A Letter to Those Families Newly Diagnosed with DIPG

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Through this blog, I have had the unique opportunity to be connected to many, many families who have lost a child.  Some to DIPG, others to different diseases or circumstances.  I have benefitted greatly from the advice and wisdom of those who have walked this sometimes lonely, scary path before me.  Recently, I have received several emails from people who have loved ones newly diagnosed with DIPG asking for my opinions on dealing with its harsh realities.  I actually feel woefully unqualified to answer these queries.  Though we have journeyed the DIPG road, I can’t say that what we did or didn’t do was right.  I know that sometimes when we talk about not treating Stella, it can sound like a judgment against the families who did decide to treat, but far from it.  The only true advice I have is to just keep going.  But I thought that, in case it’s helpful to anyone who comes after, I would write a general letter to DIPG families telling them some of the things that I’ve learned so far.  So…here goes:

 

 

July 27, 2013

 

 

Dear Friend,

 

 

I’m so sorry to have to write this letter to you.  I’m sorry because I know that your heart is broken, smashed into a million pieces that cut your soul and that it hurts even to breathe.  I’m sorry that your child got this dreaded disease.  They say it’s “rare”, but that word means nothing when you are one of the ones touched by it.  DIPG stands for “Diffuse Intrinsic Pontine Glioma”, but to us it just means your child is going to die. I’m just so sorry.  The pain is unbearable, isn’t it?  And I know that you may be clinging to hope that maybe your child will make it, and I don’t think that’s a bad thing at all.  I know you are probably scouring the Internet late into the night, googling things like “DIPG survivors” and trolling message boards looking for some story with a happy ending.  That’s okay.  But the truth is, I don’t think you’re going to find what you’re looking for because what you really want is for someone to tell you that there’s been a horrible mistake.  That it was someone else’s MRI that got mixed up with your child’s.  You want to believe there was a misdiagnosis, and it really just is something minor that will pass.  DIPG sounds too horrible to be true.  “Why us?  Why my child?” is chorusing through your brain.  There is no answer to this.  There is no reason.

 

I think that the most important thing to remember is that every parent’s journey is different, and every child’s needs are individual.  Do not be afraid to do what you feel is best.  When your child is first born and you have parenting needs or questions, we are encouraged to look up to the experts.  There are countless books, articles, websites, friends and family members who are happy to give their advice on feeding, potty training, conflict resolution, discipline, etc.   However, when you find out that your child is going to die there is a marked lack of “how to” instructions provided.  All you are met with is deafening silence. That is because there is no how to.  It is too horrific a reality to contemplate for most people.  But this is your reality, and it was my reality.  And there’s no use mincing words.  It’s awful.

 

I find it difficult to give advice because everyone’s journey is so different.  But I am happy to share some of the things I learned, and hope that maybe there is something here that can be of a little help, or the tiniest bit of comfort as you navigate this journey.

 

Take care of yourself.  Some people call this the “airplane rule”.  You know how when you’re flying, before securing an oxygen mask on someone younger or frailer than you, you need to put yours on first because you’re no good to anyone if you faint.  It’s the same in this case.  You need to eat and sleep and take care of yourself as much as possible.  It’s hard to do.  Part of you might want to suffer because you know your child is suffering and it doesn’t seem fair.  Part of you might just forget or be distracted because you’re too busy trying to just get through the day.  Part of you might want to die along with your child.  It’s unrealistic to expect to feel “well” all of the time, but you also need to keep up your strength as much as possible.  This is a marathon of physical, mental and emotional pain.  Pace yourself.  Look after yourself.  It’s basic but of the utmost importance.  Sleep, eat, breathe.

 

Prioritize. The next advice I would give is to not let the small things in life distract you.  As horrific as the impending death of your child is, you have notice of it.  You can cut out anything that is not completely necessary and should be free of guilt about it.  Anyone who doesn’t understand cannot be part of your world right now.  This means if going to your sister’s wedding means being away from your child for a night and you don’t want to, or can’t bear to do it, don’t go.  If the annual camp reunion is coming up and you think people will be mad at you if you don’t go, they’ll get over it.  Don’t get me wrong, it also means that if you feel up to it and want a break, you should be able to do what you want and need.  But never feel as though you’re being forced into anything against your will.  Go and do only the things you really and truly want to.

 

Take as many photos and videos as possible.  This is a bit tricky for a few reasons.  First of all, if your child is getting sicker and sicker, you may not want visual reminders of this time in your life later on.  But then again, you might.  Secondly, I find that sometimes when we are so busy trying to focus on capturing moments and memories on film, we forget to stay present to the moment and miss the enjoyment because we are seeing it through a lens, away from the actual events.  That said; remember that unlike most other parents, you are going to have only a finite amount of videos and photos to sift through of your child for the rest of your life.  Whatever you have once they die is all you’re going to get and on those days when you want to remember the exact curve of the curl on your daughter’s forehead, it’s nice to have a photo of it.  I took pictures of my daughter’s toes, chipped nail polish and all.  Of her face from every single angle, close enough that I could see the pores on her skin.  We took as many videos as we could of her speaking so that later, when our memories start to fade as they are sure to do, we can remember the sound of her laughter bouncing off the walls, and the way she said “Ma-ama” to me, as though there was an extra syllable in it.  Take videos of yourself reading a book to your child, of you eating breakfast as a family.  Of the normal, regular times because they are what you will miss the most.

Accept help.  As human beings, we are programmed to say, “No, I’m fine, we’re okay, really”.  You are not okay.  You are not fine.  People don’t know what to do to make you feel better.  They want to help, let them.  If they want to cook you enough lasagna to feed your family for a month, break out the Tupperware and freeze it for later.  If they want to donate $500 so you can buy a new bike for your child, give your kid the Canadian Tire flyer.  If they offer to take your dog for a month so you can focus on your family, pack Fido’s bag, and send him off.  If a stranger offers you their cottage free of charge for a week so you can make some family memories, buy a lifejacket and drive north.  Never feel obligated to do anything or accept anything, but don’t close your mind off to it either.  You are in a horrific situation.  If it helps you and makes someone feel helpful in the process, it’s a win-win.  You need help.  You should not have to worry about doing the laundry, filling the car with gas, sending out birthday cards on time or organizing the local rummage sale.  This is an extreme situation, give yourself permission to do what you need to do when you need to do it and eliminate the guilt.

 

Stay true to yourself, your child and your own family’s convictions and priorities.  You will be getting lots of advice and suggestions from well meaning people.  Religious sentiments, medical suggestions such as homeopathic alternatives, conflicting research reports and too much information to wade through.  It is easy to become overwhelmed.  My suggestion would be to go with your gut.  There is no right or wrong when it comes to the death of your child.  As long as you are secure that you are doing what feels right, and what is giving you and your family the best chance at a high quality of life for as long as possible, you are doing what you need to do.

 

Don’t be afraid to enjoy this time.  Your child is going to die.  It’s a horrific reality.  And I’m sure there will be days when you don’t want the time with your child to end, and other times when it’s so hard you just wish it were all over.  As crazy and counter-intuitive as it may sound, try to find the joyous moments that come between all the tears and heartache.  Remember, your child is dying, but they are not dead.  They are alive, LIVING.  Depending on how progression goes, there are still so many things that can be enjoyed.  My daughter loved nothing more than to dance.  When she lost her ability to walk, she danced with her head and torso.  When she could no longer sit up, she danced with her one good arm.  When she couldn’t move anything anymore, she danced with her eyes and her smile.  These are some of the best days in your life, because your child is still here.  Still able to be held, to be loved, to stand up and be counted.  Many of the best moments in life— in everyone’s life— are sometimes the ones we might not notice otherwise.  The laughter that occurs as we tickle our child just before bed.  The off-key rendition of “itsy bitsy spider” as we get ready for a bath.  The softness of a flower against your skin.  These moments are almost never celebrated, there are rarely photos of them, but they are among the most precious and important in your life and I encourage you to look for them actively, and enjoy them.

 

Love openly.  The world has betrayed you in the worst possible way.  But don’t close your mind and your heart to the possibilities and life around you.  Don’t be afraid to love, I think it’s what our children would want, and one of the greatest lessons they can teach us.  Love without borders, without reservations, without anger or bitterness.  Love because on the worst days of this journey, it is the only thing that will keep you from giving up.  Love is your oxygen, breathe it in.

 

I’m sorry to have to write this letter to you.  I’m sorry I know bits and pieces of how you feel.  I’m sorry that you will have to learn some very hard lessons on your own.  But I hope that you know that a bond neither one of us wanted, but that may just help in the darkest of days, connects us forever.

 

With tears and understanding,

Mishi

DIPG Mom

 

“The light of a distant star continues to reach the Earth, long after the star itself is gone”

Stella Joy Bruner-Methven

April 18, 2009-October 22, 2012

 

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Auntie Heather does some sing-song time with Xavier, Hugo and Sam

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Hugo learning to walk (Kincardine, ON)

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Poppa shows Xavier how the playground works (Kincardine, ON)

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Uncle Tristan and Hugo get matching haircuts

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Stella and GrandPa, August 2012

 

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Tiaras and Tears

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Tiaras and Tears

 

It may not be politically correct, or feminist of me, but I like many of the socially constructed “girly” things that most of my contemporaries fight against and feverently hope their daughters will never buy into.

 

But as unpopular as my opinion might be in our social group, I like Disney movies, especially the “Princess” ones.  I know all of them by name and can sing all the songs and describe all the dresses in detail. I like sparkly nail polish, big dresses with crinoline under them and makeovers.  The colour pink does not offend me, and I don’t care if little girls want to play wedding, princess or popstar.  I will happily play Barbie dress-up or My Little Pony with anyone, and in my spare time willingly watch copious amounts of Say Yes to The Dress  and Four Weddings on TLC because I like weddings.  Big, fluffy, white weddings with a cutting the cake, corny DJ music and bridesmaids. Oh yeah, and sorry feminist friends, I love you dearly, but I gotta shave.

 

I used to actively search out activities that I could take Stella to when she was older.  I would look at an ad in the paper for the musical Pink-A-Licious and think, “Oooo, maybe when she’s 4 we can go to that”, and I had done research on kids spas in Toronto where you can have mother/daughter days.  When Stella was sick last summer, I took Gracie to an event called “The Princess Party” at StageWest Hotel and Theatre in Mississauga.  The event list would have sent chills of horror through most of my mommy-friends bodies.  There was a Princess movie, princess dress-up, Princess live show, dancing (which included learning how to dance with a broom like Cinderella), a meet-and-greet with the princesses, and a chance for makeup and nail polish application.  There were about 80 little girls all dressed in pink and purple dresses, wearing hotel-supplied tiaras just eating it up.  And I loved it.  I happily engaged in a serious conversation with Gracie regarding whether Sleeping Beauty’s ball gown looked better in blue or pink, and gamely referred to all the little girls by their “Princess” names (i.e. if they were dressed like Snow White, that’s what I called them).

 

This year, I begged Gracie’s politically-correct and socially-conscious parents to let me take her again, and even asked Stella’s friend Flora’s parents (who are equally politically and socially correct…even to the extent they are (gasp!) vegetarians!), for permission to take the girls to the Princess weekend.  After setting aside their personal views in the name of their little girls happiness, both sets of parents agreed, and the planning commenced.  I was so excited.

 

Then, due to some scheduling conflicts, suddenly it seemed that the girls weren’t able to do the weekend with me anymore.  I was disappointed and sad, but it was more than that.  I was absolutely devastated.  Like, curl up in a ball and sob as though you were just told Santa doesn’t exist kind of sad.  Now, after two years of really, really good therapy, I know enough that when I get an over-the-top reaction to something so small, it means something more.  So I had to think about what it might be, and with Aimee’s help I realized something.  Not only am I mourning Stella as my child, I am mourning Stella specifically as my daughter, as a girl that I no longer have.

 

From the moment that she was placed on my chest in the delivery room and I heard Aimee cry out, “It’s a girl!” I created fantasies about having a daughter.  They weren’t necessarily around ballet recitals or anything, but I more dreamed about sharing my interests with my daughter.  Who knows if Stella ever would have given me the time of day, but that’s not the point.  The point is in my mind and imagination; I was going to have a daughter.  This meant that we could have a Cinderella-themed birthday party, when she was older we would get dressed up and go to High Tea, we would spend hours with DeeDee at the American Doll Company in New York City looking at dolls and clothes, we would go prom dress shopping and Tutu would take her to Paris for her 16th birthday for the fashion shows.  I would pass along my (mild) obsession with all things pioneer, and introduce her to the Little House on the Prairie book collection.  We would play paper dolls and she would giggle and paint my toenails with glow in the dark nailpolish.  Maybe she would follow in my footsteps and be a Girl Guide, or take tap dancing lessons and baton.

 

But now, along with my daughter being gone, so are all those fantasies.  And for anyone out there who’s thinking it, I KNOW that boys can be into that kind of thing to, and I know that there is no logical reason I can’t take Sam and Hugo to High Tea or Pioneer Village, and they might be excellent baton throwers, except that due to social and genetic reasons beyond my control, chances are…they aren’t going to give a shit about Cinderella or My Little Pony.  Already Sam is completely obsessed with trucks and planes and cars.  If we’re walking along in the stroller and he sees something, he will wave at me excitedly, his jaw open and say, “Mama, Digger!”…”Mama, truck!”…”Mama, plane!”…”Mama, excavator!”.  I have an entire children’s book at home that Sam likes me to read on a daily basis simply called “trucks” that goes into great (and boring, in my opinion) detail about the difference between an excavator, digger and bulldozer.  My eyes glaze over around the part that says, “An excavator is a construction vehicle used to dig or move large objects. It is made up of two parts: a driving base and a powerful boom arm with an attachment designed for digging…”, while Sam leans forward, his eyes gleaming with excitement at the big yellow machine.

 

The reason I was so devastated at the thought of losing my Princess Weekend was because it is a stark, and very sad, reminder that I don’t have my own daughter to bring to things like this anymore.  I’m pretty confident Stella would NOT have been into a Princess Weekend, so it’s likely I would have been bringing Flora and Gracie regardless, but it just stresses that it’s not really even an option for me because I don’t have my own little girl anymore.

 

I love my boys, and after losing a child, I don’t need to explain to anyone how much they mean to me.  But I don’t know if I have as much to offer as a parent to boys as I would have to a girl.  I don’t know anything about sports (the only team I was ever on in High School was archery), I don’t care about cars or buses or construction vehicles.  I hate bugs, rodents and action hero movies.  I don’t know the difference between Batman, Spiderman and Captain America.  I can’t tell the difference between Yu-Gi-Oh and BeyBlades.  Which of my passions will I be able to share with my sons and pass along to them?  What will we have in common?  And who will I share my love of Princesses with?  I know I have a lifetime to grow and fall in love with my boys, and I know that more than likely we will surprise each other with just how much we have in common, but I also think I will always yearn for the little girl that might have put on her pioneer bonnet and run through a field of wheat with me while we pretended to scrub our clothes in the creek and learn counting on our slates.

 

Luckily, I will still get to attend the Princess weekend this year as one of the girls who was still able to make it, so I’ll get my fill for now.  But what about next year and the year after?  It makes me sad to contemplate.  What if I’m no good at raising boys?  What if they get mad at me because I don’t know the difference between hockey and ringette, and worse, I don’t care? Right now they are still little, but already I see the “boy” in them coming through.  But, one of the promises I made to myself after Stella died was to try not to worry too much about the future and live one day at a time, so I’m trying not to picture too much at once.  I know that no matter what though, when I don my tiara at the Princess Party in a few weeks, I will  be thinking of Stella and wondering which of the cute little Princesses she would have smacked in the face first.  My guess is Snow White, she’s a bit weird.

Boys on the Beach:

Roasting Hot Dogs with our friends the HayDraude’s:

Digging in the Dirt:


Ice Cream Break!


Sam eats ice cream in Picton with Tasha:


In July 2011, Stella ate ice cream with Tasha on the same bench:


 

 

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Those People in the Photographs

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One of the things that Aimee and I have from the 16 months that Stella lived with DIPG, is literally thousands of photographs.  When you find out you have a finite amount of time with your child, every single day becomes an opportunity to take a photo, to remember even the mundane moments of nap times and bedtime storybooks.  I don’t often spend too much time looking at the photographs.  My grief is still too fresh and raw.  Looking at pictures of my beautiful smiling daughter only reminds me anew of everything that is gone from us forever, and it hurts too much.  I know there will be a time when I will want to go through every single one in great detail, but for now I am content looking at the ones sprinkled around my house and digging into the recesses of my mind where Stella’s giggles and smiles come readily to me.

 

But recently I needed to go through some photos to help Aimee with something.  As I scanned through hundreds- thousands- of pcitures, something struck me.  There we are, doing so many different activities as our daughter is visibly losing her faculties with each passing month, and yet…we are smiling in almost every single picture.  There we are sitting on a dock while Stella innocently plays in the motor boat, just weeks after we got the news that she had only months to live and Aimee and I are practically beaming.  There we are a few weeks later, when she could no longer walk, celebrating Fall at Riverdale Farm with all of our friends and her toddler peers are all participating in a spoon/egg race.  I have her in the carrier, participating right along with them.  My daughter could no longer walk, and there she and I are laughing and running with her friends.  A few weeks later and Sam is born.  Pictures of me holding new life in one arm, and fading life in the other arm, smiling widely at the camera.  As weeks and months pass by, there is Stella at Great Wolf Lodge.  We carry her to the arcade and help her roll balls as we laugh hysterically when she gets big points.  Christmas time- her last Christmas ever- and we hold her in our laps, opening presents with joy obvious on our faces.  Spring comes and with it, more frequent trips to Riverdale Farm where it took both of us to support her failing body.  One of us holding her up, the other supporting her head and moving it so she could see the animals.  Still, we smile.  Summer time again and trips to the ice cream store where she could barely open her mouth enough to keep the ice cream from all dribbling out.  Grin.  Holding her in our arms and dancing to a guitar player in the park as her head flops backwards like a rag doll.  “Cheese!”.  Click-Flash-Smile.  Over and over and over again.  I began to wonder, “Who are these people in the photographs?.  Were we really that happy for the 16 months we lived with Stella dying?  Did we really have that much fun?”.

 

I feel as though if I were to speak with someone whose child is newly diagnosed I would be lying if I said to them, “Don’t’ worry.  It’s sad and hard and heartbreaking, but you’ll still have fun”.  But we did, didn’t we?  The photos certainly tell the story of us enjoying our time together.  I find the mind does crazy things.  I try to remember and it’s all blurry.  But I know that there were some days- many days- that we faked it.  That we all ran in circles to make Stella smile.  We had a neighbor who came over to juggle, one who made pink applesauce, friends who got an ice cream maker to do a special batch of avocado ice cream.  We had tea parties, painted toe nails, did puppet shows, baked cupcakes and went swimming.  We read books under the tree, visited cottages, went for walks for ice cream, painted and visited  the park.  But at night, under the cover of darkness, Aimee and I would collapse into bed and cry our eyes out for the little girl we loved who was slowly being taken away from us.  We smiled and laughed though our hearts were breaking.  We attended social events that were excruciating as we watched the other children run around laughing and talking, while our child sat immobile on our laps.  But we did it because it made her happy.  We smiled through all those moments, pushing aside the tears and replacing them with laughter.  I know we did feel genuine joy a lot of the time.  We had a lot of fun, especially spending each and every day with family and friends.  But when I look at the photographs, I marvel at those people I see smiling back at me.  “What was I really thinking” I wonder as I watch a video of me trying desperately to coax a smile from a very tired Stella.  I am laughing and blowing into her face, singing “Row Row Row Your Boat”, very enthusiastically.  In the video, she struggles to move her eyes up to where my face is, then flops them back down in sheer exhaustion.  Still, I persist.  “Did I steal you wind, Stella!?” I ask, blowing harder in her face.  The eyelashes flicker up for a moment and I think I might see a flash of humour in her blue eyes.  Then they close again and the video shuts off as I laugh hollowly in triumph.

 

Was I happy then?  Am I happy now?  The crazy thing is, I no longer know.  Emotions feel foreign to me, like a dress that doesn’t quite fit right.  I have trouble knowing how I’m supposed to be feeling.  The Doctor says part of it is my medications, which dull emotions, but sometimes I do catch myself doing an inner monologue where I think, “Oh.  She just made a joke. I’m supposed to laugh now”.  Learning social cues again is a challenge.

 

I flipped through these photos and kept wondering, “What was I feeling here?  What was I thinking?  Was I happy?”.  Then, suddenly, I did remember.  I was happy when I knew Stella was happy.  I was happy when I was doing something that she liked.  When I was able to give her comfort and keep her safe.  When she experienced something new and fun.  I was sad when I couldn’t rouse her from a mood, or when she slipped into a “new normal” as we learned to call it, and it took her a few days or weeks to adjust.  Times in which she would sit and stare at the wall for hours on end, as we struggled to learn to interact with her despite her new physical limitations.

 

But regardless of the horrors that DIPG brought to our family,  I was happy because Stella was loved.  Lord, that girl was loved by so many people in so many ways.  “you are loved, you are loved, you are loved” I kept whispering to her in late October as she lay dying in our bed.  She knew she was loved, and I guess that’s what all those photographs ultimately show.  No matter what was going on, we smiled because we knew Stella would have smiled if she could.

 

Even in death, sweet Stella, you are loved, you are loved, you are loved.

 

Click-Flash-Smile.

Picton, July 2013

Picton, July 2013

 

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Stella, March 2012

Nanny and Hugp

Nanny and Hugo

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Xavier, Hugo and Sam watch the boats at Lock 23 in Fenelon Falls

Break Time IMG_3240 IMG_3238

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Today Sam was making Hugo laugh like crazy

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Grief is sometimes like a sliver.  It hovers, just beneath the surface of your skin and though you may forget about it momentarily, when you least expect it something will touch it and the pain comes back full force.  If you dig at it, the sliver sometimes moves deeper inside you, but it’s still there.  It takes time and patience to work it out, and even when the sliver itself is gone, the reminder is there for quite a while—a puckered piece of red and raw skin.

 

Stella’s death shattered my soul, leaving hundreds of slivers all throughout my body.

 

Today Sam was making Hugo laugh like crazy.  They were sitting in the back, each in their own car seat, and it took Aimee and I a few minutes to notice what they were doing as we were wrapped up in our own conversation.  But eventually, Hugo’s bubbling laughter and Sam’s shrieks of delight hit our ears and I turned around to see what was happening.  Sam, was saying “Zee…” and then throwing his arms up in the air and saying, “Rawr!”.  Hugo (aka “Zee”), would then burst out laughing at Sam.  Over and over again the boys repeated this game, both guffawing, their faces red from lack of oxygen because they were laughing so hard.  It was funny and gave Aimee and I a good, genuine chuckle as well.  But it was more than a cute little thing our boys were doing, it was a moment where I believed that maybe this was how it was supposed to be, maybe this moment of joy was meant to be and all the other days of my life to follow are meant to be as well.

 

We are at Thunder Beach on vacation this week.  A place Aimee and her family have been coming for decades.  A place Stella spent time in every year of her life.  The Thunder Beach community rallied around us when Stella got sick, offering support and caring and raising money to make a little playhouse in the Thunder Beach playground that is called “Stella’s Place”.  It’s hard to be here this year.  Hard because every place we go there is a memory of Stella.  Memories of all the times we were here, both before and after we knew the horrible acronym DIPG.  I remember her and Gracie sitting on the deck in their matching camping chairs and floppy hats, coloring.  I remember eating ice cream at the store, always vanilla for Stella and Moose Tracks for me.  I remember bringing Stella here when she could no longer speak or sit up or hold her head up, yet she laughed and smiled as we piled blankets in the kayak and floated her out in the water.  I remember her playing Tim Horton’s in the playhouse, charging “300 monies” for a double-double coffee.  I remember her and Gracie fighting on the couch as they tried to watch a movie because Stella’s feet kept touching Gracie’s, annoying her greatly.  Then last year, we put Stella in our little red wagon and Gracie made her laugh by pulling her as fast as she could, running down the cottage roadway with dust and debris swirling behind them as we ran to catch up, amazed that even with so much lost, Gracie and Stella could find a way to play.  I remember coming to Thunder Beach when I was just 6 weeks pregnant with Stella, swimming in the cool water and marveling at the life growing inside me, wondering what this little boy or girl would look like, and trying to picture him or her at the beach.  I remember the heat, the mosquitos, the smell of campfires.  Everything here reeks of Stella.

 

But what is most striking is seeing all of the young families we have known coming up to greet us at the beach. People who a few years ago were partying at bars until 2a.m. are getting married and living in Leslieville, working 9-5 and starting an organic gardening club.  Children who we remember being born 5 years ago, are now in school.  Babies who last year were being toted around in baby carriers are galloping across the sand.  It struck me anew as I stood on the beach, sun beaming down on a perfect cloudless day, how utterly unfair it is that Stella will never return to this beach a year older, to run through the waves once again or dig in the sand.  I thought about how her smile will never again flash as she feels the water lapping at her toes, or how her laughter will never again pierce my heart with its pureness, and I wanted to curl into a ball and cry.  But Thunder Beach is a very public place, so instead I just stood there at the lake, watching all the action.  Sea-Doos zipping across the lake, motorboats pulling screaming tweenagers on tubes as they bounced up and down in the waves, younger children splashing and riding inflatable killer whales through the shallow waters.  I noticed Gracie, off a little bit to the side, twirling in the water and talking to herself.  I think she was playing Mermaid as she had decorated her head and wrists with seaweed “jewellery”.  I ached as I thought about how instead of playing by herself out in the water, she and Stella should be playing together.  Making up games in their head, making up the rules as they go along.  Making memories. Together.

 

Of course my boys were there, being looked after by an army of family members, just like always.  Auntie Angie and Juju and Tutu and Aimee and I all took turns walking Hugo around, bringing buckets of water to the sand, wading in and digging small holes for the boys to sit in to be filled by the lapping waves.  Sam, brows furrowed, was busily taking a tiny plastic ice cream cone and filling up a bucket, one teeny tiny “scoop” of water from the lake at a time.  Hugo sat on the hot beach, shoving sand-covered potato chips into his chubby cheeks.  I watched all the children and wondered how different life would be if things had been…well, different.  Would I be as tired as I feel today?  Would I be as lackadaisical when it comes to things like diet and rules?  Would I be as appreciative of the tiny moments?  Would I crave solitude as much as I have lately?  Would I think something was missing in my life?  What would I look like?  How would I feel?  What would I be doing?  The questions, when they come, are too great to even contemplate, so I let them just roll around in my brain, just like the water rolling around in the lake I am staring at, uniform looking on the surface but stirring up all kinds of things just beneath.  Regret, longing, pain, hope, love, gratitude, sadness.  All the emotions slammed into me, keeping pace with the furiously lapping waves slapping onto the sand.  By the end, I was exhausted and just sat on a hard plastic beach chair, feeling detached and dejected.

 

So a few hours later, when I turned around in my seat and saw my boys playing together, completely happy and carefree and content, it was more than just an innocent little moment.  It was a reminder that whatever could have been is not what my focus needs to be.  Instead, it should be on what IS.  And today, that was a gorgeous day where the clouds and water went on forever, where Gracie and Sam and Hugo got covered in sand and water, where they chased a huge yellow butterfly with the exuberance only children can have, where Aimee and I sat on the porch as the sun went down and read quietly next to each other, not needing words to express that we were both thinking of Stella and missing her deeply.

 

It’s not the today’s and the yesterday’s that hurt so much, it’s the doubts and thoughts of the maybe’s and what if’s.  But watching Hugo and Sam laugh this afternoon, seeing them interact with no adult prompting, observing how they created this little game for themselves reminded me that even though I miss Stella terribly, all the day’s in the world are still to come, and I need to continue doing as she did, living only in the “now”.    Finding laughter in the backseat as Aimee I head down the road we’re supposed to be on.

 

 

“All lives intersect.  That death doesn’t just take someone, it misses someone else, and in the small distance between being taken and being missed, lives are changed”.

– Mitch Albom

Hugo Gracie and Sam at the beach

Hugo Gracie and Sam at the beach

Sam at Stella's Playhouse

Sam at Stella’s Playhouse

Hugo and Sam Laughing

Hugo and Sam Laughing

 

Stella at Thunder Beach

Stella at Thunder Beach

 

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