Monday Monday- Can’t Trust That Day

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“Monday, Monday. Can’t Trust That Day”

– Mamas and Papas

 

It’s not that, five months after Stella’s death, I think that I’m “fine”.  Far from it.  But I do believe that I’ve been lulled into a sense of existing recently.  I miss Stella everyday, but Aimee and I are busy and so we continue to live full lives.  She is working, I look after Hugo and get Sam off to daycare, go to school, deal with the laundry and dishes and shopping, etc.  We have dinners with friends, playdates, trips to the library and farm.  Living without Stella hurts, but it’s often a numb type of hurt.  A heartache that just won’t go away, so you learn to live with it.  You learn to not shed your tears around people because it makes them uncomfortable, learn to laugh even though it feels hollow to your ears and learn to look forwards instead of backwards because life is pushing you that way no matter how much you fight it.

 

So we are doing it.  Picking up and moving forward with our lives and our dreams and hopes for the future.  Sometimes I am caught in a moment where my brain begins its repetitive song, “My daughter died.  My beautiful, lively, curly-haired, funny daughter is gone from me forever.   How did this happen?  Where is my Stella?  Whose life am I living?”

 

It’s only been 5 months, but so many weeks and holidays and moments have passed without her already that the sadness just feels normal.  So, last week, when Sam threw up on the weekend and so did Hugo, it didn’t really register as too big of a deal.  Chalking it up to a stomach virus, and waiting with baited breath to see when Aimee and I would be struck down with it, we shrugged it off.

 

Sam recovered quickly, but days later Hugo continued to vomit off and on and then spiked a fever.  After a couple of days of waiting for it to go away on its own, we began talking about if we should take him into the Doctor.  I’m always a lot more reluctant to take kids into the Doctor’s office than Aimee is.  All I can think about is how kids get small and minor ailments all the time that generally go away on their own with a bit of Tylenol, how difficult it is to keep them occupied as you wait for the Doctor, how miserable they and you become as they are poked and prodded.  It’s such a chore.  But Monday night, “Monday, Monday” after several days of Hugo showing no improvement and his chubby cheeks starting to hollow out a bit, I relented and with a huge sigh Aimee and I packed him into the minivan and drove him to a local walk-in clinic.

 

The Doctor who finally saw us had very broken English; so many of the words that he spoke were completely lost on Aimee and I.  But a few of them registered.  My brain heard, “fever”-“too high”-“emergency room”-“if meningitis not a second to lose”-“too high now”-“very sick”.  I swallowed and tried to clarify what he was saying to us.  “Do you mean we should take him to Sick Kids emergency right now?” I asked, my mouth dry.  He looked at me and shrugged, “sure”.  Sure.  Sure????  Didn’t this man know that the last time I took one of my children into Sick Kids Emergency, I was told she was going to die!!!!!!???  Of course he didn’t know.  As the Doctor’s words registered with me, I felt the ice cold blanket of raw fear envelop my body.  I began to tremble and hot tears collected behind my eyelids.  The Doctor looked at me, probably thinking I was a lunatic over-reacting mom, and said “sorry to worry you but he very sick.  Fever too high”.  I nodded, not trusting myself to speak as I was afraid I would scream all the hysterical screams I’ve been swallowing for the last two years.

 

Aimee and I grabbed our baby boy and literally ran out of the Doctor’s office, both of us lost in nightmares of the past.  I was nauseous and dizzy.  I was crying, panic-stricken, frenzied.  I felt so helpless and frustrated.  I just couldn’t understand why we could never do anything for our sick children.  What if something happened to Hugo?  What if he died?  I couldn’t stop my brain from jumping to horrible conclusions.  I cried and blubbered in the van as we raced towards home struck anew with how helpless we are as parents to do anything for our children if they are hurt or sick.

 

In that moment, I knew that I couldn’t go back to Sick Kids.  Couldn’t go back to the same emergency room we had sat in with Stella, watching TV and impatiently waiting for Doctors, worried about getting back to work and expecting them to tell us we just needed to get some antibiotics for her ear infection so we could go home.

 

Aimee was upset too, but because I was in such rough shape she took on the “strong” role.  We always seem to be able to balance out when one of us is feeling sad or overwhelmed.  She offered to go to Sick Kids and called her father to go with them.  I was tortured.  I was so upset and felt so guilty that I couldn’t be there with my sick baby, couldn’t take him to the hospital to get the help he needed.  But I was totally paralyzed with the fear and horror of “what if’s”.  But the guilt of not being able to look after Hugo when he needed me ate me up inside, twisting and tearing my insides, a storm of horror.

 

At home, Aimee quickly packed up a diaper bag and waited for her dad to pick her and Hugo up.  I called my sister and told her the update.  She came right over, and both of us sat together in the bathroom crying.  My dad came running over as well when he got the news, and though he was his usual calm self on the outside, I saw fear in his eyes as well.  We were a mess.  All lost in our own thoughts of Stella and Sick Kids and life and death.

 

Aimee left with her dad and Auntie Angie rushed to Sick Kids to meet them.  We all huddled and worried and waited.  I wandered around the house like a ghost, tortured that I was at home and wanting so badly to be with Hugo and Aimee, but literally paralyzed by my fear.  Sam was running around but I couldn’t even put him to bed because I was so incapable of functioning.  He was eating pizza with my dad and Heather and Daniel and Xavier and I at 10:30 at night.

 

Finally, after taking some of my anti-anxiety medications and getting Sam to bed, I crawled onto the couch and my dad held me as we watched the old black and white Marilyn Monroe film, “Some Like it Hot”.  I was beyond exhausted, but sleep wouldn’t come.  Hugo-Stella-Sam kept tumbling through my head.  I began to wonder why Aimee and I had chosen to have children when we couldn’t keep them safe.  Couldn’t keep them healthy.  I was so defeated.

 

At around 1am Aimee called to tell me that they had determined Hugo had a bladder/UTI infection and with a course of antibiotics he would be fine in a few days.  They were on their way home.  The relief that washed over my body was palpatable as some of the tension snaking through my every muscle released.  Within 15 minutes I was sound asleep, trapped in a dreamless black hole of fear, guilt, sadness and relief.

 

Aimee told me later that being at Sick Kids with Angie and her dad was very triggering and difficult for her.  That every second her mind was reliving being there with Stella.  The gift shop.  The waiting room.  The smells and sounds.  She said it was awful.  She said she didn’t think I would ever be able to go back there.  She doesn’t know if she can ever go back either.  She has been crying more often and reliving it over and over again.

 

Hugo has perked up considerably since Monday, and life has begun to pick up its regular pace again. 

 

But Monday reminded me how scarred I still am— how scarred we all are.  My entire family is so traumatized by what happened to our Stella.  Each of us gets up in the morning and goes to work or school or out with friends and we all make small talk and smile and tell people how grateful we are to have Hugo and Sam.  And it’s not a lie.  We are living genuine lives. But just underneath the surface, not even a millimeter away, are gaping, raw, bleeding scars that crisscross every piece of us and are revealed easily with a simple glance at a butterfly, the light of a birthday candle, the sound of a giggle, or even a baby’s fever.

 

I often tell people not to be fooled by appearances, that despite what they see, we are not okay.  But in this case, I really feel like I fooled myself.  I got so busy with school and the boys and my friends that I pushed the hurt and fear away.  But on Monday it all came rushing back and I remembered anew how tender the wounds of losing Stella still are and how far we have to go. 

 

“On Pain”

 

“Your pain is the breaking of the shell that encloses

your understanding.

 

Even as the stone of the fruit must break, that its

heart may stand in the sun, so must you know pain.

 

And could you keep your heart in wonder at the

daily miracles of your life, your pain would not seem

less wondrous than your joy;

 

And you would accept the seasons of your heart,

even as you have always accepted the seasons that

pass over your fields.

And you would watch with serenity through the

winters of your grief.

 

Much of your pain is self-chosen.

It is the bitter potion by which the physician within

you heals your sick self.

 

Therefore trust the physician, and drink his remedy

in silence and tranquillity:

 

For his hand, though heavy and hard, is guided by

the tender hand of the Unseen,

 

And the cup he brings, though it burn your lips, has

been fashioned of the clay which the Potter has

moistened with His own sacred tears.”

 

– Kahlil Gibran, “The Prophet- On Pain”

Daniel, Xavier and Sam eat pizza at 10:30pm on Monday


Xavier at the park:


Hugo is all better!


Spring picnic with Kari:


Miss you, Stellie:


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First Day of Spring

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First Day Of Spring

Today is the first day of Spring according to the well-worn Real Estate calendar that hangs crookedly from the fridge.  There’s still plenty of snow on the ground and a cold, biting wind froze snowflakes to my eyebrows this morning.  But never mind that, it’s officially Spring.

Spring is the season of all the RE’s: REnewal, REbirth, REvitalization, REjuvenation, REplenishment, REstoration, REgeneration .  All such promising and active words, but I don’t know if I’m ready yet. It’s easy to hide and hibernate in the winter.  You tell yourself and others that it’s cold outside, the weather is bad, your stroller doesn’t work well in the snow, your winter boots have a leak.  You curl up inside and eat heavy stews and cheesecake and shut out the sun.  But in the spring, as the weather gets warmer and neighbours cautiously peek their heads out of the front door like gophers, it will be harder for me to stay inside where it’s safe and warm.  Soon the weekly Farmer’s Markets will start up again, the invitations to cottages, the long warm days, the chance for weekend picnics and trips to the Beach. Birds will start chirping at the windows beginning at 4am, and Stella’s birthday will come and go.

I have already gotten the first birthday party invitations for three of her friends who are turning four, and one friend who is turning three.  I read these invitations with a combination of gratitude, sadness, jealousy and joy.  I want to be able to go and celebrate with my friends, with Stella’s friends.  I want to watch Sam and Hugo run around these parties and just enjoy my sons, be in the moment and grateful to be part of a beautiful community that has not run away from me, but rather held me closer and encouraged me to do what I can, when I can.  But I am always struck with the randomness of it all.  Most of my friends and I started our families together at around the same time.  We all navigated sleep training, introduction of solids, first words and first steps together.  But now their children are getting ready to start kindergarten and taking skating lessons on weekends and my child’s ashes are sitting in a stone box somewhere in a drawer on Palmerston Ave. waiting to be scattered when the ground thaws and the first buds appear on the trees.  It’s hard to fathom sometimes.  Yet I read something that actress Valerie Harper said in a recent interview.  Harper was recently diagnosed with a (different) type of fatal brain cancer, and given three months to live.  She said when people ask, “why you” she responds, “why not me?  Why would I be exempt to something as destructive and random as cancer?”  And I like that answer.

But the truth is, no matter how much I love my friends and their children, it always hurts just a little bit to be around them.  But I chose long ago to endure the pain because the friendships that comes along with it are more than worth it to me.  Still, birthday’s will continue to be challenging for me.  Stella’s birthday is April 18th, so if she were alive we would likely have had a party for her somewhere around the weekend of the 13-14th.  Instead, we received a cordial invitation in the mail yesterday that says:

The Staff of the Haematology/Oncology Program,

The Hospital for Sick Children,

Respectfully invite your family and friends to our 13th Annual Memorial Service honoring the life and memory of your child.

April 14th 3-5pm

It just makes me want to scream until my throat is hoarse.  Instead of planning a birthday party, we will be lighting a candle with other bereaved parents and looking at “a picture or a sample of your child’s art” that they recommend you bring to the ceremony.  Blech.

Some bereaved parents in their blogs and writings talk about their children celebrating birthday’s in Heaven.  They write things like, “Happy Birthday James, celebrating 8 years since he was born and his 4th birthday in Heaven”.  How I long to be able to believe the way they do.  I am still searching for exactly what I think happens after death, I think Stella is somewhere but I don’t know exactly where.  I sometimes try to picture Stella sitting somewhere in the clouds surrounded by friends, wearing a pink tutu, matching sunglasses and her curls blowing in the breeze as she, giggling, blows out candles on a big chocolate timbit cake.  But I don’t really see that as being a realistic vision of where she really is, so as a result I get little comfort from these images.

But the first birthday to celebrate without Stella, is Gracie’s.  Gracie had her fifth birthday party last weekend and when it came time to sing “Happy Birthday”, as Gracie’s eyes glowed under the light of her birthday candles, I couldn’t stop the tears from rolling down my cheeks as I swallowed to keep the pieces of my heart from ricocheting up my throat.  Gracie, sweet as ever, made mention of her cousin Stella in her “Frances” as she calls the thanksgiving prayers we sometimes give at special occasions, and a candle was lit in her honour.  Still, something was missing.  She was missing.  I thought back to all the other birthday’s that Stella had been there for.  She was always placed right next to Gracie, to help blow out the candles and celebrate next to her best friend.

Strangely enough, the place that Gracie had her party was at her Nona and GrandPa’s house.  These are Aunt Juju’s parents, and they lost a daughter once too.  Julia’s older sister was hit by a car and died when she was a child.  As we stood there singing to Gracie, I looked at them and wondered if they still think of their daughter, 30 years later, every time someone blows out the candles on a birthday cake.  I see their dead daughter’s picture around the house.  I counted two with her in them, 1980’s pictures that have a bit of a yellow tinge to them and look almost antique.  I thought about how many parties, celebrations, holidays, etc. they have endured without their eldest child and wondered what it would feel like for Aimee and I, thirty years in the future, to maybe be looking at one of our grandchildren turning five while a faded picture of Stella smiled at us from the curio.  But it hurts my heart to think to far into a future without Stella, so I quickly tried to dismiss these thoughts and wiped the tears from my eyes.  Yet I continued to wonder, what will it feel like when Stella has been dead so long she isn’t mentioned at the birthday parties?  She isn’t talked about during “Frances”, and other people in our lives never met her, but just heard a bit about her form us and looked at a couple of outdated snapshots sitting around the house.

In that moment, I decided that Aimee and I were going to celebrate Stella’s birthday this year.  Not as a “Birthday in Heaven”, but as a true celebration of the day she was born.  We will be happy that day, and be grateful for the time we had with our girl and the incredible gifts she gave us.  We will laugh and remember and do all her favourite things, and eat cake and buy balloons.  Stella’s birthday will be celebrated here, on Earth with us.

The 4 o’clock sun is beaming into my windows now, causing a glare on the computer screen and making little prickles of sweat pop up on my temples.  A sure sign that Spring really is coming.  And hopefully once the snow melts and the sun begins to peek through the grey clouds, I will be able to welcome Spring and partake in some of those “RE’s”.

Especially REflect and REmember.

Happy Birthday Gracie!

Poppa and Hugo (photo by Natalie Hemmerich):

Sam at Jungle Cat World (photo courtesy Natalie Hemmerich):

Nanny and Hugo:

A bittersweet day. Sam, riding Stella’s bike (March, 2013):


Stella on her bike (October 2010 same age as Sam in pic above):

 

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Favourite Photos

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My Favourite Photos

Photos are a funny thing.  When my great-grandparents were young, photography was still in its infancy and you had to go to a fancy studio to get portraits done.  There are only a few pictures of my great-grandparents that I’ve ever seen.  Their entire lives are represented by one stiffly posed photo with siblings, one graduation photo, one wedding photo and one family photo where they are about middle-aged.  With my grandparents, it was similar.  I think they each have about 5 or 6 photos of themselves as children.  Even though my four grandparents were all from different places, each set of their childhood photos are all tiny, blurred sepia prints that are very posed and almost completely without smiles.  By the time my parents were children, photographs were a bit easier to come by.  They each have piles of black and white photos of their childhood and youth, but they are fairly small in size, and shaped like postage stamps.  They have started to fade and the edges are crinkled and crackling. By the time Aimee and I were born (in the late 1970’s), everyone had cameras but because they were film and you only got 24 in a roll, the parts of our childhood that are photographed are a bit sporadic. Lots of photos of us at the cottage, at Disney World, on our birthdays and Christmas.  But nothing really of the “in between” times.  The normal, regular, day to day lives we once led.  The photos we have are stuck in old photo albums with brown leather covers, cheap gold vines outlining the pages.  They are the magnetic type of album covered in strips of sticky glue that hold photos to the page with sheets of clear plastic on top.  The pages are turning brown at the edges and the photos are permanently stuck in their chemical beds.  The pages of our childhood albums are well-worn from decades of being looked at, and all the photos in them are familiar to both us and our families.

When Stella was born, Aimee and I invested in a digital camera (as did most parents we know).  Digital cameras are different.  They can take dozens of shots in just seconds, and you can easily delete the ones that didn’t turn out.  You can download them to your computer, or the web, and have a play by play of all the things you and your family have done.  By the time Stella was diagnosed with DIPG at 26 months, we had hundreds and hundreds of snapshots and dozens of videos of her.  After her diagnosis, we stepped up the photographing and videoing ten-fold, desperate to capture as many moments, looks and memories as we could of her.  I have piles of printed photos and 27 folders on my computer full of Stella pictures.  But I still feel as though that isn’t enough, which is funny when I consider the amount of photos my great-grandparents and grandparents had to represent their lives.  But it always strikes me that there is a finite amount of photos of her.  That I can spend hours looking through all the photos, but there will never be any new ones of her because she’s dead.  Even though there are thousands of them, I know each photo of Stella.  I remember the day that every single one of them was taken, what we were doing, who was with us.  These single moments capturing both the ordinary and extraordinary parts of our lives sometimes bring grief, sometimes bring comfort, but always bring back a tiny piece of Stella.

So today I decided to share a few of my favourite photos of Stella.  Most of these are from the last two years of her life, some of them might be familiar to many of you, others will be new.  I have many beautiful pictures of her as a baby, but I like to look at the photos where her personality really shines through!! So, here are the ones that I come back to again and again as I continue to miss Stella and try to find ways to keep her as real as possible to me:

This is Stella at the CN Tower in November, 2010. We went to celebrate Tristan’s 15th birthday as he had never been before.  Aimee was feeling incredibly sick that day as she had just suffered a miscarriage a few days earlier. We were stressed and tired.  Stella was 19 months old and we were 1800 feet in the air looking down on Toronto.  Grown men were getting weak knees from being so high up, and Stella was pressed against the window joyously.  No fear at all in that little girl:


 

This one was taken on Christmas Day, 2010.  I like it because Stella is totally passed out, but you can see how she insisted on dressing herself that day.  She looks part toddler, part clown, all Stella!  I remember she was so excited and hyper that it was Christmas and she was running around with Gracie that the only way I got her to go for a nap was to take her for a 40 minute walk in the freezing cold in her stroller.  What an imp: 


 

I like this one because it is all wrong.  Two-year olds should not be sitting on the granite counter, above the tile floor and scribbling on the family calendar with appointments on it with a permanent pen.  It shouldn’t have happened but…hey, this was Stella.  Taken February, 2011:

With Stella even tooth brushing was an adventure.  She insisted on sunglasses and her special tooth brushing song every time.  March 2011:

 

This picture was taken in April of 2011, two months before we learned the acronym “DIPG”.  We were driving home from our best friends’ house, Ray and Brad, and Stella was unusually quiet in the backseat.  Since we were used to driving while dodging flying running shoes and constant demands, we looked at each other and mouthed, “don’t turn around.  Don’t give any attention”.  We passed the 50 minute drive in relative silence, both thrilled at Stella’s “good behavior”.  Of course, when we got home and turned around we found that Stella had been busying herself the entire ride with a black pen.  She had coloured her legs, arms, the carseat, car door and anything else she could reach.  We learned our lesson that day, but it still cracks me up when I think about it!!

This is so Stella to me.  Sitting in GrandPa John’s backyard, a warm day in April 2011.  She dressed herself (of course!) and is wearing her “big sister to be” t-shirt we had just bought for her.  She is just vibrating with energy and life:

 

These photos were taken in May, 2011 about a month before Stella was diagnosed.  It was at Flora’s second birthday party at the zoo.  I love them because there is clearly a 600lb polar bear swimming directly at Stella, and instead of being frightened or nervous, she pressed her face up against the window and squealed with delight.  The second one which shows the bear swimming away is funny because it’s as though Stella is saying to the camera, “Scared that one away, Mama!” 


 

This was taken a couple of weekends before Stella was diagnosed in June, 2011.  Lots of weekends Aimee and I took the “divide and conquer” approach to parenting, with one of us taking Stella and the other dealing with house chores.  But on this beautiful late spring day we spent the day as a family and had a great time.  This was snack time at Dieppe Park.  One of our last beautiful, wonderful, innocent days together as a family:

 

This photo was taken in September, 2011.  I love it because this was just a couple of days after Stella had lost her ability to walk completely.  We were at GrandPa John’s house for a BBQ with Aimee’s family and she was just glowing.  Her Uncle Dave snapped this picture and we love it.  She couldn’t walk, but she was so happy.  It was the first of many lessons she taught us about accepting change, not just gracefully, but joyfully:

                                                             

This is the first family photo we had taken after Sam was born, October 2011.  Stella was genuinely thrilled to meet her baby brother and even though Aimee hates this picture (she was less than 24-hours post partum…), I love it:

This was taken the day Stella proved yet again she was in charge of this tumor.  It was early March, 2012, on a day I took her downstairs to paint.  She couldn’t hold a paintbrush anymore, so I was doing hand over hand with her.  She kept trying to bite the end of the paintbrush and I was admonishing her, tsking and saying, “Stella, we don’t eat paintbrushes”.  She finally got her teeth around the paintbrush, yanked it out of my hand and began painting herself, using her mouth.  I was amazed, and she painted that way for months, sharing her ability with all of us and leaving a legacy of beautiful artwork behind which now adorns our walls:


 

They said she’d never make it to her third birthday, but she did!  Blowing out the candles on April 18th, 2012:

This one is “famous” in our circle now.  It was taken at the Butterfly conservatory in Niagara Falls in May, 2012.  This butterfly landed on Stella’s cheek and just stayed there.  We have about 15 photos from this moment with the butterfly on her face, but this is the best one because she’s looking straight at the camera.  It looks almost staged, it’s so perfect and it was just before we began to see Stella’s journey with DIPG as a sort of metamorphosis for all of us.

 

This one is the only photo we have of all three of our children.  It was almost impossible to get the three of them in one spot because Stella at that point couldn’t hold any of her body parts up individually and Sam was SO active and would never sit still or be held for any photos, while Hugo slept through almost everything.  Taken in August 2012, this is the best one we have, and we love it: 

 

This was taken on labour day, 2012.  We had Arin and his family over for fireworks and a big one had just gone off with a loud BOOM.  It scared all the kids (you can see the babies crying), and Stella let out a huge laugh.  It was so HER!


This was taken in September, 2012.  Stella had agreed to go to Sobey’s to buy bananas and avocados for the first time in weeks.  She was so happy that day, she had just come out of a “I think she’s going to die” week, and I was bursting with joy that she was feeling better.  It was a gorgeous fall day, she and I giggled and laughed and played.  I remember it all so clearly, the smell of leaves and the laughter of kids coming from the schoolyard we walked by.  She held the bananas and avocados and stuck her tongue out for “more”.  It was a very happy, “ordinary” day.

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This picture was taken just a couple of days before Stella fell into the sleep that she never quite woke up from.  In the two weeks leading up to her rapid decline, she began wanting to go for walks to Dairy Queen everyday for ice cream.  Aimee and I would load all three of our kids up in strollers and make the 20 minute walk there and back each day.  This was taken on our last trip as a family and I love it because Stella is literally two weeks away from death, yet her smile is just as pure and beautiful as the day she was born.  She is glowing with happiness despite the fact the DIPG had taken almost everything from her:

I have more photos I love to look at, many, many more.  They will never be “enough”, but they are something.  Thousands of snapshots in time, a time gone but never forgotten.

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Jumbled

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Jumbled 

Yesterday Tristan came bounding into my house to do some homework and play with Hugo.  Throughout all that we have endured, I am so humbled by my teenage brother and the man he is becoming.  He adored Stella, the way we all did, yet it was a different adoration because he was a teenage boy and it wasn’t “cool” to spend time with your little niece.  But he did it anyway.  He took her to school with him, had a photo of her in his locker, skipped movie dates with friends to watch her hunt Easter eggs instead.  He was always terrified that something would happen to her, and I would roll my eyes in exasperation when his pestering about a fever or whine would get to be annoying and snap, “Tristan—she’s fine.  Nothing is going to happen to her, quit worrying.”  After we got the news that Stella was going to die, he was one of the hardest people to tell.  I remember we had him come to the hospital with my mother, our friend/grief expert An and our other friend/Asperger’s expert Cheryl.  When Tristan saw me standing in the hall of the hospital he ran to me, his face contorted with worry and said, “Mish…just tell me she’s going to be okay”.  I put my arm around him and began walking him to “the room” they had given us to meet in.  He pulled away and kept repeating, “Mish, what’s wrong?  Tell me…she’s going to be okay, right?”.  I had barely sat down in the room and turned to him when he began dry heaving into a garbage can.  “Mish…what’s going on?” he wailed, “Stella’s going to be okay, right?  Tell me she’s going to be okay”.  I remember crying and putting my hand on his knee.  I remember saying, “I can’t tell you that, T.  She isn’t okay.  Stella has a brain tumor and she’s going to die”.  The reaction was an immediate outpouring of anger.  Swearing, ripping a cross he had been wearing off his neck.  Yelling.  He cursed God.  He cursed the world.  He begged me to take back my words.  I sat there and cried, shaking my head.  I didn’t know how to stop the pain from flowing out of our hearts.  It lay there on the floor, a river of tears and dread and horror.  We were bleeding from our souls out.  He was broken, the same way we all were.  The first month after Stella’s diagnosis, Tristan couldn’t stand to be near her.  It was too hard, too sad, too hurtful.  I understood even though I was worried that he would regret his decision to stay away. Eventually he came around and they resumed their beautiful uncle/niece relationship.  As she declined, he stayed right by her side.  He read her books, he sang her songs.  Near the end, when she was too tired to even keep her eyes open, only Tristan and Gracie could get a smile out of her.  Besides Aimee and I, Tristan was the last person to lay with Stella’s body after she died.  He cuddled with her for a long time, whispering to her and stroking her hair.  He held a candle with the rest of us as she was carried out of the house for the final time, and put his arms around Aimee and I as the car with her inside drove away. My little brother trying to offer comfort to us in his time of sorrow.  The little boy whose diaper I once changed now stands a full head taller than me, his shoulders twice as wide as mine, his voice deep and low.   He’s a 17-year old boy.  He doesn’t shower enough, has messy hair, sometimes forgets to brush his teeth, wears ill-fitting clothing, and had to watch his precious niece rot away in front of him.  And yet, he has found enough bravery and love in himself to care for his nephews with the same intense love and fun as he did Stella.  It amazes me that he’s not more bitter about the experience, not afraid to get hurt again.  I am so proud of him.

Anyhow, he came into my house yesterday and told me that he had found on an old telephone of his a recording he made of Stella talking with him.  He was thrilled and wanted to play it for me.  The first recording was taken in September 2011, three months after her diagnosis.  Her adorable little voice says, “Are you going to come to my birthday party?” (friends of ours had a big party for her in September of that year, even though her real birthday is in April).  Then she says, “I’m sitting on the couch with Mama”, and finally, “Bye-bye”.  The next recording was in October, just a month later but this time her speech is drawn out and garbled.  She says something I can’t understand then a slow, “Are…..you…co…ming…o…v…e….r?”, then “I….l-o-o-o-ove…y…y….y….o…u….Unk-ie”.  Hearing her voice again was like a thousand daggers shooting through my veins.  I could have closed my eyes and she would have been standing right next to me talking.  That night, I couldn’t sleep.  I was haunted by the sound of that voice.  I ached with how much I miss her.

I’ve noticed recently that I want to tell anyone and everyone I meet about Stella, about her death.  When the stern man at my school frowned and grumbled a few times while auditing my courses and insinuated that I had messed up some of the confusing paperwork, I wanted to say, “Be nice to me, sir.  I’ve been distracted.  My daughter died”.  When the lady behind me at the supermarket clicked her tongue and sighed loudly at the elderly woman in front of us who was painstakingly counting out .37 in pennies, I wanted to turn to her and say, “Be more patient.  My daughter died.  Standing in line an extra minute isn’t worth getting upset about”.  When the people at McDonalds early Saturday morning see me struggling to sit down with my two boys and raise their eyebrows and whisper about how close in age they are I want to tell them, “Don’t judge me.  I need these boys.  My baby was taken from me and they keep me alive”.  I want to go to the local school and tell them, “I got your letter about registration.  I should be signing my daughter up for kindergarten today, but I can’t because she died”.   I want to tell the nice lady I met at the library this afternoon. The one who looked at Sam running around then pointed out her own daughter and smiled at me saying, “Wait until he’s 2, it goes so fast and they’re so much fun at 2!”.  I want to say, “I know.  I had a two year old daughter who ran around this library and said funny things too, but she died of cancer four months ago”.  I want to sew a big red “S” on my jacket so that when I go out and people ask me about it I can say, “S stands for my daughter Stella.  She liked cupcakes and timbits, green and purple, dancing and laughing.  She died.  She had a brain tumor and it slowly strangled her brainstem, taking away her faculties one at a time until it choked the last breath from her while I held her in my arms”.

What I really want is to share with everyone the experience that we’ve been through.  Not just the fact that Stella died, but the whole ordeal.  I think it’s because I want everyone to share my pain. I want the world to stand there and scream and cry with me, be as sad as I am.  I want them to know that even though I look normal, even though I am out there in society, I am badly scarred.  Just beneath the surface I am raw and hurting.  I want them to shoulder some of my hurt so it’s easier to bear.  But that’s impossible.  Even Aimee grieves differently from me.  We lay in bed together at night and read, side by side but separated by our own thoughts about the little girl that burst into our world almost four years ago, turned everything upside down in a flash of energy and curls, then faded away to the sky.  We grieve together and alone all at the same time.

This morning I couldn’t send Sam to daycare because he had a fever.  He sat on my lap on the couch for hours, feverish and whiny.  We watched Treehouse TV and he sucked on his bottle of milk and/or sippy cup of water. A familiar feeling crept over me.  Sitting on the couch for hours at a time, cradling a little body on my lap.  I held him and smoothed his sweaty hair with one hand, my arms circling him tightly, feeling his breath steadily blowing against my cheek.  I was sad that he was sick, but it was also nice to just sit and cuddle him for awhile.  I remembered back when Stella was his age and used to get sick sometimes.  I was always incredibly stressed about having to call into work and say I wasn’t coming in because of my kid.  My bosses were all really nice people (I worked for three women), but none of them had any kids of their own and I always felt them rolling their eyes at me when I had to miss work because of Stella. I know I was impatient with her when she was whiny, and frustrated about having to sit on the couch all day— boy was I ever clueless back then about “sitting on the couch!”.  Today it felt good to just sit there and care for Sam without worrying about what they thought of me at work, or when he was going to get better.  (Hugo for those of you wondering, was sent to daycare in Sam’s place so I could focus on Sam getting better and not have my attention split between two crying and needy children all day).

All these thoughts tumbled through my head as I sat today.  Thinking about Tristan and Stella and Sam and Hugo.  Thinking about the past and the present.   Thinking about her voice and her smile.  That’s what it’s like for me right now.  Everything is a jumble of thoughts and feeling, all seething just underneath the surface.  They can’t be contained in hours or days or minutes, they just float in and out as I go about my day.

Curls and ice cream and green nail polish and sick babies and the couch and my heart, broken but still beating strongly next to Sam’s.  And then night falls and I realize I made it through one more day without my daughter by my side.  One minute, one hour, one day at a time.

But damn, it hurts.

Uncle Tristan and napping Hugo:

Now that’s alot of boys!  Auntie Heather with Xavier, Hugo and Sam:

Hugo goes to Sunday School:


Hugo and Sam share morning snuggles and bottles:


Stella, March 2011 (in this photo she is stomping on her bagel with her Dora shoes…):


 

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