Parenting for Keeps

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Parenting Stella after her DIPG diagnosis was hard in the obvious way of being totally heartbreaking as we watched our child slowly die, but in another way it was extremely easy.  Fairly soon after her diagnosis, Aimee and I adopted the “Whatever Stella wants, Stella gets” mantra of parenting.  I’m sure it’s every 2-year olds dream to demand whatever they want like a mini-dictator and have every adult in hearing distance go running to make every dream come true.  I remember once morning at 6:45am, Stella requested cupcakes for breakfast and we were all out.  My dad (“Poppa”), heard her and hopped right into his car and drove to the 24-hour supermarket down the street, returning with cupcakes within minutes of her request.  That first fall after her diagnosis, we literally watched 13 hours of Dora the Explorer each day.  Sitting on the couch, bodies aching, eyes burning from watching the television, we dared not turn off Dora or suggest anything else because this was what Stella wanted.  DeeDee bought her every piece of clothing you can imagine that had Dora on it; pants, pyjamas, socks, shirts.  When she showed an interest in reading things you could see or feel, GrandPa and Nanny Sandy bought her every single children’s book Indigo carried that had any kind of pop-up, or textured page.  In winter when Starbucks came out with a “Holiday Sandwich” Stella liked with stuffing and cranberries in it, Tutu would go to multiple Starbucks in a day trying to find one that still had the seasonal sandwich in stock.

 “You want 16 chocolate Timbits, Stella? Sure”.

“You want to sleep in bed with your mommies every night? Absolutely!”

“You want to go to the zoo this morning and then the farm this afternoon?  Of course!”

“You don’t want to brush your teeth?  Fine”.

“You want to read 2 hours of bedtime stories?  Happy to”.

“Ice cream for breakfast?  Everyday, my love”.

We just did anything and everything she wanted.  Nobody worked.  Nobody needed to cook (our friends and family literally fed us for 18 months).  Nobody had anything else to do other than play with Stella and give her everything and anything she wanted.  She sat on that couch and gave orders like the Royalty she thought she was, and we just followed orders all the while doing funny voices and ridiculous dances.  With no need to think of the consequences of what doing everything your 2-year old tells you to do, Aimee and I just enjoyed watching her glow with light and joy.

But parenting Sam and Hugo is different.  Sam is older now than the age that Stella was when she was diagnosed (he’s 28 months), and Hugo is 18 months.  They test us.  They push us.  They demand things constantly.  And I’m having trouble figuring out how to parent for keeps— how to balance the need we all have to instill discipline and boundaries, while still giving enough to ensure Stella’s lessons of fun and love are our guiding principles.

After you lose a child, you know how quickly a small, beautiful little life can be ripped from your arms.  It makes sense to take nothing for granted and to waste no moment.  It’s a goal to try to speak calmly to the boys no matter what is going on and to create fun and beautiful memories with them. But at the same time, I can’t just parent with complete indulgence…with a total lack of discipline and no use of the word “no”…but I want to. I want to because parenting Stella became so much more fun and happy when I did that.  But we were only going to have her for a short while, so the long-term effects of this extremely permissive parenting, were not an issue.  So, I struggle.  I give in to the boys a lot.  And recently, I’ve noticed that, in some cases, my boys are becoming unruly.

When Sam calls to me at 4am and asks me to lie with him in the bed, I know I shouldn’t.  I know it’s better for him and better for my sleep if he learns to just put himself down.  But when he wraps his tiny toddler arms around my neck and pulls me in for a cuddle, I want to freeze time.  I think about how soon it will be that he’s saying, “Mo-om!” and rolling his eyes and doesn’t want me anywhere near him.

Sometimes my arms ache from carrying Hugo around all the time.  He wants to be held constantly.  It makes it hard to cook, eat, fold, clean, etc.  I should just put him down…I’m spoiling him.  But how much longer will he want to be holding on?  Soon enough, he’ll be pushing me away.

I want to give them everything they want…cookies…staying up past bedtime to read books in bed…sips of my ginger ale…hooky days from daycare.  But I know I shouldn’t, and can’t.

I watched Sam and Hugo this morning, both totally naked, leaping from the couch to the pillows they had thrown on the ground.  They were laughing and shouting and climbing.  They had never looked more like wild monkey’s to me.  I kept saying, “Samson…don’t stand on the couch”, “Hugo, no jumping on Sam”, “Sam and Hugo, please be careful!”.  If they heard me at all, they didn’t show it.  They threw toys and spilt milk and knocked over the side table and then Sam peed on the floor.  They were wild and I couldn’t control them.

I knew the lack of discipline I’ve been giving my boys was serious when I worked a funeral on the weekend (as part of my school program for becoming a licensed Funeral Director), and I was in constant awe of the fact that when I gave people directions at the funeral, they actually listened to me.  It had been so long since that happened!  I said, “please come to the visitation room if you haven’t paid your final respects” and an entire room full of people got up and went to see their loved one next door.  I was actually stunned for a moment that anyone paid attention, and then I felt completely elated.

I had spent 20 minutes that same morning chasing Sam around with a pair of socks, trying to get him to put them on.

Let me tell you…being elated that a group of people at a funeral followed the simple directions of their Funeral Director is not a good sign of my expectations of people.

 

So, how do you do this?  How do you parent a child as though you’re going to get to keep them and send them into adulthood?  What is the magic recipe for fun/freedom/self-expression vs. control/safety/discipline?

I have no idea.  I’m getting quite used to being clueless when it comes to parenting.  It doesn’t scare me too much anymore that I have no idea what I’m doing.  Some days it’s just about surviving.  Some days it’s about creating memories.  Some days it’s easy and some days I just want to pluck my eyebrows out one hair at a time because I think it would be less painful and tedious than parenting.  Mostly, I just work hard each day and do the best I can.  Some days I kick ass.  Some days I get my ass kicked.  But everyday, I make sure I tell my kids that I love them.  I hope that’s enough to get us all through the rough patches, and I hope they remember that when I have to do and say things that they don’t understand, and don’t like.

Tonight getting ready for bed, both boys sat happily in my lap and pressed their soft cheeks into my neck as I read stories.  I inhaled the smell of baby shampoo and watched their eyes dance and widen as the “tickle monster” made an appearance.  Tonight the boys didn’t seem to care if I was good or bad at parenting, they just cared that I wrapped them tightly in towels after bath so they didn’t get too cold, cared that I sang a song while they brushed their teeth and cared that I knew exactly where Spot was hiding during story time.

All three of my kids are totally different.  They grow, they change, and the way I parent them changes.  I change.  Stella, Sam and Hugo have all shown me new things to find joy in, and new ways to look at the world.

There is a saying that says, “Children learn what they live”.  If this is true, no matter what happens as we continue this great unknown parenting journey, Hugo and Sam will learn three things for sure: love, joy and chocolate timbits.

For today, that’s enough.

A picture perfect family…NOT!  (Photo by Heather Pollock):

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Even sitting still for a picture is impossible! 

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 Playtime! (Hugo is wearing Stella’s old pyjamas):

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Colouring on the paper is optional (Stella’s rule that Sam follows):

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Couch cuddles:

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Stella, June 2011:

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Thanksgiving

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Thanksgiving

You know, thanksgiving has always been one of my favourite holidays. Not only do you have the benefit of what most holidays consist of (family and good food), but there is no gift-giving or bizarre rituals you are expected to do in return. You just eat and visit.

This Thanksgiving, Aimee and I took the boys up to our beloved BlueBird Cottage. The weather up there was nothing short of phenomenal. Golden sunlight and warmth highlighted long days of play and visiting as we spent time with Poppa, neighbor Ken, Flora’s family, Tutu, Gracie, Auntie Angie and Juju, Aimee’s great Aunt Arlene and great Uncle Frank. All weekend people came and went, filling our days with conversation and friendship.

After a busy few days, on the holiday Monday at 9am, Auntie Juju and I took Hugo, Sam and Gracie for what should have been a 20 minute walk into the nearest town. We were gone for over two hours. As the kids began the walk, they were constantly being distracted by things in nature. Bullrushes that had exploded into big balls of cotton proved to be an endless source of entertainment as Sam and Gracie ran up the road shaking them and filling the air with cottony fluff that landed on our hair, clothes, stroller and faces. That game lasted quite awhile! Then they discovered a series of mud puddles that splashed big waves of greyish guck on their pants when they took a running jump at them. There was a dead snake that caught Gracie’s eye, and a dead frog Sam insisted was sleeping. We noted tree roots and looked at birds and flowers. Julia and I just strolled along, enjoying seeing life from our children’s eyes as each rock they picked up was declared more beautiful than the rest and each leaf more perfect. Eventually, we ended up at a local antique store that was closing down and Gracie and Sam each bought a wooden wagon for $5 that they then insisted on pulling all the way back home as Hugo toddled along behind them. They stopped continuously to make adjustments to their wagons, fill them with items, get them unstuck from rocks and roots. It was slow progress, but so refreshing to, for once, have nowhere to rush to and nothing particular to get done. It reminded Julia and I of the old days with Stella when the only goal was to fill her days with joy and wonderment. As much as we try, the demands of everyday life generally make it impossible to be leisurely anymore and so moments like this where dawdling and enjoying the small gifts of life are more precious then ever before.

Back at the cottage, Gracie jumped into a huge pile of raked leaves, followed closely by Sam and Hugo. As they frolicked on the grass, running and rolling in the bright colours, I thought about how this was a picture-perfect moment, right down to the sun glinting off the lakes and the echoes of unbridled laughter dancing across the crunching leaves. The moment I felt that sense of pure bliss, I also felt my heart constrict and my eyes begin to burn with unshed tears. Here, in a moment where I felt lightest and happiest, my heart broke yet again as I wished that Stella were there with us. I cleared my throat and tried to push the thoughts away. Not because I don’t want to give grief its space in my life, but because I knew that Stella would have encouraged me to focus on the present moment and the joy in front of me, not the sadness inside me. I reflected on the fact that already Sam and Hugo are growing up so fast. It won’t be long before neither one of them turns to me with their arms outstretched and a huge grin each time I walk into the room. It won’t be long before our cuddles and kisses get fewer and further in between. It won’t be long before they become their own people and start to move away physically, emotionally. I can hardly believe that Sam will be turning two this weekend, and shortly after that we will mark the one-year anniversary of Stella’s death.

Speaking of Stella, many people have been asking us what we have planned for that day— if there will be a public celebration or party of some sort. Aimee and I have talked a lot about it and decided that she and I are going to spend the morning together, just the two of us, the way it once was before kids, before DIPG, before all the lessons on life and loss. We will sit on Stella’s couch by ourselves with the door locked and eat Timbits and ice cream. We will light our special Stella candle and let the flame flicker for 24 hours straight. We will watch episodes of the Golden Girls and wait for the waves of sadness to splash against us as we huddle together against the storm of tears and rage that we feel will come. At some point in the day we will likely end up at Riverdale Farm and leave little trinkets by her tree, but we’re not really sure.

As for people who have been telling me they feel they want to mark the day, we were thinking that the best thing to do would be to create your own ritual or tradition. One of the things that I kept thinking as this day approached was that if we had a public memorial this year, would we have another one next year? What about the year after? And as so many people who have walked this journey before have told us, as the years go by and changes occur, less and less people tend to come to these public memorials and/or events. Things change. People move and grow and fade away. There’s a saying in the world of bereaved parents, “where did all the people go?”. I just can’t stand the thought of seeing 100 people come out to honour Stella one year and only 7 people five years later. Even though it’s not what it means, it would feel like people had forgotten or didn’t care anymore and I’m afraid that would hurt more than I’m prepared to deal with right now.

So, instead of anything formalized or public, we are telling people that if they feel it’s important to mark the day Stella died, they should start their own tradition. For example, our friends Caitlin and Natalie have told us that they will be having ice cream for breakfast on Tuesday morning, and plan to do this every October 22nd no matter where in the world they are. Another friend told me they will surprise their kids by picking them up early from school and heading to Chuck-E-Cheese for a “fun night” that they hope will become an annual tradition. Others may choose to light a candle, eat ice cream for breakfast, visit Riverdale Farm, pick up chocolate timbits after work, eat copious amounts of avocados, hit a friend for no reason, watch Golden Girls or throw a birthday party for someone when it isn’t their real birthday. The idea would be for other people to create meaning in their own lives in honour of Stella. Something that becomes meaningful and special for you personally, that 12 years from now you can say to someone, “Oh, we always have Dairy Queen on October 22nd, it’s tradition”. And when you’re asked why, you can tell them about Stella. And if you or your family does end up doing something on October 22nd for Stella, please feel free to snap a picture and send it to us. I’d love to post a bunch of photos on the blog of people honouring Stella in their own way (you can email to stella@stellabrunermethven.com).

Life moves so quickly. It feels like we’re always waiting. Waiting to get a job, find a partner, get a house. Waiting for the pregnancy to be over, then the teething, sleeping through the night. Waiting for everyone to grow up and move forward. With Stella we were constantly waiting for the next phase. For her next progression, for the day of her death. Waiting for the funeral we had planned, the cremation garden plaque we ordered. Waiting for the fear and pain to subside. But this thanksgiving, I was grateful for the opportunity to realize that I wasn’t waiting for anything in particular. I was just spending time outside with my friends and family, honouring my daughter by finding the Joy, living in the now and appreciating the thousands of things I had to be thankful for. The first on my list, of course, was the chance to be- forever- Stella’s Mama.

Things to be thankful for…

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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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Butterfly

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Butterfly

 

First of all, Aimee and I would like to thank everyone for their heartfelt wishes and for sharing our excitement and joy about the upcoming birth of our third child in a few months.  There were, as expected, some people who posted negative and/or derogatory comments that were meant to be hurtful, but luckily we have the best web team in town (we heart Jeremy and Karen), who immediately removed any negative comments in order to preserve this website as a place of friendship and positivity.

 

One of the interesting things for me with this pregnancy has been to experience the miracle of a baby growing inside me— getting bigger, and kicking and rolling to let me know how alive he is inside—at the exact same time that I watch the other baby who grew in my tummy struggle to do even the most basic things.  We never dreamed when we inseminated in the fall that Stella would still be alive 6 months later, and never imagined trying to cope with the realities of life and death each and every day.  But here we are balancing Stella’s morphine, zofran, atropine and phenobarb, Sam’s foray into solid foods, Aimee’s breastfeeding tea, and my anti-depressant and prenatal pills.  A mixture of life and death all living together in harmony with no concept of where either of them are at any given time.

 

Funny thing about death— I never thought about it much before, but now I think it, feel it, talk about it every single day.  Before this horrible cancer hit my family, death was something that happened to old and sick people.  My grand-parents have all died in the last 16 years of my life, but they ranged in ages 74-94 so…well, I always felt like they were supposed to die because they were old.  And I would read about other peoples children dying and I would feel sad for a minute or two but, you know how it is, you turn the page of the newspaper and get caught up in the newest Brangelina news, and it goes right out of your head.  How I long for those days of ignorant distractions.

 

But now death is on my radar permanently.  It’s in my head and my heart and my line of vision.

 

I still sometimes look at my beautiful daughter, he lips perfect and pink, her hair flowing around her head, her porcelain skin almost luminescent, her smile as bright as the noon sun… and I shake my head that she is dying.  How can I possibly prepare to say goodbye forever to this girl who owns a huge piece of my heart?  And I often wonder when people come to visit us, when they see her sitting on my lap and she’s all warm and so very ALIVE…I wonder if they leave and think about how one day soon she will be gone from us forever.  Gone from our lives, never to be seen, heard, touched ever again.  Ever.  These thoughts haunt my nights.

 

In 20 days it will be 11 months since Stella was diagnosed with a DIPG tumour.  In so many ways, we can’t believe it’s been that long, but in many ways it also feels like we’ve lived 25 lifetimes since then.

 

Aimee and I have spent the last several weeks trying to organize all the videos we have of Stella.  It’s completely bizarre to literally watch with your very own eyes the disintegration of your child from active, talkative, bright-eyed toddler to someone who sits on the couch for hours at a time, eyes unseeing, head unable to look up, voice silenced by cancer.  On the good days we can watch the videos and laugh at our daughter’s antics.  On the bad days we sit and cry, stunned into silence by how much Stella has endured these last months and how much our friends and family have suffered as we all try to continue smiling, even though we are all witness to something horrible happening to our beloved Stella.  She may not be suffering, which is our only hope, but those of us who love her sure are.

 

All these jumbled thoughts came to a head a few days ago when Aimee, Sam, Stella, Auntie Angie, Auntie Juju, Gracie and I went to the butterfly conservatory in Niagara Falls.  It was a great trip, and despite Stella being exhausted for much of it, she smiled lots and we know she had a great time.

 

At the butterfly conservatory, I thought about the well-known cultural myths associated with butterflies as a symbol of transformation.  The metamorphosis of a butterfly really is miraculous when you fully comprehend the massive amount of transition that it undergoes from egg to caterpillar to cocoon until it finally unfurls into a fluttering, glorious flash of colour and energy.  It made me think about how our lives—all of us— have changed in much the same way.  Life has changed to such an extreme that Stella, Aimee and I are completely unrecognizable.  The life of a caterpillar wrapped in its cocoon versus a butterfly.

 

In Niagara Falls, one special butterfly came to Stella and seemed to want to stay with her forever.  It occurred to me that this insect nuzzling Stella’s cheek illustrated perfectly the deepest symbolic lesson of the butterfly.  A butterfly has to learn to recognize the changes in its life and body casually and unquestioningly, just as Stella has done.  A butterfly must have an unwavering acceptance of its journey, although it may at times be scary and dip into the great realm of the unknown.  The butterfly surrenders itself to metamorphosis, it believes wholeheartedly that the transitions and changes in its life will all lead to the right place, and fighting against changes is useless.  The butterfly reminds us that we ALL need to have faith in the journey, just as Stella seems to.

 

Since being at the Butterfly Conservatory, I’ve started to see butterflies everywhere we go.  They seem to come out of nowhere and flit around our heads, then disappear into the sky or the bushes nearby.    Each time I see one, I remind myself that we are all in the middle of a great metamorphosis, and our greatest responsibility is to accept the changes that come our way and have faith that, in the end, we will emerge into the people we have the potential to be.  But until then, the journey is our only guarantee.

A special butterfly for a special girl:


Stella delighted at the butterfly that landed on her stroller (left side):


Gracie and Stella, cousins and besties!


Great Wolf Lodge!


Great Wolf Lodge Waterpark:


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Fumbling Towards the Future

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Fumbling Towards the Future

One of the comments that Aimee and I get most often is how strong we must be to be living and laughing despite the slow death of our beloved oldest child, Stella.  People ask us how we do it.  The easy answer is that we have no choice, but the longer answer is that having Stella and Sam to look after forces us to start each day.  If we didn’t have them, we would have no reason to get out of bed, no reason to eat breakfast, no reason to force ourselves to act funny and crazy just to get them to smile, no reason to put one foot in front of the other day after day, week after week, month after month.  I often think that having Sam has been such a miracle because, after Stella dies, if not for him, I’m not sure that I would ever bother getting up out of bed or leaving the house again, as I’m certain the pain is going to be absolutely unbearable.  Sam reminds me that even though things feel bleak right now, Aimee and I do have a future together, and a family full of joy that we have lovingly crafted and worked so hard for.  I don’t want to imagine my life without Stella.  It makes my chest hurt, it makes my stomach sick, it makes my jaw clench.  But I don’t have the luxury of tricking myself into thinking Stella will be here forever.  Each day that goes by is another day closer to when she will be gone forever.  It’s a maddening way to live—trying to appreciate the present, and still make plans for the future.

When Stella first got diagnosed, time seemed to stop.  I remember the calendar for July 2011 which had once been full of play dates, school assignments, and dates, was suddenly wiped blank.  Aimee and I were afraid to plan anything in advance.  How could we when we didn’t know what was going to happen to our daughter, and when it was going to happen and how.  We stopped work immediately, both dropped out of our respective school programs, cancelled every single thing we had planned for three months.  But once the shock had started to wear off a bit, once the weather turned a bit colder and the seasons changed, we realized that other people’s lives had started to go on and ours had to as well.  Our son was due at the end of October, and we needed to plan for him…to buy clothes, set up the nursery, assume that he and Stella would get to meet.  It was difficult to do at first, but marked our re-entry into the community we so loved and needed.  Slowly, intentionally, we started to put things on our calendar once again.

One of the hardest things for me to do was go out in public with Sam.  At first it was so hard to be out with Sam and not Stella, that I literally ran from areas where I thought I might know someone.  I cried the first dozen times I walked by the park Stella and I used to go to after daycare.  I bawled the first three times I took Sam to the library Stella used to run around in.  I wanted to kick the tire of every car I passed on my way to the first moms group I attended without Stella.  And when I joined Rainbow Songs a few weeks ago, which I also did with Stella when she was 6 months old, I had to escape to the bathroom for an impromptu cry when everyone sang, “You Are My Sunshine” the very first week (seriously—think of the lyrics, what a sad and horrible song).  But the unexpected bonus of forcing myself to do these things has been small moments of normalcy that creep into an extremely abnormal reality.  There is an inside and outside world, and Aimee and I have been trying to teach ourselves how to live honestly and fully in both of them.  But it’s not always easy.

Even now, whenever I go out I wonder if people are judging me.  I wonder if the people who know about Stella, watch me drinking a Starbucks pushing Sam in the stroller and chatting on the phone and think I’ve forgotten about Stella.  Or, if I have Stella with me, I wonder if people are staring at her and trying to guess what is “wrong”.  Most often, when strangers see me lifting her onto the slide like a rag doll they make a comment about how tired she must be.  And in every conversation with a stranger regarding Stella, there’s a split second when I have to decide whether to just smile and not continue talking, or tell them what’s really going on and then brace myself for the myriad of reactions from shock and pity to discomfort and silence. But I am keenly aware that no matter what someone’s reaction and feelings are, they get to go back to their “normal” life and Stella and I become just a fleeting thought for them, whereas Aimee and I live and breathe it every moment of every day. So I try not to care too much what other people think.

Parenting Stella through her cancer over the last 10 months has had many unexpected lessons.  One of them is that Aimee and I have needed to stretch to the limit our understanding of what parenting is, what it entails, what it’s overall goal is.  And we’ve needed to redefine ourselves, our lives, our expectations, plans and vision of the future.  Even though our lives are nothing that we ever could have even come close to imagining, we’ve realized that parenting is not something that leaves you, even if your style has to change and even if the journey is not as you imagined it would be.  Like it or not, Aimee and I are parents 100% of the time.  We still want Stella to eat healthily and so take the time to blend up broccoli for her, along with the ice cream.  We still want Sam to learn how to put himself to sleep and nap in his crib, so have conversations about sleep training.  We still try to remind Stella about “please” and “thank-you”, even though she can’t say them anymore.  And most of all, even though our dreams have been irreparably fractured, we still want to have the family we once dreamed of.

From the time Aimee and I talked about having children, we always said we wanted two.  Two felt manageable, two felt familiar (Aimee had one sister and I only had one sister until I was 16 and my brother was born), two felt perfect.  We always assumed we’d have two boys.  I’m not sure why, but that’s what we always talked about.  While I was pregnant with Stella, we decided our sons names would be Evan and Finn or Evan and Owen.  We didn’t find out the sex of our baby, so when Stella was born— a perfect package of red-headed, screaming, fury— and most definitely girl, we were a bit shocked.  But we adjusted and were absolutely tickled with our red-headed imp.  Then, when Aimee got pregnant just under two years later, we thought our dreams and our family were complete.

But, as you know, the universe had other plans for us and our family of four.

Even if not everyone vocalizes it, I know people want to know if Aimee and I plan on having another child.  There is an overall feeling that having another baby will somehow help us heal from losing Stella, that it will “replace” her in some way.  But the truth is, we could have 15 children, children who look just like Stella and act just like her, and they still wouldn’t be Stella.  You can’t replace a child that you lost and you can’t cancel out the agonizing grief of the death of one child with the birth of another.  No one is more aware of this than us.

Yet, Aimee and I couldn’t let go of the vision we had of our child having a sibling.  It took a lot of tears, and time, but we’ve finally accepted that Sam and Stella are not going to get to grow up together, they are not going to be the two children that we raise to adulthood and take to soccer practice together, and teach how to swim at a cottage and ground when they cut each other’s hair into a mohawk.  That dream will never happen, no matter how much we wish it.  If we wanted two children, we would have to do something active to get that dream, because we were not going to get to keep Stella.

So, one month after Sam was born, Aimee and I decided to try to do an intrauterine insemination one time with the same donor sperm as we used for Stella and Sam.  It was a crazy time in our lives.  Stella was declining rapidly in the fall, Aimee was completely incapacitated due to her pelvic injury, we were living off of donation money, had volunteers sleeping on a mattress in our living room to help with Sam, and were eating off of the generosity of friends almost every night.  We felt like we needed something happy to distract us from the chaos and stress of our everyday lives.  We weren’t in a place where we could seriously think about having another child, we just needed something to look forward to, something positive to focus on.  We decided to leave it up to the universe.  If we were meant to have another child— this child— it would be, and if not, not.

We inseminated on Remembrance Day.  I went by myself because Aimee was still too injured, was in and out of the clinic within an hour, and headed home on the subway as casually as if I’d just taken a book out of the library.

Two weeks later, we got the news we were pregnant.  Ironically, we got the news the same day we finalized the $12,000 payment for Stella’s funeral and burial plot.  What a strange day that was.

Aimee and I were excited…and terrified.  We already knew firsthand how little control we have over life when it comes right down to it.  We knew that this pregnancy would be emotionally complicated, and that more than likely I would be carrying this child when our first-born died.  It was a different feeling, a different type of pregnancy.  We were sometimes afraid to be too happy, there was trepidation and fear about being judged as completely insane, even by our closest friends and family.  But what kept us from drowning in all these complicated emotions was the knowledge that we have so much incredible love, and have gained so much knowledge as parents, and we want to share it.  We want our future.

So… we are proud and pleased to let everyone know that we are due with our third child this August.

We do not expect Sam or this baby to temper the horrific pain and sadness of losing Stella in such a painful and unfair way.  But we do expect any children we have to benefit from the lavish amounts of love we have to give, and to bring light on the days when all we see is darkness.

Over the last few months Aimee and I have slowly begun revealing our news to friends and family.  We are aware that some people might think it is a mistake.  Everyone is entitled to their own opinion, but we are confident that we made the right decision for us, and are excited to bring another child into our incredible family and community of friends.  Stella is very happy about the new baby and likes to kiss my belly and put her hand on it while she falls asleep.  We love that she is so thrilled at the prospect of another baby in the family, and hope feverently that maybe…just maybe…she might be able to meet this one as well.  But no matter what, she loves him already.  Oh yeah— it’s another boy!

This is a time of great emotional upheaval, but also of healing and hope for the future.  We may not know exactly what our future will look like, but we are certain that it will be full of light, love and laughter…because those are the parts of Stella we will carry with us always and forever.

For life and death are one, even as the river and the sea are one – Khalil Gibran

Stella is delighted with her new sibling to be!


Saying “hello” to the baby we have been referring to as “Flick”.  Short for flicker of hope…and flick for how active he is!:

 Stella waking up from a nap…check out that hair!!!"/

 

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