277 Days

Download PDF

277 Days

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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


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

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


Download PDF

Everything I Need to Know, I Learned from Stella

Download PDF

 

Everything I Need to Know, I Learned from Stella 

 

There is a famous piece of writing called, “Everything I need to know I learned in Kindergarten”.  Here are the things the author says he learned:

 

  • Share everything.
  • Play fair.
  • Don’t hit people.
  • Put things back where you found them.
  • Clean up your own mess.
  • Don’t take things that aren’t yours.
  • Say you’re sorry when you hurt somebody.
  • Wash your hands before you eat.
  • Flush.
  • Warm cookies and cold milk are good for you.
  • Live a balanced life – learn some and think some and draw and paint and sing and dance and play and work every day some.
  • Take a nap every afternoon.
  • When you go out in the world, watch out for traffic, hold hands and stick together.
  • Be aware of wonder. Remember the little seed in the Styrofoam cup: the roots go down and the plant goes up and nobody really knows how or why, but we are all like that.
  • Goldfish and hamsters and white mice and even the little seed in the Styrofoam cup – they all die. So do we.
  • And then remember the Dick-and-Jane books and the first word you learned – the biggest word of all – LOOK.

 

Although I think this is an extremely well-written piece, I don’t remember kindergarten and Stella is not going to get to go there, so I’ve needed to change the lessons a bit to make them more true to my own life experiences.  The funny thing is, every time I think Stella has taught me all there is to learn, she teaches me something more.

 

So… this is titled, All I Need to Know About Life I Learned from Stella (so far…)

 

  • Sometimes a hug is all you need.
  • It’s okay to need help to stand on your own two feet.
  • Take lots of naps.
  • Laugh a lot, especially when the people around you don’t know what’s so funny.
  • The world is an amazing place— don’t be afraid to rediscover what you love each day.
  • Keep your comfort items nearby.
  • People will follow your lead— if you smile, laugh or act silly, so will those around you.
  • Time is everything, but also nothing.
  • Sometimes it’s better to be early.  Sometimes it’s better to be late.  Sometimes it’s better not to go at all.
  • Try not to bite people, but if you do make sure to smile when you’re done so they think you were just kidding.
  • Don’t fake it, be true to yourself and own who you are— even if you shock a few people in the process.
  • Lack of language does not preclude lack of comprehension.
  • Someday you may find yourself doing things you said you would NEVER do.
  • Even the bad things that happen teach you things.  Sometimes, especially the bad things.
  • Just because you can’t walk, doesn’t mean you can’t dance.

 

This Friday is exactly 9 months since Stella was diagnosed.  9 months is the average that children with DIPG live (children who have undergone treatment).  As of Friday, Stella will be living longer than “average” for children with this type of brainstem tumour.  It’s a strange position to be in, as now I feel like every single day after this point is a special gift from the Universe.  Although, with Stella not undergoing treatment, the Doctors told us 3-4 months from diagnosis, which Stella has long passed by now so we have already had so much more than anticipated. But forever wouldn’t even be enough.

 

I would do anything to keep Stella from dying.  I would gladly die myself, I would happily sell everything I own and live under a bridge for the duration, I would take her pain times ten and smile through it.  But nothing I can do or say makes any kind of difference.  Aimee and I are helpless in the face of this disease, so the only choice we have— the only choice thousands of parents whose children are dying around the world have— is to make the most of the time we have left.  We set out on this journey expecting to give Stella the world, but we have been surprised to find out that it is her who continues to give to us.  She gives us her love, her smiles, her wisdom and her incredible ability to adapt.  She has given Aimee and I a new understanding of ourselves, each other, our marriage, our hopes and dreams for the future.  She gives the world a reason to get a little smaller and to come together to remind us of the power of community.  She makes us proud to be her parents.

 

Aimee and I have learned that life is much sweeter, if we just take Stella’s lead on things.  If we don’t limit her with our own narrow views of what she “can” or “can’t” do.  All you need to do is view the pictures below, illustrating some of the things Stella has done this past week, to realize her understanding of living life far exceeds my own.  I am in complete awe of my daughter, and I wonder if Sam will think I’m a better parent because Stella has taught me about the kind of person I want to become.  I hope so.

 

I know there are still many hard times ahead for Stella and Aimee and Sam and I.  I know that my heart will break, the tears will fall, the darkness will come.  But I am going to bed tonight with the hope that whenever I feel most like I can’t go on, I will remember how Stella laughed as Aimee held her and twirled around the room this afternoon “dancing” to Raffi, and find the courage to live by her example.

 

To laugh with abandon, love only those who earn it, and dance in the middle of the day whenever I feel like it.

Painting with Gracie on the weekend:


Playing on the Slide:


Helping Mommy cook dinner:

 

Laughing in the Playhouse with Poppa:


Playing with “Dr.” Flora in the Basement:


People are like stained – glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed, only if there is a light from within. 

Elisabeth Kubler-Ross 

Download PDF

Bitter and Sweet

Download PDF

 

Bitter and Sweet

 

Everything seems like it’s moving so quickly all of a sudden.  The seasons are changing once again, friends are switching jobs and people are pregnant or getting married.  Sam is growing more each day.  He is rolling over both ways now, and eating solids and smiling and playing with toys.  Warmer weather and daylight savings time have arrived, bringing longer days of sunshine and the first mornings where birds chirping outside the window wake us up.  Stella’s third birthday is in a month.  It’s exciting and terrifying all at the same time.  This landmark that no one thought she would ever be here for is looming in the future.  But, like so much else in our lives right now, it’s so bittersweet.

 

Aimee asked me last night if I thought we would ever be happy again.  It’s an interesting question.  It’s not that we haven’t felt happiness these last 8 1/2 months, it’s just that all happiness is tinged with a perversive sadness as well.  I had to think for awhile before answering, because the truth is I have no idea if I will ever feel true happiness again.  I think we will definitely have many moments in the future of being happy.  But feeling happy?  I think they are two different things. My best guess is that each joyful moment will come with a small shadow of wishing that Stella was there to experience it as well.   Every family vacation and holiday, every accomplishment in our lives, every celebration (big or small) that she should have been there for.  I imagine that eventually the shadow around your heart just becomes who you are and happiness and sadness cease to exist as separate entities and your new norm is to just accept that happiness and sadness are not mutually exclusive, but intertwined in one another.  Bitter and sweet.

 

The last couple of weeks, although Stella’s health is still physically declining, mentally and emotionally she has had a little rally.  She regained some of the sparkle in her eyes, and is suddenly willing to try lots of activities she hasn’t done in months.  We’ve been to Tim Horton’s, Starbucks, the park, the library, the ice cream store, Riverdale Farm, friends houses and our basement playroom.  With each thing she accomplished, Stella seemed to feel stronger and more willing to get out and rediscover all the things she used to love.  It has been the balm that Aimee and I needed to soothe our bruised hearts and give us the strength and energy to complete this last leg of Stella’s life.

 

As with many things that have happened during Stella’s illness, sometimes emotions take me completely by surprise.  Although I have loved seeing Stella get enthusiastic and happy about life again, it unexpectedly comes with an uneasy feeling I just can’t shake.  I think I figured it out this afternoon.  Seeing Stella like this— so happy to be playing in the park, painting, giggling with her friends, going out for family walks with Stella and Sam, is a sliver under my nail reminding me of everything we’re losing.  I gave up on the fantasies I used to have of Stella growing up, but when Aimee and I are at the park and the sun is shining and Sam is sitting in the baby swing and Stella is on my lap on the big swing, I can almost close my eyes and get lost in the fantasy that Stella isn’t going to die and that life can always be this good.  Then my eyes open and I see that Stella is slumped over in my lap, and I wonder if this is the last time for the rest of my life I will ever take Stella to the park again.  Each thing we do could be “the last”, and that is a very bittersweet way to live.  I guess this is true for everyone in the world, since everything can change in an instant, but I didn’t used to think like that…and now I can’t help it.

 

Anyone who has children out there probably can’t fathom losing theirs.  I never could either.  But it’s happening slowly and surely to us. And although I will be forever grateful for how long Stella has lived, and how well she has lived, I still mourn everyday for the daughter I will only get to be with for a short time.

 

Imagine that you had a cherubic, mischievous, energetic and moody two year old with flashing blue eyes, a brilliant chiclet smile and curly red hair.  Imagine that each morning she got you up at 5:15am by standing up in her crib and shouting, “Maaamaaa, I’m awaaaake!  Maaamaaa, where are you???”.  Imagine if when you went into her room she threw both her arms up towards you in a great big hug and chattered her way into the living room, telling you she wanted Cheerios for breakfast–with banana…and milk…and when is Auntie Heather coming…and can we paint now…and watch Caillou. Imagine if when you tried to get her dressed in the morning, she ran away from you laughing, no matter how exasperated you got.  Imagine if she insisted on picking out her own clothes and you let her rather than fight about it.  Imagine if she could sing the entire theme song to “Golden Girls“, could go down the slide by herself, could pee on the potty, catch a ball, dance and chase her friends.  Imagine when you step off the subway after work and walk into her daycare room, all the kids turn to look who has entered and when she sees you she flashes the most brilliant smile and comes running with her arms up, saying “Mama! Mama! Mama!”.   Imagine if no matter how many times she tantrumed and demanded things from you and exhausted you, she ended each night with a snuggle and a kiss and you breathed in the smell of her curls and felt warm happiness all over.  Imagine if you could never love anything as much as you loved your first born child, your dream come true, your daughter.

 

Now imagine it’s 9 months later.  Imagine she is lying next to you in your bed.  She can’t walk.  She can’t use her arms or hands.  She can’t hold her head up.  She can’t  see the television.  She can’t tell you she loves you.  She can’t hug you.  She is lying in the bed, sound asleep but coughing on her own saliva, which she is starting to choke on because she can barely swallow. Imagine she was dying and there was nothing you could do to change it.  Imagine if you knew that one day soon you would never get to see her again.  Never see her smile, feel her hand slip into yours, kiss her warm cheek, feel her sigh into your chest.

 

That is the simple reality of what Aimee and I are living with.  And it’s hard.  No matter how many good things happen to us, no matter how ecstatic we are to be taking Stella down the slide again, no matter how much we believe in a bright future for ourselves and a time of healing, we are being tortured.  No matter how well or easily we manage to get through the days, to talk with our friends, to laugh and joke and even fight sometimes, we are broken inside.  It’s a very strange way to live.  We need to not focus only on what we are losing, but on all we have gained, but despair creeps in nonetheless.  Every emotion feels magnified.  My thoughts— much like this post, are discombobulated.

 

A few weeks ago our Psychiatrist, in not so many words, instructed Aimee and I to get out there and “get a life”.  Meaning we need to start making plans for when Stella has died and we are left to pick up the pieces of our lives.  This involves slowly starting to do the things we love again, to fill some of the emptiness that will be left behind.  It means talking about going back to work and school, joining interest groups again, exercise classes, music class with Sam, etc.  It involves trying to be excited about what the next 5, 10, 15 years hold for us.  Making plans for the future.  A future without Stella.  It’s incredibly bittersweet.

 

What is keeping us moving forward right now, even when our hearts are completely broken, is watching how Stella has chosen to live her short life.  How she treats each day as a new adventure, pushes herself both physically and mentally to ensure that she accomplishes what she wants on that particular day.  Sometimes it’s something big— painting with her mouth and visiting the pigs at the farm.  And sometimes it’s just being able to mouth the words “ice cream” and then napping most of the day.  But she is always true to herself and even though things are hard for her, she ignores the barriers of DIPG and chooses to forge her own path.  But most importantly, Stella believes that when life gives you a hundred reasons to cry, you need to find a thousand reasons to smile.  And in my own smiles, I have become familiar with the bittersweet taste of getting to parent my precious Stella.  The best experience in the world, but like a Spring day much, much, too short.

Some of Stella’s adventures this last week…

At the park:

Giving Sam a bath:

Baking Cupcakes:

Showing off Brother/Sister shirts from our friend Susannah

 

Download PDF

Drive Towards The Sun (By: Aimee Bruner)

Download PDF

 

Drive Towards the Sun By: Aimee Bruner

 

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

 

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

 

….and we’re back.

 

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

 

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

 

Let that be a lesson to us all……..

 

 

…..and THANK YOU STELLA.

 

Driving Into The Sun:




The Sun…


 

Download PDF

Sam, Son

Download PDF

Sam, Son

 

Stella is stable again this week, which has come as a great relief to all of us.  Maybe it’s that the sun is finally shining.  Maybe it’s a change in the hydrocephalus circling around her brain.  But most likely, it just isn’t her time yet.  She seems to have her own plan, which she is unwilling to share.

I thought I would write a bit about Sam today.  So much of our focus is on Stella, but there is also this wonderful little boy who helps fill the holes in our hearts when we’re sad, and who is becoming his own person, in his own right.  Sam has been with us on every step of the journey with Stella, and though he is too young to understand what is going on around him, his presence is invaluable in keeping Aimee and I hopeful about the future and grateful for each and every day.

When Sam was conceived, he was supposed to be “it” as far as babies went.  Aimee and I always planned on having two kids.  We liked the symmetry of it, and we liked the idea of them being close in age.  I always joked that the most important thing was that if you had more than two children there would be more kids than window seats in the car, and we would lose every democratic vote our family had.  So two it was.

Aimee’s pregnancy with Sam was totally normal and healthy, and there was no one more excited than Stella to have a baby in our family.  We didn’t know it was a boy until 32 weeks along, so we taught Stella to say both the boy and girl name we has picked out.  It was cute to hear her say them and they were our family secret as Aimee and I don’t like revealing names ahead of time  We bought a bunch of books about being a big sister for Stella, and she got obsessed with us reading one called There’s Going To Be A Baby”.  It was double the fun when Auntie Heather revealed she was pregnant as well— and due the same week!  Stella named Autie’s baby “Gunga”, a name that stuck right until Xavier was born.  Stella kept insisting that the baby inside Mommy Aimee was a boy and that Stella would have a brother named Sam, just like in her favourite book series, Stella & Sam by Marie-Louise Gay.  “Sam” was not the name Aimee and I had picked out, but we humoured her and allowed her to refer to him that way in utero.

When Stella was diagnosed with DIPG, Aimee was 5 1/2 months pregnant.  We were not sure that Stella would ever get a chance to meet her sibling, and this is one of the things that made us saddest about losing her.  She was so involved in the pregnancy, so excited about the baby and we wanted her to get to see it through.  When Aimee was 32 weeks we decided to try to find out the sex of the baby, so that we could tell Stella more about him or her, in case they didn’t get to meet.  I was positive it was a boy all along and I was right!  For us, that seemed like a sign.  Stella wanted a brother named Sam, and we decided that was exactly what she would get (although his full name is Samson).  Sam is now 4 months old and Stella is a great big sister…most of the time.  The other times, she is a typical toddler trying to steal his toys, poke his eyes out and push him off our laps.

Right from the beginning, Sam was a lovely baby; much more relaxed than Stella ever was, and more easygoing as well.  He is also an excellent sleeper, which makes it easy to love him at 8am!

Whereas Stella was with me all day everyday for the better part of 9 months, from the very first day, raising Sam has been a group effort.  He is held, watched, changed, bathed, kissed, walked and fed by any number of people each day.  Right from the beginning, Sam was strong and he prefers to stand upright on his feet while you hold his hands as opposed to sitting or lying down.  He has a gorgeous smile with a dimple (no idea where that came from!), a smattering of what looks like brown hair on his head and dark blue eyes.  We sometimes try to guess if his hair will be curly like Aimee and Stella’s, or remain straight.  I wonder if his eyes will stay blue like his sisters, or if they will take on some of the beautiful green colour that Aimee’s eyes are.  He has recently started picking up toys to shove in his mouth.  Although I got rid of Stella’s baby clothes and toys when we found out she was sick (it was too sad to think about seeing someone else with them), there were a few baby toys I found in the attic that I dragged down, and Sam happily shoves them in his mouth and throws them, just like Stella used to.  He has learned to roll from front to back and is trying very hard to roll back to front as well.  He is alert, happy and predictable.

In the days and weeks leading up to Sam’s birth, I wondered if I would be able to love him the way I love Stella— or even if I would be able to love him at all.  I was worried that seeing a healthy baby born from Aimee’s womb would make me angry, because the baby that my body created ended up with this cancer.  I was scared that everything about him— his cries, feeding him, changing him, playing with him, would remind me of Stella and break my heart each and everyday.  I wondered if he would look like Stella (they have the same sperm donor) and if that would be too hard for me to bear— watching him grow up, while Stella didn’t get to.  I asked myself if each of Sam’s milestones in life such as first day of school, birthday parties, graduations, would make me think bitterly about how Stella should have been doing those things too.  I wondered if I would resent him.

I asked myself if my heart could trust the universe enough to love another child again… after it screwed me so royally the first time.

When I first laid eyes on Sam, it wasn’t love at first sight.  But it wasn’t love at first sight for me with Stella, either.  I learn to love people more slowly.  It’s been a mutual relationship with me and the kids— we needed to get to know one another a bit, establish a relationship of trust and respect and enjoyment.  Sam and I are still working on our mother-son bonding, but it’s been incredible to get to know this little person.

Sam is helping to heal me.  He reminds me to sing and smile and be silly even on days when I don’t want to open my eyes and face the morning.  He has allowed me return to some of my favourite “Stella” parks, and turned them from places where I cry uncontrollably, to places that I envision bringing him to as he grows up.  He has given me the strength to return to my mommies group and chat about teething and daycare.  Sam gives me a reason to leave the house and feel the air on my cheeks and the wind in my hair— to feel alive.  Sam demands that I love him for who he is, not because he is Stella’s little brother.  This is imperative to surviving Stella’s death.  Sam allows me glimpses into a time in the past when Aimee and I were ignorant to the realities of broken hearts and broken dreams.  He knows no limits, no cruelty, no fear.  Sam allows me to walk with a baby in a stroller and picture the future.  A future without Stella, but not without love or happiness.

I am excited to continue to learn about my son.  To love him for who he is, and to watch him discover the world.  I will teach him about his sister, but I will not raise him to live in her shadow.  Even if we had 1000 children, we could never replace our Stella, but we would never try to.  “Samson” means sun, and I am positive that he will bring light and brightness to us as he grows up and act as a constant reminder that each life, no matter how fragile or brief, forever changes the world.

Sam, my son.  Sam, son.  Samson.

Sam’s First Day Home, October 2011

 

Stella and Sam

Little Man

Stella at 4 months

Sam at 4 months

 

Download PDF