A day to remember

It has been a long and busy week getting ready for the Kai filled day we had on Saturday!

First on the agenda:

 Kai’s Village Holiday Market

fundraiser in support of Kai, Sherry’s House and the Jimmy Fund.

 http://kaisvillage.org/   http://www.whyme.org/   http://www.jimmyfund.org/

The event was a HUGE success!  I still can not get over what our community was able to put together in a matter of weeks.   Their desire to help sparked a fire that spread fast.  The place was packed from morning till night with shoppers, volunteers, performers, vendors and friends.

I planned on stopping by early in the morning,  figuring I could drop off a few things and get in and out before too many people showed up.  I wasn’t sure I was ready to face it all.  I wasn’t sure I could keep myself together in front of all of these people ho have grown so close.   I wasn’t sure I could handle the hugs and love from all of these strangers that have become friends because of Kai’s story.  I figured I would just lay low, slip in and out and no one would really notice.

I should have realized there were a few obviously problems with this plan:  First- I LOVE craft fairs!  Second- It’s hard for me not to get involved 😉  I felt like I could help, so I did.  Third- that room was  filled with so much life and love, there was really no place I  would have rather been!

Since Kai’s passing I have struggled with the thought that I can’t really FEEL him.  I have been trying so hard to connect with him, sense his presence,  see some kind of sign that he is around me.  I have been looking in places that I never thought I would,  but Saturday it was all right there in front of me.

His presence filled that room.  I saw Kai in every child and every parent.  I felt him in the eyes of the countless volunteers and vendors who dedicated weeks of their lives to our cause.  I felt him with every hug I received from a friend or stranger, and every tear that was shed in his memory.  I needed that, all of it.  I needed to be a part of it.  I needed to feel like I could help.  I needed to show my love and support for all those amazing people who have been supporting us.   I needed the hugs and love from strangers, and even the tears.  I needed to be in that room that was SO OBVIOUSLY filled with Kai’s presence.

Kai’s followed me everywhere that day.

After finally leaving the market around noon  I was off to prepare for Kai’s Celebration of Life Party.

Wow what an amazing night.  I spent all week agonizing over what to plan for this day.  I wanted it to be fun and festive and happy,  but i also needed it to be a time and a place where we, as a family, could mourn our loss and share our memories.  I really struggled with this for days after Kai passed.  No matter what I came up with I never felt it would be enough.

Along the way I was given words of wisdom by a few different people: Hold in at a place that Kai loved.  Do the things that he enjoyed.  Allow people the time and space to share their stories and memories.  Don’t spend to much time trying to figure it out,  it will unfold just as it is supposed to.  It will never be enough…

So I tried to relax.  I thought about the places Kai loved and the things he loved to do.  I thought about here we could honor him and celebrate him and remember him.

Kai’s Celebration fo Life Party

was held at the Michael Carter Lisnow Respite Center in Hopkington, MA

Saturday December 8, 2012 @ 5p.m.


Kai only started going to the respite center in september but i knew from the moment I walked threw those doors that this was a place I would hold close to my heart forever.   The house itself is gorgeous and their mission is even more beautiful.

…Respite Center has helped hundreds of families, and continues to grow each year.  Many see the house as Michael’s legacy, but we believe that the true legacy of Michael is the love and care you find in our home.  As each year passes, the sweetness of Michael’s memories grow, and the lessons he taught become clearer.

 There is nothing but love and dedication in this home and you can feel Michaels love in every room.  I wanted to share this love with our family and friends.  Knowing Kai is now off somewhere playing with Michael,  it just felt right to hold his celebration here.  After much hesitation I asked and of course they went above and beoynd (as they always do) to make it happen for us.

The night was everything I hoped it would be.

They light a fire in the fireplace for us and  we ate and laughed and visited.   Then we gathered to watch a beautiful slideshow of Kai’s life that Mark had put together.  It is so amazing the power of photographs and music.  Watching Kai’s life chronicled on a screen made us all laugh and cry and remember the good times.  I have been looking at all of these photographs the past few weeks for different projects but it was not  until that moment that I really allowed myself to see them.  I could see his smile again.  I could see the things he was once able to do that I had forgotten.  I watched his journey from beginning to end, filled with love… and it was beautiful.  It was what every mother hopes their child’s life will be.    I could feel my heart fill a whole lifetime of memories from just two years of life.

This was Kai’s life.  This was my life,  and those two years were so full.   I will cherish every moment, every photograph and every memory.  We all had so much heartach through it all,  wishing for a better life for Kai but Kai smiled and that is what I will remember.

After the slideshow people were encouraged to share some personal stories and memories of Kai, or write them on a paper to be placed on his memory tree.  I will forever remember every last word that was said about Kai that night.  His family talked about what made Kai, Kai.  How he loved to be close and warm, preferably with his hand down your shirt.  They talked of the times they cared for him and how forgiving of us he was when we didn’t do things exactly right.  They talked of his super powers and his reach near and far.  We told his story, the good times and the devastatingly hard times.   We talked of how we are all forever different because of him.   It was beautiful and sad and exactly what I needed.  Kai filled that room that night, as he had all day for me.   He held us.  He brought all of these people together and gave me the opportunity to cry and laugh.  He surrounded me with his spirit and I felt him.   I could not have asked for a more clear sign that he was with me that day.  I could not have asked for a better memorial for my baby boy.

Once the stories winded down and our tear began to dry we moved back into the kitchen and celebrated his love of ice cream with a home made ice cream bar, vanilla, chocolate and Kai’s favorite  black-raspberry!     Laughter and life filled the house once again.

I wasn’t sure how I would ever say good bye to my baby boy…but after spending this day surrounded by his love and  the love and light he has given to so many others, I realized maybe I don’t have to.  His life is now mine and mine his.  I am forever changed by these two years and 7 weeks we spent together and i don’t ever have to let that go.  He spirit, his mission, his love and little laugh and light is a part of me forever.

Amazingly, as we spent our night remembering Kai  here at the respite center, there were two other events in two other states also remembering Kai that night.

This weekend happened to be the winter session brain tumor weekend up at Camp Sunshine.   Camp is another amazing, inspiring place that will always hold a place in my heart.   We have made many friends at camp.  Friends who know our lives better than most.  Friends who think of us when their own kids are struggling.  Friends who I will never forget. That’s just how brain tumor camp is and while I know there were many up there this weekend who wished they could have been in two places at once, it gave me comfort to knowing they were together together at camp remembering Kai.  Telling his story and sending us love.

Cancer took the lives of several of our camp friends this year, as it sadly does every year, and this weekend our friends took time out to honor our little ones as they would their own.

Here are a few pictures that were shared with me from the memorial they held for Kai, Avalanna, Will, Isabella, Ali and Drew.


AND the same night, all the way in Florida, a friend’s family was holding their first Alex’s Lemonade Stand in honor of Kai!


Liz and I were introduced by a mutual friend when both our boys were diagnosed last year.  Liz’s little Viking Patrick was diagnosed with a Wilm’s tumor.  He has had surgeries and has been in treatment the past year and a half, just like Kai.   Patricks last scan declared that he is IN REMISSION!!!!  We have kept up with eachother along the way and I am so honored that in the midst of thier own fight, Liz and her family have found the time  to raise funds for pediatric cancer research in Kai’s name!

Thank you Edwards family,  you are always in my thoughts. xoxo

27 thoughts on “A day to remember

  1. You are so very right, Kai will always be with you and you with him! Your bond is unbreakable. Sending you hugs and prayers of love and peace now and forever.

  2. Kerri , thank you for sharing this. I couldn’t be at Kai’s celebration but this blog brought me there. You made my day!!!!.


  3. I was a vendor at Kai’s Village Market on Saturday. It was AMAZING there all day. It just had a special feeling all day. I saw your family there but didn’t see you. I would have loved to have met you and given you yet another “stranger” hug. I look forward to continuing to help. Giving feels good.

  4. I attended this amazing event – it was hands down one of the best markets I have ever been to. The love and camaraderie is something I am grateful I could experience. I got some lovely handmade gifts for my family, friends and even myself! One of my favorite booths was the customized ornaments. We chose a couple for our tree and while they represent people in our family, seeing them there is a constant reminder of Kai and all the love he has shared with our family through your beautiful words. While I was walking around visiting with old friends all I could think of were all the new friends I have met thanks to you and Kai. I owe you a lifetime of thanks.

  5. What a beautiful post. I thought of Kai this weekend knowing this event was going on and I am happy to hear what a wonderful uplifting event it was. Kai will always be with you and always with his village.

  6. Kerri – it was so wonderful to see you and your mom at the craft fair – working with you guys to get everything ready and for the first couple of hours was so wonderful – we all felt very blessed! ❤ thinking of you always!

    1. I’m so overwhelmed and happy that you have found this fullfillment. That you finally felt him around through everyone’s love, hugs and tears. He will forever be with you, and will make his presence known to you in a happy joyful way, by a hug, a kiss from a love one. Know this always. xoxo,

  7. I am so glad that you have found that you do not have to say goodbye to your baby boy. He will always be a gift to be cherished. You and Mark and Kai are thought of every day.

  8. Kerri, what a beautiful post, and what a strong woman you are! You amaze me by being active where I think, I would just break down. I am very glad that you felt Keiki Kai’s presence there all day. And I can so very well imagine, how you tried to connect with him, to feel him, to desperately “see” any sign there might be of him still being with you. Reading the other day about your thoughts about his ashes in a completely locked urn, trying to hear the ashes move to be closer to Kai, just brought tears to my eyes. I wish and hope that you keep having moments in this difficult time, where suddenly you feel light, happy, and as if somebody holds you, to make up for the hard times of a quiet house, an empty room, and the utter feeling of loss. I keep thinking of you and Kai every day, and keep being amazed by your gift of expressing complex, difficult and confusing emotions in words that reach people and trigger thoughts. I often look at the pictures of Kai (every little detail) that you posted, he is so sweet. And I imagine him playing up there in heaven, his gentle, beautiful face beaming with a happy smile, and knowing that he can take care of you, protect you and be in your heart. Hugs to you and to Kai, Anja.

  9. Beautiful! Just beautiful! Amongst all of the sadness, I am so happy that you truly got to FEEL Kai all around you. You are so right- he IS forever with you in spirit, and in those around you, even if he is not physically here. I continue to think about you daily, and am striving to be a better mommy, in part, because of your inspiration. I hope you continue to share your journey through your blog- you are a WONDERFUL writer, and I hope that it’s cathartic. Many hugs to you and your family.

  10. Beautiful! Just beautiful! I am so happy for you that you were finally able to FEEL Kai around you. You are right- he IS always around you…in your memory, in other people, in all of the beauty and goodness in the world. Please continue to tell your story when you can- you are a wonderful writer, and I hope it is cathartic for you. You continue to inspire me to be a better mommy, and not sweat the small stuff. Many hugs to you and your family.

  11. Wow! What an inspiration. Kai will be with you everyday. He will live in your heart forever. Thanks for sharing this special day. Xoxo

  12. Kerri – Although we have not met, I had hoped to meet you on Saturday. I felt compelled to go to the fair, to try and show you my support. The moment I walked into the fair, I was overwhelmed with emotion – what an amazing event!

    Your writing is beautiful and I wanted to encourage you to keep going. I hope you continue to find some peace and solace in Kai’s presence all around you. Please know that his village will forever hold all of you in our hearts.

  13. The market was beyond amazing and the love was palpable. I’m so glad I was able to be involved. Thank you for sharing your story. Thinking of you always.

    1. I had a rather hard time choosing just one type of physician I would want to work for. So many of them fascinate me, and with me not really going into any medical field other than support, I never gave this any thought in the past. After reading the list, I am more favorable of working for a neonatologist. It is difficult to think about how neonatologist physicians sometimes have the most difficult job in the world, but I can only imagine how amazing it would be to be a part of saving a baby’s life. I had a coworker once whose baby was born at 36 weeks, and her baby had a lot of heart and lung problems. There were concerns about whether or not they would ever fully develop once she had him, but after many months in the NICU, and many scares that happened during it, the doctors were able to save him and he is now a very healthy 5 year old. It is because of that I have a higher interest in the neonatologist field.I hate to say which type of physician I would care less to work for, and it is because I worry that many will take it the wrong way. When I was 16, I used to help my mom at an assisted living home as a caregiver. We would get to work at 7:00 A.M. every morning to prepare breakfast for four of the elderly men and women that we were caring for. We would then make sure that all bedding was changed, rooms were cleaned, meals were prepared, and appointments were handled. We worked 12 hour days, and they were always grueling. The owner of the home made sure that everyone had their medicine and made it to their doctor appointments on time. However, she was more worried about getting paid for her services than actually helping the elderly. She would yell at them if they did something wrong, and even call them terrible names. My mom reported her and we both quit our job, but it has always left a sting in my heart since then. It is because of my experience with that situation that I do not think I could ever work for a gerontologist. I know that the situations would be much different, but ever since my experience with caring for elderly individuals it is very hard for me to think about assisting a physician in geriatrics because I worry that someone else might treat the elderly in the same way the owner of the home did. I am a firm believer that the elderly deserve the ultimate care and comfort when going through any treatment and aging in general, but I do not think I could ever work in that environment again.

  14. Your boy made a difference, and that is All any of us could hope to do in our lives, and he managed it in just a little over two short years!!!
    We will remember Kai with smiles in our hearts….
    Alice Emily, Lexie and Max<3

  15. love you – love your strength – love your amazing spirit -God chose you to be Kai’s Mom because it would take a very special person to accept so graciously what was such a difficult yet life changing experience. xoxox

  16. I am so happy that Saturday was another day of healing for you, it sounds like it was filled with the many memories and spirit of Kai!!! I think of your family daily, despite not knowing you….that is the spirit of Kai!!! His incredible journey has brought complete strangers into your lives and you graced us all with your most beautiful KAI !!!!

  17. Hi Kerri as usually we were thinking of you today . The event on Saturday was absoulutely beautiful. We got there just a little bit after 12 i wish i would know you would be there earlier in a day so i could come early enough just to give you a hug .
    We are sending lots of love and Kai , You and Mark are always in my prayers …<3

  18. As another person said, I’m a friend of a friend who wanted to come to the fair to support you and your family. It was amazing. I could feel the love and hope. And I am sorry for missing you, but perhaps it is for the best, I would have been one of those strangers wanting to hug you and hold your hand. I look at my little boy and see Kai. You have taught me to be a better parent. I hope you continue to do so…. I have shared your blog with many of my coworkers (sent them the craft fair flier, posted it at my work) and several people came up to me telling me that your writing is beautiful and you should really think about publishing this. Usually they would then shed a tear and we would hug. You have done something amazing here. You could help so many other people. You have helped me and mine. I wish I could return the favor. (((((HUG))))))

  19. How wonderful to have your community (near and far) rallying around you and helping you to celebrate Kai–thank you for helping me, by example, to be a more patient, appreciative and empathetic mom.

  20. I truly believe that the way to feel Kai, and have a sense of his daily presence is to continue on his journey. I honestly believe that your writings, public speakings, and continued work at camps and respite centers will be what makes you whole again. You were chosen for a reason to become Kai’s mother, because you have so much love to not only to have shown him but now others as well. Paying forward the enomorous amount of love and support others have shown to you along the way I do believe will become your lifes calling. Sharing your story to those now in the trenches going through the daily struggles is what you are meant to do. It will be a major help and support system to those families in need but a healing process for you.

  21. With love, I wanted to comment, because I don’t want you to lose a single moment of your life with Kai, especially when it’s just a matter of math…. I believe you had 2 years and 12 weeks together. It’s such a trifle, but as a mother who has counted the very minutes my children have been alive because each moment has been precious and changed me completely, I wanted to say it. I am praying for you every day. I can honestly say my heart is so heavy from the loss of Kai. What a beautiful angel.

  22. Those we love never truly leave us, even when we can no longer see/touch/hear them in this life. I’m so terribly glad that you were able to find Kai on that phenomenal day. Thinking of you all daily. Much love….

  23. What a fantastic day. I am so honored that I got to be a small part of it. I had no idea the event’s date was to coincide with all of these other events. Lots of love…

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