, I think of him daily and last night in my dreams, he played with my children. I pray for Kai and you daily. I pray for you to have strength to get through each moment, for peace, comfort, and hope.

  15. Kerri – your posts are amazing. So hard to read and so compelling. I think I can safely say that all of us reading your words are simply blown away.

    Your son was a wonderful little person – whose life was so short. I love seeing his gigantic smile in your photos. I can’t imagine or begin to understand what you must be going through…

    I only hope you will continue to embrace whatever support you need and that you are as kind to yourself as possible in the days ahead.

  16. Survive however you can. Be as untethered and unfettered as you need to be as you savor your memories and take each moment as it comes. I wish there were good, helpful words and hope you have as much or as little contact with other people as you need right now. Take care.

  17. Kerri, reading your words always helps me to remember what is important… you and Kai have changed my life. You have made me a better mom. I think of you often and perminently have a picture of your beautiful little boy in my mind always. Please know that so many people are sending you love and peace and healing prayers… I am hoping that knowing this can ease your pain in some tiny way. Sending hugs…

  18. I continue to think of Kai everyday. He touched my heart in ways I can not describe. I pray in 2013 that ou find the strentgh to continue to live life and maybe enjoy it again in some ways. May God bless you and keep you, may he wrap he arms around you and your family and comfort you…and when you think you cant not bare it anymore..close your eyes…Kai will always be there…in your mind but mostly in your heart..just ive yourself time to feel him ❤

  19. Hi Kerri – i was just stopping by to give you a big hug and tell you that you are in my heart in my thoughts every day . i have been reading some of the older posts from few month ago i like to go back to them and think about Kai . I have to truly say that knowing Kai and you thru your blog makes me feel like you are my familiy . I miss Kai so much . i know he is happy right now looking down on you and all of us , and i believe he is happy from all of ur accomplishments and Kais Village …. Big …big hug for you Kerri ❤

  20. Just wanted you to know that I was thinking of you today and wanted to come by and give you a big virtual hug. As most often with your posts, this one brought tears to my eyes. I can’t imagine what it feels like to be where you are now. What a beautiful little boy Kai was. Big big hugs.

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