Distance

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Distance

 

August is ending, and there is a sense of anticipation in the air as people rush around preparing for school to start next week, as they try to cram one more cottage weekend into the summer, as they pull out sweaters to ward off the chill from the late summer evenings.

 

Things are changing at our house too.  Just like the season is beginning to change again, so is Stella.

 

She has been sleeping off and on for the last nine days and struggled with fevers and constipation.  Today, she hasn’t woken up at all yet.  She is no longer eating and has had only small sips of milk and a few spoonfuls of ice in the last few days.  Her body is still here, but I fear she is already somewhere far, far away.

 

Although Stella has scared us several times in the last 14 months, each time Aimee and I braced ourselves for the worst only to have Stella bounce back, this time is different.  We are not naïve.  We know that without food or water Stella won’t live very much longer.   We called our families today and told them that we feel it is time for them to start coming, to gather together to create a nest of warmth and peace for Stella.

 

Is it possible that Stella will come out of this and bless us with more smiles, more memories and more time?  Of course.  Anything is possible.  But the odds are not good.  She is so thin that her clothes fall off her so I put her in Sam’s old shorts this morning…shorts for a 6-month old.  She is dehydrated so the urine in her diaper is so concentrated it’s almost brown, and only the size of a twoonie.  Her body knows it doesn’t need food anymore, so it doesn’t allow her to open her mouth to take any in.  Yet despite all of this, Stella is resting peacefully like a lovely angel on her couch, pain-free and as delicate and beautiful as a spring flower-petal newly opened to the sun.

 

The great chasm of distance has begun between Stella and us…Stella and you…Stella and this world.

 

I was thinking today as I held her limp body on my lap how the idea of distance is almost a foreign concept with today’s connected world.  Someone on the other side of the world can look and feel like they are right there thanks to the advent of skype.  People can see exactly what you are doing at the time you are doing it thanks to cell phones, twitter accounts, facebook.  There is a sense that we are always connected, always aware of what’s going on which makes distance feel almost non-existent.  But the one place where there is a huge distance is between the living and the dead.  It is much trickier to navigate the realities of not having someone around when you want them to be there and when you need them to be there.

 

Distance is not for those who fear it, it is only for those who are brave enough to spend a lot of time missing someone in exchange for a spending little time loving them.  It’s about being present to a good thing, even if that goodness is temporary.  It’s about realizing that the only thing that truly bridges distance is love.

 

And so, with not much more left that Aimee and I can offer Stella right now, we have refocused our efforts on reassuring her.  All day today we took turns holding her and whispering in her ears that she is safe, she is treasured, she is loved. We tell her she is our girl, and remind her of how special she is.  This afternoon as she slept, I curled up next to her on the couch and held her frail body as close as I could.  Her bony shoulder became a pillow for my head, her warm neck caught my tears, her skinny legs slung across my hips anchored me to the moment, and her breaths fanned my eyelashes, reminding me to take everything just one moment and one breath at a time.

 

Right now, we just watch and wait and stroke Stella’s hair and memorize each part of her face and listen to the rain pound on the windows.  We just hold each other and focus on emotional closeness, even as physical distance closes in on us.

 

Tonight as we go to sleep, we ask that

 

If you believe, please believe we will make it through this.

 

If you light candles, please light a candle to brighten the darkness that is to come.

 

If you pray, please pray for Stella’ comfort.

 

If you are lucky enough to love someone, tell them they are loved.

 

Gracie and Stella watch Cinderella together (Sunday August 19th):

Aimee, Stella and Sam go to Thunder Beach for the day (Saturday August 25th):


The three kids at Riverdale Farm—only Sam was awake for the trip, but it was fun nonetheless!— Sunday August 26th:

Good night sweet girl (Taken tonight, Monday August 27th):


 

 

 

 

 

 

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The Witch Within

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The Witch Within

Sometimes I think that people read this blog, or come visit Aimee and I at home and think that we are really nice, good people.  And for the most part, we are.  But it would be dishonest to pretend that we were in any way, shape or form, perfect or special or exceptional.  We are as normal and boring as two people can be.  We fold laundry while Ellen DeGeneres interviews stars in the backround on our TV, we read the newspaper and comment to each other on the stories, we compare the price of chicken at Loblaws versus Sobey’s in the flyers, we get tired, hot, irritated, lonely, scared and angry sometimes. We bicker about inconsequential things like who didn’t put the lid of the garbage on properly (because the raccoons  spill it all over the place), we sometimes make mistakes with the kids (FYI— Threatening a 2-year old with a “time out” is fairly pointless when they adore time-outs), we forget to write thank-you notes,  we nag our parents, we own too many pairs of shoes, don’t always recycle properly and sometimes we don’t answer the phone because we just don’t feel like it.  We are not characters in a book or a movie.  We are real and complex and flawed human beings.

 

Stella has been sick again this week.  Aimee and I have walked this road before— the one where we wait breathlessly to see if our beloved daughter will “bounce back” and be with us a little while longer.  All the while we worry that “this is it” knowing full well that one of these times—maybe this time, will be “it” and we are on the cusp of the greatest heartbreak of our lives.  I keep thinking that my heart can’t stand anymore pain and then I am forced to accept another reality about something Stella has lost.  Now she can barely make any sounds at all—not even the whispered “couch” that she could manage until a month ago or the “nooooo” that she hung on to until just this week.  She has zero muscle tone in any part of her body anymore, so her head is even more delicate than Hugo’s.  Even sticking her tongue out for “yes” doesn’t always work anymore and when she needs hydration, we hand feed her small chips of ice one at a time tediously.  Stella needs to be cradled just like a newborn, but sadly Hugo is already, at two weeks old, stronger than she is.  She looks up at us with her big blue eyes, but communication is pretty non-existent now, and a day or two can go by with no smiles at all from our girl.  A year ago I wrote a blog post about the fact that Stella wasn’t dying of a brain tumor, she was living with a brain tumor. But I would say that has changed now.  She sleeps two-thirds of the day.  She is pale and skinny.  She has so much spirit in her, but it is harder and harder to see.  She is dying now.  I’m sure of it.  She may still be on this earth for many more weeks, even months, but she is dying.  I can see it in the way her skin is losing its colour, her eyes are losing their brightness, her smile is losing its strength.

 

Perhaps because Stella has had a rough week, I am feeling more sensitive than usual about our situation.  Recently someone who was one of my best friends emailed me (she doesn’t read the blog so don’t worry—I’m not insulting her in public!!!) to share that she felt I wasn’t being a good enough friend to her because I haven’t been very good at staying in touch and she was unaware that I was even pregnant and just heard about the birth of Hugo through the grapevine.  This is where my imperfections as a human being really shine through—I was immediately livid.  I felt so defensive and upset about what she was insinuating so I shot off an email reminding her that while she is at home cuddling her two year old daughter and tucking her into bed, I am at home sitting for 16 hours on the couch giving my 3-year old morphine , squeezing milk into her mouth one mouthful at a time, and waiting for her to die.   I was so angry at the insinuation that I wasn’t trying hard enough.  The truth is—I have let most of my friendships slide this year.  I have been operating under the impression that the people who are my real friends will forgive me stepping back from social niceties and activities while I focus on my family and my own mental health. My family is who needs me the most…and  I need to be with them too.  But still, it is a reminder that I’m not perfect and haven’t always been present or available to some people who are important to me in the last year or so.

 

I am often overly sensitive when people look at Stella or make assumptions about her.  A few weeks ago we were at the zoo and decided to take Stella on the Merry-Go-Round.  We asked if she wanted to go and she stuck her tongue out for “yes”.  When the ride first started, Stella flashed a brilliant smile but then reverted back to her neutral look for the rest of the ride.  Aimee was holding her in a plastic snake seat that didn’t move.  Obviously, because Stella has absolutely no muscle tone left, Aimee was having to hold her head up with one hand and support her body with the other, so Stella was in a semi-lying down position.  Her eyes are always half-closed nowadays, and her head was leaning back.  I was standing on the sidelines with Sam, snapping pictures of our girl when I heard a man behind me say loudly, “what a waste of money, that kid is sleeping on the ride!”.  I don’t know why that irritated me so much, but I turned around and said to him and his kids, “She’s not sleeping.  She has a brain tumor”.  Then I turned my back on him and continued taking pictures while he sat in silence and then got up with his kids and left.  I felt so angry in that moment, though I really didn’t have a reason to.  In times like that, I realize that I still carry so much anger in me about losing my Stella.  But it does make me feel better that other people are protective of Stella as well.  For example, one of my favourite Daniel stories (Auntie Heather’s partner) is when we were at Great Wolf Lodge a few weeks ago.  Stella was in the Lazy River with Auntie Heather when she pooed.  She only gets bowel movements every 3-4 days, and we have to pump her full of laxatives to get them out as she is often constipated (a side effect from her meds).  Anyhow, though she was wearing a swim diaper some of it leaked out into the pool.  Heather alerted the lifeguards who cleared out the lazy river and the waterslides that empty into it.  They called “pool fouling” and closed everything for 20 minutes while they cleaned all the pools. Daniel was outside having a cigarette and heard a loudmouth complaining to his kids that some stupid person had fouled the pool and now it was closed and he was grumbling about what a waste of his time/money it was.  Daniel turned to the guy and said in a very even voice.  “That girl is my niece.  She has a fatal brain tumor and is here on her Make A Wish Trip…….. think you can forgive her?”  The guy shut up immediately, mumbled and apology and walked off.

 

I don’t necessarily know why we all feel so protective…it’s unrealistic to assume people know what’s going on with Stella.  Every single time I take her out in public, anyone who comments on her always says, “Oh poor dear—shes’s so tired” because she always looks like she’s sleeping, even when she’s wide awake.  It irritates me.  Most of the time I just smile and agree that she’s tired, but once in awhile when I’m short on sleep and my heart aches too much to breathe I snap back with a quick, “She’s not tired.  She has cancer”.

 

The point is—Aimee and I are human beings.  Normal people who have been forced into an extraordinary situation.  Some days we are able to keep our perspective, be grateful for what we have and live our lives in a beautiful and open way.  But other days we are beaten and broken, life seems unfair and our words and actions are reflective of how shattered and scared we are.

 

So…

If I’ve insulted you, I’m sorry.

If I’ve snapped at you, I’m sorry.

If I’ve disappointed you, I’m sorry.

If I’ve hurt you, I’m sorry.

 

But I will never be sorry for how I have chosen to live my life that last 14 months, which is honestly, fully and with eyes wide open.

 

Stella and Poppa enjoy some time under her tree in the front yard:

Reading under the tree on a beautiful summer’s day:

Xavier and Sam, 10 months old already!

The three Bruner-Methven kids— Sam, Hugo and Stella:


Stella!


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Parenting Joy

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Parenting Joy

 

When I am feeling tired and overwhelmed and going through transitions, like the ones Aimee and I have experienced going from one sick child to three children in 10 months, it is not surprising that I’m feeling reflective.

Yesterday I was remembering that not too long after Stella was born, my mother handed me an article from her New York Magazine that was called “All Joy and No Fun: Why Parents Hate Parenting.”

You can find the whole thing here:  http://nymag.com/news/features/67024/

 

Basically, the article cites a whole bunch of academic papers from recent years that show having children negatively impacts feelings of happiness for adults.  Moreover, research cited in the article shows that the more children you have, the less happy you are.

 

I remember reading it back when Stella was a baby, but it didn’t really resonate with me.  Although I had a bad case of the “baby blues” in Stella’s first weeks, I thought it was crazy to think that parenting wasn’t a magical, wonderful adventure.  Obviously the people who weren’t enjoying it were doing it wrong—that’s what I remember thinking after reading the article.  No matter what, I couldn’t shake the ideal that this little baby in my arms was going to be infused with all the things I wanted for her— a love of reading, an interest in history, a passion for travel.  We were going to be best friends for life, she would adore me and I would adore her.  But, of course, that was before I really knew Stella.  By the time she was 9 months old, I was exhausted all the time.  I felt like parenting her was all about frustration, sacrifice and struggle. It was hardly fun at all.  My ideals of parenthood were tossed on the ground and stomped on, like the Cheerio smitherines that lived under Stella’s high chair.  So I changed my mind, remembered the article and decided the problem was my child…she was just difficult and challenging and maybe if I had a different child, it would be better and more fun.

 

Then we found out that Stella was going to die and everything changed in one gut-wrenching, ice cold, harsh and heartbreaking instant.  All of a sudden, everything I believed was transformed.  I soon realized that Stella wasn’t the problem—it was the way I viewed parenting.  I thought of Stella as an accessory to my lifestyle.  She was adorable— a little round ball of fiery energy with pink lips, bright blue eyes and gorgeous curls.  Strangers often commented to me how cute and/or beautiful she was and I was always proud to be seen with her…but I was not always proud to be her mother.  It was difficult when daycare workers would approach me at the end of the day with an incident report and tell me she had bitten or pushed or pulled hair or done some sort of damage to another persons child.  It was exhausting that she felt 5:00am was a perfectly respectable time to wake up in the morning and start her day.  It was frustrating when she didn’t get her own way and physically lashed out— cutting my lip with her nails during a tantrum, throwing a bowl of pasta with full force against our white walls, rolling from one end of the room to another screaming because I wanted her to put her shoes on. It felt like a personal failure that my child wasn’t a cuddly, kind, polite little girl. I don’t know what I was expecting parenthood would be like, but I distinctly remember wondering if the work and stress of being a parent was “worth it”.  I resented the loss of freedom and autonomy and self-indulgence that came with being a mother.  But the issue was how I viewed parenthood— I thought it was like an economic investment.  You know, you put in the time and the effort and the money and your “return” was an adult child who was well-adjusted, smart, independent, polite, loving, etc.  I thought being a parent was all about what I would get back someday, which was the feeling of accomplishment and pride that comes from doing a good job parenting.  The glory that comes after the work where you get to sit back and watch your masterpiece be admired by others.  I always imagined these moments of pride when your child graduates top of their class, when they get an amazing job in a great company, when they volunteer to spend their summer planting trees on the West Coast.  Somehow, for some reason, I convinced myself that the reward of being a parent was having a grown-up child that would “prove” and “reflect” that I was a good parent.

 

But finding out that your child is not going to survive toddler-hood changes everything.  All of a sudden, parenting is not about YOU anymore, it’s totally about your child.  There is no reason for us to force Stella to say “please” or “thank-you”.  There is no urgency for us to make her to brush her teeth.  All the “teachable” moments like asking her what colour the light needs to be to cross the street suddenly seemed pointless.  Reading books for any reason other than pleasure made no sense.  Parenting a child who is going to die, I am certain, is a much different mentality.  And it needn’t be all or nothing, I think there is a way to have fun and still teach your children what they need to know.

 

In the last 14 months parenting Stella, my view of what a child is has completely changed.  My children are no longer accessories that I take out in designer clothing and a $1000 stroller to Starbucks where I get frustrated because I can’t drink my $5 latte in peace.  Parenting Stella, Sam and Hugo is not my job, it’s my choice.  I care so much less about teaching them the alphabet and so much more about making them laugh by putting a silly wig on my head.  The farm is no longer a place to have them count how many eggs are in the picture on the wall there are, but a place to giggle as we play hide and go seek with the chickens.  It doesn’t matter if my kids clothes are dirty or ripped…that probably means they are having an amazing time. I regret all the fun times I missed with Stella when she was younger because I was too busy trying to fit her into my life instead of changing my life to fit the purpose of parenting.

 

For me, parenting is not about providing society with another adult anymore, it’s about the journey.  The journey should be full of laughter, love, respect.  I’m glad I got a second chance to be a parent because I feel like I “get” it now.  I want to enjoy my children.  I don’t want to spend all my time thinking about who they will be in the future, I want to spend my time learning who they are now.  I want to let them pick out their own clothes without me trying to convince them that plaid and stripes are a fashion no-no.  I want to hear what they think about Barbie without inflicting my own views about her.  I want to take them to the museum if they are interested in dinosaurs, but if they would rather learn about history than I will take them to Fort York instead.

 

I want to talk less and listen more.

Tonight Sam fell asleep in his crib with his hands tucked underneath him and his bum in the air.

 

Tonight Stella fell asleep on my lap, cuddled under her special rainbow blanket that was knit for her by a blog reader in the Fall.

 

Tonight Hugo is cuddled in Aimee’s arms, fast asleep with a baby scowl on his red face.

 

I still can’t believe Aimee and I have three children.  And I can’t believe that I once thought parenting was about the end result instead of the process.  I’ve come full circle with that parenting article now.  I feel like I once hated it because I was doing it wrong.  I wasn’t parenting from my heart, but from my head.

 

Stella’s middle name is “Joy” and that is my only mantra now.  To find joy in myself, my life and my children.  To parent as much as possible from a place of joy in today, instead of expectation for tomorrow.

 

“Joy is a net of love by which you can catch souls”- Mother Theresa

 

Goodnight Hugo:

Auntie Heather cuddles Hugo and Stella:

The girls with their Stella and Gracie crocheted dolls

 

 

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Hugo is Here

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Hugo is Here

 

On August 2, 2012 our third child burst into the world.  The delivery was different from Stella or Sam.  Stella’s delivery was stressful, long, traumatic and left me with a severe case of baby blues that still gives me chills.  Sam’s birth was at a time when emotions were at an all time high and there was tension, expectation and fear you could cut through despite the ultimate joy at his safe delivery.  I cried for days after he was born, Aimee was injured during his birth and we each remember his early days as a haze of help, pain and happiness as we confronted for the first time the realities of living with one child dying and one child thriving.  We were only three and a half months into Stella’s cancer and waking up in the morning to the reality was still enormously difficult.

 

Compared to Stella and Sam, Hugo…well…he just sort of came.  It wasn’t as emotional as we thought it might be, it wasn’t terrible or difficult.  It felt fairly normal.  There was nothing dramatic about his birth, he was just born and the people in the room smiled and he was perfect and healthy and all if a sudden, there was a new baby there.  Hugo was born just before 10pm and we were all snug in our beds at home by 4am.

 

Hugo looks like an almost exact replica of Stella when she was a newborn, except she had spiky red hair and Hugo’s is brown.  Maybe I shouldn’t be as surprised by how much they look alike, since they are full siblings, but…it’s still a bit shocking at times.  Hugo is too young to have developed his own personality yet, so when we look at him we just see Stella as a newborn and it’s both comforting and crushing at the same time.

 

Sitting in a dark room feeling tired and overwhelmed it takes you right back to those first few weeks of parenthood with Stella.  Looking down at this baby it’s impossible not to remember looking down at Stella and marveling over her perfection as a newborn while she lay in our arms, so full of promise, with our imaginations in overdrive as we planned her entire life.    With Stella, I spent copious amounts of time researching overnight camps (she probably would have gone to Tapawingo or Kawabi), lessons (soccer would have started for her this past Spring), even private school (we couldn’t afford it, but I was really liking Giles and Greenwood).  She was going to go to Paris with Tutu when she was 16 years old and Disneyland at age 6 with Gracie.  When she was 13, Aimee and I planned to take her to Africa to volunteer so she had a bit of perspective before the teenage years hit with a vengeance.  I filled out Stella’s baby book faithfully, kept daily logs of her naps and visitors for three months, wrote her journal entries to read her someday as an adult and set aside my favourite outfits of hers so I could someday pass them down to her kids.

 

With Sam and Hugo I try to stop myself from thinking too much about the future.  Partially to protect myself and partially because I feel like I can enjoy them more if I focus on the here and now instead of on the someday.  And because planning too far in the future necessitates thinking of a world without Stella and my heart can’t handle thinking about that right now.  So it’s not about “someday” right now, it’s only about today.

 

Today the house is chaotic.  It’s messy with toys strewn everywhere and dishes piled in the sink.

 

Today Sam is crawling everywhere, so one person is designated to chase him around the house and move hazards like Tim Horton’s coffee cups out of the way as he explores.

 

Today we are still trying to figure out how to give each of our kids the undivided attention they need.  So far we’ve only managed it due to the sheer volume of help we’ve gotten from our families who have been showing up everyday to hold a kid for hours at a time.

 

Today I am still working on physically healing from the labour (I ended up with a dural puncture which has resulted in migraine headaches when I am upright for longer than an hour at a time—it should pass in a week or so).

 

Today we are once again awed by the strength of our support system and feeling incredibly lucky.

 

Today Stella is still with us.

 

Today Stella is adjusting fine to her new brother.  She finds Hugo delightful.  When we put him in her lap or ask her to help feed him, she smiles and is as proud a big sister as possible.  I remember when Sam first came home from the hospital, she could still talk and would whisper to him and could still sit up and would help feed and burp him.  She can’t do those things anymore, but she is still aware of Hugo and the fact that she has gotten to meet him is a miracle in itself.

 

Today we are managing to stay above water and to leave room in our hearts for all the emotions that are crowding for attention.

 

Tomorrow? I don’t know.  Stella is fairly stable again.  She is back to confounding the Doctors who have told us they will no longer guess how much longer she will be with us.  The Toronto Exhibition starts next weekend—the official “end of summer” festival for all Torontonians. Sam is starting daycare in September.  My sister is going back to work in a few weeks as she is a teacher and her maternity leave is over.  Aimee is supposed to go back to work in October when her maternity leave ends too.  I remember clearly last Fall.  Stella was supposed to die last fall.  As this Fall creeps steadily closer we are again in a situation where we can’t fathom what the future might bring.  So, for now, I am refusing to think too much about it.  It makes no difference what I think or plan anyway.

 

The one thing I have realized this last week with Hugo is that there is no such thing as a “pure” emotion anymore.  Happiness has a hint of sadness, sadness is sprinkled with joy, joyfulness has a bitter aftertaste, bitterness comes with hope, hopefulness  is littered with pain and pain brings with it immense love.    All the feelings and emotions swirl around us constantly, and we have no choice but to wake up each morning and do the best we can.

 

Today we feel grateful for all three of our children.  Today we are blessed.

 

Today, we have more than enough to make us happy.

 

Stella shares her beanbag chair with Hugo:

Stella introduces Gracie to Hugo:

Stella and Hugo:

The Kids…Hugo, Stella and Sam:

“I like to imagine that the world is one big machine. You know, machines never have any extra parts. They have the exact number and type of parts they need. So I figure if the entire world is a big machine, I have to be here for some reason. And that means you have to be here for some reason, too.”

Brian Selznik, The Invention of Hugo Cabret

 

 

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Aimee, Mishi, Stella, Sam AND…

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Aimee, Mishi, Stella and Sam are proud to announce the birth of…
Hugo Charles Bruner-Methven
 

Hugo was born at Toronto East General Hospital on August 2, 2012 at 9:45pm.  He weighed 8lbs 4oz, 21.5 inches long.
The birth was amazing and meaningful and quiet (ok…well, except a little screaming on my part :o)    ), and expertly handled with beauty and dignity by our incredible midwife Christie K. who has been superb all throughout this jouney and her fantastoc backup, Sarilyn Z.
We got home in the wee hours of August 3rd and Stella and Sam were introduced to their new brother this morning.  Sam was frankly very uninterested, and Stella looked a bit horrified when we first brought him to her, but she warmed up later in the day after some good one on one attention from Juju and Auntie Heather and now smiles and laughs whenever he comes close.
Everyone is recovering well from the excitement.  We have had lots of help from our families and we are all doing great!
About the name:  In brief, “Hugo” was the name Aimee and I had selected for Sam before Stella decided to change it in Aimee’s seventh month of pregnancy.  Up until then, Stella had called the baby “Hugo”, so she was familiar with the name.  When we found out we were having another boy, Aimee and I (with the help of some forum readers) put together a list of potential names and asked Stella to help us out by sticking her tongue out when we got to a name she liked.  Well…she wasn’t being very cooperative with our requests, and finally one day a couple of months ago as we were going through names, we saw her trying to mouth something to us.  After a long and frustrating guessing game, we realized she was saying “Hugo”.  She had remembered the name and then…it was a done deal!
The name means “mind, body, spirit” which we think is lovely and one baby name book even had the meaning listed as “spirited”, which is the word we have always used to describe Stella.
The middle name “Charles” was selected by Mishi’s brother Tristan (he is 16).  Tristan is an incredible young man, who at the age of 16 shows a love for Stella and his nephews that is way beyond his years.  Tristan has struggled with Stella’s diagnosis the same way we all have, but has found inner strength and the ability to find joy in our difficult circumstances and continue his strong bond with Stella, something we are endlessly proud of.  We asked him to select Hugo’s middle name as a testament to how important he is to us.  “Charles” was the middle name of his and Mishi and Auntie Heather’s maternal Grand-Father.
So, in the next little while we will try to find our footing with the addition of our newest family member and keep you updated on how everyone is doing when we can!
Much love from Stella and the newest Bruner-Methven!!!
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