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Phantom cries

Today will be hard and long and filled with tears and hopefully a little laughter.

In the days since Kai left us we have been surrounded by the love and support of our family and friends. Our house has been packed with food and drink. Candles have been lite and a fire in the fireplace has been keeping the warmth in my heart.
It has been busy. Busy enough to keep me distracted most parts of the day. But it’s the little things that always sneak up on me. My first night home I sat with Ashley planning the next days tasks and I kept thinking ‘ok, so when we go run that errand who will watch Kai?’ It was just instinct the first thought that always runs through my head. Of course as soon as I think it I know I no longer have to worry about Kai, but the thought keeps creeping into all of my plans.
At the end of the night I laid in bed and just sobbed. I spent every night for three weeks sleeping with his hand in mine. My chin resting on his head. Our body’s keeping each other warm. I can not believe I will never feel that again. I can’t believe I will never see him again. I stayed with him a long time after he died, but it was not long enough. It could never be long enough.

Kai was very quiet in the last weeks of his life. He did not laugh or cry or make much noise at all. There was one night at the hospital a few weeks ago where he managed to get himself caught under a pillow and he squawked until I woke up to rescue him. I think that was the last time I heard him make any noise until the moans he let out the day he died.
Yesterday I heard fantom cries. I have heard them before when Kai was here. I would race to his room and stand quietly outside his door, and then nothing… This time I didn’t jump or race to his room, I knew they were phantom, but I heard it. I wanted to hear it. This house has been bustling since I have been home but the sounds of my life before are missing. I long to hear the voices of Kai’s therapists and caregivers and his little laugh when he sees them. Kai’s little call telling me he needs me and its time to wake up. I almost even miss the beeps and alarms of his feeding pump and IV calling me in the night. As annoying as it was, I would go in and fix the beeping and give Kai an extra kiss and touch his face. It was like an alarm telling me to take an extra minute to just stop and stair at him and I did, every time.

The noise and words of everyone tonight is already filling my head. I stayed up late finally reading the hundreds of comments on the blog.
I want to thank you all for caring so much for us. I read every word and I will cherish those words forever. Seeing how far Kai’s spirit has reached, tens of thousands of people in over 10 countries, it just takes my breath away! It just makes it a tiny bit ok. So thank you for reading and listening an sharing and commenting.
Knowing Kai has touched this world in such a way makes me one proud momma.
I don’t know how I will get through today, facing all of the amazing people that have made this journey a positive one despite the devastating heartache…this will be hard. But I am ready. Kai is gone, we are all still here and together we can carry on his legacy, his smile, his spirit.

106 thoughts on “Phantom cries

  1. You are such a strong and amazing woman! I am sure he is smiling down on you. God bless you all and I pray he continues to be there for you as you need him.

  2. Kai may not be with you physically but he’ll always be with you in spirit. I said it before and I’ll say it again, you are an incredible mother and one we all admire. My heart goes out to you. I am so glad to have met you both. Hugs and prayers.

  3. You are absolutely amazing. I have had a hat time sleeping the past 2 nights. I lay there and wonder how you are feeling. How I would be feeling. You are so strong you truely amaze me.

  4. Kerri, I wish more than anything that I there was something I could do to help ease your pain. I am afraid if I hugged you I would never let go. I am eager to help you continue Kai’s amazing legacy.

  5. I agree!!! You are an amazingly strong Momma! How you gave yourself to Kai in those final weeks was probably the most special and precious thing you could have done! I am sending lots of strength and hugs today! I hope you are able to focus on the happier times, the smiles and the giggles of Kai – celebrating his life! My thoughts and prayers are with you, your family and friends!!!

  6. Have faith & stay strong… we are thinking of you and your family today. Kai has impacted many lives and so have you – thank you for that.

  7. No words can express my most heart-felt sympathy for you. I have been following your story for weeks and have been thinking and praying for you and Kai non-stop since I heard your story. I am so deeply sorry for you and your family. Kai was such a beautiful, brave, and inspirtational little boy. You are a tremendously strong and brave mama. His life and legacy WILL live on, ALWAYS. Your story has touched my life like no ever has before. Praying for peace for you and wishing you comfort. Ashley D.

  8. I am trying to find the words to comfort you, nothing seems right, I hurt inside for you.
    I wish I could say something to make all your pain disappear, the pain is love, the emptiness is love, all the sadness is love, the love of a mother for her baby, a love that has been lost, a love waiting to someday be reunited.
    I send my prayers to Heaven, praying that God will hold you…

  9. Kai is your Angel now always with you, as you were is Angel here on earth, always with him. You are an amazing, strong, beautiful, inspiring woman….forever blessed. Huge hugs and thanks to you Kerri.

  10. Kerri, phantom cries and the unbearable pain of not holding that little hand in yours anymore, ever. I cannot begin to imagine how this must hurt. I’m dreadfully sorry for your heartache. And even though I never met baby Kai, I miss him, as if I had known him for years. You can really be a proud mummy, knowing how many lives your lovely baby touched. But you know what? Kai is certainly proud of you, he knows that he has the best mum he could get, strong, able, compassionate – no wonder he left such a great impression with so many people. I wish you all the best for today, that you find strength with the people that love you, and that you find peace in your heart and can one day start to heal. Such a beautiful baby boy, such an amazing mummy. Thank you for taking the time and mustering the strength on your third day without your baby boy to let us be part of your journey. Hugs, Anja.

  11. Many tears and my heart aches. You are truly an amazing strong woman ! Peace be with you as you and your family go through this difficult time!

  12. I am not one to cry but your latest blog did. My heart aches for, even though I know Kai is in the loving arms of our Lord. Not only did Kai make a difference in our lives but the words you took the time to write everyday touched us all. I’m not sure I would have the courage you did. Thank you for letting us all be a part of this very difficult time in your life. You are truly an amazing and loving person. God be with you.

  13. Kerri,
    I sit here reading about little Kai and your’s journey, crying. I can not even imagine what you are going through. My heart is breaking for you and I wish there was something I could do help you, to ease your pain . You are amazingly strong. Far stronger, I fear than could ever be if I was in your shoes. I am glad that Kai’s suffering has ended, he was a strong little boy but now he is running and playing in heaven…. smiling down forever on his mommy. He will always be in your heart. Remember holding his hand and his giggles, cherish the time you hand with him. Let that be the phanton sound you hear. My hugs and prayers are with you.

  14. Kerri, it is amazing to me that I could fall in love with a little boy who I have never met and who is hundreds of miles away! I will be weeping for him and for you today from Chicago. If you happen to look west, know there is someone out in IL who is grieving for your loss.

  15. Kerri-Kerri I just read your jounal entry and I am all choked up with tears. I wish there was some way to take your pain away! You are an amazing strong women who has touched many people around the world, as you shared your journey with your beautiful son Kai- I am very blessed that you let us/me join your journey with you and Kai. I can’t not say how much I am sorry for your loss. Kai was a very strong, adorable, beautiful little man, with such a short time in this world, but he now has grown wings to be an angel, he will be looking down on you and guiding you to get through this difficult time. Thank “you” so much for sharing! xoxoxoxox

  16. Kerri, I’ve been following your blog for a few weeks now. My heart breaks for you. I too, like many followers have not been able to sleep at night and have had to hold back tears sitting at my desk at work. But what I wanted to tell you is that you and Kai have changed me as a mother forever. I am hugging my 4 year old daughter more than ever. Holding her close whenever I can. Not sweating the small stuff. And even today, instead of working through lunch as I usually do, I’m going to take a hour so I can walk her to school. I pray for God to give you the strength to carry on without Kai. You are an amazing woman. Thank you for sharing Kai’s story. I will always remember him and do what I can to fight for a cure to end childhood cancers. Sending you and Mark a huge hug from NYC today and always!

  17. You truly astound me with your words and your grace. I hope you find comfort of some kind knowing that your baby boy touched so many hearts, many of those he or you had never met. I followed your blog the last few weeks – crying at all of your posts. I was praying for a miracle. Kai is an angel now, begining his new life where he will one day welcome you home. May you be filled with his fighting and loving spirit over the coming days and months. He is with you- his spirit is always inside you and that can never be taken away. God bless.

  18. You are beautiful Kerri and you did an absolutely amazing job with Kai. He will be in your heart and the hearts of many forever. Hold onto the memories so tightly. They will make you smile to have had such beauty and love and such a precious spirit in your life. I wish I had some magical words for you, but I am just another mom who understands the depth of your love and how your heart is breaking. I, like so many, will be thinking of you and Kai every moment of today and so many to come. I am praying for strength for you.
    Wanda

  19. Praying that God gives you and your family continued strength. You are in my thoughts and prayers.

    Sent from my Verizon Wireless BlackBerry

  20. May tonight be filled with laughter and smiles as you all think back on the happy times and smiles of your beautiful little boy. Let it be a celebration that he is now an Angel watching over you and Mark and that you will forever be connected. May your pain and emptiness be eased with each thought of your special time together. Sending you love and strength on this difficult day.

  21. Kerri, I don’t know you but am in awe of your strength and love. What a beautiful family. You inspire me to be a better person and mother. I am so sorry for the pain you, Kai and your family have gone through but you have found so much meaning in it all and that is a wonderful gift that you have shared with us all. Love and prayers coming your way.

  22. I have been searching for the words to express my heartache for you and your family but I know that there are no words will ever make it easier or hurt less. Kai was an amazing little boy and did amazing things in his short time on this earth. HIs legacy will live on in the hearts of the people he has touched. Thank you for sharing your beautiful little boy and his story with the world.

  23. Thinking of you today and everyday as you prepare to say goodbye to your beautiful baby boy. My 3 kids all cried when I told them Kai had died. You have both touched so many lives with your incredible strength and love for each other. Cancer will never break that bond between you and Kai. He will forever be your baby and forever be your angel pain free in heaven. May God give you strength as you face the coming days without your sweet boy. Keep writing you have the talent and the voice to change peoples lives. You were the best mommy Kai could ever have so glad you found each other. A mom in Southboro

  24. My thoughts and prayers are with you today, tomorrow, and every day after. You ARE a wonderful mother. I stubbled on this poem when a friend of mine lost her twins, and I thought it was only fitting to share it with you.

    What Makes a Mother

    I thought of you and closed my eyes.
    And prayed to God today.
    I asked what makes a mother and
    I know I heard him say,

    A mother has a baby.
    This we know is true.
    But God, can you be a mother
    when your baby’s not with you?

    Yes, you can, He replied
    with confidence in His voice.
    I give many women babies.
    When they leave is not their choice.

    Some I send for a lifetime
    and others for a day.
    And some I send to feel your womb
    but there’s no need to stay.

    I just don’t understand this. God,
    I want my baby here.
    He took a breath and cleared His throat
    and then I saw a tear.

    I wish I could show you
    what your child is doing today.
    If you could see your child smile
    with other children and say,

    “We go to earth to learn our lessons
    of life and love and fear.
    My Mommy loved me, Oh so much,
    I got to come straight here.

    I feel so lucky to have a Mom
    who had so much love for me,
    I learned my lesson very quickly.
    My Mommy set me free.

    I miss my Mommy, Oh so much,
    but I visit her each day.
    When she goes to sleep,
    on her pillow’s where I lay.

    I stroke her hair and kiss her cheek
    and whisper in her ear,
    ‘Mommy don’t be sad today,
    I’m your baby and I’m here.'”

    So you see, my dear sweet one,
    your children are okay.
    Your babies are here in MY home
    and this is where they’ll stay.

    They’ll wait for you with ME
    until your lesson is through.
    And on the day that you come home,
    they’ll be at the gates for you.

    So now you see what makes a Mother—
    It’s the feeling in your heart.
    It’s the love you had so much of,
    right from the very start.

    Though some on earth may not realize you are a Mother,
    until their time is done.
    They’ll be up here with ME one day,
    and know you’re the best one.

  25. Kerri, I continue to think of you and your husband and your family and friends, who are living this time with you – so much more intimately than we blog readers who have never met you but yet hold you in our hearts and in our prayers. Your words today reminded me of the words of a friend of mine who lost her sweet baby boy several years ago – she said that one of the most important decisions she ever made came the morning after her baby died, that “just before opening the shades to the sun which had the audacity to shine”, she made the choice to keep going. I will continue to hold you in prayer as you live out that choice to keep going in the coming days and weeks, praying for strength and healing for you.

  26. There are no words I can give that will take the pain from your heart. Kai reached in our hearts and continues to reach down and change lives. We never met but I followed your journey with Kai. My heart, my life is changed because of it. Please know we continue to pray for strength in the coming days. May you feel the love that is being sent your way today and everyday.

  27. The world is a sadder place without Kai, but I thank you for sharing this journey with so many of us. In his short life, he made us all better people. I have an image of him in my head being held by God, waiting for the day he can see you again.

  28. I can hardly think through my tears, I am so sad for your loss but so thankful he is no longer fighting, no child should ever have to be a fighter! I am also a Mother of 2 and it just breaks my heart reading your thoughts and emotions over your loss, I couldn’t imagion. I too have heard the “fantom cries” myself though not for the same reason’s. After hearing of your story from Gaven’s FB page, this is one more heart that Kai has toutched here in Toronto Canada…<3 It is us hear on earth that experience the loss of life the hardest with sadness, emptyness and longing. Take comfort that he is not hurting like you are now, he is being toutched and held by angels in heaven, he is holding their hand and they are resting their heads on his. We are all God's children and he especially loves the smallest more innocent ones. All my prayers love and compation to you and your family. Hold on to each other tightly and you will heal from this together. Sending you all my biggest tightest embrase xx

  29. You are one of the strongest and most gracious people I know of. I continue to think about you throughout my day and my facebook post today is to remind everyone to be grateful for happy moments they have. You have really transformed me as a mom and a person. I struggle with anxiety and worry and you have helped me practice gratitude and mindfulness for the moments that we have. So much that we worry about is unimportant. Thank you for reminding me of that. I will continue to think about you and pray for your family this weekend that you have strength as you lay your baby to rest. I hope the phantom cries that visit you in the future bring you comfort instead of pain, as you know that Kai will always be with you. Much love…

  30. YOUR AMAZING AND STRONG. I KNOW YOUR ANGEL’S HEART IS FILLED WITH THANKS TO HAVE HAD YOU AS A MOTHER. WHAT A STRONG, BRAVE, AND HANDSOME LITTLE BOY, MAY YOU FIND COMFORT IN KNOWING YOU HAVE HIM WATCHING OVER YOU NOW. GOD BLESS YOU AND YOUR FAMILY.

  31. Aww…Mom.As a mom of 4 kids I cant even fathom the heartache your going through…Im typing this through tears….no child should eer have pain and suffering and no parent should ever watch their child suffer through anything…and no parent should ever have to bury a child….Words cannot express how sorry I am for your loss of your precious son..God Bless you..xoxo

  32. Kerri, I wish I had something to say to let you know how deeply you have touched me. Your Kai has taught me lessons I will never forget and you have shared what it is like to mother an angel. People have different beliefs and faiths, and I don’t want to disrespect anyone…but I truly believe that Kai is with you, and when it seems too much to be without him, he will be that much closer to you to lift you up again. I am sending you ever bit of peace I can today…and everyday.

  33. Kerri you will get through today by taking iy one minute at a time. Feel the love for kai wrap around you when those unbearable moments hit you. Just know that Kai may not be physically with you but is is forever in your heary. Through your words you honored Kai’s life and blessed all of us with the gift of Kai. Kai did alot of work in his little life by changing peoples lives. How amazing is that! My prayers and love go out to you and mark and all of you family today and everyday. Love and peace

  34. You are an exceptional mother! Thank you for sharing your Kai with the world. Thinking of you today and the road ahead.

  35. I just can’t even begin to imagine your pain. My heart is breaking for you all – but wishing you peace and love at this time and always. Thank you for sharing Kai and his story – you all have indeed inspired many and changed lives. No child should suffer the way he did and I am committed to fighting for all kids suffering from cancer. I’ll do it in Kai’s honor and the many other kids I know that have lost this battle – too many which is why I will fight hard. My condolences to you all. May Kai rest in peace.

  36. Kerri
    Thinking of you and your family today and wanting to thank you for sharing your little boy with all of us. Even though he is no longer here, his story will live on and on through all of us. You and Kai have made us all better people. Prayers and love go to you and your special little angel.

  37. Children are a gift from God, but He allows us to love them until He needs them to come back to Heaven. The sadness is so great when we lose a child, because we have so many hopes and dreams for them, now that’s gone too. “That which does not kill us, makes us stronger”. Cliches and even Bible verses are not easy to tolerate during your grief, but later you will see that, even though there is still a degree of grief and mourning, you are putting it in it’s proper place and carrying on with life. God must think you are special by giving Kai the family He did. He knew what Kai would have to endure and He chose you to help him. God isn’t finished yet, He may have another blessing around the next corner. God bless you and keep you, may the Lord’s face shine upon you, and give you peace.

  38. I’ve struggled to find words to leave here each time I’ve hit the ‘comment’ button. I’ve wanted to let you know that you’re in my thoughts, that I look up to your strength, that I am so happy Kai has a mother with so much love and strength, that even though I only met your son once at a MoCo playgroup, that he’s in my heart. When I think of writing all this, though, I always hesitate. I’m a stranger; I don’t want to be rude butting in to your life. I don’t want to sound pathetic or weak in telling you that I’ve been heartbroken and filled with such sadness over Kai’s illness and now passing. It seems rude to tell you how much I’ve cried for you and Kai. But each time I’ve thought this, I figure if it was me, I’d maybe want to know what a profound influence my son has had on so many lives…so I press the button and start typing. These past few days I’ve found myself missing Kai, which in so many ways seems again pathetic, selfish and weak of me: I’m really a stranger, but I miss him. I miss him for you. I want him to be back in your arms for your sake so you can hold your baby. I’m sure he’s with you, though, and through this blog and being a member of Kai’s Village I know he’s in so many people’s hearts and minds. People over-use the word amazing, but he’s truly amazing, Kerri, and it’s not fair that his life was so short, but you and Kai have touched so many. You are an inspiring mother and Kai’s life was so profound and huge despite being so ephemeral. I’m sending you love, comfort and strength.

    1. You summed up what I have been feeling but unable to put into words. I am truly amazed by this little boy and his mother who shared him with us and have been so impacted by them.

      1. These could have been my words. I’ve read the comments too but as a stranger and a mother with two young children making a mess everywhere as I type, I felt I never had the right words for you. I think of your son (and you) so many times throughout the day. I cradled my two year old boy last night and I really inhaled the smell of his hair. As I lay there, I cried for Kai and for the unimaginable pain you must be feeling. It is so unfair and I am so sorry that you faced this battle. But know that your story and your beautiful, precious son have impacted the lives of so many–even strangers like me. Thank you for sharing.

  39. You are an amazing woman and mother that I have shed many tears for. You have a beautiful baby boy that will forever live within you, I will continue to pray for you, strength.. Courage and peace. May God be with you always

  40. tears in heaven by Eric Clapton

    would you know my name
    if I saw you in heaven
    would it be the same
    if I saw you in heaven

    I must be strong
    must carry on
    cause I know I don’t belong
    here in heaven

    would you hold my hand
    if I saw you in heaven
    would you understand
    if I saw you in heaven

    beyond the door
    there’s peace I’m sure
    and I know there’ll be no more
    tears in heaven

    I don’t know if these are the correct lyrics
    and there are surely more stanzas
    but this song expressed it nicely for me when my son died
    and still does
    you will find it on youtube
    Eric Clapton also lost his son tragically

  41. My heart hurts for you. I have for girls ages 11, 8, 4 and a 1 yeard old. As a mom I can only imagine the pain you’re going through. Not only right now that Kai is in heaven but through out all his journey with this monster called cancer. I truly admire your sgrength and I wish there was something I could tell you to ease your pain, just a little. I recently started reading your blogs and fallen instantly in love with Kai. I have cried while reading, and at times I even felt like if I was right there with you and Kai. He is an angel now and be sure that he’ll be watching over you and the rest of the family from heaven. Thank you for sharing with us Kai’s story. My love and a tight hug for you.

    Maria

  42. I feel very much the same way as Erin. We are strangers (though we COULD have met, as I am part of one of your mom groups), yet I have found myself breaking down in tears several times over the past few days while reading about your journey. As many before have said, I have been struck with how strong you have been throughout it all, but please…do not be afraid to reach out for help if and when you need it. Grieving is such a unique process, and there is no right or wrong way to do it. You do not HAVE to be strong every moment of every day- let others help you, let others comfort you, just let the feelings of sorrow flow. I am yet another mama who is trying to change how I look at all of the day to day “stuff” that is involved in raising two toddlers, and it is because of your story that I am doing so. Once again, you and Kai have impacted people more deeply than you will ever know. I will be thinking of you today and for a long time to come, sending love your way…

  43. Dear Kerri and Mark,
    “What we have once enjoyed and deeply loved we can never lose, for all that we love deeply becomes a part of us.” Helen Keller

    It is impossible to find the proper words to express how truly sorry I am for your loss.
    I feel blessed to have been a part of Kai’s village. He will always hold a special place in my heart.
    Thank you for sharing his life and your inspiring words with so many.
    Please know that you and your family are in my prayers.
    Fondly, Priscilla

  44. Kerri and Mark,

    My heartfelt sympathy. I will continue to keep you in my prayers, that you will have strength, and peace to continue your journey, one minute, one hour, one day at a time. Kai’s spirit will live in the hearts of so many, because you had the love, and courage to share him and your story. Some people only dream of Angels, you have held one in your arms, and will forever carry him in your heart.

  45. Thank you for sharing your beautiful baby boy journey. Kai certainly made a difference in this world and will always be remembered.

  46. Kerri and Mark,
    I hope that today is full of love and remembrance of a little boy that has truly changed so many including me as a mother. I have read all of your blog and your perspective is incredible. He may have had a shorter journey but it was a powerful one. Thank you again for sharing your son, your story, and your life. Kai will always be in my heart.

  47. Thinking of you tonight and always. I am so sad you must feel this all too familiar pain. I remembered my final days with Mav and the first days after Mav yesterday as I thought of your family and then I talked to him about your Kai. I told him to surround you both with strength and warmth through this time. I will take some comfort in knowing he is in such sweet company.

  48. Dear Kerri,
    I’m a proud member of Kai’s club even thoughe we never met (perhaps passed eachother around central mass) but I touched his spirit through your beautiful writing. I will continue to check for updates on Kai’s Fight Club.Holding you very close in my heart today, Kathryn

  49. Dearest Kerri –
    Continuing to keep Kai, you, Mark and your family in my heart and in my thoughts in this most difficult time. Sending hugs, love and comforting thoughts.
    Mary Pat

  50. Kerri, I discovered Kai’s journey through a friend and I have to say that it captured my heart. I am so sorry for your loss…. I know words will never be enough, but Kai’s life story has touched me and I am heartbroken for you! What a strong little boy with an amazing mom! This week I read your blog from start to finish and cried all along the way. Nothing will fill the hole left by his absence. This loss is not something you get “over” but after reading your heartfelt, wise, insightful, and poignant posts, I sense that you posses inside and will be surrounded by the strength and love to get through. I am sending comforting thoughts to you and your family!
    {hugs}
    Regan
    Worcester, MA

  51. You’re amazing and Kai has made a lot of people want to better themselves and help kids with their illness’. Kai’s life was cut too short for you but his time here was amazing just like his Mom. I believe Kai is at Peace now and I pray for you always. I think you should write a book about Kai. I know I would buy it! Always in my prayers:)

    1. Was just thinking the same thing. Kerri, I think it could be an awesome way to work out your own feelings and to bless other Moms on this hard journey. I know how important it is to feel like you are not alone….<3

  52. I also want to Thank You for sharing Kai’s life with us. It’s been a pleasure reading about such an Angel Boy. You did an amazing job loving him Mama! Be proud & remember you are always Kai’s Mommy and no one can take that from you. God Bless You:)

  53. You have shown incredible strength, courage and unbelievable love through all this. Tonight I pray you have peace. Remember he will ALWAYS be with you. RIP baby boy xoxo

  54. Kai’s SPIRIT will EMBRACE YOU every moment of your life!! May GOD give you STRENGTH and COURAGE to move forward with LOVE & PRIDE in your heart and surround you with his PEACE forever!!! Spread your wings and fly ANGEL!!! GOD BLESS!! ❤

  55. I was reading through the obituaries the other day and saw a picture of this most adorable child and had to read the obituary. It breaks my heart knowing what Kai went through in his very short life. I started reading your blog page and shed many tears trying to read through it. What an amazing, strong mother you are to be able to do everything possible to help your little Kai and to find the time to journal this most unthinkable journey you had to go through. I don’t know you but I work in Grafton and was totally amazed at when I rode by the funeral home at 4:15 this afternoon and saw just how many had already come to say goodbye to such a beautiful child. Kai was loved by many and will remain in their hearts forever. God bless you and your family as you try to get through this most difficult time.

  56. These first few days, Ms. Kerri. I am so sorry. You must be exhausted. You let Kai know it was okay for him to let go…I have been searching for a non-pompous way to say this, but maybe there isn’t one, as we don’t know each other–but you don’t have to be strong right now. You can let go too. I hope you can let yourself grieve however you need to do so, and please remember there is a huge number of people out there keeping you in their thoughts.

  57. I can’t imagine what you are going through right now, but know that we are all thinking of you and wishing you comfort today.

  58. Praying you sleep peacefully tonight and you feel Kai’s spirit in you dreams. he will always be with you. May he come to you in your sleep pain free and happy and bring you the peace, rest and healing you so deserve. You did a great job mama now let Kai and his village take care of you. rest easy and absorb all the love and prayers being sent your way. may God be with you as you start to heal. kai will never be forgotten.

  59. Kai’s impact on so many was, IS, clearly profound. He gave us all so very much, just by existing. And you, Warrior Mama, gave us him. As you move through the days to come please remember that we aren’t just Kai’s Village…we are Kerri’s Village, Mark’s Village, your family’s Village. And we always will be.

  60. Dear loving mother. I love u! I am so saddened. I celebrated my bday on the 29th. Of this month. I was sad and I had been thinking of ur son the whole time. Your such a strong women. I want to be there for u to help u. I want you to know that ur son is going to be ur guardian angel for ever. He made footprint in many maybe millions of people life. They will each remember something special about your son. You should know he wants u to b happy and not sad. He loves u so much. He wanted to be with u all. He wanys u to remember all the good and bad and smile. Remember his smell and his smile and his giggle. Remember to enjoy all u happy sad and inbetween moments because u can always have the memorys in ur heart mind and soul. Times will be hard but u will get through and ur son showed u something that u might not have known u have and u showed him so much. I have more but I justed wanted to say that god needed ur son to help someone in heavan! God will hold u up when u feel u will fall and he never leaves u. When u can’t handle something through ur pain on to the lord and he will help u through. Keep ur head up and remember we love u!!

  61. HELLO, I HAVE THOUGHT OF KAI A LOT TODAY , HOW WONDERFUL IT IS THAT HE IS NOW WITH OUR HEAVENLY FATHER PAIN FREE AND PLAYING AND BEING A CHILD . I AM SORRY FOR ALL OF THE PAIN U WILL HAVE IN THE DAYS TO COME ,I WISH THERE WAS SOMETHING I COULD DO OR SAY THAT WOULD HELP U ? BUT U JUST KNOW THAT KAI WILL NEVER BE FORGOTTEN HE HAS TOUCHED A LOT OF LIVES AND WE ALL LOVE HIM DEARLY AND I KNOW HE WILL ALWAYS BE A PART OF YOUR LIVES AND OUR LIVES . WE ALL ARE THINKING AND PRAYING FOR PEACE AND UNDERSTANDING FOR U AND YOUR FAMILY ! WE WANT TO THANK -YOU FOR ALLOWING US TO BE A PART OF KAI AND YOUR JOURNEY. LOVE REGINA BREWINGTON

  62. Just profound. There are no words to do justice. Kai has accomplished so much in his years here that some grown folks never come close too. He is a little hero and will always, always now look after you and Marc.

  63. His pain is no more. He was a beautiful boy and what you have done here by sharing your trials has helped others in their struggles. You are an amazing mother and person.May the wind be against his back.

  64. I have thought of Kai almost constantly lately rushing here several times a day to see how he was. I find myself still drawn here by him, I know he is still among us all. Kai left an amazing impact on myself as well as thousands of others and now a new part of this heartbreaking journey begins. I pray daily you are all able to find peace and comfort with the knowledge that precious Kai is an angel now and he is no longer in pain or any suffering. He is running, playing, laughing, smiling, and looking down at you with a love so strong no distance can break it. Please do not forget to just let yourself go. It is ok, you have just went thru something NO parent should ever have to go thru. May God continue to watch over you and comfort you with his loving arms.

  65. There are no words that I can say or give that will ease the depth of your grief; I wish there were. Life is so complex and we won’t ever know, while here on earth, why we must experience the pain of loss. We do though, all of us, but we are not all blessed with the ability to express our raw emotions and love so generously as you have. Writing is therapuetic for the writer but in sharing that with others you have documented love, strength, courage, fear and devotion with an honesty that has and will continue to have profound impact on more people than you will probably ever know.

    My heart breaks for you and your family; I will continue to pray for your comfort and for the eternal rest of your beautiful boy. I pray that every day brings less sadness and the phantom cries turn to sounds of laughter, memories of smiles and all the beautiful blessings Kai brought in to your life. ❤

  66. I am forever changed as a mom. I have found myself thinking of you and Kai often throughout the last week. As I stare at my 3 girls ages 7,4,20 months I cannot fathom the pain of having to watch one of ten slowly slip away. I know one of your fears was that since he was only 2 no one would remember him. I assure you that Kai has left a forever mark on my heart. I speak for myself and I am sure thousands of other mother across the world who have read you story, YOU are amazing! The love you have to that baby boy was so immense that I could feel it in my heart just reading your words. I am so very sorry for your loss. Just know that you not only touched our hearts but a lot of us will be forever changed as mothers…. Thanks to you and Kai!!!! Xox from Maine!

  67. We have never met and I’ve been following your blog for only a month and was so deeply saddened to hear of Kai’s passing. What you are going through is devastating. Incomprehensible. Unfair. I know this because I too lost a young child eight months ago.

    This poem came to me in a card I received and I would like to share it. I keep it on my refrigerator to help me when I need the gentle reminder. I hope that perhaps it may give you solace in this time of deepest despair. I will pray for you and your husband, especially over Christmas, since I know this will be extremely difficult.

    Daddy please don’t look so sad,
    Mommy please don’t cry.
    I am in the arms of Jesus
    And He sings me lullabies.
    Please do not try to question God,
    Don’t think He is unkind.
    Don’t think He sent me to you and that
    He changed His mind.
    You see, I am special
    And I’m needed up above.
    I’m the special child you gave Him,
    the product of your love.
    I’ll always be here with you,
    So watch the sky night.
    Find the brightest star that’s gleaming,
    That’s my halo’s brilliant light.
    So Daddy please don’t look so sad.
    Mommy pease don’t cry.
    I am in the arms of Jesus.
    And He sings me lullabies.

    —Author unknown.

  68. Your story has touched me so deeply. You write with such realness and heart. Your love for your precious boy is so evident. Thank you for sharing such amazing details regarding your life, love and loss. Kai has moved me to live fuller and love more. I didn’t know him here on earth but look forward to seeing him in heaven. I will continue to pray for the whole that Kai’s passing has left. May the God of Peace fill it in time. Kai has made a difference in his short life and has touched me so deeply. Blessings to you and your family.

  69. Kerri-

    Your strength through all of this is inspiring. Thank you for sharing your and Kai’s story.

    With Sympathy,
    Danielle

  70. KERRI –
    I JUST WANT TO LET YOU KNOW THAT WE HAVE BEEN THINKING OF YOU ALL THE TIME AND THAT YOU ARE NOT ALONE . WE WANT TO SEND YOU A LOT OF HUGS AND LOVE ….

  71. Kerri – I thought about you a lot today. I was glad to see this post — glad to hear that you are being so well taken care of.
    With great affection,
    Tamar

  72. I am at a loss for words because I cannot even imagine what your world feels like right now and my heart just breaks for you…. but I just wanted you to know that I am thinking of you tonight and sending hugs your way.

  73. I’m so Sorry !!! Found your Homepage about Jessie Rees Foundation and it brought tears through my eyes to read all your Posts !! My english isn’t so good i Hope you can understand all my words ! I’m so Sorry that u have lost your Sweet Baby Child ! I think he is in peace now and u will See him again One Day !!! Kai will be always by your side and he will be always in our hearts ! I Hope One Day there will be the chance to Heal all children in this World !!! Greatings and hugs from Germany !!! Love u ! Jennie

  74. Thinking of you today, Kerri. I just keep thinking that Kai has all the answers now, imagine that? He probably wishes you had some more answers, too. I pray for peace for you and healing.

  75. I have been following your story for a few weeks now and I just wanted to express my deepest sympathies.Kai’s story has inspired me, reminded me to not take a single moment with my own son for granted. Thank you for that. I pray that you are able to find peace and a small amount of comfort on this day. Kai’s spirit will live on in your memories and in the hearts of everyone who has heard and been touched by his story.
    With Love,
    Lisa

  76. Oh, Kerri, I remember so well those phantom sounds and looking for my daughter, calling her name and being so sure she’d be there in the days and weeks after she died. It’s so hard. I remember her twin playing WITH her after she died. It was bittersweet. The emotions are so overwhelming at times. Allow yourself to just feel, be and do whatever feels right in the moment. Even now, 8 years later, I still on occasion, say her name in conversation as if she were here. Maybe it’s just a Freudian slip, or, maybe she *is* here on some level…

    I’m so sorry you are experiencing this pain. Know I am holding you and your family in my heart and sending healing and Reiki your way. I’ve asked Meg to show Kai around in the next place. I’m here if you ever want to talk. Andrea can give you my contact info.

    Peace and Light,
    Kim

  77. You are a true inspiration and your writing has been prolific as well as straight from the heart…thank you for sharing Kai’s story. I wish you all healing and heartfelt prayers.

  78. I’m sorry to hear of Kai’s passing. I understand about the phantom cries. My grandmother just died, and I really thought I heard her call out my name today.

  79. You don’t know me. I happened to have stumbled across your blog through a friend. I have suffered a lot of great losses this year, but somehow your story has affected be more than any of mine. I know that might sound crazy and I don’t understand why that is. Maybe being a mother to a young child I can empathize and imagine myself in your shoes. I want you to know also that you are an inspiration, and your beautiful little boy as well. As someone who never prays, I have been praying (and crying) hard for you. No parent should ever have to go through what you have, yet for some awful reason, too many do. Thank you for sharing your story. I am so sorry for your loss, may you find peace…

  80. I happened to start reading this blog through a friend on Facebook. You have been in my thoughts since last week. There are no words that I could possible to say to heal your pain. I am so terrible sorry for your loss. You are an amazing strong women and I don’t even know how you were able to keep this blog. How luck Kai was to have you by his side. All I’ve wanted to do since I’ve read this is just hug you. Again I am so sorry for your loss and I hope with time your heart starts to heal. My love to you and your family.
    Jackie

  81. Rest in peace sweet baby. I hope you are enjoying your new wings. Fly high. From a mom to a mom I cant imagine your feelings right now but admire your strength. prayers to your son and entire family.

  82. your an amazing woman! i work with medically fragile children and unfortunatly for most of these angels life ends too soon. They are here for a short time not for us to teach them but for them to teach us everyday:) These children are a blessing from above and will forever be with you in ♥ God bless you and your family in this time…stay strong

  83. I found this link on Facebook and I normally don’t click on things like this but for some reason I had to… I am so deeply sorry for your loss, your story brought such tears to my eyes, I have a son that is just 8 weeks old and I cannot even imagine, my prayers are with you and your entire family … You are so strong and the world stands behind you, you are forever in our prayers. Your son is with god and will always be around you. Stay strong!

  84. Here I am crying at 8:11 AM. This is such a sad story. It brings back some sad memories. My best friend’s baby was born on Memorial day 1978 and he had a massive cerebral hemmorage while she was feeding him. He died on Labor Day Sept. 2 1978. Jared. Although she has moved to Philly we talk at least once a month. She now has 2 grown children and her daughter is now pregnant with her second child. I love and miss you everyday. I will keep you and your husband in my prayers. f

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