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Turning 2, a look back

Yesterday was Kai’s official birthday. My little baby boy is 2!
It’s hard to believe he has only been in my life for two years. I can hardly remember life before him and I just can’t imagine my life without him.
All week I have been thinking back to the day of Kai’s birth, and then to his first birthday. As fast as it goes, it has been a long hard road for us so far.
And as difficult as his early life was, first getting NO sleep and fighting every day to find out why, then dealing with the shocking reality of diagnosis and treatment, nothing has compared to how hard these past few weeks have been.
When I see him in pain, struggling to sleep or eat or go to the bathroom I know I have made the right choice taking him off chemo. But on those good days when he wakes up and gives me a little smile and is happy and content just sitting in my arms, I am overcome with that urge to save him…to keep fighting…to do whatever it takes.

As I think back to his birth and then his birthday last year I am quickly snapped back into reality.
I look at those adorable pictures of him taking his first bite of his birthday cupcake. I see him smiling in his daddy’s arms. I see him holding onto a new toy, and it is so obvious how much he has lost since then. It is so obvious what a struggle his whole life has been.
Today I look back and see how much better he was back then, but if I really put myself back to that day, I remember just how bad I felt he was doing at the time. And to think it has only gotten worse from there…

Yes, a year ago he could eat a cupcake. He could sit up (if I was right behind him). He would smile. He would hold on, just a little, when I carried him. He could see.
But he also tired easily. He still couldn’t explore his world. He couldn’t stand or walk, like the other kids his age. He still hadn’t said his first word. He was recovering from shunt surgery. He had just gotten his g-tube and by last September the chemo was already starting to take it’s toll. This was not the life of a typical 1 year old. It was sad and it was hard and it was a million times better than where he is today.
Looking back, I would give anything to have that Kai back.
I have spent everyday since then wondering if he was going to make it. Wondering if we were doing the right thing by putting him through all of this. Questioning everything backwards and forwards. But each day we would see those brief smiles, that adorable frosting face, those big brown eyes, that little bald head, the glimpses of hope, the good days, the minutes of progress no matter how small, and how can you NOT fight for that??
But it’s different now.
As the months went on, and he continued to get weaker I blamed the chemo. There is no doubt the chemo has made him feel worse, but week after week at the clinic I would see the other brain tumor kids, our friends, going threw the same thing as Kai yet they we’re growing, advancing and living life. Meanwhile Kai was only falling further behind.
Every month I would question ‘When is enough enough?’, ‘Is there something more I can be doing?’, ‘How will I know when to let go?’. His team would say ‘We expect Kai to be a long term survivor.’ and ‘ There are many more treatments we can try!’.
So every month we kept fighting.
We have adjusted his meds, given him chemo breaks, tested him for everything and anything that could be affecting him, but nothing has helped.
It’s hard to look back, and since this all started it has been impossible to look ahead.
For My two years with Kai so far I have had to let it all go and learn to just live in the now. I have adjusted and accepted this life.
As much as I wish I could have eliminated his suffering and fixed him from day one, I can honestly say I don’t regret the process. I am not angry at the doctors for taking so long to diagnose him. I do not blame his team for having hope and encouraging us to push on in what seemed like a hopeless situation. This has been our life and each day, each decision was what we needed to do on that day. And so putting my future, my hopes and dreams for Kai, aside and to live completely for today…today I know that our decision to stop chemo is the right one. Kai has survived long enough. It is time to let him rest. Let him sleep. Let him snuggle and be comfortable. And eventually, one day, I will have to let him go.

29 thoughts on “Turning 2, a look back

  1. Kerri, Mark and Kai, I love you all so much! My heart is broken for you. You are so strong, caring, wonderful. I feel so blessed to have you all as friends and to have been able to spend time with Kai. I love his smile! I am glad I could be part of his 1 st birthday and hvae you come celebrate yours with us. Prayers of comfort and huge hugs. You are a wonderful momma Kerri!!!!

  2. Kerri, so beautifully honest (& painful), you have been nothing short of the strongest person I have ever known in my life. We love you, Mark & Kai so very much. And you are 1 of my real life heroes. Kai could not have been blessed with a better Mama on this planet. And we are so blessed to be a part of Kai’s life.

  3. Hi Kerri,

    I have been very moved by all of your commentaries but especially this one. I just read it to your mom over the phone and we are both very sad and teary. You’ve done very well through all of Kai’s ups and downs and I know it has been very very difficult for you and Mark. My thoughts, love and prayers are with you both.

    love

    John

  4. Kerri,
    Kai is so lucky to have you as a mother. You are amazing. Please know I am sending love and prayers for peace and comfort for all of you.
    ♥ Sarah

  5. What can I say Kerri. It almost seems ridiculous to even try “to say the right thing” You were chosen Kerri. You and Mark were chosen to give Kai unconditional and unending love. You have succeeded in that. You and Kai have inspired me. My life has been permanently changed. And despite the pain definitely for the better. I am thinking of all of you always and praying for Kai’s comfort. He adores you!

    Jen

  6. I, too, appreciate the incredible strength and honesty you and your family have shown in this entire process, and the incredibly advocacy you have shown for Kai. He certainly picked the right people to have his back! I know your decisions have been painful, but quality of life and comfort are essential. You three are always in our thoughts, with the hope that all of you get comfort and relief. – Stephanie B.

  7. Your amazing parents and Kai is an amazing gift too. Enjoy the snuggles, hugs, kisses and hopefully smiles. You both know what’s right for Kai. I’m sure you fill his heart every day…always :). Many prayers……thinking of you all.

  8. Kerri, I constantly struggle with the right thing to say to you about Kai but please know I care greatly. I have been equally concerned for you as I have been for Kai this past two years. I have a tremendous amount of respect for you as a woman and even more as the warrior mother you’ve become. I’m so sorry your baby Kai has struggled so hard this past two years. Every little gain at one point or another was that will to strive. He tried, he did put up a good fight. You both are exhausted. I wish you much strength to continue on without your little man. And peace knowing it’s for the best.
    Lots of love, Michelle

  9. I’m so sorry this happened to your little man, he is such a beautiful and strong baby!! You guys are always in my thoughts and prayers. Kerri, your strength and determination is amazing, hang in there, you too Mark!! I hope nothing but the best for you all!!
    Thinking of you all..Dawn

  10. Kerri, Mark and Kai,
    What words can possibly express what I feel for the three of you? There are none. Al and I have been following along with your blog, praying for you, wearing our “Fight Club” bracelets and always hoping and wishing for the best. Cherish every minute with Kai, all the smiles, snuggles, and sweetness that he is. Please let me know if there is anything I can do or if you need anything. xoxo

  11. Kerri,
    I agree with everyone in their pervious posts. Kai is so blesses to have family & friends that love him so much. You are truely a worior. Sending my love & prayers

  12. Kerri. I too don’t know what to say, Your post is hearbreaking and beautiful. I am here for you in any way that you need, in any way I can be. I will continue to fight for our kids. I. will. never. stop. Sending my love,
    Maria Joffrion
    978-230-2116 anytime

  13. There are no words….my heart is with you and I am pryaing for peace for all of you. For Kai, and all our kids, we must fight to fund research !
    Always with hope,
    Melissa

  14. Kerri though I have not met you in person, I can tell that you are an amazing mother to Kai and your love for him shines through every word of your post. I continue to pray for Kai and for you and for a cure, for Kai and for all of our kids.

  15. These kids depend on the adults to do the hard work, but really, THEY ARE doing the hard work of chemo, bone marrow tests, excruciating tests and all they ask of us to to find a cure, to walk a few miles, to swim or bike. They dream of doing those things that we see as a struggle, we OWE them a chance, we OWE them a life and we OWE their parents who gave them life, we owe them a hand to help in EVERY endeavor to find a cure for their kids and others’ kids. STAND UP and put your money where your mouth is, give and give again until it hurts and it will NEVER hurt as much as these kids hurt and their parents watching them. GOD BLESS YOU ALL WHO ARE AFFECTED BY CHILDHOOD CANCERS.

  16. You are by far the strongest person I know. We all love you guys so much and are thinking of you. I’m so glad you will finally be able to be with Kai without the chemo. You really have the best way of looking at things. I look up to you so much.
    Love,
    Sarah

  17. Kerri,
    We love you both so much. We wish there were some way to comfort you,but please know that the family is with you every step of the way and we feel your pain. We wait with you and wish that we could shelter you both from this sorrow. Our hearts ache for all that you are going through. Just remember, we are here for you.
    Nana

  18. The honesty and love you brought to this post brought many tears to my eyes. You have pushed yourself above and beyond in so many ways, and all along your love for Kai has guided you to making the very best decisions for him despite the inner turmoil and worry it has caused you. You’re a beautiful person and an incredible mom, and my biggest wish for all of you is that every moment of the life you’ll live together will be spent just as you described- living in the moment and taking it all in. When Eric and I are wearing our Kai’s fight club bands, I am reminded that this sweet little boy has impacted lives all over the place. Some people live a full life without inspiring others in that way, and you and your Kai have done that so many times over. I am keeping you all in my heart, rooting for you, and feeling so lucky to know you. Lean on me and on the rest of the people posting here in whatever ways you can- you deserve some rest, too.
    Allison

  19. Wow – such honesty – beautiful and full of peace in the midst of such difficulty. I loved meeting you and Kai this past summer at Camp Sunshine. You are a wonderful mother and your family will continue to be in my thoughts.

  20. Kerri,

    As Kai has grown and his needs have changed, I have watched you grow and change, again and again, always adapting your focus and outlook on his current needs. Your love for him, dedication to him, and complete selflessness are so inspiring. You are such a strong, amazing woman, with a huge heart.

    Your words in this post are beautiful. Your message is heartbreaking. You have so many people here who love and support you. You are always in my thoughts.

  21. KERRY,

    I am not sure if you remember me i was a t camp sunshine and i just want to say that i will keep your family in my thoughts and prayers
    Franchesca

  22. Dear Kerri,
    you are doing very well. I lost my son to a brain tumor two years ago (he was four then), and your beautiful fotos remind me a lot of my boy. I can see that there is a lot of love in your family, and that is all that counts.
    Love, Elsa

  23. Dear Kerri –
    We met this summer at Camp Sunshine – I was a volunteer. Just want you to know that Kai, you and your family are in my heart and in my thoughts. I’m walking in the Jimmy Fund Walk tomorrow and Kai is one of the reasons I do so. Sending love, hugs and positive thoughts.
    Mary Pat

  24. You are always in my thoughts and prayers. I have tried to keep up with how Kai & you and Mark have been. As I’ve read your posts on facebook and your blog I have been astonished by the strength, love and devotion you have had for Kai. Of course I expected nothing less. From the first day I meet you, I think you were about 7 months pregnant your love and devotion was already steadfast and he wasn’t even born yet. Know this, you have done all the right things. You’ve fought the GOOD FIGHT…Even in this your darkest hour, know that you have always done what was best for him. Letting go can some times be the greatest gift. I could never pretend to understand what you and your family have gone threw, but all I can do is try to support you in any way I can and I am been grateful to have meet you. As echoed in many of these posts, YOU are the strongest & most inspiring person I have ever met. I wish you, Mark & especially Kai Love & Peace. Andrea.

  25. Kerri-
    I had no idea this was why I hadn’t seen you in clinic lately. Please know that I am sending you and Kai so much light, love, peace and hugs. My heart is breaking for you. I admire your honesty and strength. Cherish your days with Kai and please give him a hug from me and Hailey.
    With love,
    Lisa (Hailey’s mom)

  26. Kerri …sometimes we can learn more from someone in 2 years that has never spoken a word than people who have lived a life time and have never been quiet for a moment…Kai has taught us all so much through your heart and spirit he has spoken volumes to what is important in life and you have taught us the true meaning of love and hope lived moment to moment – I am sadest when I think of all that Kai has suffered and still pray for a miracle xoxoxo

  27. Kerri & Kai –

    I can’t even imagine how difficult of a post this was to write. Please know we think of you daily and are praying for relief for you both! You are incredible mom to one amazing little boy, he has touched more lives in 2 years than most would in a lifetime. Still praying for a cure!
    Lots of love to you!
    Bre Serakos
    m/o Jack

  28. Kerri,

    I will forever remember you and Kai, your stories and will to fight has impacted me more than I can say. I am wishing for Kai’s comfort and happy days with his family and friends. You are a wonderful and dedicated mother and my thoughts are with you. I will never forget your little boy.

    Love, Sonia

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