I am trying to keep perspective and look for my lessons in all of this.
What is Kai trying to tell me?
What am I supposed to learning?

I woke up fairly early the morning after Kai’s service, after going to bed around 1am. I was mad at myself for not sleeping longer but once I was up that was it. It was so quiet. My arms were empty and the air was cold. I didn’t want to get out of bed but I was restless. I laid their thinking of all the ways I could fill my time that day. My mind began racing with errands and tasks I could or should be doing. Racing to fill the time and mask the fact that I really had NOTHING to do at all.

As I got up and walked to the living room, avoiding even looking in the direction of Kai’s room, I realized the world outside was covered in a soft blanket of pure white snow. Suddenly the cold in the air felt right.
This is what I needed. A sign to remind me to just be and do nothing at all. To rest and snuggle and stay warm and finally take a few moments for myself.
I sat quietly all morning, just me and the dog on the couch, literally doing nothing. I thought about taking a shower or making some breakfast but when I got up I just paced around the house. I haven’t been able to just wake up and take a shower and make breakfast for myself in two years. It was like I forgot how, it just didn’t feel right. I didn’t feel like eating or getting cleaned up for the day.
I still cannot stand to turn on the TV. TV is normal mundane life, and I don’t live there anymore. The commercials and sitcoms and Christmas, its all just to much…or to little. It’s a waste of time when I have nothing but time to waste but I can’t stand it. I’d rather sit in silence in front of a fire all day just staring into the light. Fire is real. It’s warm and snugly and simple. It’s just enough right now. And what better way to spend a snowy Saturday than curled up next to a crackling fire anyway.

After Mark woke up we ended up going to the funeral home to pick up the plants and some of Kai’s things…oh and Kai. When I picked up the urn, the funeral director proudly told me the urn was securely glued, so I didn’t have to worry. I felt my heart sink… ‘what do you mean it is glued?’ I didn’t know it would be glued. I still haven’t decided what I want to do with Kai’s ashes. Will we bury them, scatter them, put them in a necklace to have and to hold forever? I felt like I wanted to see the ashes, maybe even touch them. And now they were trapped in this cold little urn forever?? I wanted to smash it right there in the parking lot just to see what would happen. I wanted to throw a tantrum and yell and scream and cry, because now I would NEVER see my baby again! But I held it together. I smiled and said it was ok and that I would figure it out, and I packed up the urn with the flowers and photos in the back of my car and drove away.
I really had no plans for the ashes, it was something I have been struggling with for weeks. I tried to convince myself that this was a sign. A sign that the ashes don’t mean anything. That Kai is gone and holding onto these ashes doesn’t bring me any closer to him. I tired to convince myself this was a lesson in letting go.
I asked Mark if it would be okay to visit some of the cemeteries in town before going home. We had been considering getting a plot for Kai, a place we could go when the rest of the world was too much to bare. A place where anyone could go when they thought of Kai or wanted to talk to him. I have never believed much in cemeteries but since considering Kai’s death the past few months the thought of having a place to go started to make some sense. I figured if he was glued shut in there, maybe we should just bury him and that would be that. Maybe this was what was best after all.
So we went.
Apparently there are 5 cemeteries in town. I knew of three. The first one we went to was on a street I rarely drive on. It was tucked away set back from the street at the edge of a lake. There are old tombstones in the front sitting a top small tree lined hills. The grass and stones and roads were all covered in snow, but you could see tracks from a car that drove thought the gate earlier in the morning.
It sounds pretty nice as I describe it here, as far as cemeteries go anyway, but as we drove through up past the old stones into area where the new plots are being placed…well it just felt so wrong. We pulled up over the hill to a flat empty field. There were about 20 shiny new stones in the left corner of the field. There were mounds of new dirt and grass covering freshly buried caskets. There was a fence way in the back keeping them all in. Not a pretty white picket fence, just a fence. It looked like a new development where only a few houses had been built and the rest was just desperate dirt plots waiting for someone to claim them.
I don’t want it come here to remember Kai. I don’t want to sit here surrounded by shiny stones of people I don’t know, with my little baby under the earth trapped in a urn glued shut. I don’t believe in cemeteries I never have.
Mark tried to see the bright side of the place. He saw the lake and said that would be nice. He liked that it was far off the street and mentioned it probably won’t look so bad when the weather is a little nicer. I pointed out that the dog seemed pretty anxious in the back seat since driving into this place and I think we should try to check out another one.

We drove around town and found two more. The second was even worse than the first and the third we just drove past.
We spent the rest of the day at home and glancing over to the urn on the mantel, It felt ok. I discovered that since it is glued so tightly shut I can turn the urn upside down and listen to the ashes move from one side to the other like a rain stick. It sounds chunkier than I imagined. You can here fine dust, but also bigger pieces. I wonder if those larger pieces may be metal parts of his shunt or many pieces of bone.
Is it weird to wonder these things? Is it weird to listen to the ashes moving back and forth? To want to open it up and touch them? I’v always been this way I guess. No matter how terrible a procedure Kai had to go through or how bad the outcome looked I’d rather be there with him, know the truth, experience it fully. I guess it’s no different now.


55 thoughts on “Lessons

  1. When Eva died I wanted to touch, hold, caress her ashes. Let them run through my fingers. There were times when the missing of her was so bad that I wanted to taste her ashes. And her urn was glued shut too. Something I didn’t expect either. As time has passed I still occasionally envision breaking into that urn but it’s not as all-encompassing as it was in the early days. Eva is on a shelf in our living room. It feels right. Like she’s still here (I know she is not, but I hang onto the shreds that I have). And if we buried her we realized that we could never, ever move. This way, if we move, she moves with us and when I am dead and buried, her little self will get buried with me. Although I must admit there are times when I wish I had a place to go to ‘visit’ with her. It’s not a choice any parent should ever have to make and I’m so sorry that you have had to walk this road.
    Much love,

  2. I lost my wife in July due to complications brought on by Leukemia. I buried some of her ashes in an old cemetery surrounded by wheat fields in her home state. I have the rest on her dresser. Her ashes were powdery white, I saw them as they transferred them to the case they will be kept in with me. It’s still feels so surreal, like she will walk in the door or I just have to keep looking hard enough and I will find her. Don’t know what you believe about heaven but one of my wife’s desires was that when she got there God would allow her to look after all the children. I know she will look after your Kei.


  3. You are such an amazing mom! I am so sorry that you have gone through this unimaginable journey of losing a child. Kai was such a darling little guy! Would have loved to have known him! Your journaling was/is so moving. No parent should ever lose their child. It is hard to think of the right words to say, I am just so sad that you lost your sweet baby. I lost my baby girl that was born too early four years ago and it still hurts. I have her ashes that I keep back to my bed on my nightstand, I guess it makes me feel like she’s always close to me. I actually looked at her ashes the other day for the first time. I don’t know why, I just felt like I had to.
    I haven’t told anyone until now. (the mortuary taped hers up real tight too) I truly believe that your baby boy lives within your heart and you will see him again some day. Know that someday if you decide have another child, it wont take the pain away completely but it will be like a HUGE Band-Aid on your heart. (ok…I’m crying now) I have gone on and now have a three-year-old boy and one-year-old boy/girl twins. I feel like my baby girl lives inside all of them and it gives me a glimpse into what she would have been like…

    This is a beautiful song that says it all…… Precious Child by Karen Taylor Good.

    (hopefully the link works)

    Big hugs to you from California!

  4. Kerri

    You continue to amaze me. You are such an inspiration and a wonderful writer so much so that I think about you and Kai on a daily basis. Your writing is so powerful and contains so much emotion. I look forward to new posts to hear how you are doing. You do not know me I am a friend of a friend of a friend but I just wanted you to know the kind of impact you and Kai have had on me. The fact that you are still in my daily thoughts says it all. I am looking forward to attending events in memory of Kai and donating to organizations that help families with children that have been diagnosed with illnesses. I would say Kai did his job here on earth with the help of his Momma’s writing. Thanks Kerri for sharing you and Kai’s journey.

    Erica R.

  5. My heart is breaking for you. You really do have so much clarity, and you already know what to do – you need to do what feels right for you, Mark, and Kai. You need to just be still, experience life in the present, and when the moment is right you will know what to do. Sending you so much love, light, and hugs.

  6. We have never met – but I was led to you and Kai’s story and I feel your strength pouring through every word you’ve written. You are an inspiration to me. Kai is an inspiration to me. You are in my prayers and thoughts. Thank you for sharing your experiences. BIG HUGS and well wishes sent your way.

  7. Dearest Kerri –
    My heart aches for you, Mark and Kai. Take the time to just be and the answers to where Kai should be will come to you. You know him best, just give it time. Sending you love and hugs and thoughts of warmth and peace.

  8. Oh Kerri, your honest words are so appreciated. I do hope you continue to use
    writing as a catharsis.

    Honor your feelings, whatever they may be, as they are the right ones. You will know when you find the right place for Kai. For now just feel the love that surrounds you as we all send peace your way.

  9. Kerri, I have never been in your situation but can completley see how you feel with the urn being glued shut. If you don’t mind me saying…. I feel that a lesson that you should pull from this whole experience from your most incredible journey with Kai is that you are an incredible, captivating writer. You truely have a gift with words and are able to share yourself in such a way that people can feel every word. Through the tough road that had to be taken you are able to give light and words to experiences that some may never even know. And through that make people aware so that more get involved to help find a cure and less caustic treatments for more little boys and girls!!! I hope that you continue to blog with updates…you inspire many which I think is why you, Mark, and Kai are thought of on a daily basis by many!!! My continued thoughts and prayers of peace for you and your family.

  10. I have a friend who lost their son a few years ago and they have a little knickknack shelf in their family room with his ashes a bunch of cute pix of him and some of his favorite toys and his teddy and favorite book. I love looking at it and it gave them a place to keep those treasures and keep them near to their hearts and in their everyday lives

  11. The way you are going through this is so amazing to me. The strength and love and compassion that you have are truly a gift from God. As I was reading your posts I thought this women should write a book. You put your feelings so well on paper. Just a thought. May you continue to have strength. You have inspired me even though I have never met you. I will continue to pray and I will never forget you or Kai.
    God bless

  12. Kerri, Nothing you are thinking or feeling is weird. It is all a process you need to go through, and that process is personal and different for everyone. Your heart will tell you what is right for you. I continue to pray for peace, strength and comfort for you and Mark.

  13. Kai will forever be with you. Every moment you are alive, Kai is also.You are such a strong person Kerri, but it is ok to fall apart, cry, be angry also. Even in a heartbreak I could not even imagine you still continue to share your beautiful miracle Kai with us all. May God surround you with loving arms and may he bring you comfort and peace.

  14. Kerry thinking about you and sweet Kai. You have been through so much. There is no right way but your body and mind has been on overdrive taking care of Kai. It is now your turn to rest, heal and allow others to care for you. May God heal your heart and know that Kai has made a difference in thousands of lives. He is a treasure. Wishing you peace as you move forward with Kai in your heart. Keep writing and keep telling Kai’s story you have the talent to keep changing lives and spread Kai’s message to an even bigger village. Your message is love, pure deep unconditional love that you shared with your baby boy and how the horrors of childhood cancer can never break your bond.

  15. Love, it isn’t weird or wrong to do any of those things. If listening to Kai’s ashes move brings you comfort, than do it. Don’t feel pressured to find a place for his ashes immediately. When the time and place is right, you and Mark will know it in your hearts. For now, just breathe.
    You are both in my thoughts.

  16. Nothing about your feelings is weird . Every mother i think would want to do exactly the same thing . Do what you think is right and allow yourself to just be …. Kai is there with you holding your hand and cuddling with you on a couch you cant see him but he can see you … we love you and we think abut you all the time ….<3

  17. Kai has given you a wonderful gift as you already know. But your ability to share the details of your joy and sorrow is the most wonderful gift. I have never met you, but through your words I can feel your love and your pain. Please in Kai’s honor, continue to write and to share your life. In doing so, you are giving his life a true voice.

    Wishing you personal peace and the love of a person, even unknown to you.

    Shalom, Peace, Nam Myoho Renge Kyo

  18. My heart aches for you. How I wish I had words of comfort for you, to ease the pain. Know that whatever you do is right, none of it is weird. Kai is yours and will always be with you. There is no rush to figure out what to do. Praying for peace and comfort for you.

  19. Kerri,

    I found your sweet angel Kai’s blog on my good friend Robin Dahill’s Facebook page. Robin is a close friend of mine from the Respite Center in Hopkinton. I met Robin 13 years ago…I can’t believe it’s been 13 years: (

    I met her along with Sharon and Mary and all of the amazing people at the Respite Center. It was the beginning of April and I brought my 2 1/2 year old son Connor there for the first time. I had been introduced to the Respite Center by Linda Collins Connor’s Perkin’s teacher who had been raving about them. He had a great time and was cuddled and loved by everyone who got their hands on him. Sadly this would be the only time that Connor made it to the Respite Center. He passed away suddenly the following week.

    As I read your blog I am brought back to that time of my life. My heart aches for you. I am so sorry for your loss. The quiet house… the phantom beeping … the thoughts of what of their body is left behind. These are all thoughts that I remember and still have sometimes.

    The raw visceral pain fades with time. But it never goes away. I don’t think I would want it to. It is my tattoo…my reminder that life will NEVER be the same. Our sons have changed our lives… they have changed many lives. As time passes you will see Kai’s ripple. You will hear stories of lives that he has inspired and changed. It will continue to ripple forever. I am sure you already see it.

    Kai was such a beautiful boy. The pictures of him bring tears to my eyes. I am glad that he is at peace and I hope that you will soon begin to find some for yourself. Take care.

    Peace and Hugs,


  20. Hi Kerri,

    Your feelings are normal. I think I would be feeling the same way you are feeling about the ashes. I have read some of the comments here, and they offer great advice about putting the ashes in a shelf or location in your home. If you like, make it a special place where you put flowers at time. He was and will always be in a special place in your and Mark’s life. You and Mark will see him again once again, in due time. In the meantime you are doing all to go on, and you will. No matter what anybody says, one cannot get get over the loss of a loved one. We just learn to accept it, we miss them everyday, but at the same time, we start leaving life again. Cherish the good memories, hold them close to your heart. And little by little you will get into the new normal. Keep being strong, and vent and grieve when needed sweetie. I feel that i have gone through this journey with you, and i thank you for letting us in. xoxo, Yessenia

  21. Kerri, It is so brave of you to continue to share your thoughts as you are processing through your grief. I wish I had a way to give you and Mark some comfort – especially in these early days. Life will come back, but it will be a new normal and it will take time…As for what to do with the ashes – life has interesting ways with presenting answers for us….the right thing will come in time, it will make sense – and you’ll know it is right for Kai. You and your family are in my thoughts daily. My heart aches for you, and I wish you all comfort and peace as you move through the coming days and weeks.

  22. Thinking of you, Kerri, on these days that are at once too quiet and too noisy for you. My hope for you is that you can continue to do what feels right and best for you, and know that none of it is weird or wrong or any of that. No one knew Kai like you did, and no one knows what you need now more than you do. Love to you always, friend.

  23. Continuing to hold you, Mark, and Kai close to my heart. Wishing you peace and strength as you grieve. Please don’t doubt your instincts and choices in these next steps. Much love.

  24. Someone suggested Maureen Hancock. I don’t know if you would be open to seeing her (or someone like her), but I was thinking of that, too. I know many people who have found her to be very comforting.

    I’m so glad you’re still writing. I am one of very many people who think of you often and wonder how you’re doing.

    Praying for you and sending love your way.

    1. hi… I’m the person who recommended Maureen Hancock and her Postcards from Heaven event…. I have seen her five times in the past year and she is by far the most awesome experience I have ever had… check her Facebook page out and become her friend…. I can’t say enough about her and the work she does for others who are dealing with a loved ones death…. she is AMAZING…. 🙂

  25. Kerri and Mark, I’m thinking of you always. Every day I get up and go about my day mostly in peace, but every now and again a wave of sadness overcomes me reminding me of your loss. I tell you this not to make you feel bad but to tell you I welcome those moments. Because after the sadness subsides and it always does I am filled with great peace, warmth and comfort. I believe that is coming directly from Kai. Your little one will always be with I believe that, but however you want to honor him is completely up to you. If a place does not feel right then it isn’t. You will know in your heart where Kai would like to be. Listen then follow his lead. His goal is to give you both everlasting peace.


  26. During the day today, as with so many days, my mind kept drifting to you and Kai, although I only know you virtually (am a family member of a friend of yours). I was trying to think of beautiful ways to memorialize Kai. An idea that came to mind, that I cannot help but share with you, is a statue; which could even be made in Kai’s image if you so desired. I know a family in town who lost their daughter in the World Trade Center, and they had a beautiful statue made of her. The sculptor made it from a photograph. Perhaps it would be comforting to look at the beauty of Kai in 3D. I am sure you will get many suggestions and ideas, but most importantly do what is right for you. You loved Kai so completely and so beautifully. Your heart will know what to do.

  27. I, a total stranger, still think of you and your beautiful Kai each day. His sweetness and bravery touched us in such a powerful way with the help of the words of his wonderful mama. I don’t think that any of what you are feeling is “weird”. I think it is real. I want you to know that we, your virtual “family”, care about you and your family very much and are here to listen. Prayers for peace.

  28. Dearest Kerri,
    My heart aches for you and Mark and I am praying for more than anything for Kai to show you, to give you a sign, for you to feel his lead. I know he will. Continue to just be, be in the moment, absorb it…we are praying for your peace, and your strength and comfort as well. Kai has touched so many and we will always remember him and all of you. Remember to take care of yourself momma, it’s okay.

  29. Dear Sweet Kerri and Mark,
    I’ve been out of the country since August so when I logged on today and learned about Kai’s passing, I wept for you and Mark. My heart aches for you and I’m sending love from afar. I hope you can find comfort in knowing how much Kai felt your love and protection. You and Mark are strong, beautiful people and I wish I could wrap my arms around you right now. Be good to yourself and each other. Sending love and prayers and warmth your way. I hope Syd is now keeping Kai company running and playing in the fields. I love you both!!!

  30. Kerri, Although I don’t know you or Kai personally I feel honored to have known you both through your blog and think of you often. I have learned about two amazing people each with extraordinary strength. I am so sorry for what you have gone through and wish I could do something to change your situation or say something profound to help you feel better. But since I can’t I hope that just knowing I (and many others) think of you with admiration and respect can help in some small way. You and Kai have touched thousands of lives and changed the way people think. His fight and drive was remarkable as was yours. He has found peace now and although you have the difficult task of adjusting to your new life without his physical presence I pray you can find some peace knowing he is still with you, though in a different way. Knowing he has made a huge impact in his two short years. Knowing and feeling proud you have done everything for him and that he felt your constant love and devotion every day of his life.

  31. Oh Kerri, I am so sorry to hear about Kai! 😥 Ann had wrote me an email that I just able to read last night and my heart just broke, I instantly started crying. I wish I knew sooner. Kai is such an amazing little boy and an inspiration to all who got to know, even if it was for a brief time. Alithea talked about Kai before we went into Perkins on her last day. I told her we were going to say bye to all her friends and she said “I see Kai” which she had never done before. It was a bitter-sweet moment because I knew she wouldn’t be able to see or say goodbye to Kai but she remembered who he was! I think our babys have a special way of connecting with one another in ways that we will never fully understand.
    You are an amazing mother! And an extremely strong women. Words can never express how sorry I am that you only got to know Kai for such a short time, but you made what little time Kai did have here worth it and the love that you have for your sweet little angel will never go unnoticed. I’m sure you have many friends and family to love and support you but if you ever need anything or ever want to get together, I would absolutely love if we could keep intouch.

    Much love to you & your family<3
    Love, Rachel, Alithea & Destynee



  33. Hi Kerri- Checking in on you and your blog at Love Bus. We are holding you and Mark as well as the rest of your family in our hearts. Please think of us if we can help you with anything. Call Beecher if you want to talk. Just so you know Lucy is right on the shelf in her living room and it has been over 6 years. There is no rush to make any decisions. Just take care of each other right now and be gentle with yourself. Sending lots of love! xo, Leiza

  34. I could never begin to tell you that I know what you are going through. I can tell you that your journey has been incredible. Kai has completed his job here so now its his turn to rest. Yours is still not done. You have touched many people by your amazing honesty and the way that you write. I would definately feel like you do about the cemetery. I would want him close to me at all times. I had some ashes turned into a gemstone of someone I lost. I reach up and touch the necklace. It is comforting to me. There are several websites. It might bring you some peace.

  35. Sending many hugs and prayers for you, Mark and Kai. I am absolutely devastated over your loss. You have proven yourself to be a strong and courageous mother. The world needs more parents like YOU. Please be well. Please never lose your capacity to LOVE. You have such a big heart. I hope you begin to heal and find your feet soon. It will take time to stop feeling like this. You’ll never forget Kai, but you will feel better. You will always love him. He will always be a part of you. Now it is Kai’s turn to watch over you while you sleep. He is stroking your cheek, touching your hair, taking in every little thing he couldn’t see before.

  36. I don’t know you or your family. But I think of you and kai and your courage and live every day since I started to read your blog. Thank you for the inspiration, the real love, your heartfelt words. It feels like a gift. A difficult and painful gift, but a gift of true beauty.

  37. Hi Kerri, My name is Aimee. We haven’t met. I learned of your journey through a Northboro moms group and have been following your posts for a short time and I have no words for comfort. Sorry just doesn’t seem to cut it, and I mean that in a very loving way. I just wanted to reach out to you because my daughter passed away this year also. Even though she was only three weeks old and Kai was a bit older, I can *relate* to all that you are experiencing and wanted to let you know that if you would like to connect that I am here. I personally have found it comforting to connect with those who I don’t even know in my grief process. Grief is unique, very different for each person. Not only do I pray for Kai, but I pray for you and your husband each night. Because I know the pain that a grieving mother feels and nothing can describe it. Thinking of Kai and you both often……

  38. Just want to let you guys know that you have been in our thoughts and prayers all day … hugs and love ❤

  39. I am coming back to this post after reading it many times over the last severla week. I have thought of you daily – sometimes many times throughout the day – and wanted to share my condolences with you.

    While we have never met, as many other comments have expressed, your story has touched me so deeply and I feel that since you’re sharing yourself with the world, it’s only fair for me to respond.

    In the days after Kai passed, I just kept thinking, what can I do for this stranger? how can I make her feel better? I kept coming back to this post, and in all your words, realized that somehow a twinge of light sparkled in your simple words about sitting with your dog by the fire. Selfishly, when I get sad for you, I do come back to this image and feel a sense of calm for you.

    You had mentioned that Kai so strongly connected with dogs, in my opinion, they truly have a healing power that people don’t. They will sit with you for hours and just be. Often not asking for anything in return but a belly rub. But they will also nudge you out of the house when it’s time.

    My hope for you during this time of grieving is that you get the support from the people in your life, and if that’s not enough, know that your dog is listening too.

  40. After reading your post I had to write to you.

    When we lost our baby and brought home her ashes the funeral home put the urn in a white gift bag. Like what you’d find at Target. Our baby in a metal box in a cheap paper bag. It was more than I could take. I hated looking at that urn and hearing it clink around (they put a metal “dog tag” in with her body so they know for sure that you are getting the right ashes). Anyway, I remembered hearing on NPR about LifeGems, where a company makes a diamond out of ashes. I researched it and decided to have our precious baby made into a diamond! I am soooo glad I did. We have her in a special gem viewing box that magnifies and lights the diamond. You can get rings or necklaces made but that seemed to easy to lose. I’m just suggesting it because maybe it will be what you are searching for.

    Also, when we had her made into a diamond it took less time than they thought (5 months) and the diamond was bigger than they’d expected. And it was blue! I thought that was a special gift to us from God. It totally made the experience of looking at our baby one of wonder and joy. It’s kind-of surreal to think about it too.

    Hoping this can help…

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