Flash backs and Memories

After almost two years I still have a hard time recalling Kai’s laugh, or the feel of his soft baby skin against mine, or the smell of his wispy blond hair. These fleeting moments of joy are still deeply buried under the smell of medicine and formula and vomit that has permeated my being.  The restless sounds and endless crying nights are always there to haunt me if I listen.  It still takes great effort to piece together the happy memories or even just the everyday I have stored somewhere deep inside my brain.

Three times now I have been overwhelmed by my mind forcibly recalling him back to me, if only for a moment.  Last year in the spring after he died I had a flashback.  I was driving towards Boston down the mass pike as I had a million times with Kai.  This day was unremarkable and my head was far from any deep thought, carefree.  In an instant the world in front of me vanished and I was suddenly entrenched in the moments of Kai’s last breaths.  I was holding him and crying silent tears just as I and done that night. The pain filled me as I continued to drive, completely unaware of my actions.  The pain I felt that day driving down the mass pike felt even stronger than the night he actually died.  I could smell him and I felt his hair.  I felt his warm body, limp in my arms.  And in a flash it was all gone.

That flashback terrified me a year ago, but there have been days since where I have wanted nothing more than to allow my brain to fill me with that type of pain and love again.

Last weekend I drove to Newton to pick up some thing of work.  It was a beautiful crisp autumn day.  The roads were free of traffic allowing me to admire the sun beaming throughout the white puffy clouds and take in the magic of the red and orange leaves gently falling to the ground.  I felt peace and joy as I once again drove down the mass pike just as I and so many times before.  This day I felt him with me with a smile.  As I turned off the Watertown exit I embraced the memories beautiful memories of our weekly visits to Perkins.  I looked in the rearview mirror and I painted a picture of him sitting contently in his big boy car seat al dressed up and ready for ‘school’.  I remember a bit of the beautiful wonderful everyday life we sometimes got to live.  I took a deep breath happily soaking it all in for as long as my mind would allow.

It has taken almost two years to remember, to feel him just for a moment.

 

School makes me sleepy

School makes me sleepy

 

***I wrote this two weeks ago but never posted it. It has been so much harder to share these story since Kai has gone.  It is such a relief when I am able to write and continue to share Kai’s life with the world, but often my mind is to clouded to get it out.

Tonight I was reading the blog of another cancer mom and could not help but reflect upon the similarities of our stories, when we met, where we’v been and how far we’v come.

 

ty in now gorgeous

http://tylouis.blogspot.com/2014/10/crying-is-crippling-let-debilitating.html

I followed this blog when Kai was alive, when Ty was alive.

Ty died 2 years ago today, exactly 6 weeks before Kai lost his life. They were both spunky beautiful, wide eyed,  blond haired little boys who lived their short lives battling brain cancer.  Ty’s mom speaks with a raw honesty that truly helped me so much in the end of Kai’s life.  As Kai’s abilities were fading I pictured Ty on the couch at home with his momma and dad and little brother, fighting for their peace.  I knew we were not alone and I knew I could see him through this, as I had just watched Ty’s mom do.

A few months ago I met Ty’s mom. We knew each other from our blogs and our work in helping others as many of us cancer moms do but this day we sat in real life at a table full of amazing powerful, devoted, moms – who had all met after the loss of our children.  There is such a bussing energy and an overwhelming peace that surrounds those meeting of the minds.

I am so fortunate to have had many  of these opportunities in the (almost) two years since Kai has died.  I am so thankful to have been embraced by a truly amazing group of game changing women, who despite their own loss continue to dedicate their lives to helping to make things better for the next family.  In all of our respective efforts and mission we, often organically, show up at different fundraisers or advocacy event across the country and meet by chance, like the universe (or our children) are putting us in each others paths. It has been quiet magical at times finding ourselves together – the one place I can make NEW memories with Kai

Thank you to all of the mommas I have met in the after Kai…Cindy, Audra, Susan, Beecher, Kristine, Blyth, Beth, Jeri, Danielle, Kristina…my why me family and the many many wonderful families I have meet up at camp <3

everyone has a story to tell.

http://www.thetlcfoundation.org

http://mckennaclairefoundation.org

http://maxloveproject.org

http://www.stbaldricks.org/blog/post/missing-a-warrior-davids-childhood-cancer-story/

http://lucyslovebus.org

http://mckennaclairefoundation.org

http://courageousparentsnetwork.org

http://chrisweatherly.com/story-behind-the-video/keegans-story/

http://give.lovehopestrength.org/2013/Tanzania/JeriJones/

http://www.masonleachsuperstarfund.com

http://www.talonschristmaswish.org

 

 

 

 

 

Back to School for the Childless Mom

As a child, years were not marked or measured by the sequin dresses and party hats of January celebrations but by the excitement and nervousness of entering a new grade in school each fall. The first day of school brought a new beginning, a chance at rediscovering my place in the world—new friends, new interests, new teachers, knowledge. One year closer to graduation and collage and growing up. The first day of school represented endless potential and progress.

Identity in youth is transient, continuously blossoming with a beautiful angst and energy that is hard to recount now. Somewhere along the way, time begins to shift and patterns begin to stick and commitments and calendar dates trump spontaneous adventures, and one year inconspicuously turns into the next, passing in the cold January night. I chased my identity as it bounced for years between the ideas of who I might someday be- a student, a photographer, a roommate, a caregiver, a wife. All ultimately fleeting.

In the early Fall of 2010, as the cyclical trend was shifting from beach bags to backpacks, my identity was shifting from who I was to who I will forever be: a mother. Becoming a mom was grounding in a way I had never admired before. I became instinctively fixated on the immediate needs, impending joys and continuous hardships of any given moment, surrendering to a place that temporarily transcends all concept of time. Glowing with the blissful insanity only a mother can sustain.

In the early days of parenthood, the outside world ceased to exist. Bus stops and party hats were traded for sleepless nights and days spent meticulously watching as his tiny feet grew right through his clothes: newborn, 3 months, 6 months. New Parents mark time in months and milestones, analyzing each smirk and burp, trying to enjoy what’s in front of us while anxiously awaiting what’s ahead, progress and endless potential.

This week, as the nights are growing cooler and the renewal of a new school year is upon us, I will be celebrating my son’s birthday alone for the second time. He would have been 4 this year. I have all to quickly arrived at the dreaded moment in time where he has been gone as long as he was here. He would be a little person now, not the 2-year-old baby he was when I last held him in my arms.

Last week, as I sheepishly shuffled passed the family filled back-to-school aisles at the store, I couldn’t help but wonder what it feels like to parent a child going back to school. I watched with envy and also a quiet enlightenment that no one can see or possibly understand. I smiled awkwardly as I watched the frantic families gathering supplies for the winter ahead. I wanted desperately to tell them to step back for a moment and take it all in. I wanted them to know just how precious this mundane, sometimes infuriating task of typical life is. Because once it’s gone it’s all you long for.

I miss my little boy. I miss the mother I was and the mother I could have been. I miss the potential for what our life together could have been.

It is unlikely I would have ever had the need to take my son back to school shopping for notebooks and pencil cases, yet I imagine I too would still struggle frantically to prepare. I can imagine him dressed in his back to school outfit, sitting in his little wheelchair waiting with mom for the bus. I can imagine his long bus rides to a specialized school that could accommodate his needs- his backpack full of communication devices and therapy toys, his lunchbox housing a feeding pump and medication lists. I imagine I would feel conflicted between the relief of having a moment to myself while he is at school and the terror of not having him by my side all day. I imagine that as different as our back-to-school would have been this year, in many ways I would feel just like every other mother. An identity that with each passing season, each new beginning, each calendar year, is slipping further and further away.DSC_1313_2

Identity | What’s in a T-shirt?

Another guest post for the Courageous Parents Network.  

http://courageousparentsnetwork.org/13-whats-in-a-t-shirt/

As a teenager, I spent hours scouring the Salvation Army and Goodwill shops for the perfect retro T-shirt: musty, holey, faded. Size didn’t matter nearly as much as insignia: Yoda, the Three Stooges, and my long time favorite ‘china’ written in kanji. I wore that shirt until it literally fell off of me and then I tied it back together and wore it some more. Some of my prized possessions from my dad’s collection of old travel t-shirts and his letterman jacket. It’s amazing how, as a kid, you can be nostalgic for a time you never experienced first-hand.

This basic garment has been around since the early 1900’s. Beginning as a basic under layer, the T-shirt has morphed into a visible form of comfort and self-expression. The T-shirt is now worn as badge of honor, a tactile history of who we are, where we’ve been, and where we’re going. A collection of good T-shirts is essential to every wardrobe, and the one we choose to wear each morning is a declaration of what we are willing to share with the world that day.

When I became a mother, my Tee collection shifted. I traded my Salvation Army treasures for a more refined basic solid colored V-neck collection. Apparently I didn’t have much to say to the world at this time, and comfort and ease were more my priority. Sure, I still kept the occasional Red Sox T or travel shirt lying around, but those were used mostly for sleeping or going to the gym.

And then my collection shifted again, without my even realizing it.

It started shortly after Diagnosis. I was cold and lonely at the tail-end of a long, unexpected hospital admission and we took our daily walk down to the gift shop where I decided to purchase a sweatshirt. It was a grey and blue-stripped zip-up with the words “Children’s Hospital Boston” screen-printed on the front. Not my usual attire as of late, but draping myself in that fluffy new sweatshirt fleece was the warm yet safe, artificial hug I had been longing for. “It’s okay,” the fuzzy fleece whispered, “You are safe here. You are doing the right thing. This is where you belong.”

An actual hug at that moment would have been too much to bear; a sweatshirt hug was just about all I could handle.

My world was shifting rapidly, minute to minute, and I could hardly keep up. In two short months I went from play dates to hospital stays, and my idyllic identity as a new mom was being stripped away rapidly. As we made our way back to our room, a nurse noticed my new purchase and smiled, “It’s official, you’re one of us now!”

I glanced at our reflection in the glass-paneled door in front of us. My baby was sleeping, momentarily unaware of the wires and tube that had become a permanent extension of his little body, his new identity: Cancer. I stood behind him, glaringly aware of my new identity. I stared at my shiny, all-access, VIP parent badge that proved my status within the hospital walls. My badge of honor. And now this commemorative Children’s Hospital Boston sweatshirt would prove my status to the rest of the world. A tactile history of Where I’d Been and the new Who I Was. I am the mom of a sick kid. I am now one of them.

This was just the beginning.

As the months went on and my son’s cancer was treated and treated, the colors and insignia that filled my drawers shifted from Red Sox and travel T-shirts to those of fundraising walks and cancer camps. I found myself wearing butterflies, awareness ribbons and tie die everyday. Even the color of a simple solid V-neck T now meant something different to me: gold for childhood cancer awareness, grey for brain tumor, green for Cerebral Palsy, blue for Rare Disorder awareness day. Each cause has its own color, logo, month, T-shirt, and I wanted to support them all—plastered across my chest for the world to see. I was identifying with all of it. They were all becoming a part of me.

Before I knew it, my entire wardrobe had morphed into a walking billboard for children fighting for their lives. Awareness, support and fundraising had become my identity inside and out. These T-shirts, hats, and accessories became a new and complicated status symbol, trying to keep up with each new diagnosis and death. As the rest of the world was collecting Alex & Ani, my wrist was filling up with precious and prized silicone wristbands—friendship, connectedness, identity— each one representing another child’s struggle and story. The ornaments I adorned all had specific meaning and purpose, eliciting conversation, creating awareness, and advocating not just for my son, but for all our families. I felt a part of something bigger.

These symbols, colors and awareness days connect us to people across the world, allowing us to not feel so alone. Our T-shirts tell our story. And for me, they provide me with an outward unspoken identity that I so desperately want everyone to know: “My son had cancer.” “I am still a mom.” “I continue to advocate for all of our kids.” This is who I am. This is who I was meant to be. And I am nostalgic for the time that will never be, letting the T-shirts speak for me: his life and my grief.

A New Camp: the year and 1/2 after

 

May 2013

Us cancer moms talk a lot about how helpful it is to be around others who “get it”. We always preface this gratitude with “I wish I didn’t know you” because that would mean our kids weren’t sick, but if I am in this at least we’re all in this together. As a cancer mom I attached myself to any access (support groups, online forums, camps, etc.) to this elite group that no one wants to belong to because there was the only place that I fit in.

Being a bereaved cancer mom catapults you to a whole new echelon, the elite of the elite. I would give anything to step back down a rung but just as before I am again thankful there is still a place where I belong.

After Kai died I became part of this exclusive club no one wants to belong to and I applied to a new camp –bereavement camp.

Kai and I had been to brain tumor camp twice together and after his death I relished in the hope that being back there again would elicit some sense of connectedness to him. I counted the days with an odd excitement, longing to be in that sacred space once more. A space I shared with Kai. A slice of the world where people with just one look, can deeply understand with a refined and hopeful solace because they too have been in our shoes.

As the final countdown to camp grew nearer my apprehension about going back was surging. The reality of being at camp without Kai was sinking in. Instead of packing I spent Friday convincing myself I could not go. I did no want to go. I don’t belong there. What I really want is to be back at brain tumor camp with our friends; discussing the latest clinical trials, surgeries and integrative therapies. I longed to see those amazing brain tumor kids swimming, singing, laughing, playing and up on stage. I decided I would just wait and somehow try to get myself back to brain tumor camp with my friends where I belong.

I made my decision early in the day and promptly settled myself onto the couch where I vowed to spend the rest of the weekend sulking. As the evening grew darker so did my sadness and quilt and self-pity. I cried in the silence and then as if on cue it happened, a phone call from an unknown phone number in Maine. Camp. My heart sank knowing I should at least pick it up and let them know I would not be coming but in that moment I couldn’t even face saying no.

What would I possibly say:

“ No I will not be coming. I don’t want to. I am not ready to talk about Kai’s death and divorce and all the other devastating things that have been happening in my life lately. No thank you, I’d rather just sulk on the couch at home. BUT I will see you in October for brain tumor week… where I belong!”

 Naturally, I let the call go to voice mail.

After a long, sad, torturous night I woke up early, called camp (bereavement camp) and began to apologize. Of course they hushed my excuses and told me that I am not the first person to not show up and that they completely understand how difficult it can be. They told me I was welcome to join them up at camp whenever I was ready.

I packed my bags.

IMG_1260

I arrived at camp late, nervous and still very unsure of what I had just gotten myself into. I had missed the first parent meeting, which meant everyone already knew each other’s stories and I still only knew ours. I walked into the dinning room, which was lined with dozens of portable shrines of the children who had passed. I had brought nothing of Kai’s except his tubie monkey “Hugs” that I still sleep with every night. They offered to print me some photos and to clear a spot on the table for our things.

I hadn’t realized until that moment, unbearably raw and alone, just how much I had previously hid behind Kai: his cute chubby cheeks, his big brown eyes his wheelchair, his cancer. Standing next to Kai I felt like I could do anything. I grew smarter and stronger and daring. I felt sense of belonging I had never had in my life before. Being Kai’s mom gave me purpose and gave life meaning. Everything I did, everything I thought about started with him. We were inseparable beyond the typical bond of mother and son. His constant presence beside me had come to define such a large part of my physical and emotional identity. Who am I without him next to me? How did I get here? Did all of this really happen?

There are certain moments in life where this all seems so surreal. Standing in that dinning room with all of these families; strangers at that moment, yet instantly bonded by the tremendous loss of each of our children.  It all just felt so impossible.

As I unpacked my bags and walked around campus everyone was extremely friendly and welcoming. In many ways it felt just like brain tumor camp. We played the same games and sang the same songs. We had ice cream for breakfast and a karaoke dinner. The veteran families helped the newbies along and it was all starting to feel a bit like home. The routine was familiar and comforting but every time I turned around I was slapped in the face by the inescapable difference of bereavement camp: all of the kids here are healthy because all of the sick kids are dead.

This is not my world. These are not my people. So much of the magic of camp (brain tumor camp) is seeing the kids; kids on chemotherapy with feeding tubes and wheelchairs, THRIVE at camp. I know nothing about raising a health child. I have nothing to contribute to the endless conversations about sibling grief; Kai was only one.

As much as the staff and other families reached out to make me feel comfortable and welcome I could not shake the feeling that my family no longer exists. In a matter of a few months my entire life has changed and everything I had worked for up to this point is gone. I was at family camp alone, numb, broken.

Maybe it was too soon. Maybe this just isn’t the type of support I need anymore.

 

November 2013

 I felt a bit more confident walking into camp this session. I am no longer the newbie. I came prepared with my  Kai shrine: his baby quilt, “Hugs” the monkey, and a small photo album – 30 individual photographs that curtly sum up his two short years of life.  I knew what to expect.

Oh and I brought my mom!

Deciding to go back to camp after the last time was a long and arduous process. Feeling so alone and conflicted with my own identity I wasn’t sure I would ever go back but I decided if i did go back  it would probably be best to bring a “support person” as they suggest.

After months of internal debate I invited my mom. She had been to camp with Kai and I once before. She is familiar with what it is all about and I figured hearing everyone else’s stories may help her to better understand why I do some of the things that I do.

The November bereavement session at camp includes a quilt-making program where families can bring their child’s clothing and work with professional quilters to turn the cloths into quilt. Kai’s one-year anniversary is approaching and I have tried to convince myself that maybe it is a good to think about what to do with his things. His cloths still hang in his closet and fill his drawers just the same as the day we left for the hospital that last time. I was excited by the idea of making a quilt out of Kai’s cloths but the thought of picking out which clothes I would be willing to cut is still too overwhelming.

Working on Kai’s baby quilt while I was pregnant is one of my favorite memories.  Innocence.  Our first 9 months together, before chemotherapy and surgery and death.  I didn’t even know if he was a boy or a girl yet. I spent weeks cutting fabric and laying out the perfect pattern; sitting over my grandmothers’ old singer as my belly grew. The thought of letting someone else make his memory quilt was inconceivable. If anyone was going to make a quilt out of Kai’s clothes it is going to be me… someday.

Even without any of Kai’s clothes I managed to dive right into the quilting and crafting that was overtaking over camp this weekend. I was able to print a picture of Kai onto fabric, which I used as the center of a small wall hanging. The picture is from his last weeks of life, around this exact time last year. It is a sad picture but it is intimate and real. I made an identical with a picture of Kai and his dad that I plan to give to him on Kai’s anniversary.

I spent most of the weekend working on those two mini quilts, staring directly into the pain –taking in the losses of the past year.

 

Of course amidst the crafting there was still lots of time for fun moments, side conversations and daily group discussion. I hoped having my mother sitting beside me would make the parent groups a little easier, but just as the last time I brought her, her presence actually made it a bit harder in some ways. I can’t help feel the weight of her pain piled on top of mine. I think about her all of her losses: her parents, her brother, her marriage,  her grandson, and the part of me neither of us will ever see again. I am thankful to have her by my side but this arraignment just amplifies my envy for the women across the room. The women whose husbands sit close by their sides. I sharply notice each pat on the back, every embrace, each pair of hands clenched tightly together. I am jealous, saddened, even furious at times of what they have that I don’t.   My mother is wonderful and has done so much for Kai and I but I want MY family back. I want a shoulder to rest on at the end of the day, a loving embrace, someone to share this pain.

Over our week at camp many people talked of their feelings of isolation.  Isolation from their communities, their families and friends.  Being the family with the dead kid has a tendency to do that.  People don’t know what to say. And we are just as much to blame.  We bereaved avoid grocery stores and holiday parties out of fear of being stared at from across the room, protecting ourselves from the (unintentionally) insensitive comments “he is in a better place” or even worse having to fraudulently explain how ‘well’ we are doing as to not bring down the crowd. We dread making new friends for the anxiety and torture of answering the inevitable “how many children do you have?” The loneliness and isolation we all feel living in the world outside our little club can be unbearable at times. At camp it’s what unites us. But even here I can’t help but look around and think, “Well, at least they have each other.”

Having lost my only child and my marriage in a matter of months makes me different from most people at family camp, but after days of tantrums and isolating myself from the rest of the group I heard another mother say, with tears in her eyes, “ We deal with it so differently. It’s like I’m living through this alone. He is right next to me and still I feel so alone. ”

As Kai’s one-year anniversary approaches I am plagued with the decision of what to do to honor him. I have to decide weather to share this day with our friends and family or live it completely alone. I, alone, have to decide when it is time to pack up his room or cut up his cloths to make a quilt. I do not have a hand to hold or a shoulder to cry on at the end of the night. Yes there are times they have each other to lean on and that is something that I don’t have in my life right now, but much of the time each person is just doing their best, separately, to survive. Everyone grieves alone.

 

May 2014

A year later and here I am again, alone, up at camp. After bringing my mom last time I accepted that camp is a place I come just for me. As difficult as it is to come here alone having someone with me doesn’t really change my loss or loneliness. I used to imagine one day I would have a new partner by my side that would be willing to come here to support me. A person aware and enlightened enough to dive right in and walk the rest of this joinery of life and death by my side. One of my biggest fears is sharing my life with someone who doesn’t know Kai. But after the last session at camp I began to realize that maybe it is ok that this part of my life is just for me.

I came here this time a little more comfortable in my new skin and a little less afraid of being alone. Make no mistake I still came last minute and fought myself all along the way, but I am better at accepting that this is how I need to process it all to allow myself to get here. Thankfully everyone at camp has also embraced my unacceptably selfish noncommittal ways.

This time around I gave myself permission to sit back when I want to, instead of forcing myself to participate in everything. I gave myself the space to be a distant observer for talent show and blooper games and it felt ok. Surprisingly, the more I stepped back the more emotion I was able to let out. I cried this time more than ever and it felt okay.

The balloon release is one of the hardest parts of camp for me now. My heart just stops as soon as I release my grasp on that thin white string staring into the sky, trying to take in the visual enormity of all of those balloons floating together across the sky. It is breathtaking. Dozens upon dozens of wishes, message, and tears floating up, bridging the gap between this present moment and all of the lost future we will never know. The hopes and dreams for our children (or brother or sister) floating up higher and higher in a playfully twist of fate. A mass of epic symbolism fading into the sky.

As the tears began to roll I grabbed my friends 11-year-old son who lost his baby sister a few months before Kai died. I hugged him as his parents sobbed beside us. Slowly we grabbed his sister and fused into a larger huddle. I felt guilty for intruding on their family moment but I was so thankful to feel a part of something bigger than me.

Sometimes I think it is these calculated tear-jerking moments that keeps drawing me to camp. Permission to miss Kai openly, with others, in a way the rest of the world would rather not see.

 

Earlier today some of the older (18+) bereaved siblings came to talk to our parent group. I remember last time when they came to talk I felt so connected to what they were saying. Maybe it was because I felt more like a child as my own mother sat next to me, or maybe it is because these young adults take on many parenting roles when they have a sick and dying sibling or maybe it is because they are able to talk about these feeling of grief in a way that is just to difficult for us parents to let out. Part of it I think is that they are young adults talking about building new relationships in collage, work, dating, and struggling with where their dead sibling fits into all of that. They do not have children or spouses; it is just them and it is just me.

This time when they came to speak I was able to gain a whole new, surprising insight from their stories. They are beautiful, insightful, inspired children that were forever changed by the loss of their sibling. They are grown up children who live an amazing understanding with their parent’s grief, as each member of the family grew, over years, into this screwed up version of enlightenment together.

When asked how they feel when they see their parent’s cry, a 19-year-old collage sophomore said,

“I usually just go and give her a hug. I know she is missing my brother and I miss him to. There is nothing either of us can do to change it. All I can do is hug her.”

He spoke with such wisdom and purpose. He spoke of his brother with pride and a warm gentle smile; glancing across the room to his mother who sat silently weeping and beaming all at the same time.

For the first time I found myself immersed with this insightful, life changing, healthy child. I felt a sense of joy and pride for this child, who isn’t even mine. A pride I had previously reserved for my special kids- the brain tumor kids with their overwhelming struggles and endless light. I found myself, for the first time, mourning the loss of what the future could have been. Mourning the loss of the healthy, insightful, loving adult child Kai will never get to be. Imagining the thought of raising such a beautiful and profound child as this young man brought me to a sadness and loss I had not been able to face until today. It is piercing.

As I walked back to my room tonight, our last night of camp, I passed to watch all of the families out playing in the yard. Dads playing ball with their kids, teenagers giggling –sounds of pure joy bouncing back and forth between the tall trees that have seen so much. Everyone soaking in every last ounce of their time here together.

I am starting to think these typical healthy kids are pretty amazing. Maybe ordinary life is in fact extraordinary. Maybe normal would be okay.

Maybe, someday, I too will have a remarkable adult child who loves the little brother he never knew.

Maybe, someday, he will know enough to just give me a hug because most of the time that is all any of us can really do. IMG_1535

A chance encounter

4/14/14

Today the roommates and I took a drive to eastern mass for a workshop and found ourselves with hours to spare upon our arrival. As we followed the GPS to our destination Ashley noticed a sprawling cemetery that surrounded us on either side of the road and suggested we take a walk through to kill some time. It had been a nice day, but by this time clouds were rolling in, the wind was picking up and the last thing I wanted to do was spend time walking through some random cemetery. The last time I had been in a cemetery was the day after Kai’s ‘wake’. I vetoed her request instantly but as things typically go when Ashley, Joe and I are together we started a healthy debate exploring each of our complex, and sometimes confused, feelings on cemeteries.

None of us are religious and we have had this cemetery debate many times in our lives, of course most recently and importantly when trying to figure out what to do for Kai. Growing up I took a stance against cemeteries sighting that they seemed, to me, to be a wasteful use of the earth’s precious land. As Kai was dying I considered the dedication of this land in a different way.

Driving through those frozen cemeteries in November 2012, with an urn full of my baby’s ashes, the decline of the earths natural habitat felt like a distant and impossible problem to concern myself with. My mind that day was small and singular, only able to consider the precious life of my one and only son. The vast world was closing in around me and I wanted so badly to just feel something in those cemeteries that day. Something that told me it would be ok to bury his ashes, to lay him down to rest. With every turn down the next tiny empty cemetery road  I begged for some guiding light that would tell me “This is the spot”. I so badly wanted a spot in the world just for Kai where everyone, anyone could visit him, honor him – see that once he was alive.  At the same time the thought of visiting Kai at some cold and lonely cemetery filled me with dread. I could not stand the thought of having him so far away from me.

12/3/12 I don’t want it come here to remember Kai. I don’t want to sit here surrounded by shiny stones of people I don’t know, with my little baby under the earth trapped in an urn glued shut. I don’t believe in cemeteries I never have.

Kai’s ashes remain centered atop my black metal dresser, tucked between a collection of candles and photos, a tiny shrine. I had not thought about the cemeteries again until today.

As we drove past the cemetery, in my protest, I began to feel something familiar about this road, this view. After dinner, still with plenty of time to spare, we drove past again and this time it came to me…I think my grandparents are buried here.

We pulled into the main entrance on the left and stopped at the immediate fork in the road. Left or right? As we slowly rolled down the hill to the left we continued our debate as we studied the stones, reading the names aloud.   With each turn down the next tiny empty cemetery road the debate inside me grew more complex. My mind diverged; feeling increasingly uncomfortable with my surroundings and equally excited at the prospect of finding my grandparents grave.

As we began the loop back to the entrance driving up the last road at the edge of the cemetery I knew this was it. We got out of the car and walked right to the headstone “MOREY” with four plots: my grandfather, grandmother, my uncle John who died in his 30’s and a spot for my uncle Greg (who has Downs Syndrome) who someday –far in the distance, will also be buried here.

20140428-145113.jpg

 

As we stood over their grave I couldn’t help but feel some sense of accomplishment, some sense of honor and pride sharing this moment and space with Ashley and Joe. Our debate roared on and Ashley pointed out the old gnarled trees and the chirping birds chasing each other along the fresh spring grass. A peaceful nature surrounded us. What better use of the earths land is there?  Joe studied the dates on the surrounding stone, noting the age of the deceased trying to build a body of clues to categorize, creating a history from the most basic facts, breathing a story of life into complete strangers we just happened to come upon today. Legacy.

I was drawn to a stone two rows down that was shroud in brightly colored Easter eggs and stuffed animals. It was obviously the stone of a child. As I walked toward it I wondered how this child had died. I thought about a mother, father, and sibling sitting over this grave delivering these symbols of life to this spot, a stone, on this earth that was starting to feel less and less lifeless to me. I grew frustrated with the basic facts inscribed on these headstones -name, date, and if your lucky some quote about how precious life is on this earth. I want to know more.

I thought about the idea of someone just happening upon Kai’s grave, if he had one, as we did today with this child. I wondered if it would be covered in seasonal toys. I wondered if someone would notice the devastatingly short distance between the dates: 9/5/10-11/27/12.  I wondered if they wonder how he died.  I felt their pity as I stood over this child’s grave, wondering all of these same things.  I wondered if I was wrong about this whole burial thing.  Am I somehow denying Kai the opportunity to be discovered, thought about, loved by some chance encounter of stranger walking by?  Am I denying him the possibility of some historical recognition, a stable sacred space on this ever changing earth by keeping him selfishly, safely tucked away in my own private shrine??

Maybe, but what if no one comes?  What if no one notices? What if I want him back?

I can debate this over and over in my head convincing myself that either side is the right thing to do but the truth is, they are both terrible.  The thought of Kai being buried amongst a bunch of strangers in a place that I can not reach over and touch any time I want still seems impossibly final to me still.

For now Kai’s remains remain with me right where he belongs.

20140428-145126.jpg

 

 

Medical Research and Palliative Care

Re-blogging  from the Courageous Parents Network.

http://courageousparentsnetwork.org/post-4-this-is-not-a-choice-we-need-to-fund-medical-research-and-palliative-care/

By Blyth and Kerri

 We are both moms who have parented and loved children who have died from pediatric illness. One child died from a brain tumor that did not respond to multiple therapies and one child died from a genetic illness for which there was no treatment or cure.

 Two entirely different diagnoses and two entirely different treatment plans and trajectories.

 Both of us care deeply about research, of course, so that the children that follow ours can live and thrive and so that their parents can be spared such grief.

But just as equally, we care about palliative care. Here, we each explain:

From Kerri:

Research, statistics, scans, and labs relentlessly occupied a large amount of my brain while my son was fighting for his.  I relied heavily on the data presented in the most recent and innovative clinical trials.  He was seen at one of the leading cancer institutes where he was treated by one of the most influential pediatric brain tumor researchers in the world. I collected journal articles and learned to decipher radiology scans. We rallied and relayed and walked and ran all through his life, hoping our efforts –this research, would catch up while we still had a chance.

We live in a time where cure for many is within our grasp.  Scientific advances made within my son’s two short years of life are now changing protocols, and will hopefully one day lead to saving more lives. It is an exciting and hopeful time in medicine and it goes without saying that research is the path to discovering less toxic, more affective treatments. But improving the experience of families who are currently in the NOW is pressing and it is something that does not take decades of research.

Despite continued medical advances, treatment for pediatric cancer is far from precise.  Research, statistics and scan results can be complicated and sometimes misleading, leaving families under-prepared and increasing their risk of fear and regret concerning treatment choices and outcomes.  At diagnosis, my son was slated to be a long-term survivor.  He was lucky to have had a low-grade, non-malignant tumor that children often live with for 20 years or more.  These were our statistics.  This is what the research has shown.  This was our hope.

Our reality, however, was that his tumor was large, he was diagnosed at a very young age and his quality of life was diminishing before my eyes.  I did not allow myself to be seduced by the promising statistics that filled my son’s prognosis because I knew he was only one person.  It did not matter to me that 80% of children with his type of tumor survive.  If I considered the 80% who survive long-term, I had to give equal consideration to the 20% who do not.

Research is amazing, necessary, and quantifiable.  But we also need to recognize, name and support the immeasurable that is also so necessary—the home visits, loving phone calls, peer-support groups, and the every present goal of quality of life.  In the midst of the numerous treatment protocols, scans and studies—all focused on his survival—it was the peripheral support teams, early intervention, peer-groups and palliative care professionals that proved to be the sounding board to whom I was able to surrender my fears and who helped me fulfill my goals for my son’s life.  Having a team that embraced my attention to quality of life allowed me to accept the research in it’s entirety, instilling confidence in the decisions I made each step of the way, no matter the outcome.

After my son’s death I have developed an even greater appreciation for the influence these support services had on my ability to cope. Having a strong understanding of all of our options during treatment made for clearer decision making when we found ourselves shifting focus to end of life care.

Palliative care is a vital part of every treatment protocol, no matter the projected outcome.  Even with a positive prognosis, most often parents are considering the potential of their child’s death and suffering right from diagnosis.  While promising statistics and an optimistic outlook from the medical team can go a long way to fostering a manageable experience for families, I believe that it is through the palliative care model that families are able to take an educated and empowered role in their child’s care, enhancing whole family wellness by minimizing regret and suffering throughout treatment, and for some, through to the end of life and beyond.

From Blyth:

My daughter Cameron and my nephew Hayden were diagnosed with infantile Tay-Sachs disease and both died at the age of two. During their lives, there was no treatment or cure for Tay-Sachs. Sadly, 13 years later, this is still the case. However, thanks to ongoing fundraising efforts of families like ours and tireless research efforts of scientists in academia, exciting breakthroughs have been made in the years since their deaths and hope is definitely on the horizon. Our family and friends alone have raised and given away more than half a million dollars to fund research for a treatment and we will continue to do so until a treatment is found.

But here is what we ALSO fund every year: pediatric palliative care—both programming and research—to provide better care for affected families. In the best-case scenario, given all that needs to happen to bring a treatment to these children—finding a promising treatment in non-human animal models, going to clinical trials in humans, receiving FDA approval, manufacturing etc etc—a treatment is at least several years away and possibly more. During this time, too many children will be newly diagnosed and families will be freshly devastated. Parents will suffer the anguish of hearing the diagnosis, of accepting the prognosis, of making difficult care choices for their child, of caring for the rest of their family, of providing a quality of life for their affected child, and then of watching their child die and healing the deep sadness that follows. Forthese families’ Here-and-Now, the support of an interdisciplinary team of pediatric palliative care providers—doctors, nurses, social workers, child-life specialists, chaplains, psychologists, arts therapists—is their greatest hope for the best care for their child and the well-being of their family.

***Also glitches have been fixed on the CPN website and ALL parent videos (including mine!) are now fully available for viewing @ http://courageousparentsnetwork.org/videos-by-theme/ 

click on a ‘theme’ in the tree

                                                 ex: DECISION MAKING AND PALLIATIVE CARE

 each question to the left is a DIFFERENT video

ex: 1.Decisions start from Day One

      2. Preserving his quality of life 

                      3. We weren’t going back to the hospital. 

 

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.