Kai's adventures, fighting an inoperable brain tumor

Couragous Parents Network

A few months after Kai died I was invited to a round table discussion for parents of terminally ill children, hosted by the Pediatric Palliative Care program we were involved with.  I was not exactly sure what this meeting would entail but  I jump at any chance to talk about Kai, even if the focus of the discussion would be about his death.  I sat at that table across from some amazingly courageous moms of terminally ill children and we had beautiful, candid, raw conversation about diagnosis and treatment and the challenges of raising a child with disability.  We talked about what it is like to raise a child you know is going to die.

This discussion was moderated by an amazing woman, and  fellow bereaved mom, Blyth Lord.  A mom who lost her daughter to Ty Sachs disease many years ago and has since dedicated her life to helping other parent cope with anticipatory grief, bereavement and all the living in-between. She has developed a network of resources for families The Courageous Parents Network: Empowering Parents caring for children with life-limiting illness.  

Approximately 50,000 children die each year in the US and an additional 500,000 children suffer from life–limiting illnesses. And for each of these children for whom there is no treatment or cure, there are the parents and families who are “living a loss” everyday. Unfortunately, while there are endless parenting books about raising healthy, typical children, there is very little out there for parents whose “new normal” means focusing on quality of life and staying sane.

 

I was honored, and once again jumped at the chance to share Kai’s story,  when I was asked to do a video interview for their website.

 

To watch the videos click here:

http://courageousparentsnetwork.org/videos-by-theme/

I remember feeling strong the day we filmed.  I felt optimistic and thankful that all of this, Kai’s life, has a greater purpose.  That Kai’s life gave me a greater purpose, the silver lining.  As the months went on my cloud got darker, but watching these videos for the first time yesterday brought it all back to me.

It is surreal watching myself on video on the internet but I hope that our story is able to help others.   As I watched and listened to all of the stories shared on the Courageous Parents Network I was reminded that no part of this journey is easy, we all do the best that we can in each moment.  We are all in this together and sharing our stories matters.  It helps us process and grieve and it helps others to know they are not alone.

A year and a half later I needed that reminder.

Please take a few moments to listen to and share the stories of these courageous families.

 

CPN2 CPN1

Our vision is that parents who receive a devastating diagnosis for their child will have the support necessary to care for their sick children with courage and confidence, and that the narrative of their family’s journey enables healing before and after the child’s death.

The better the Before, the better After.

https://www.facebook.com/courageousparentsnetwork 

Published: American Academy of Pediatrics Section on Hospice and Palliative Medicine

Several months ago I was asked to write a short piece for the Parent column for the American Academy of Pediatrics Section on Hospice and Palliative Medicine.  I jumped at the opportunity but I hadn’t been writing much and was actually in a pretty bad place at the time and for weeks I struggled with what to say.

How can I tell the story of an entire lifetime in 1000 words or less?  How can I relay the true heartache that comes with knowing your child is going to die? How can I express my deep gratitude for palliative care and what it meant ot our family.

I struggled for weeks to figure out my angle. In the end, with the help of some friends with better editing skill than I, we realized the story was all right in front of me.

This journal is an amazing resource for palliative care and I am stunned at how much of this issue applies to Kai’s life and my life now.  I am honored to be a part of it.

aapSOHPM March 2014 Newsletter

 

This journal is an amazing resource for palliative care and I am stunned at how much of this issue applies to Kai’s life and my life now. I am honored to be a part of it.

13 months and 10 weeks -Gradutation

Today is graduation!

When I first looked into going back to school, when Kai was alive, a 13 month massage therapy program seemed totally doable.  I wanted to help people.  I wanted to help kids like Kai and Kai made me believe for the first time in my life that I could do anything.  I was determined to live life different.  I was a dragon mom.

 “He was totally helpless. That makes me want to live a big life because he never got to make any decisions on his own.” -Emily Rapp (dragon mom), The Still Point of the Turning World

Starting school 13 months ago, 10 weeks after Kai’s death, everything seemed utterly impossible.  For ten weeks I had been living in my own little bubble.  I frequented the places where Kai and I went.  I talked only to people who knew him. I spent my days trying to connect to the world again by helping other families through Kai’s Village.  I spent my nights reluctantly trying to embrace the emptiness that had surrounded me.   Sitting in class that first day changed all of that.  No one in that room knew I was a dragon mom or a wife or nurse or therapist.  No one knew my baby boy had just died and I ached to tell them, to tell everyone.

The past 13 months and 10 weeks have been some of the most challenging, confusing, inspiring and sad times of my life.

Everyday has been a struggle in one way or another.  The coursework was much more intensive than I and anticipated. My days shifted from event planning, hospital visits emails and phone calls for Kai’s Village, to days of locking myself in an empty room trying to memorize muscles and bones.  I stopped writing.  The quiet was gone.  I felt fragmented, scattered and shattered into a million pieces.  The more I tried to embrace this chaotic life I had created for myself the more distant I felt from the rest of the world.   School was taking over my life; a welcome distraction, sometimes, but at other times I was resentful. I didn’t have a moment to breath.  A moment to grieve.

I think I tried to quit school 3 times in the first 6 months.  The second half of our program everything changed.  Somewhere along the way I began to breath again.  I began connecting with people who did not know Kai and it started to feel ok. I made friends and found focus and drive for the work I was doing.  We started clinic and internship and through that new and amazing people were coming into my life every day.  People I shared and connected with.  People who helped remind me why I chose this path.  People I was able to help.  I was slowly beginning to building life after Kai.

So hear I am 13 months and 10 weeks later about to graduate. About to start work in a pediatric hospital massage program, helping kids like Kai.  Ready to create a new kind of (organized) chaos that allows room for quiet times and writing, meeting new people and reconnecting with all of my amazing friends and family who have stuck by me this year as I disappeared into the darkness.

I will be walking into that room today connecting my worlds.  I am excited to introduce my new friends to the people who have stood by me forever.  I am thankful that these people, who were once strangers, have come to know me as a dragon mom, Kai’s mom, a caregiver.  They have come to know Kai through my stories and sadness and drive.  These people who were once strangers grew to be the one who held me up on some of my darkest day. 13 months and 10 weeks ago I never thought any of this would be possible.

I can not thank you all enough, family and friends, old and new, for standing by my side no matter how much I have tried to push you all away.  Thank you for supporting me, for getting to know me, for listening to me.  Thank you for believing in me when I couldn’t.

I am excited for what’s ahead in a way I did not think was possible a year ago.

 “The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you.

If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope.”

― Barack Obama

Getting out of bed

The bitter cold finally settled in over Massachusetts this week.  I really don’t care for the cold but the past few weeks of mild winter weather were starting to get to me.  All I could think was This time last year the world was frozen. This time last year I was in a daze.  I was sitting in silence on the couch.  I was telling strangers that my son had just died.  I was numb.

As Kai’s anniversary came and went and I now try to participate in this Holiday Winter Wonderland of life going on around me I have been longing for the cold.  Longing for the numbness.

Between a lack of sleep, fighting a persistent cold since thanksgiving and just feeling sad, I decided to stay in bed and take a half day at school today.  As I sit here trying to rest and decompress I came across this post I wrote back in July but never posted.

July 22, 2013

I know everyone has those days.  The ones where you just really don’t want to get out of bed.  You don’t want to get dressed and present yourself to the world.  Those days where you don’t want to answer the phone because you really have nothing good to say.  I know we all have those days but I think us bereaved parents -especially in the ‘early days’ (which I am learning  is like the first few years)- we have more of those days than most.

Time passes differently after you’re child has died.  Some days you float through life forgetting how you’ve gotten from one place to the next but other days go on forever in an agonizing eternity, longing for nothing more than a dark quiet room and a soft pillow to scream into at the end of the night.

After a really trying few days I woke up this morning instantly dreading the day ahead.  Mark moved out two weeks ago and it has been a difficult adjustment.   Once he moved out it all became that much more real.   The house is empty and silent.  No baby, no husband, no life. Even the dog is getting loopy from the silence.  He spends his days sprawled out on the couch whining these pathetic little half whines with every exhale just so we’ll have something to listen to, or maybe because he as just heartbroken as the rest of us.

The first few days the silence was killing me.  When i say silent I mean silent.  I don’t even have a TV to serve as a distraction and mask the silence. After a few days of staring at the walls I started cleaning out Kai’s room.  This threw everything in my life into upheaval (a whole post for another day) that I am still trying to recover from.

Needless to say it has been a hard few weeks, or months, or years, but this weekend I hit a tipping point.  I let myself lay in the heat of self-pity, convincing myself over and over I will never again feel anything but this terrible emptiness and pain.  All of the work I have been doing with school and Kai’s Village and cleaning the house and getting a job, it all seemed dreadfully, overwhelmingly, pointless.   Nothing seems worthwhile or manageable.  The mere thought of ever even trying to be happy again gives me anxiety.   Maybe this is true depression – when you get to the point where even the thought of being happy makes you depressed.  Maybe it is just life after loss.

I feel like an out of control teenager.  I want to give up on the world and melt away into obscurity the way that only well written characters of good book or a movie can.  But in real life even doing nothing, even melting away into obscurity, takes energy and money and time.  And, in the movie – well, even the sad depressed teenager usually ends up being rescued by true love or falling into that meaningful dream job or becoming a rock star or something when they grow up.

But for me this is it.  This is grown up.  Ive spent the last ten years of my life getting to this point…and now it is all gone. I am 31 years old and I have lost everything.  I am starting from scratch.  My former life has de-friended me and I am now supposed to figure this all out, alone.  So I spent the entire weekend sitting here acting like a depressed teenager hiding from the world, unwilling to see the brighter side.  Unable to let go of the cloud that sometimes follows me, because the truth is my life is pretty sad.

I decided early in the day yesterday, in all of my teenage rebellion, that I was absolutely skipping school today.   As usual I have an extremely hard time saying no, taking the time for myself that I need and I wasn’t fully committed.  By the end of the day I convinced myself that I could probably make it to school, but promised myself that if I went I was certainly NOT doing anything or talking to anyone.   It will be all I can muster to sit quietly in the corner and hope that no one notices how much my life is falling apart.

So this morning as my alarm went off, I reluctantly got up and dressed.  I stomped around the house whining about how much I didn’t want to go.  I walked the dog and got in the car, kicking and screaming, and went to school.

The thing is, when you’re an adult who lives alone and you spend your morning reluctantly dragging yourself out of bed kicking and screaming, NO ONE hears you but YOU, and that is infinitely more depressing than any of the miserably depressing things I had pondered all weekend.

 “If a tree falls in a forest and no one is around to hear it, does it make a sound?”

But here’s the other thing,  I dragged myself out of bed to go to massage school. It’s hard to sit in a corner, feeling sorry for myself, doing nothing, when half of my day is spent being touched by someone.   It is hard to hold onto the anger and pain when someone who is so focused on relieving your pain is touching you.   Touch is such a powerful thing.  Getting up and dressed and out of the house, however reluctantly, is powerful thing.

So today after all my nonsensical tantrums thrown for me and only me, I went into school and was reminded that good things can happen even on the worst days.

 

-As far away as July feels to me right now, it is hard to look back and see how in so many ways I feel exactly the same.  Most days I get out of bed.  Most days I am able to see the good, however reluctantly.  A year later I am still trying to learn that sometimes its ok to say no.  Sometimes touch is just to much.  Sometimes it’s ok to stay in bed.

Next year will be different…too

http://kaisfightclub.org/2012/11/22/next-year-will-be-different/

This time last year my family gathered at Children’s Hospital for Kai’s last Thanksgiving.    He was so near the end that day I could not help but think how different thanksgiving would be from then on.  I could not help but think of all of the families who had already lost their children and were trying to celebrate despite their loss.  I could not help but think how I didn’t want to ever spend another thanksgiving out of that hospital, without Kai.

It has been a year and this is year is different.  The anxiety of the one year mark, Kai’s angleversary, started months ago and at some point early on I realized that although Kai was with us last Thanksgiving, this year his anniversary date  was going to come the day before Thanksgiving.

Next year it will be on Thanksgiving….

It took me a while to process and accept these dates and times. Trying to figure out a way to honor his death while also trying to celebrate Thanksgiving with my family seemed entirely impossible.

In the weeks leading up to Kai’s anniversary, one year since his death, I just did not know what to do with myself.  I wanted to run away, hide under a rock, scream and cry.  I wanted the world to stop with me because I could no long keep up.  Every morning lately has struggle to get out of bed, to get to school or work.  Every night has been a struggle to stop my mind from racing long enough to fall asleep.

This year is different and although I have many things to be thankful for, celebrating the one year anniversary of my sons death the day before thanksgiving is not one of them.  Having one year pass is scary.  It doesn’t seem possible to have lived an entire year without him.  I hate that I am so far from the last time I held him.  I hate that my firsts with and without Kai are over…

Thinking of how to honor Kai this year was very difficult.  I don’t have the thoughts and memories of siblings to influence our day.  I don’t even have the input of a spouse to lean on or bounce ideas off of.  The weeks leading up to this anniversary, despite being surrounded by so many amazing family and friends, felt very empty and alone.  I lost MY entire family this year and things will never be the same.

November 27, 2013 I packed up my car with some pumpkin whoopee pies, and a special glitter stick and drove into Boston in the torrential rain the day before Thanksgiving.  I had planned to spend this day quietly and alone, somewhere by the ocean but at the last minute I knew I would much rather visit my friend, Kai’s friends, who has been in the hospital for the last few weeks.

Getting into Boston was a breeze.  I drove through Allston to get to the hospital just as I had every week with Kai.  I’m sure its not the fastest way to the hospital but it’s through my old neighborhood and that’s the way we always went.  Driving down those lively, dirty, collage kid filled streets each week made me feel connected.  It was familiar and made me feel at home.  It represented a part of my identity that I clung to during those months of treatment, the part of me that lived before brain tumors and hospitals.  Driving those streets made me feel like I belonged.

Today it still felt like home but that drive is now forever embedded in my brain in the part of my life that includes brain tumor world and hospitals and Kai.   We drove that path so many weeks on our way to the hospital.  We took walks and ate at restaurants there, Kai and I and Ashley and Joe and Molly and Chelsea and Pat and Lisa and Bill.  I have years of memories in that neighborhood from my life before Kai and now I drive through there remembering the time I had with Kai.

It has been a while since I visited the hospital and a lot has changed.  There are new doors and new halls and new employees working at the desk.  What was once so familiar and comfortable is different now.  It is not the same place Kai and I lived last year.  Time is moving forward and things look different, people move on and next year will be different too.  Kai being gone one year is not the same as him being gone one month and next year will be even different still and I’m just not ready.   The more things change the more the memories start to fade and I’m not ready for that.  I don’t want to be that far away.  One year and one day, today.

I walked quickly through the lobby back to the old elevators that have not been repainted or moved since the last time I was there.  They look exactly the same as when I left them and that felt comforting to me.   My heart raced a little as I pressed the 9th floor button.  We stopped at 1 and 7 and then 9.  I step out,

“Thank god it all looks the same.”

I made a pit stop at the bathroom at the end of the hall.  The same bathroom I visited one year before on the night Kai died.  It felt ok.  I could do this.  I could go in and see our friends and be ok.

I had a great visit with our friends Hailey and Lisa.  We were in clinic each week together all through Kai’s treatment.  When Kai landed in the ICU last year and then transferred over to the comfort room Lisa came to visit every week while Hailey was waiting for chemo to start.  It was nice to go visit them and see Hailey so strong and know they would be going home soon.

To my surprise many of the nurses and staff still remembered me all this time later and Lisa told me they will still remember us next year too.  It felt good to be there, like Kai was close by.  Maybe this is the feeling most people get when they visit the cemetery.  Kai’s ashes rest in a little urn in my room that I see everyday, but taking time to go someplace outside of my everyday life to honor him felt good.  I’m glad I can do that I can do that in the hustle and bustle of the hospital instead of the quiet cold rolling hills of a cemetery.   This feel right to me.

After a few hours I took the long walk back down the hall and into the elevators to go home.  I paused a moment in the lobby to consider all the families who would be spending thanksgiving there tomorrow, all the families who were near death, and all of the families who would be spending thanksgiving this year without their children like me.  I paused a minute to remember walking out that door into the night a year before, the last time I saw Kai.

I agonized over what to do on this day.  I knew nothing would feel right and nothing would feel wrong but I still had to come up with something.  In the end Kai put me in the right places at the right time and I am thankful to have spent the day with some special friends and lots of memories.

On my way out the women in front of me paying her parking ticket was getting flustered.  I looked up to see what was going on and I watched as three different cards got declined as she tried to pay the $10 parking fee.  I told her I would like to pay her ticket in honor of my son’s anniversary.  I brushed over it quickly as her young daughter was standing right there,  telling her I was there to visit a friend and I asked if they were there visiting or for an appointment.  She told me they came in every 3 months because her daughter has diabetes.  She told me she just deposited money at the bank and she didn’t know why it wasn’t go through.  I asked her to please allow me to pay so they could get on the road and beat the holiday traffic.

The women behind the counter smiled as I signed the receipt paying for both of our tickets.  I had done so well keeping it together in the hospital all day but the minute that mom and daughter got on the elevator I sobbed.

I still don’t know what to believe about the after life or angles or spirit but in that moment I knew Kai was all around me.  He continues to change the way I live my life everyday.  His strength lives on in those of our friends who are still fighting.  Our memories remind me that now matter how much things change or far away we are my life will always be a part of his and his of mine.

This year as I try to drag myself out of bed, take a shower and put some makeup on to meet our entourage for Thanksgiving dinner,  I am thankful for the memories because sometimes that’s all we have left.

“The worst part of holding the memories is not the pain. It’s the loneliness of it. Memories need to be shared.”

Lois Lowry, The Giver

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Thanksgiving 2010

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.

****A warning it is a detailed account of his death.  Please consider this before reading any further.

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.

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This time last year

I hate that every thought I have, every event I go to, every changing of the seasons all I can think is “this time last year…I was with Kai…”  And now the thought that  soon I wont be able to say that any more, is devastating in a whole new way.  As Kai’s anniversary approaches it is really hard to believe almost an entire year has gone by.  I don’t want to believe it.  It doesn’t seem right.  Some days I feel like it was yesterday and somedays it is uncomfortably far away.  It is hard to think of how different my life is without him, yet I feel like he is still in my life everyday.

Today I woke up and looked out the window and could not stop thinking about this time last year.

This weekend last year Kai and I played.  I stayed up late making him a Halloween costume.  My mom spent the weekend with us to join in the joys of her grandsons 3rd Halloween.  We met friends at the park for trick or treat, went to a cancer kid costume party and attempted pumpkin picking for charity.

First stop was the little park in town where our moms group friends had organized a costume party.  I rushed all morning putting the finishing touches on Kai’s costume and putting together some ‘healthy’ treats to share.  It was beautiful out.  Crisp fall leave blowing off the trees as the last late rays of summer sun warmed us as we stood on the wet wood chips, soaked from the rain the night before.  I wore a t-shirt and flip flops.  It was too warm for Kai to wear his mommy made Harry Potter scarf.  I feel like I can remember every detail of this weekend last year.  It is the last weekend I remember before going into the hospital for the last time.

As we stood awkwardly at the edge of the playground I watched as whole families, mom, dad, toddler, newborn,  poured out of mini vans racing towards their friends on the swings.  The dads gathered by the cluster of strollers, rocking and swaying the newborns that were wrapped and strapped to them. The moms stood back prepping the treat table, wiping noses, disassembling costumes for better speed down the slide.  Kids jumped in muddy puddles.  I stood in the warm sun with Kai in his wheelchair by my side, playing referee to the conflicting thoughts fighting  in my head….

What a beautiful day to be outside, I thought.   I am so happy to be able to give Kai this experience.  I cant believe I was able to make his costume and bake a treat this morning.   I couldn’t have done it without my mother.  I am happy to have her here to share this moment with her grandson.

Our life had been extraordinary for a long time by that point, but this weekend felt even more so.

This weekend last year we were living day by day. This weekend last year we knew Kai was dying.

I was in a manic state rushing around from place to place, party to party as to not miss out on one minute of memory making opportunity.   I tried to convince myself that this is just what people do when you have kids.  You go to parties and pick pumpkins and ‘make memories.  But with every click of the camera came a consoling hug from a friend and the truth became harder to and harder to avoid.

We were invited to this party because Kai is sick.  We are making these memories because we don’t know how much time we have left.  Every time my mother asked people to squeeze in close to Kai for a pic, there it was…He is dying.  We must document this moment of his life because this is probably the last Halloween we have with him. 

I chatted with the other moms.  I cooed over the newest newborns and admired the other clever mom made costumes.  I smiled as I stood in the warm sun with Kai in his wheelchair by my side, playing referee to the conflicting thoughts fighting  in my head….

Will this be the last time I make him a Halloween costume?  Is he in pain?  Does any of this matter?  Why are we here at a park he can not play in trick or treating for treats he can not enjoy? Is he really going to die?  Please don’t let him die.  I don’t care if he ever jumps in muddy puddles or clammers for candy as long as I can hold him.  As long as I can keep him safe and comfortable and happy.  I will do anything.  Please STOP taking pictures and looking at me longing across the park as if he is already dead.

A group of 3 and a half year olds came walking over to Kai to say hi.  A little girl picked up his hand and turned to her friend and said

‘This is Kai.  He is sick and he can not talk”

They huddled around him and looked up at me for an explanation.  I told them he was sick but he liked that they came over to say hi.  They asked about his costume,  the ‘Z’ on his head, his little owl, his glasses.  Then they ran off to play on the jungle gym.

Later that day the girls mom messaged me to apologize for what her daughter said.  This mom was terrified that somehow her 3 year old had offended me, upset me, said the wrong thing.  In the moment at the park with the kids huddling around Kai I remember thinking how refreshing it was that this mom had told her daughter about Kai.  This little girl was not afraid of him.  She felt confident to tell her friends about him and for me it was a moment I will never forget.  To me it was a moment where I could see that Kai’s tiny little life meant somthing to those around him.  Kai had a friend and that little girl wanted to introduce Kai to her other friends.  And while that group of 3 year olds knew Kai was sick, to them he was not dying he was just here to play.

I am so thankful for this time last year with Kai.  The last days we spent together living his life.  Kai made many more friends in his 2 short years than I realized at the time.   Ever now and then I still get messages from my friends of stories of Kai’s littlest friends who still remember him almost a year later.  It amazing me every time how these little beings, 3 and 4 years olds, still remember their friend Kai.  I can not tell you what it means to me to hear these stories.  It fills my soul, usually on days I need it most, like Kai has planted this seed in your children to get the message back to me.  There is no greater gift at this time than seeing his life through there eyes.

There is no footprint too small to leave an imprint on this world.


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