First Day of School

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Aimee, the boys and I just returned from spending a glorious Labour Day weekend at the cottage.  We laughed and splashed and played from sunup to sundown.  We made wonderful memories and enjoyed each precious moment of the long weekend.  Then, this afternoon we packed up and headed home with hoards of other people clogging the highways on the pilgrimage back to the city.  Normally we would take tomorrow off to avoid the traffic but, this year, for the first time in our lives, we had to get home on Labour Day because we have a child starting school.  Almost three years ago our little girl died in our arms.  And with her last breath also came the death of so many of the dreams and hopes we had for her and our lives.  But tomorrow, our oldest boy Samson  will be the first in our family to head to Junior Kindergarten.  And Stella will not be there to show him the ropes.  She won’t be there to hold his hand and march him into the school and boss him around.  But we are lucky because he will be going to the same school as his older cousin Gracie, and will even have the same teacher that she did when she was in kindergarten.  Gracie will step in where Stella is not able to.  She has already shown him where the library is and explained to him how lunch and recess works.  Even without his big sister to boss him around, he is ready.  Sam has a Ninja Turtle backpack with a Stella Star attached to the zipper and a Spiderman lunchbox that he intently filled this evening with yogurt, pita and a cheesestring.

Sam, ready for school:

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Big-girl Gracie will look after our boys for Stella:

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Heather and Aimee and I threw a little “first day of school” party for the boys.  We ordered pizza and Poppa and neighbour Ken came over too.  We had an ice cream cake with candles and Xavier, Sam and Hugo sang “Happy School Days” to the tune of Happy Birthday.  Xavier is starting JK tomorrow too.

Xavier and Sam are excited to start JK!  Hugo is just excited to eat a lollipop (o;

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Both boys know that it is a big deal that school starts tomorrow, but they don’t fully understand what it means for Aimee and I.  Sam hears us talk about Stella all the time and he knows that’s she is his sister, but he has no way of knowing how her death shook us to the core and yanked the foundation right from under us.  He will not understand why beneath our smiles and words of encouragement for him there are tears and heartache as well.  This moment means more to us than most people will ever understand.  We are standing on the brink of what could have been, what SHOULD have been, and what is now.  Sam is older than Stella ever lived to be.  He is going to be four in October.  Stella will have been dead three years this October and by her birthday in April, she will have been dead longer than she was alive.  Hugo is three now as well.  We are beginning to live the promises Stella’s death so cruelly took away from us.  Soccer lessons and swimming lessons and learning to ride a bike.  We have been thrust back into “the real world”.  After spending 16 months sheltered with Stella in the nest we created that was full of Timbits and family/friend visits and books and puppet shows and walks and ice cream it’s sometimes hard to re-enter the outside world.  I was commenting to Aimee last week about how “normal” everything is now.  We go grocery shopping, talk about work, bicker about how many vegetables the kids need to consume before dessert, read bedtime stories, order pizza, get stuck in traffic, have mundane conversations at work, fold laundry in front of the TV and have intense discussions about what brand of dish detergent to buy.  On the surface it looks as though we are just like all the other people walking to the park with our kids, but we still carry the scars of Stella’s short life and death.  We are forever changed by it all.  It is subtle sometimes though, manifesting itself in the way we let the boys splash in puddles and get muddy without trying to stop them.  The way Aimee and I leave dishes piled up in the sink so we can sit in bed together and read the paper before we go to sleep.  Our refusal to let lack of money stop us from having a cottage, going to Great Wolf Lodge and buying ice cream.  Our fierce loyalty to those who stood by us when Stella got sick.  My lack of frustration when I order a tea and get a coffee, or wait in line for 10 minutes because there is a cashier in training who can’t figure out the buttons.  Things other people might not notice or comment on, but that have become an important part of who we are.

The biggest change for me, of course, is the fact that I am now a Licensed Funeral Director in the Province of Ontario.  When I got the news over the phone in July that my official license had been issued, I broke down in sobs.  Aimee and I happened to be off that day and we had just finished a delicious lunch on the patio of a local restaurant.  It was eerily similar to a lunch we had shared the week before Stella was diagnosed…where we toasted each other and said aloud how life couldn’t get any better than what it was.  4 days later our world fell apart.  This time we finished our lunch and talked about how far we’ve come.  Then I got the call about my license and Aimee and I stood at the side of the road together and cried.  My Funeral Director’s license is so much more than a piece of paper for me.  When I look at it I remember two years of sacrifice for myself and my family.  I remember setting my alarm clock for 4am so I could study for my exam before the kids woke up. I remember missing Christmas with my kids to work.  I remember them crying at the screen door as I left for work, yet again, them begging me to stay home and take them to the park.  I remember the fear and frustration of my internship.  I remember how I almost quit several times because it was too hard.  I remember the doubts I had and the struggles Aimee went through trying to single parent while I worked and studied at all hours.  And I also remember the feelings of pride I had when I felt like I really made a difference in someone’s life.  Most of all, becoming a licensed funeral director is something that means I am living my life in honour of Stella.  Every single time I get up now and go to work, every time I work on a funeral or meet with a family I am doing it for Stella and with her in mind.  And when someone asks me how or why I do what I do, I look them in the eye and I tell them about my little girl.  I work at a funeral home in Scarborough now.  For the first time in my life I wake up each day and I’m happy and excited to go to work.  I am fully licensed, fully employed and, most importantly, fulfilled.

I did it! Class 1 Licensed Funeral Director in the Province of Ontario!!!

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A co-worker of mine came up to the cottage for a few hours on Sunday.  It was a beautiful late summer day.  The sun shone down and the kids had an amazing time.  Sam and Hugo jumped off the dock and swam around.  They played in the sand.  They paddled around in their kayak’s.  In between jumping into the water with the kids, we sat on the beach and took it all in.  As my co-worker was getting ready to leave he and I stood on the deck of the cottage and looked down at the dock where Sam and Hugo sat next to each other, heads close together, talking about a fish they saw.  Aimee was busily getting dinner started in the kitchen and he turned to me and said simply, “You have a great life”.  Without hesitation, I responded, “You’re right.  I do”.  I felt no anger or bitterness or guilt when I said it.  Even though my little girl isn’t here, I do have a great life.  It’s not perfect.  I wash darks and whites together, bite my nails, give my kids too much candy, watch The Bachelor on TV, drink Pepsi for breakfast and wear mismatched socks.  I’m not a perfect parent, not a perfect Funeral Director, not a perfect daughter or sister or wife or neighbour.  But I wake up each morning and find JOY in the day I have been given.  Stella taught me that life doesn’t have to be perfect, it just has to be lived.

Living life with our boys each and everyday!

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Our inspiration each and everyday…

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Crib Notes

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Final Exams for me are starting this week.  The last few days have been a whirlwind of trying to balance motherhood, school and marriage.

I’ve had no time to write on the blog, no time to breathe or respond to emails or phone messages.  And just when everything is ramping up, when everything is starting to feel overwhelming and stressful, I realized that Stella’s birthday is just a few days from now.  Friday April 18th— Good Friday.   For Christians the day marking the crucifixion of Jesus.  How appropriate and inappropriate all at the same time.

This is one of those times when I realize that being a grieving parent means sometimes having to ignore the ache in your heart to focus on the immediate tasks at hand.  I wish I could just walk up to all my teachers at school and hold up my hand and say, “STOP!  I need to walk away from school until I can get through my daughter’s birthday.  I don’t care about the exams, projects and presentations.  I need to grieve”.  But life doesn’t work that way.  I have been swept up in the stress of real like expectations and requirements and so I cannot allow myself time to sit and cry over my beautiful curly-haired daughter today.  I have to study, study, study.  3 exams in the next three days, then her birthday off to celebrate and mourn and then study, study, study, 4 exams next week.  Running, running, running.  Reading cue cards as I clean up the dinner dishes.  Reviewing notes over breakfast.  Watching pathology videos on my phone as I absentmindedly try to read stories to Sam and Hugo.   Frantically reading powerpoint slides on the bus to school, demanding that my brain soak up information even though every cell is telling me it’s tired, worn out and wants to do something else now.  Trying to keep up with classmates who often yawn at the end of classes and tell me they are going to go home and have a nap before they begin studying, or complain about how they have catch up to do because they went to the bar Thursday night. I sometimes want to punch those students.

I’ve got to hit the books, just wanted to say I haven’t forgotten about the blog…it’s just I’ve got no time.  I fall into bed at night and then jump up in the morning and it’s go-go-go all the in between times.  Aimee is writing a blog post for Stella’s birthday on Friday, so there will be something coming then (o:   .

Stella’s birthday.  A day to celebrate.  A day to mourn and rage.

Ice cream for breakfast.  Timbits for lunch.  Macaroni and cheese for dinner.  Golden Girls and Dora The Explorer all day long.

Missing my daughter.  Reading The Principles and Practices of Embalming.  Wiping Sam’s nose and changing Hugo’s diaper.  Listening to Aimee’s work news.  Laundry to put away, dishes to do, groceries.  Buy balloons for Stella’s birthday.    All of life colliding into one big mess of priorities and I am emerging frazzled and teary, but determined.

One more important thing… Baby Stephanie is sick.  Very sick.  Please send your wishes, prayers and thoughts to her and her family.  I remember being where they are now.  Nothing to distract you from the agony of helplessness and despair.  Nothing to stop you from free-falling into the blackest darkness on Earth.  A kind word is like a small candle burning through the clouds, making the journey a little less lonely.  You can connect with Stephanie’s family through : babystephanie2014@gmail.com

 

 

Studying now.  Crying later.  Celebrating (hopefully) after.

 

To everything there is a season and a time to every purpose under heaven.- -Ecclesiastes 3:1

Xavier and Hugo at park:

 

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Sam at park…wearing his pink Dora crocs…inspired by Stella!
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Breakfast at McDonald’s:

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Breakfast at home:

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A new photo!  My friend Omo found this in her collection and sent it to me.  I LOVE seeing new photos of my girl!!!

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Telling Stories

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Yesterday in school, we had to do an exercise where you paired up with someone in class you don’t know and told them “your death story”—i.e. the story of a death that changed your life and, for many people, the reason they decided to become a Funeral Director.  The idea was to experience how difficult it is to share something sad and personal with a total stranger, to simulate what a family might feel the first time they walk into a Funeral Home and meet with you after their loved one has passed away.

 

The person I paired up with was very nice, and shared with me a story of a boyhood classmate who had drowned, teaching her at the awkward age of 13 how short and random life can be.  She then listened wide-eyed as I explained a bit about Stella.  I talked about the day she was diagnosed and the day that Aimee and I left our bouncing girl at home playing happily with friends while we drove to Mount Pleasant Visitation Centre and planned her funeral and how amazing the staff there were.  I spoke about how “good” her death was, how full of love and support and how she inspires me in what I do and say every single day.  I shared with her that I feel Stella’s death has made me better in many ways.

 

Afterwards, we debriefed in the class about our mutual experiences.  Many people had gotten extremely emotional in telling their stories.  Some were angry, many wiped tears from their eyes and one woman wept as she recalled having to put her beloved horse down.  One person didn’t even do the exercise as speaking about his personal loss was too raw.  He left the classroom instead.  When my partner was asked about her experience with me, she furrowed her brows slightly and said…”Well…the story was sad, I mean it should have broken my heart, but Mishi was smiling the whole time she was telling it…glowing almost”.  My partner seemed perplexed by this and I immediately turned beet-red.  It wasn’t a criticism, it was just that she was surprised I spoke so effortlessly and unemotionally about something so tragic.  I let her words sink in and have spent the last several hours mulling them over in my head.  I suppose the reason I tell Stella’s story with a smile on my face is because I have rewritten parts of the narrative of how she died.  I have turned her story into the Happy Ending type that I prefer to read.  Knowing and loving Stella and talking about her makes me happy, but that’s only because of what I choose to remember and tell people about.

 

Sometimes when we’re talking, Aimee will bring up something to do with Stella’s diagnosis day, or cancer, or funeral planning and I will have absolutely no recollection of what she’s talking about, leading her to make jokes about how I only remember the things I want to— but she’s not wrong.  I find that my brain has sieved through all the experiences of the time since Stella was diagnosed, and chosen only to keep the ones that stop me from falling to my knees, my chest exploding with grief.  When I tell Stella’s story, I focus on all the good things.  I talk about how happy she was and how, as a family, we found a way to laugh and live around Stella’s cancer.  The story I tell is about how Stella didn’t seem to mind when she lost each of her faculties, she still smiled and laughed and communicated with us.  I have memories of her playing with her friends and cousin Gracie even after she couldn’t walk or talk anymore.  I remember days spent in the sunshine under the tree in our front yard visiting with people, reading books and painting Stella’s toenails.  When Stella couldn’t see he pictures anymore, I would tell her the story of Cinderella.  She always smiled when the clock started to toll midnight, “DING-DONG”.  I think about ice cream and Timbits for breakfast.  I remember how it seemed every single person we knew, or who found out about Stella, did kind things for us.  I witnessed more acts of selfless generosity and love in those 16 months than I knew existed in the world.  Even now, a year after her death, people still send me trinkets that make them think of Stella and write me that they have not forgotten her.

 

I remember the moment she died as being very peaceful and quiet.  A tiny last breath as Aimee and I sat on either side of her, cushioned on “the big girl bed”.  If I am honest with myself and reach deeply into the recesses of my brain, I can remember how horrific the days were as we waited for that last peaceful moment.  Watching Stella’s eyes glaze over with a red film, suck in a half open-half closed state.  Watching her chest rise and fall, panting.  How she didn’t eat or drink for 12 days and it looked like she was starving to death.  How her body started to bruise all over from blood coagulating as she lay on one side, everything slowing down.  I try not to think about having to clean her mouth out with special solutions because it was getting thick and fuzzy from bacteria and lack of moisture.  If I think very hard, I remember hurting so much I couldn’t breathe.  I remember escaping to the basement to sleep for hours on the day she finally died because I couldn’t be with her anymore.  Couldn’t watch.  It was all my most precious dreams panting, dying, starving right before my unblinking eyes. And now as I write this, tears stream down my face and pool into my neck because it hurts so much to remember.

 

When I tell Stella’s story, I don’t focus on the nightmare of those first few weeks after diagnosis, when I couldn’t stand to be in the same room with Stella because the pain was overwhelming and made me vomit where I stood.  I never tell people (unless they read the blog from the beginning, I guess), about how jealous and angry I would sometimes get watching her friends run circles around her.  I don’t talk about how frustrating it was for all of us— Stella included— when she began to lose her ability to speak.  When something that once came so easily was something that needed to be pushed out painfully one syllable at a time, and often after all her efforts that left her panting and wide-eyed, we had no idea what she was trying to say.  Finally, one day, no more sounds came out.  Except laughter.  Right to the end, if she wasn’t too tired, she could always make a cackle-y laugh that ended with an out-of-tune series of three little giggles.

 

I have chosen to rewrite parts of Stella’s story, not to change anything that happened, but to leave some things out so that I can share the good, positive parts of her life and death.

 

The experience that my partner had in class, was of me being happy and proud of the life and death we gave Stella.  I have told her story so often and so publically— written on the blog, a couple of articles, given speeches at schools and Church, that it has become a narrative—a planned out, chronological, “feel good” story.  I’ll never forget when I was asked to speak to a group of 7 and 8th graders for Terry Fox Day last year and the Principal cautioned me that he wanted the speech to be “uplifting” as opposed to sad.  That’s what people want to hear.  They want to be inspired and feel good at the end of a story.  They want to believe that even though Stella died of this horrible monster called DIPG, her story is not a sad one.  And that is my mantra when I tell people about her.  The title I often use for stories and speeches is Stella Joy- A Love Story, because for me, that’s what it has become.   I suppose that’s one reason that this blog is important for me and Sam and Hugo to have.  I have never gone back and re-read anything I wrote, but I know that within these type-written pages, there are those pushed-aside feelings of anger and grief and frustration and horrific sadness.  They are all here, easily read and acknowledged.  Each entry of this blog builds on the last and forms the full story of Stella and what happened to her.  Catherine Porter’s articles and E-Book about Stella are the same, chronicling the ups and downs of our experience.  But the story I have written for Stella, the one I choose to tell when people ask me, is not a sad story.  It has sad parts to it, but it is the story of overcoming pain and learning to embrace life in small moments, not big chunks.  It is about love and community and believing that good things can come from horrible situations.  It is about honouring a life lived by focusing on the beauty, not the ugly, twisted tumour that stole my daughter’s life.

 

I have often said that my life mantra has become, “Find the Joy”.  But perhaps, more accurately, it should be: “Find the Joy.  And if you can’t find it, make it up”.

Sam and Hugo play with some special wish stars that a blog reader from the UK kindly sent us this week:

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Stella, Summer 2010:

Stella Muskoka chair 1 year

Stella and I, a few days before she died: 

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Toast the Eggnog

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Toast the Eggnog

 

I just finished my final exams for first semester back at school.  Whew!

 

Even though this is what I wanted to do, it was a tough slog this semester.  Going back to school with a 2 year old and a 1 year old doesn’t exactly lend itself to the self-indulgence required to focus on your studies.  Despite the fact that Aimee and our families are HUGELY supportive and wonderful, the day-to-day workings of a life with two toddlers are not exactly conducive to studying.  Since school started in September, we’ve:

 

  • Been to Sick Kids Hospital 3 times (1x Sam, 2xHugo)
  • Had 1 incidence of impetigo (Sam)
  • Had 1 confirmed ear infection (Hugo)
  • Had 6 incidences of stomach flu (Sam, Hugo, Mishi, Sam, Hugo, Hugo)
  • Had 1 bronchial infection (Mishi)
  • Had 8 colds (Mishi, Mishi, Hugo, Mishi, Hugo, Sam, Mishi, Mishi)
  • Had 1 sinus infection (Aimee)

 

In between I’ve been to hundreds of hours of classes, written 14 tests, 8 exams, 2 lab reports, 1 assignment and attended 2 Embalmings and 1 career fair.

 

Finding time to study has been difficult, to say the least.  But Aimee’s motto is, “We can do anything.  We’ve already done the hardest thing ever”.  And she’s right.  So we got through it.  WE as in me and my entire family.  I’ve never been so grateful for a break as I am now.  Three weeks off.  Whew.  And I’m doing it.  I can’t believe it.  I’ve wanted to go to school full-time since I was 20 years old.  It took 14 years, but I’m a full time student.  Amazing!

 

Now with school over until January, I’ve raised my head from the books, my butt from the desk and begun to look around again.  Suddenly…Christmas is almost here!

 

I can’t believe this is our second Christmas without Stella.  Since Stella’s diagnosis, we struggled with Christmas.  We first tried to do “Christmas Light” for Stella’s last Christmas.  Last year we also didn’t feel like celebrating whole-heartedly.  This year, though Aimee and I haven’t really talked about it or made any major decisions, it seems to have crept back in.  There is a tree in the corner.  Not the corner we put it in when Stella had DIPG (then we put it right next to the couch so she could see it), the old corner from when we were young and ignorant.  There are three stockings hung by the chimney with care (Stella, Sam, Hugo).  There are silver garlands on the mantle, a snowman candle on the table and candy canes in the cutlery drawer.

 

There is also a lineup of Santa photos on the living room hutch.  The first is Stella at 8 months in 2009, smiling happily and they continue through each year until the most recent one, taken just 2 weeks ago, where Sam sits on Santa’s knee with his face painted like Spiderman and Hugo is looking half-asleep (because he was sick and feverish that day).  It’s an interesting mix of photos.  Stella with Santa in 2009.  Stella with Santa in 2010.  Stella in 2011 (after diagnosis), and a serperate one of Sam and Santa from 2011, Sam and Hugo in 2012 and Sam and Hugo again in 2013.  Old life.  New life.  Crossover.

 

The tree is the same, a collision of old and new.  Picture of Stella in a “1st Christams” ornament, family ornaments with just Aimee and I (2008), Aimee, Mishi Stella (2009), Aimee, Mishi, Stella, Sam (2011) and in 2012, an ornament that says Aimee, Mishi, Sam, Hugo and Stella— but Stella’s name surrounded by angel wings, to show that she died.  Dora ornaments from when Stella was alive, mixed with an ice cream cone ornament my mom gave us after she died.  It’s still so crazy to try to separate “then” and “now”.

 

But, overall, like everything else in life, Christmas has snuck back into our lives.  The same, but different.  A little less magical and sparkly.  Less presents.  Less fuss.  Less agreement from Aimee and I to run around like crazy trying to see everyone.  But it’s still here.  Everything looks and feels different, but Christmas is still around us with its cookies and photo holiday cards from friends and Christmas lights.

 

Another Christmas without Stella.  A whole year since the last one.  I can’t believe how big the boys are getting.  Sam is almost 26 months old now and talking up a storm.  He is so different from Stella.  He is super cuddly and affectionate.  He is sensitive and says things like, “Mama, I cold!” before snuggling into my lap with a blanket and a bowl of crackers.  He gives Hugo a hug in the morning, totally without prompting and if you get mad at him he responds by bursting into tears (whereas Stella would often laugh in your face and run away).  He loves Toy Story and singing Jingle Bells and idolizes Gracie, just like Stella did. Hugo’s personality has started to slip out as well.  At 16 months old, he has proven himself an easy-going and cheerful child.  He plays quietly by himself a lot, and when he doesn’t get his own way has these tiny melt-downs where he stomps his feet, but they are so fleeting that even he doesn’t seem to remember that he was mad a moment ago.  He reminds most of us of my dad.  He loves balls and trucks and follows his cousin Xavier around (Zay-zay as Stella and all the boys call him), and doesn’t care if the bigger kids steal toys from him.

 

Both our sons know Stella.  Sam calls her his sister, and if you ask him about his family he says Hugo is his brother and Stella is his sister.  Whenever someone says Stella’s name, he looks at them solemnly and says, “Stella die.  Her body no work ‘nymore”.  For a few weeks he was saying, “Stella pie”, so this is actually an improvement.  Hugo and Sam each end their evenings by kissing the paintings we have of Stella (each by a blog reader) in their rooms.  She is still a presence in our lives, even though she is not here.

 

My friend Sheri sent me an article a couple of weeks ago that a woman wrote who had a stillbirth.  It was a conversation she was having with her almost-grown-up children, and it’s similar to the type of conversation we will have with our boys one day.  A conversation where they learn that our family is only the way it is because one child died.  A conversation where they try to understand how things could have been so different, but aren’t.  The article ends by saying that things can’t be any different than the way they are, because that’s just the way things worked out.  It’s the same for us, I guess.  I will never stop mourning Stella, but it won’t stop me from celebrating the life we do have and appreciating all the positive things we experience in our daily lives.  It’s not so much about moving on, it’s just about living life in honour of her.

 

I find myself trying not to be sad right now.  I avoid looking at the videos we have  because the loss is still so great and hurts so much.  Seeing her so alive on screen makes me ache from the inside out.  So I don’t do it.  I try not to look at little girls dresses and shoes when I’m out shopping.  I am growing a shell to defend myself.  I still bleed, I still feel the pain of our loss, but I am protecting myself more and making a concerted effort to focus on the positive.  Not because I want to forget how much losing Stella means,not because I don’t believe that I can still be sad and withdrawn if I want to, but because I am choosing to hear the Silver Bells, believe in Santa and sing all dozen verses of 12 Days of Christmas.

 

Because that’s what Stella would have done.

Gracie and GrandPa put the star on our tree:

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The unmistakeable chill in the air is a sure sign that Fall is coming yet again.  Fall. the season of leaves changing, shorter days and longer nights, first day of school, cooler temperatures.  And, of course, the season in which Stella died.

Both Aimee and I are having similar experiences where we are incredibly triggered by the cooler weather.  There are some parts of our lives that are vague, almost forgotten (I can’t remember my birthdays from ages 20-24 at all), but the days and weeks that lead up to Stella’s death are as crisp and clear as ever.  Even on the days that we would rather forget, we remember.

We remember.

We remember everything.  How as the trees began to drop their brightly coloured leaves, Stella started to fade as well.  How the last trip we made with her was apple picking with Arin’s family.  The last place she was taken before slipping into the sleep she wouldn’t wake up from was Dairy Queen.  We remember the clothing that she wore those last few weeks, the foods that we ate, the television shows that we laughed through.  Aimee and I are watching the calendar.  Watching as the dates pass and that ominous day– that October 22nd date— draws every nearer.  That date that I spent 16 months wondering about.  When will it be?  How will it be?  Now I know, and the knowledge is worse than the wondering.

 

But as we have learned to do, Aimee and I cannot stop living our lives.  How often have I wished I could just pull the covers over my head and shut out the world.  But I can’t stay in bed because there are two little boys who need me to get up and smile at them and feed them and kiss their “boo-boo’s”.  I have to get up each day because that’s what Stella did.  Even when she could do no more than make seal-like noises to wake me up in the morning and swat wildly with her one arm, she got up.  And we lived.  Even if it was 15 hours on the couch, we filled the days.  Aimee and I often laugh about how we never thought we would miss the times when we spent all day on the couch watching Dora the Explorer and the Golden Girls, slowly feeding Stella mouthfuls of porridge.  But we do.  We miss them with all our hearts.  And though I’d be lying if I said on some of those days I wished I were anywhere but trapped on that couch, now that I am free to move and jump and go where I want, when I want, all I sometimes want to do is curl up on the couch and close my eyes and remember when Stella’s soft weight filled my lap and my vision and my heart.

But nowadays Aimee and I are caught up in the rhythm of regular life.  Wake up, feed kids breakfast, grab something to eat yourself, get dressed, get kids dressed, disperse to daycare, work and school.  Come home, make dinner, feed kids, bathe kids, put kids to bed, clean up, collapse into bed.  Wake up and repeat.  Sometimes a day or two goes by and everything seems the same because the pattern is so predictable, but then when you are forced to look back almost a year, you realize how different it all is.  How Sam is almost the age now that Stella was at diagnosis.  How Hugo, a mere 10 weeks old when Stella died, is now a fully-formed little toddler who walks around and loves trucks and laughs at his older brother.  How Aimee is back at work in full force and how I have become a full-time student.  How the house that was once constantly open, bursting at the seams with energy and visitors and shared food now sits quietly, it’s door mostly shut.  Empty all day long.  It’s hard.  We struggle because along with grief, we are dealing with the needs of a 23 month old and a 13 month old.  They don’t sleep well, they bop each other on the head with toys, they don’t like to share.  They challenge us everyday.  “What were we thinking?” we sometimes wonder out loud at the reality that we chose to have children 10 months apart.  Yet, we know we could not live without them.  The sleep deprivation, the time-outs, the tears and struggles disappear when Sam snuggles into my lap for bedtime stories, and Hugo nuzzles my neck after his night time bath.  It may not have been the easiest choice, but it was the best one for us.

Our family this past weekend at Stella’s bench/tree, Riverdale Farm:

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Now I do something I haven’t done since Stella was diagnosed.  I leave the house every single day, get on the subway and travel.  It used to be work and now it’s school, but as I shuffle along with all the other people walking towards the crowded escalators I feel more trapped than I did when I was on the couch all day. I miss the safe little bubble that we created for Stella when she was sick.  When almost every interaction we had was positive, and each day brought a new story about someone or something that had done something ordinary or extraordinary for our girl.

 

Out in the “real world”, it’s scary.  Being a student is a struggle for me.  I enjoy my classes very much, but I feel like an outsider.  The vast majority of my classmates are under 23 years old.  In fact, some are as young as 17.  I hadn’t fully realized before now how my children had become almost my sole interest.  I’m used to being in social settings where the most common question is, “How many kids do you have?” Followed by, “How old are they?” and “Are they in daycare/what school do they go to?” and you just build the conversation from there.  But here…well, here no one cares that I have kids.  I mention it- frequently- but have yet to be asked any follow-up questions to the statement.  The people around me talk about the party they went to on Saturday night and the part-time jobs they have.  They wander the halls walking together in groups, but everyone with their heads down as they furiously text or check facebook messages.  They talk about who is trying to “pick up” whom in class, flirt with each other endlessly and in the margins of their notepads, design the tattoos they are planning on getting. Young and childless, they are able to work evenings and weekends at Funeral Homes and have so much more experience than I do.  When I say I have never done something because I’ve never worked in the business, all the other students do is look at me with a mixture of horror and pity.  I imagine that when I fade back from the group they say to each other, “That old lady is never going to make it”.

 Sam and Hugo at our friends Christina and Kristin’s Wedding this past weekend:

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Sam, Hugo and Gracie spend time at BlueBird cottage:

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Familiar feelings of my awkward High School days have come bubbling up to the surface.  Not quite fitting in, but not a complete social misfit.  I got through High School by minding my own business and flying under the radar.  The mantra I once had is again playing in my brain: “Dress in plain clothing.  Don’t draw attention to yourself.  On breaks and at lunch find a quiet place and keep your head down”.  But that’s not who I wanted to be this time.  This time, I am coming to a school in my mid-thirties.  I have suffered the loss of a child and learned to be brave and stand up for myself and be painfully honest.  I wanted to walk in here and be the open, confident, smiley person that Stella was, and that I promised myself I would become.  But change is hard.  Change is slow.  And this change is fraught with emotion as I struggle to keep up with the realities of living life without Stella.  Part of me wants to quit.  Wants to run away and hide because this is hard.  The classes are challenging, the commute is awful and the social aspects are daunting.  I rationalize by saying that I’ve done harder things before, but then the other part of me says, “exactly, so why do you want to keep doing hard things.  Take a break”.  But there is a lot riding on this crazy idea of mine to go back to school.  A huge financial strain on my family, a huge leap of faith that I will be good at this and employable at the end of it, a huge risk that I will, very publicly, fail.  So I do the only thing I can— the one thing that Stella did every single day— I get up.  If I keep getting up and out of bed, then it means I’m living another day and that I will get through it.  I even had ice cream for breakfast on Tuesday morning before braving my class.

 

But thank goodness it’s Fall.  Thank goodness it’s the season that is most representative of change and not fearing the cold and snow that will follow because spring, with its promise of nice days will eventually come again.  Thank goodness Stella taught me to have patience with myself and to fight only the challenges of one day at a time, because one challenge at a time is do-able even if the entire experience is hard.  Thank goodness I can remember exactly what I was doing on this day last year, and remember how I promised myself to live better and be better.  Thank goodness I have the rhythm of the days to fall back into when the outside world feels too scary.  Thank-goodness I was given the gift of Stella who taught me that even the smallest gain can be a victory.  The little girl who taught herself to paint by grabbing a paintbrush with her mouth.  Who taught herself to communicate by sticking her tongue out for “yes”.  Who taught herself to dance by swinging one hand over her head.  Who taught a community about love and me about life.

 

Thank goodness that even almost a year after her death, I am able to find strength and inspiration in her every single day.  I remember once, before she was diagnosed, Stella tried to climb up the slide.  I kept telling her to go around and climb up the ladder instead.  “Why?” she asked me.  “Because you’re not supposed to go up that way,” I responded.  She looked at me than back at the slide

“Why?” she repeated.  I was flustered.  “Because…because it’s dangerous”.

“No Mama!” She shouted at me.  Stella said “no” to me so often, it just bounced off my back like a rubber ball.

“Fine,” I shrugged knowing she would never make it.  “Climb up the slide, but it’s easier to go up the ladder”.  At that, Stella smiled mischieviously and pushed and pulled and grunted her way up the slide.  She slid backwards several times and I stood with my hands on my hips resisting the urge to pull her off and force her up the ladder.  I knew she wouldn’t make it, and waited for her to see I was right.  It wasn’t that I wanted her to fail, I just couldn’t figure out why she wouldn’t just climb the ladder and be done with it.

 

But you know Stella.  She DID make it up that slide.  Her smile when she arrived at the top was priceless.  She could have easily gone up the ladder, but there was no challenge in that and she knew that making it up the slide was so much sweeter– especially because I had told her she couldn’t.  I remember shaking my head in wonderment.  What a turkey.

 

And so, even though it would probably be easier for Aimee and I to just “take the ladder”, we are going to live our lives Stella style and go up the slide because we know the “made it”! feeling will just be that much sweeter.  And, as Stella taught me, “I told you so” is pretty satisfying too.

 

There are two ways to get to the top of an oak tree;

Climb it,

or sit on an acorn and wait

 Stella, September 21, 2012:

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