brain tumor · Uncategorized

the last breath

This is the story of Kai’s death.  I wrote it the day after he died and thought about posting it many times before today but was just not ready.  Today, a year later, I want to share the last moments I spend with him.


Kai’s departure from this world was as labored and long as the day he was born. It was surreal like I was watching myself from outside my body, exactly the same as I felt during labor.  I was so focused on him that the rest of the world no longer existed.   It’s shock I guess, neurons firing and hormones pumping through the body in an attempt to keep us alive despite the unbearable pain.

Time ceases to exist and a sense of calm comes over you despite the extreme urge to scream.

…This can’t be happening.

The last few days he did nothing but sleep.

I was constantly torn between savoring every moment of time with him and trying to tell him it was ok let him go. I whispered in his ear that I was ready if he was that it would all be ok…trying to convince myself. Trying to prepare myself.

He was so gracious to let us hold him and touch him and talk to him in those last days.  I remember thinking to myself that if he were an adult we would not be bothering him this way. We would not be passing him around, touching his face, opening his eyes.  I wondered if it was too much for him, but we needed it.  I needed it.  And he didn’t protest.

Day and night blended as if all one big long dream. His eyes remained closed, his body limp and dry but his heart was still so strong. 
He went from breathing hard and fast to slow long pauses and everything in between.  By now I knew he was living in a place between here and there….wherever there is.  I knew all I could do now was hold him and pray he go peacefully.

As the hours and days passed I became more and more angry that this is how we let people die.  That every minute of everyday my baby was just wasting away,  dying before my eyes –slowly, quietly little by little and there was nothing I could do except be there and try to convince myself it was ok. Try to tell him I would be okay in hopes that that would somehow make it easier for him to let go.

It was agony.

I became sad and angry and resentful that his little body was so strong. His heart and his organs kept living on, while his spirit and mind were so far away from me. Feeling his heart beat felt like torture, waiting for it to stop…wanting it to stop, so he could be at peace. I made me so mad that because of the chemo and that stupid tumor we could not even donate his strong organs to save another.  Because of the chemo and that stupid tumor we had to just wait for his heart to stop beating and his lungs to stop breathing and that would be it.

The last night his breathing really changed. In the morning it was very low and quick and crackly from the fluid in his throat and lungs. We increased his meds all day hoping to spare him any pain, to spare us the pain of seeing him struggle. By the evening we got him to a good place where he was no longer struggling and he was able to rest and I knew this would be the night.

A few hours later his breathing changed again. With every exhale he made this tiny little ‘ahhh‘ sound. It was the sound of relief, euphoria, maybe shock I guess.  It was beautiful to hear that sense of calm and peace. I hadn’t heard his little voice in weeks and I couldn’t help but smile hearing him.  I couldn’t help but feel thankful that this is how he would feel as his body let go and he slipped out of this world.  He was peaceful and I felt an immense sense of relief that I had only felt one other time in my life –the all-encompassing relief I felt the first time I heard him cry.

I couldn’t take my hands off of him.  Ashley, my mom and I all lay on the bed intertwined in each other so afraid to look up or let go knowing it would be any minute now.

No one said a word.

As we lay there his moans turned from clam to scared. I watched his face winching in pain as his body put up one last fight for his little life.  Watching him struggle like that was the most scared and helpless I have ever felt in my entire life.  I tried to comfort him, my body curled around his surrounding him with every once my soul. Crying in desperation that this be over for him.   As I stared at him, terrified, his eyes popped open for the first time in days – wide open fixated in a place beyond this world. As I stared into his eyes a clear fluid started pouring out his noise and mouth. 
He was vomiting, silently. He didn’t move a muscle.

I thought this has to be the end…please let this be the end for him.

I scooped him up and he started to choke. Nurse Jess came in and out with one med after another trying desperately to ease his discomfort and spare us all from the agony.  The door swung open and closed as more nurses came in and out. Jess worked quickly and silently, one med after another. The room was spinning and at a stand still all at the same time.  Mom and Ashley backed away to the edge of the room trying to hold themselves up on the wall and I held him in the big bed, under the dim blue light of the room.

I held him so tight and close so ready for it to be over for him and so completely unable to even begin to imagine what I would possibly do when it actually was.  I held him, the room was quiet and his body was still.  I looked up at Jess and we stared so deeply into one another’s eyes I knew he was gone.  I knew none of us would ever be the same.

She slowly put her stethoscope to his back and turned to the clock and we all watched as the second hand ticked in slow motion.  She held my arm and told me he is gone and she slowly backed away.

He was gone.

It wasn’t at all how I had imagined.  I never felt his last breath like I expecting. He didn’t deflate like a leaky balloon. He just wasn’t there anymore. I sat and held him, just as I had before. I knew his heart had finally given in. I knew he was no longer taking in any air but holding him for those moments right after felt just the same as when we was alive.
  I held him for a long time all swaddled up in his favorite blanket with nothing but a diaper on, just like the day he was born.

I inspected him and smelled him and couldn’t take my hands or my eyes off of him. I stayed as close as possible afraid to feel the warmth leave his body. As long as I held him close my warmth became his and we could stay embraced like this forever.

I lay with him, his head under my chin still stroking his hair and touching his face now without looking. As the minutes passed I knew his body was changing and I knew I didn’t want to see him this way. It was time to let go but my body was so incapable of putting him down. 
 I looked down at him and there was nothing left of my baby. His body was changing.  He was gone and I suddenly felt an overwhelming urge to run.  I don’t want to remember him like this.  I can’t handle feeling his body so lifeless and cold.   I asked Jess to stay with him and I forced myself to get up and I walked out the door.

It was the middle of the night and the hospital halls were dark and quiet. My mom and Ashley followed me out staying a few feet behind, all of us trying our best to put one foot in front of the other. I felt like I was floating. I felt hollow and nauseous, like my body had left me to be with Kai. I felt like I could just collapse at any second.

I felt like I could scream or maybe just evaporate into the night like a ghost.  I felt weightless and like lead all at the same time.  It took all the strength I had to get myself to the bathroom at the end of the hall before collapsing or vomitting.  I walked in locked the door and dropped to the floor, numb, dizzy, empty blinded by the bright florescent light.  The tile floor was cold beneath and I began to shiver.  I pulled myself up to the sink and without looking in the mirror, splashed cold water on my face as if to convince myself that I am still here.  To just feel something.

As the water hit me I felt an uncontrollable thirst and all I could think was that I had to go back to the room to get my water.   I NEEDED to go back to Kai.
 It was to much to never see him again, never touch him again. I was not ready. It was worth the risk of seeing him like that, feeling him cold, seeing the color in his body turning…I would do anything to just kiss him one more time. It will always be worth anything to kiss him just one more time.

I walked back down the hall without saying a word.  Jess met me at the door and we all walked back in.  My water bottle was on the far side of the bed next to the window.  I walked over and grabbed it staring out the window afraid to look down.  I took a sip and sat down on the bed still looking out into the black night speckled with the glow of the hospital rooms in the building across the way.  Rooms where other babies were fighting for their lives, or perhaps descending from them.  Just knowing he was close was enough.

I took another sip and placed my hand on his chest, still looking out the window- now noticing the reflections of the room behind me bouncing back at me in the huge glass wall that had become our home. He was still swaddled in his fuzzy blanket and still felt so soft and warm beneath my hand.

It wasn’t long before I was lying with him, kissing him again, touching his hair.  He felt different now. He looked different.  I could no longer save myself from seeing his body this way, dead, but I could still hold him. I knew in my head that he was gone, but holding him still felt good. I looked at his peaceful little face peeking out from his warm soft fuzzy blanket and he looked just perfect and content just the same as the day he was born.


27 thoughts on “the last breath

  1. I have had today’s date indelibly recorded in my memory. I promised myself several times that if you posted something today I would wait until I was at home, by myself, to read it. But I needed to know. Thank you so much for sharing this. And I’m still so sorry for your loss. May you continue to heal and be surrounded by loving voices, hands, hearts. I’m sending so much love to you, and to Kai.

  2. So painful, and yet so needed today. Thank you, again, for letting us be touched by your words. As the craziness of the holidays descends, Kai’s memory and the lessons I have learned from both of you will help me to stay grounded in the true meaning of the season and remind me to be thankful for all of my blessings. Much love and many hugs to you and the rest of the village, as always.

  3. It still amazes me daily how a wonderful little boy that I have never met has touched my soul so deeply. I think of you and Kai daily and pray that you feel his presence always as I know he will forever be with you. Thank you for sharing today…. may each passing day provide you with strength to help you in your remarkable journey in helping others!!!! You have made Kai proud!!!!!

  4. I don’t know what to say… I found you through the tag ‘death’. But your loss is more painful and intense than mine. While it took you a whole year to post it, I could do it within a month. Your words have moved me deeply.

  5. I am so dreadfully sorry that you had to go through this – losing your child and losing a part of yourself. At the same time, I’m happy for you that you were able to spend those last hours lying with him, cradling him, letting him know you were with him, for I do believe that on some level he did know. Your memories of his short, precious life will be forever both bitter and sweet, but my hope for you is that the day will come when only the sweet ones remain.

  6. Words can’t express the depth and devotion of a mother’s love. Our children are truly pieces of us that are magnified. For if they hurt we hurt that much and more and should the unthinkable happen and a mother lose a child she will forever be missing a piece of herself. I think of you and your sweet Kai daily. I pray that you find peace and find a way to carry on without that piece of yourself being here in the physical world. He lives on in the hearts of many.

  7. Thank you so much for sharing Kai’s death day with us. For those who have lost a child, telling the story of their death is as vital to us as is telling their birth story. The analogies you make between the two are so insightful. I’m so sorry you and sweet Kai had to have this experience but I applaud your courage and expression of love for Kai in sharing such a personal, intimate and beautiful story and for putting your heart and soul out there for all to see and learn from.

    I hope you can feel Kai’s love around you today and always. You’ve found such a powerful way to honor his life and his memory. To continue to mother him. He has an amazing mama and you have one amazing guardian Kai on the other side. Sending you love,light and peace on Kai’s ‘Angel day’.


  8. Thank you so much for sharing this moment with the rest of us. The day I read the news of Kai earning his wings, it was tough, very hard, I remember how I was here in my office, and i had to quickly close my door, because i felt such a devastation. I always think of you and him. I’m proud of all you have accomplished, and all you have done for others. Please know that he is always with you.


  9. Beautifully written as tears stream from my face. it’s a tough tough reality that no one should ever face. I hope today a year later you have begun to heal whatever that may be. Thank you for sharing your story…

  10. I am glad you were able to write this down, and that by reading it, we are able to share in this experience…One always always hopes for that peaceful death…not everyone is awarded it..He was such a quiet determined fighter boy…Did not leave here easily…..Hugs, so many many hus to you…love always…

  11. This is a beautiful story, I’m so glad you found the strength to write of your last moments with your son. This must be a very difficult time for you and I’m pretty sure you are thankful for every moment, however brief, Kai was with you. May you find peace in your life and continue to heal from this devastating loss.

    With all sincerety,


    Sent from my iPad


  12. Although we have never met I have been following Kai’s story for a while now. My son, Declan was born on 9/4/13. Two weeks ago at his 2 month appointment a murmur was heard. We were sent to a cardiologist and then straight to children’s hospital where he was diagnosed with a congenital heart defect. He had open heart surgery two days later. We have been at children’s in the icu on both 8 south and 8 east for the last two weeks. We were discharged today amazingly.

    Kai was there. I felt him there with us. I can’t explain it but he was there watching over Declan.

    You are an amazing mom and an inspiration. I hope you find peace in knowing his spirit is still very much alive.


    Sent from my iPhone

  13. Dear Kerri,
    You are living the most difficult experience anyone can have. But the beauty of your soul shows through as you continue to share beautiful Kai’s legacy. Wishing there were words to ease your pain. Hugs forever. Thoughts and prayers are always with you and Kai.

  14. So honest and real and beautiful. Kai was blessed to have you as his mommy, as you were to have him as your beautiful boy. Prayers for you and Kai. Healing will come in time. Xoxo.

  15. Kerri, you are an amazing writer. Thank you for sharing this experience – I pray it releases some of the pain. When I wrote about my son’s death, it helped me a lot. I could feel so much within your words and I was anguished for you. I am so sorry for your unbearable loss.

  16. I want to Thank U for sharing this precious story of your sweet baby boy , I don;t know how you did what you did you are truly Amazing . My Heart and thoughts are always with you . I pray you have found some peace and comfort in your life . I am so sorry for what you and your son went thur ! Just know we all love you and pray you will find away to make things work Kai is with you always ,Love and Hugs

  17. Kerri, I am so sorry Kai and you had to go through this!! He was such a beautiful baby! He will always be your son. You will always be his mother! It doesn’t end because he is gone. He will be with you always in spirit and beautiful memories!!! ❤️

  18. three tiny letters created a beautiful legacy that lives on in everything you do, much love and respect surrounds you, I hope in your most painful moments you feel the warmth of that love all around you like his soft, fuzzy blanket

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