Stella’s Last Stand

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Stella’s Last Stand 

Stella is still alive.  She is clinging to life just as she always has, not content to go gently and lightly into the next world.  Over a week ago the Doctors and Nurses told us we had anywhere from hours to “a couple of days” with our girl.  We were told that the longest they had every seen anyone go with no food or water was 11 days.  Aimee and I joked that just because they had said that, Stella would go longer.  And she seems up for the challenge.  Today is day 11 for Stella and though she is surely dying, her heart continues to beat strongly and her breathing remains slow and steady.   We have been told that every breath could be Stella’s last, but that no one really knows how much longer she will hang on.

 

Aimee and I consider this to be Stella’s last stand.  Stella’s last F-U to anyone daring to tell her what she should do and how.  She has everyone on edge, circling her, watching and waiting for her next move.  She is in total control and we have no choice but to sit and wait.  

 

So…what do you do when you’re waiting for your daughter to take her last breath?  If you’re us you do all kinds of things, from the mundane to the meaningful.

 

You open up the door everyday to find a wonderful meal that some neighbor, friend or family member has provided that nourishes both your body and your soul.

 

You go to the tacky salon around the corner that has a gold frame light up Jesus 3-D picture that is not tongue-in-cheek, and ask the ladies there to paint your toenails the most vibrant shade of green they have, in honour of your daughter.

 

You pick out the outfit you’d like your daughter to be cremated in and gently fold it in your cupboard until you need it.  You and your spouse ask each other, “should we do the Dora pants, or the leggings?  Green you are my sunshine shirt, or pink smile, dance, love shirt?”

 

You ask Rev. Sarah from your Church to come over and do a beautiful little blessing for Stella.  Your family is somewhat torn between what they believe, but… “just in case”…you want to make sure Stella is covered.

 

You send your sister to Value Village and have her bring back white sheets that you rip into strips and decorate to wrap around Stella as “hugs”, so she won’t be alone in her casket.

 

You read every single comment on your blog and forums.  Some make you laugh, some make you cry, all make you think about what a powerful presence your little girl has been.

 

You sit around the living room until late at night and watch the TV show “Impractical Jokers” on DVD, and howl with soul-cleansing laughter at the antics of four friends trying to out-embarrass one another.

 

You get six cupcakes from a local bakery, and on October 18th you celebrate Stella’s 3 ½ year birthday with a rousing rendition of “Happy Birthday” sung on the King Size bed where Stella sleeps.

 

You take turns 24/7 sitting with Stella as she lay sleeping in bed.  You read her stories, sing her favourite songs, stroke her hair and are joined by various people throughout the day, all of them lounging on your bed.

 

You gently dab your daughter’s eyes to get the crusties out, wipe her mouth and apply Vaseline to her lips.  You change her diaper, give her extra doses of morphine from the pump in her thigh and pray to whatever God is out there that she feels nothing.

 

You watch her chest rise and fall, holding your own breath as you stare at her ribcage wondering if it will move again.

 

You carefully paint her fingernails green and her toenails purple so that she looks her best.

 

You ask your self and each other, “how can this be happening?” but there is no answer, so only silence follows.

 

You look out the window once in awhile but are afraid to leave the house.  The sun shines, it rains, frost appears on the window of your car, a rainbow stretches over the city, the moon comes out. But you never really know what day it is, or what time it is because you live 90% of the time in a dark bedroom lit only by two flickering candles in the corner.

 

You answer a dozen text messages everyday from your friends asking, “How is she?  How are you?”

 

You carefully and gently drag the baby bath into your bed and wash your daughter’s hair so the curls spring to life…just so you can carefully select some to cut off  and place them in a dusty old box by the bed.

 

You celebrate Stella’s brother Sam’s first birthday by inviting your whole family over for pasta and then letting him sit on the bed next where his sister lay dying , and blow out his birthday candles.

 

You bite the inside of your lip to keep from crying when you see how cancer has destroyed your child’s body, turning her into a pale, sunken eyed, translucent waif who is so thin you can see her heart beating steadily in her chest with you naked eye.

 

You forget to shower, forget to eat, forget to check your phone for messages.

 

You cuddle with Gracie in the bed next to Stella and watch Disney movies on the laptop, while Gracie continues to “play” with her sleeping cousin, inventing what she thinks Stella would do or say, decorating her still body with toys, bringing her gifts like rocks and flowers that she proudly displays on the pillow next to where Stella lays.

 

You whisper “I love you” in Stella’s ear 100 times a day.

 

You allow your heart to break over and over again, and just sit with the pain because there is nothing else you can do.

 

You laugh, cry, remember .

 

You live

 

as she dies.

 

 

 

Aimee and I wash Stella’s hair

Poppa and our boys:

Poppa and Auntie Heather snuggle Stella:

Naptime for Hugo and Stella:

Happy Birthday Sam!


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Growing Pains

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Growing Pains

 

Just like the Doctor’s told us 9 1/2 months ago, the tumour growing in Stella’s brainstem has slowly and steadily taken away her physical independence.  At the end of August she lost the ability to walk or put weight on her legs.  By October she couldn’t sit up anymore, or roll over by herself.  November came and she lost the ability to have bowel movements unassisted.  In December, we noticed her arms were not controlled any longer.  In January, her speech and eyesight started to decline.  In February she lost the strength to hold her head up. In March she started not being able to eat anything but liquids and soft foods.  In April she began choking on her own saliva, losing even the ability to swallow her spit.  Today she seemed unable to speak at all.  Even the ‘yes’ and ‘no’ she had managed to squeak out the last several weeks was gone.

 

But, ironically, while parts of her have disappeared, in other ways she has grown so much.  The baby fat cheeks and curly hair have given way to a little girl’s thinner face, and hair back in a pony tail.  In fact, her hair has gotten to long that when we bathe her and the curls straighten, it reaches down past her shoulders.  She has gotten so tall that she is in 4T pants, though she is not yet three years old.  When she is sleeping at night, I sometimes play a game where I pretend she isn’t sick, that she won’t die, and I marvel at how beautiful and perfect she looks.  It always reminds me that even though so much of Stella has been taken away, she is still here.  And in the last three months especially, she has proven to me time and time again how very present and ready to live life she truly is.

 

Recently I realized that I sometimes let my own protectiveness of Stella and my own views of what she “should” or “should not” be able to do, colour the activities we do on a daily basis.  But Stella keeps challenging my perceptions of her abilities, and with each lesson she teaches me, I can literally feel my heart expanding and collapsing all in the same breath.  I keep telling myself to be brave, but I can’t always do it.  A few weeks ago, I realized that COURAGE is nothing more than tiny pieces of hard-earned grit, all glued together with hope.  And with that in mind, I’ve been able to pay attention to the lessons right in front of me.

 

For a few months, I told people Stella wasn’t up for play dates.  I was super-sensitive to the fact that her friends could run around, and talk, and go potty and she couldn’t.  I never wanted her to compare herself to them and wonder why she couldn’t do those things anymore.  It broke my heart to remember how she used to run and jump and play, just like them.  I didn’t want to go somewhere and compare my kid to the other ones, so I tried to shelter her and keep her home with me, where I knew she was safe and not judged.  But Stella missed her friends.  So, I started doing a few selective play dates.  And I quickly learned something.  The other kids didn’t see Stella as someone who couldn’t do the stuff they could do.  To them, she was still their friend and they just wanted to play with her.  Without begin guided or told by adults, Stella’s friends seem to instinctively know what to do to interact with her in meaningful ways.  They don’t ask to play chase or run around in circles with toy shopping carts.  It tuns out, Stella and her friends can play just fine with each other.  They can sit on the couch and read books, paint fingernails, get out the Doctor’s kit and take turns listening to each other’s heartbeats.  They can feed dollies, pull the basketball net up to the couch and take turns throwing it.  They can go down the slide and “catch” each other at the bottom, or play hide and go seek in the playhouse (Stella hides, and her friend seeks her).  Most importantly, irregardless or ability or language, Stella and her friends connect and enjoy each other’s company. It is beautiful and heartwarming and stunning in its simplicity.

 

For a few months, I didn’t want to take Stella to the park because I kept thinking that there was nothing she would be able to do there anyway.  I didn’t want her to feel badly that the other kids were running around.  I didn’t want to have to deal with the stares from other parents wondering what is “wrong” with my perfect daughter.  I didn’t want to notice that when you bring your child to the park, and they are a bit different looking, other parents don’t engage you in the idle playground chit chat of asking your kid’s age, daycare status, name, where you live, etc.  I thought I was protecting Stella by staying away from the local playground, but it turns out I was protecting myself.  And Stella wanted to go to the park.  I was nervous, but I took her.  It turns out she CAN go down the slide, I just need to go down with her.  It turns out she CAN go on the swings, I just need to sit her on my lap.  It turns out I was right that mostly I would just get sideways glances from other parents with no conversation, but I don’t care one bit.  I’m there to make Stella smile.  And when we’re swinging weightlessly in the air, she giggles with glee and abandonment and, in that precious moment when the sky gets a little closer to us, nothing else in the world matters.

 

For a few months, I didn’t want to take Stella swimming.  I thought the water would bother her sensitive skin, that she would be scared of the crowds.  I worried that she would feel overwhelmed and out of control in her body.  But two Saturday’s ago, my sister asked if she wanted to go swimming and her entire face lit up.  She hasn’t been swimming since early September, I was surprised she remembered what it is.  I kept expecting Stella to change her mind, but she had a huge smile on her face gazing out the window, the entire time we drove to the pool, and when we arrived she seemed to recognize Variety Village where we used to go.  She smiled and laughed in the pool and I think the feeling of freedom she experienced made her feel good.  We splashed Auntie Heather, we twirled and whirled in the water, we sank a boat.  I held her in my arms and she floated weightlessly.  It was magic.

 

For a few months, I didn’t want to remind Stella that she used to draw and paint and colour.  I thought the fact that she can’t see the colours properly, can’t communicate which ones she wants to use, can’t hold a paintbrush or pen in her hand, would be discouraging for her.  I didn’t want her to remember that she used to be able to do something— something she loved— that now she can’t.  But two months ago, Stella wanted to paint.  I put her in her smock, sat her on my lap, put my hand over hers and helped her dip the paint in and draw the paintbrush across the page.  Her head dipped down, and drool smattered on the paper.  It made me sad.  She kept trying to bite the paintbrush, and I kept admonishing her and reminding her that we don’t eat paint or paintbrushes.  Then she finally managed to jerk my hand up to her mouth and clamped her teeth onto the paintbrush.  She leaned her head down to the paper and started to paint.  And she smiled.  She had a huge smile.  She was proud of herself.  I was proud of her, too.  Now whenever people come over, she wants to paint with them.  Friends, young and old, gamely put paintbrushes in their mouths and let all the colours of the rainbow paint a picture of determination and wonderment.

 

For a few months, I avoided taking Stella out to our backyard.  I didn’t want her to see the slide she could climb the ladder to last year, and the playhouse she delighted in running in and out of, slamming the door behind her.  I was afraid she would ask me to do something that I knew she couldn’t do.  I wanted her to forget about the backyard and all the time we used to spend out there.  The bushes she picked raspberries from, the lawn she kicked her soccer ball across, the table she sat at when we had family BBQ’s.  But then I showed her the playhouse three weeks ago from her bedroom window, trying to distract her from something else.  She instantly smiled.  So I took a deep breath and carried her outside.  And she was happy.  With some work, she can still sit in her little Muskoka chair in the playhouse.  She still laughs each time you close the door and then open it and with great enthusiasm, say “boo!”.  She doesn’t need to climb the ladder up to the slide, she just needs you to put her on top and hold her up while you slide her down.  She thinks it’s hilarious to watch us throw other items down the slide so she can “catch” them.

 

The zoo, the farm, walks to Starbucks, visits to friends and family, Easter egg hunts.  Stella can do anything she wants.  My job right now is not to limit her, to protect her or to project my own fears onto her.  I think that I have spent the last 9 1/2 months trying to live each day as if it were Stella’s last, but inadvertently I’ve stifled her somewhat.  Because Stella isn’t living her life in the same way.  She doesn’t wake up each morning like I do and wonder if maybe today will be the day she dies.  She has no concept of this type of thinking.  Stella is living the way she always has— fearlessly, and with no thoughts of failure whatsoever.  She has probably never said to herself, “I can’t do that”.  Why would she?  Failure and fear are learned behaviours, and Stella never learnt them.  So she decides she wants to do something, and she does it.

 

I never knew growing pains could hurt so much, and literally stretch and expand all the parts of your mind, body and soul.  But to truly grow, you have to be willing to feel the pain, knowing that at the end you will be better for it.  I have to let Stella’s joy scream across my heart, and drown out the pain I feel for myself because she is making me a better person by showing me that “can’t” is not an option.

 

And so, even though it hurts, we both continue to grow.

 

And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom“- Anais Nin

Easter cuddles with Auntie Heather:

Stella can play ball:

Stella can play with her friends:

Stella can go down the slide: 

Stella can swim:

Stella can paint:


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277 Days

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277 Days

 

Back in July, my first post for this blog was called “25 days”.  I haven’t looked back on it–ever, until today.  I actually never go back and read posts, because once I have transferred my thoughts to paper that moment is finished for me.  But as Stella has reached the 9-month survival mark, I was thinking about how much Aimee, Stella, me and our families have been through since that first post.  How many ups and downs we’ve weathered, how we’ve matured in our grief, how we’ve learned a lifetime of lessons from Stella, our community and each other.  And I wanted to acknowledge our journey so far.  Acknowledge how we were supposed to have only until the Fall with Stella, and now it is Spring again, and she is still here making us laugh and cry every day.

 

This next part might be hard to read for some people, but one of the most important things I’ve taken from Stella’s cancer is to be honest. Honest even when what you’re saying makes people uncomfortable and even when some people don’t believe you because it doesn’t fit into what is most convenient for them to believe.  The complexity of feelings I’ve been through might be hard for some people to accept, but it’s an important part of understanding where I came from, and where I am now.

 

When Stella first got diagnosed, along with being overwhelmingly heartbroken, I was angry beyond belief.  I was obviously angry at all the things that my daughter was going to miss out on, angry that out of everyone we knew it was “us” who were going to lose our child, angry at the Doctors for not having a cure— but also angry because I had this idea that I hadn’t yet gotten back enough of my “investment” in Stella.  I remember talking to my friend An, and telling her that it wasn’t worth it.  I talked about the heartache of trying to conceive Stella, and the financial hardships.  I talked about the horror of my delivery with her (not one of my best memories, despite the ending of a healthy baby).  I remembered the loneliness and isolation that followed me in her first few weeks, the overwhelming despair that later I realized was postpartum depression.  I recollected how she challenged me every moment of her life.  She refused to play independently,  threw bowls full of baby food at the white walls, hit and bit the other kids, ran around constantly, tantrumed, laughed in my face when I tried to give her time outs, nearly bankrupted us with the ludicrous cost of childcare, and often left me in tears at the end of the day.  Her stubbornness and independence was legendary;  something others thought was a charming part of her personality, but as her parent, something that kept me up at night feeling like I was doing something so very, very wrong with her.

 

I loved my daughter because she was my daughter, but I never really “got” her.  Back then I felt so cheated that we were going to lose her right when I was finally getting the hang of Stella and looking forward to her getting older and being more fun to interact with— now was when the universe decided to take her away from me!!??  This was bullshit.  All that work, all that heartache, all those long and demanding days, all for nothing.  I told people if Stella was going to die anyway, I wanted her to die right away, so I didn’t have to watch her suffer and suffer along with her.  I remember telling my therapist (much to the shock of Aimee), that if I could go back, I wouldn’t choose to have Stella as my daughter.  I know this sounds completely awful now, but at the time I felt like the horror and pain I was experiencing at the thought of losing her in such a cruel way, coupled with our tumultuous 2 years together, wasn’t worth it.  A pain that brings you to your knees and makes you incapable of breathing and causes you to question whether or not you will be able to survive, was not worth two years of damn hard work raising her.  I didn’t feel like I had enough good memories, to compensate for the nightmare I was about to live.  I was totally lost in my grief.

 

Now, I marvel that I am the same woman who thought all those things so many months ago.  The person who was so caught up in her narrow vision of what love and parenting were about, that she came <<this close>> to missing out on some of the greatest experiences of her life.  Parenting Stella still isn’t easy– I doubt it ever will be, or would have been.  But when I think about the thousands of big and small gifts my little red-haired imp has given me over the past 9 months, I am in complete awe of what an incredible honour it is to be Stella’s Mama.  Stella just needed me to step back from my expectations of what being a parent was “supposed” to be, and learn to love her for exactly who she is.  Still stubborn and defiant, but also incredibly strong, and funny, and creative.  I love Stella more now than I ever have before, and I don’t feel like a parental failure around her anymore.  I feel like she knew she had to live this long because she knew I needed to spend more time learning about her, and myself.  Because she had so much to give me, but I had to be ready and willing to accept it.  Her spirit and adaptability continue to amaze me and I find myself slowly becoming someone I can be proud of.  It’s been a profound journey, incredibly painful but purposeful.

 

Most importantly, now I can look at anyone, including myself, and say wholeheartedly that given the choice— even knowing that we would lose her in such a tragic way— I would choose my Stella again, and again, and again.  She is the perfect child for me and I would live through 1000 years of pain to spend one day basking in the glow of her smile.

 

I ended my first post, “25 Days” by saying that despite everything, “25 days later Stella is still laughing and smiling”.  It’s nice to be able to say that 277 days after diagnosis, though much has been lost, Stella continues to laugh and smile.  And this time, I’m laughing and smiling with her.

Stella, in the hospital, smiling the day she was diagnosed with terminal brain cancer:


Stella, 9 months later, smiling yesterday at the zoo:

Stella and I– smiling together on our front porch today:


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Drive Towards The Sun (By: Aimee Bruner)

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Drive Towards the Sun By: Aimee Bruner

 

When I think back to June 24th (something I try to avoid at all costs) I remember the nauseating feeling of adrenaline coursing through my veins and the prickling feeling of light headedness accompanied by an extreme case of the shivers.  Shock – the physiological response to getting the most horrific news of your life over and over for five days.  Along with the incredible community of family members, friends and colleagues that stepped up and helped hold us up during that time, shock is the only other thing that made it possible for us to survive Stella’s diagnosis.  That numbing, relentless grip that wrapped our souls set in to preserve us – and it did.  Now that we’re 8 months into this journey that we never wanted to take in the first place, I’m finding myself missing that feeling of shock that rolls over your body like a tidal wave.  I miss it because after 32 weeks of holding my daughter and watching while the tiny tumour that’s killing her takes her faculties one by one, the feelings that are creeping in where I don’t want them, are hurting me more than I ever imagined I could hurt.  This new world of unpredictability that we now live in is vast, ever changing and just wide enough to hold the pain that has taken over our lives.  Two weeks ago, Mishi and I wept day in and day out as we braced ourselves for the bottom to fall out.  Stella seemed trapped in a state of sedation and we didn’t know whether it was cancer induced, drug induced or both.  I found myself waking up every hour in a panic because I was afraid of Stella leaving this world while we were asleep.  I know that there’s nothing we can do to change the outcome but as any mother would feel, I just want to be there to hold her and kiss her forehead when it happens.  Reality tells me that this may not be possible so each day, I remind myself that it will happen when Stella’s ready – not when I’m ready.

 

A week ago, Stella did what she’s done time and time again – BOUNCED BACK…..in full force.  We knew things were changing for the better (if only for a while) when she woke up at 5:30am, eyes still shut, muttering the word “cupcake”.  Since then, despite her deteriorating speech and diminishing ability to swallow, Stella’s days have been filled with long since forgotten trips to the park, drives to Tim Horton’s, singing, dancing and laughing……

 

….and we’re back.

 

On Saturday, I left my family on our cozy couch to take a drive to comfort a friend who needed a hug.  I spent much of the day sitting in her parents familiar living room, chatting, sipping tea and laughing.  Even though I was there to support my friend, I was the one that felt better and I left there feeling a little lighter than I had when I arrived.  When I pulled onto the 401 to make the hour long drive back to Toronto however, the feeling of heaviness pressed down on my chest like it usually does.  The sky was grey and thinking about getting dark but as I approached Port Hope my eyes caught sight of a ball of light pushing down through the clouds in the distance and my heart skipped a beat.  The darkness that hovered over top of the highway as far as the eye could see, was being blasted with sunshine.  Sunshine powerful enough to throw it’s rays through the atmosphere to touch down firmly on the ground.  As I continued driving West, the brighter it got until the butterflies in my stomach turned into a warmth that filled my soul as my eyes filled with tears.  There it was, the beautiful reminder of what I was going home to.  It turns out that that sunset was sitting right over Toronto (don’t tell the rest of the world) and I could feel my foot push just a little bit harder on the peddle as I continued driving towards that orange sun set waiting for me in the corner seat on the couch.

 

When I arrived home, my house was hopping with a new found energy as we settled into our weekly sleepover with Stella’s cousin Gracie, and her moms.  For the first time in five months, Stella wanted to go downstairs and play in the basement.  HER basement.  The basement we built for her.  We rounded the troops, grabbed the camera and watched as Stella and her cousin sat at the little yellow table that my sister and I sat at 30 years ago and painted.  At first, Stella was sitting in Mishi’s arms, donning a little red smock, slumped over in a heap with her head tilted to the side (I hate seeing her like this).  As she was starting to bite the paint brush with a smirk on her face, Mishi reminded her that “we don’t eat the paint or the brushes.”  She no sooner uttered these words, when she realized that Stella wasn’t trying to eat anything.  She was trying to put the paint brush in her mouth so that she could paint.  That’s right, at the age of almost three, Stella’s drive, determination and her incredible ability to adapt to everything DIPG has thrown her way, has allowed her to sit and do exactly what her cousin was doing.  Paint.

 

Let that be a lesson to us all……..

 

 

…..and THANK YOU STELLA.

 

Driving Into The Sun:




The Sun…


 

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Strong Enough To Scream

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Strong Enough To Scream

 

A new friend, Kristine Y., sent me an email with the following in it:

 

“Why do people tell us to be strong?  Maybe because they hear it in the movies in such a motivational way, it seems that it does no harm or causes no interference in the grieving process.  And then, people are always more comfortable when the grieving person does not give off the sense that he or she is falling apart.  If the grieving person doesn’t cry and express too many emotions, we wont feel too much either.  The truth is that pain can be contagious.  You cant be around someone in deep sadness, and not feel it, so if we put a lid on the grieving persons emotions, we wont have to deal with them ourselves. 

But at what cost do we camouflage our grief?  When we shelve our pain, it doesn’t go away.  Rather, it festers in a myriad of ways.  We need to understand that strength and grief it together.  We must be strong to handle grief, and in the end, grief brings out the strengths we never knew we had.”

 

This could not have come at a better time, because for the past few days I’ve felt like the carefully constructed facade of “being ok” I’ve worked on for the last several months, is crumbling rapidly and I feel guilty about it.  I keep avoiding making social dates because I don’t feel like people want to sit down and just listen (again) to how broken I feel right now.  I have a much easier time communicating my despair in blogs or emails than I do in person or on the phone.  There are certain people that I can open up to, but most of the time I resort to crying only in therapy…or with Aimee late at night…or in the shower…or on walks.  Even with people that I feel most comfortable with in the whole world, I don’t like to fall apart.  It’s that silly word “strength”, isn’t it?  That word that makes us feel as though to fall to your knees and sob will make others uncomfortable, will show your weakness, will create a scene.  How we’re taught when something horrific happens, to never talk about it lest we make others uncomfortable.  Leave it in the past.  The way that if you see someone out in public, a stranger crying, you just walk by, averting your eyes.  How you say simply to someone who has returned to work after their husband died, “I’m sorry to hear about your husband”.  They respond with, “thank-you” and you follow-up with, “So, the meeting on Thursday will deal with the reconciliation of the 2010-2011 fiscal budget and…”  Essentially brushing off this great tragedy.  But it’s okay, because they don’t want to talk about it either.  How sad that we’ve created this fear of showing emotion to one another.  So many times on my walks I’ve wanted to show up on a friend or family members stoop, and just collapse in a puddle of tears. But I always stop myself.  I feel like they wouldn’t want me to “ruin” their day by doing that.  That they wouldn’t know what to do or say.  That I would make them uncomfortable.  That once I started I wouldn’t be able to stop.

 

I’ve always thought the Christian way of grieving for people after they die in North America is fairly inhumane.  You’re supposed to go an sit through an emotional funeral service, say goodbye to your loved ones in 40 minutes or less, and then turn around and host a bunch of people at your home with food and chit chat.  I can’t tell you how many times I’ve stood at one of these “receptions”, watching people greet one another with hugs and say over and over, “I haven’t seen you in ages!  How are you, what’s new?”.  There is little talk or thought of the person who died, no space is created for tears once you step outside the designated “funeral” space.  And once the funeral is done, your public show of grief is supposed to be over.  You get three days of bereavement for the death of a child or spouse, and you’re expected to go back to work, school, life, as though you’re completely healed.  In reality, you are never healed.  You are never the same, you just learn to walk around with a huge hole in your heart and a mask over your face.

 

All these thoughts are starting to flood me because Stella has had a very slow week.  We’ve had several times during these last 8 months when we’ve wondered, “is this it?”, but that’s not what I’m feeling right now.  What I’m feeling is just profound sadness for what little my daughter has left.  What little of herself, and what little time.  Her speech has all but disappeared over the last 9 or so days.  It’s been the hardest part of her cancer so far.  Without the ability to communicate verbally to us, we are, for the most part, stuck in this unbelievably sad and maddening vacuum of frustration. We keep trying to guess what she wants, but she just stares at us with her big blue eyes, unable to even tell us if we’re right or wrong.  I keep asking myself if I’m going to be strong enough to get through this next part— the part where it’s going to get very, very, bad and then Stella is going to slip through our fingers.

 

I had a nightmare last week that shook me to the core.  In the dream, Aimee and I were at the zoo having a beautiful day with Stella— just like we always used to.  We got to a small hut-like area and a gentleman there held his arms out to our Stella.  He took her and told us to come back for her in 45 minutes.  We waved good-bye and Stella smiled and happily followed the man inside his hut.  Aimee and I grabbed a drink and then returned to the hut.  The man met us at the back door and handed us an urn full of ashes.  “Here she is”, he said to us.  I woke up in a full anxiety attack, and it was hard to control and compose myself because the dream is truer than I often let myself think.  One day soon—maybe in the next 8 weeks— all we will have left of our Stella is ashes.  How can I ever reconcile the thought of not holding my daughter ever again?  For the rest of my life never feeling her warmth, smelling her head, letting her smile fill my heart.  It’s too much to bear.

 

I decided today that I am not going to be able to get through the foreseeable future without being able to grieve publicly, openly and loudly.  I am not going to be healed three days after Stella dies.  I am never going to be healed.  I am not going to be able to control the flow of tears, the screams, the despair.  I am not going to want to be hugged and coddled and pitied.  I just want to be seen and heard as I lose the person I love most in the world.

 

And it is not because I’m not strong enough to stay silent and stoic.  It’s because I am strong enough to know what I need…and what I need is time, tears and truth.

Eating sprinkles!

Naptime for Sam & Poppa


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