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.

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.