Milestones for Baby Stephanie (By:Auntie Angie)

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UPDATE ON BABY STEPHANIE!!! Original blog post here: http://www.stellabrunermethven.com/2014/01/please-help-baby-stephanie-by-auntie-angie/

From Cherry (Stephanie’s Mom)…

Thank you so very much to all the donors for helping our family during such a tough time. It is extremely challenging having a child with congenital heart disease that they are unable to do a surgery or transplant to fix, and it makes it a little easier knowing people truly care and are willing to help. We are deeply thankful for all of your kindness and generous support that has been given to us, it is truly appreciated and will not be forgotten <3

Lots of love from De Souza Family

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Because of the unbelievable generosity and love from all of you…blog readers, friends, strangers, and Stella’s community of supporters….baby Stephanie will have her mama home with her for an extra 3 months so far!

Since the blog post about baby Stephanie went up, Cherry and Andre (Stephanie’s parents) have been in awe over the outpouring of love and generosity they have received.  Not only through monetary donations, that will help them stay afloat for the next several months, but messages and prayers of support, hope and inspiration, lifting their spirits and helping with each day.  I also want to personally thank all of you, as one of Stella’s auntie’s who has been sad and grieving  and a little lost, I have found strength and resolve in helping baby Stephanie and her family connect with this incredible community of supporters.

Many of you have been asking how baby Stephanie is doing, and have requested updates, which has been wonderful for Cherry and Andre to know that so many people care about how their daughter is doing.  I hope to keep everyone updated on how she and family are doing through blog posts every few months.

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And now for the update…

Baby Stephanie recently recovered from a cold that required antibiotics because it just wouldn’t clear.  For a baby who requires oxygen 24/7, adding a constant cough to the mix, created a situation where breathing and recuperating was quite a struggle.  However, Stephanie is a tough little one and has now bounced back and is stable.

Last week she visited a paediatric ophthalmologist because Cherry and Andre noticed a glare in one of her eyes when the lights are off.  During the visit they were told that Stephanie has no sight in her left eye, however the vision in her right eye is quite good.  While not always in unison, her eyes will follow a toy dangling in front of her and it’s clear that she finds enjoyment in watching the tv, bright lights, balloons, and will even turn her head around to see who is holding her.

I can’t help but think back to Stella, who’s vision gradually deteriorated to a point where we weren’t sure if she was able to see anything at all. Despite limited sight, Stella adapted and came to rely heavily on her hearing, which was with her right to her final time with us.  Hearing is often the last or the only sense a person has when losing their abilities or in their final moments, so the use of sound is incredibly important in bringing comfort and communicating love. We audio taped Gracie telling stories for Stellie so she could listen to them and hear Gracie’s voice when Gracie wasn’t with her.  We played Dora the Explorer on the tv ALL DAY long, not because Stella could watch it, as we don’t think she could even see the screen, but the sounds of Dora and the theme song with us singing along throughout the day brought her much comfort. Stephanie similarly responds to sound, also enjoying Dora, music, singing, and a little doll that randomly plays an old Carpenters song.

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Stephanie is approaching 11 months old and nearing her first birthday. The milestones of a typical one year old are plenty; sitting up, crawling, taking a few steps and speaking a few words. While Stephanie has not reached these 1 year milestones, that are typically ticked off proudly by parents in the paediatrician’s office, she has many milestones of her own that she has achieved.  Recently Stephanie has figured out that bringing her hand up to her mouth means she can suck on her thumb and fingers, which brings her so much enjoyment that a smirk often appears from behind her hand.  She is also holding her head up nice and steady and with a little support on her back she enjoys sitting up and checking out the scene around her.  She also has a new giggle that she saves for moments that she finds particularly amusing, and it’s unbelievably cute.

cherry6When it came to milestones, Stella was always ahead of the game.  She rolled over early, crawled early, and spoke several words before any of her friends the same age did.  This made it particularly heartbreaking when she gradually lost every single ability she had so quickly and seamlessly gained.  We often wondered if it would be easier, for both us and her, if she had never acquired the skills in the first place.  Now I see that both situations are difficult in their own ways and that it’s much harder on the parents rather than the child it’s happening to.   When it came to Stella, she adapted to her eroding abilities just as seamlessly as they were gained.  But for us, it was excruciating to watch.  For Stephanie, she is just as content to suck on her thumb and giggle freely.  But for Cherry and Andre it can be a struggle.

One aspect that is particularly hard for Cherry is Stephanie’s inability and/or refusal to take food orally. Despite being on an NG tube, Cherry has been trying to feed her baby food, to help with weight gain and for Stephanie to experience the pleasure of taste.  But Stephanie will have none of it.  Mishi has written in the past about the parental instinct to feed your child, and how intrinsically hard it is when you’re unable to.  Cherry feels the same sadness.

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But the most impactful update is the fact that Cherry can be home and present for all of the little milestones Stephanie is experiencing.  She was set to return to work in March but is now able to be home together with Stephanie and Andre on the weekends and at Emily’s House with Stephanie during the week.  She is with her for just about every minute of the day, even when I come to relieve her and Andre for several hours each Sunday, she always stays close by, never leaving the apartment.  Aimee and Mishi held the same attachment to Stella, rarely veering far from her.  It is because of this amazing community of family, friends, and Stella supporters, that helped make it a reality for my family, and I am forever thankful to all of you for making it happen for Stephanie and her family!

On May 6th Stephanie will turn 1 year old.  A feat that no doctor imagined possible.  A one year milestone of living, happily, and giggling.  If you have a moment on May 6th, let’s appreciate the little milestone that is baby Stephanie <3

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To contact Cherry and Andre, send messages of love and support, or send an email transfer, you can connect with them at:
babystephanie2014@gmail.com

To learn more about Emily’s House and baby Stephanie in the news check out the links below:
http://news.nationalpost.com/2013/12/06/how-surprisingly-cheerful-pediatric-hospices-help-sick-children-enjoy-the-last-days-of-their-short-lives/
http://www.cbc.ca/news/canada/toronto/toronto-hospice-cares-for-children-and-their-families-1.2471110
http://www.philipazizcentre.ca/emilys-house/


 

 

 

 

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Music To My Ears

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Parents whose children have died have to think about and overcome small daily struggles that other people never have to think about, or even pretend to understand.

For example, when I go on the Toronto Community Centre websites to register the boys up for swimming, I need to select from a drop-down list the child that I’m trying to sign up.  Next to Stella’s name is a note that says Stella Bruner-Methven: INACTIVE.  I asked them if they could just remove her name from the list, but they’re insistent that they can’t (which is total bullshit but you try getting someone who works for the City of Toronto to listen to you), so now each time I’m on the system I have to scroll past my daughter’s name and that horrible note until I get to Sam or Hugo’s name.  It makes my eyes prickle with tears every single time.  She is not “INACTIVE”  I bluster to myself.  She is DEAD.

And when I called the Canada Revenue Agency just after Stella died to tell them of her death so that they would stop sending the $100/month “baby bonus” you get here in Canada for each child, they advised me sternly that I owed them $100.  Why?  Because the October baby bonus for Stella had already been deposited into my account, but she died October 22nd, before the end of the month.  So I shouldn’t have gotten that $100 for October and needed to give it back.  “If she had lived to October 31st, you could have kept it,” the woman on the phone helpfully explained to me.  “Oh, and you will also see a reduction in your GST cheques because you’re going from 3 children to 2”.  Thanks, Canadian Government.

In the last two months we have gotten phone calls from daycares that we put Stella’s name on the lists for years ago.  Once in awhile, we still get chirpy messages saying, “This is Dandelion Daycare.  We just wanted to let you know that we have a spot for Stella.  Please call us to let us know if she is able to start on Monday March 25th…”  Aimee is the one who always calls back.  In case there was any doubt, she is a much nicer person than me.  She always just politely says that we are no longer in need of the spot, and leaves it at that.  If I were to call back I would tell them why.  I would say, “You can take us off your list because Stella DIED last year”.  I would want to shock them, to jolt them out of their sleepiness about the harsh reality of life and the fact that the little girl I hopefully and excitedly put on their stupid lists 4 years ago is gone now.  I want them to whisper about it in the staff room, and think about it and want to know more about the little girl that could have been there, but isn’t.  However, I am well aware it’s mean and pointless and petty, so I let Aimee make the calls.

Each birthday party invitation for Aimee and I needs to be weighed and measured and discussed for days as we lay in the bed our daughter died in.  Who is it for?  How old are they turning?  What types of feelings does the party bring up?  Jealousy? Anger? Sadness? Bitterness? Joy? Hope? Celebration?  We bat words back and forth like a tennis ball until we come to a decision about it.  We always have good intentions, but sometimes we just can’t take the final steps out the door and go to the party we had RSVPd for.

A dash to the supermarket for milk becomes an exercise in grief as I hurry past the inviting piles of green avocados that Stella used to shop with me for.  A trip to the attic to bring down an extra blanket fills my heart with heaviness as I see the line of boxes in the corner neatly labeled “Stella’s Room”, “Stella’s Memory Box”, “Stella’s Funeral”.  A walk to the library past giggling 5-year old girls in pink jackets and jaunty winter hats makes my chest burn.  You go on living your life, even loving your life, but the grief is always there, just beneath the surface, ready to burst through at any moment with its heavy, hot lava of pain.

Even happy moments have a twist of sadness to them.  Aimee had always fantasized about Stella joining soccer, but she never got the chance.  She was supposed to join up in the fall, but was diagnosed at the beginning of summer and by fall she couldn’t walk anymore.  So, this time, as soon as Sam and Hugo were old enough, we signed them up.  Even though it’s expensive and they are really still babies, we have waited a long time to see one of our kids in a soccer shirt so we love taking them.  You should see Sam and Hugo and Xavier all running around a gym in these tiny soccer uniforms… it’s just about the cutest thing ever!  No matter that most of the time it’s like herding cats trying to get them to do anything they’re supposed to, it is a joy to watch and experience.  But it’s sad too, of course, because we are all thinking about Stella and how she should have been there too.

After soccer yesterday, Aimee and I took the boys home and Gracie was with us as well while Auntie Angie volunteered with Baby Stephanie (she is going to write an update about baby Stephanie for you all soon!!!).  The three kids literally destroyed our house playing in it.  I’m surprised no one broke a bone they were so energized and excited.  They adore each other, and it’s fun to see them playing together even though my throat is in my heart most of the time as they leap from high heights and careen screaming through the halls narrowly missing furniture corners as they run by.

After Gracie went home and dinner was over, Aimee took the boys downstairs so I could make a weak attempt to put the house back together after a long weekend of chaos and activity.  I thought rather grumpily about how pointless it is to have nice things when you have young children.  The house we had painted a year ago is already in need of painting again— there are scuff marks and chips and dirt and crayon marks all over the place.  The nicely recovered couch is used daily by the boys as a trampoline.  They throw pillows on the ground and drool and pee and spread crumbs all over it.  Dishes from our matching set have been broken.  The tiny iron angel we got from Aimee’s Nana’s house when she died had its wing broken off on Friday when Sam threw it.  Photographs in frames are knocked over constantly.  We have about 6 broken frames laying around waiting to be repaired.  There are dried cheerios in the sink, piles of laundry that we just can’t seem to get under control and a fridge that could be a science experiment.  There is stuff everywhere.  It’s overwhelming.  It’s not that I need things to be pristine or totally clean and organized, but it’s also disheartening to constantly be putting a million tiny pieces of toys away only to have the bins dumped back out moments later and toys strewn around in every crack and crevice within seconds.  So, I took a deep breath and started to tidy up a bit, just enough so I felt like I had a tiny bit of control over my environment.

After picking up by hand tiny grains of rice from between the floorboards and stacking books on top of more books in the living room, I stood at the sink washing pots.  As the warm soapy water poured over my hands and I sighed thinking about ll the work left to do, I heard Aimee singing loudly in the basement.  I cocked my head slightly to the side to see if I was hearing what I thought I did.  And I smiled.

Aimee was playing guitar for Sam and Hugo.

She used to play guitar for Stella all the time, and so did our friend Brad, but since Stella died there has mostly been silence where the music used to be.  It was too sad to hear her favourite songs and remember her crooked smile and the way she danced with her arms waving and head bobbing.  I put the pot down, wiped my hands on the tea towel and headed downstairs.  As I walked into the basement, I saw Aimee standing in front of the boys with her guitar strumming and making up words to a silly song while they danced.  Sam strummed Stella’s old ukulele and Hugo was going between a maraca and bells, shaking and shimmying.  They both danced comical little dances, rocking their hips back and forth.  I laughed out loud to see how alive and happy my family was.  I grabbed the camera and tried to capture the moment, but it wasn’t really possible.  Photographs are amazing for certain things, but I’m not convinced they can fully capture off-the-cuff moments of silliness and love.  After a couple of shots, I put the camera down and joined my family.  We danced and played music until past the boys bedtime.

The dishes would wait until later.  The laundry would wait until later.  The music was here, and it was making me laugh and making my heart sing.  And Stella’s watchful eyes from the photograph on the wall, twinkled down at us.  I realized that my life is not perfect, and never will be.  But it is mine and I treasure it.

As I picked up Hugo and spun him in a twirl with me, I remembered one of my favourite sayings about how if you did not know true sorrow, you would not recognize true joy.  So while I would never go so far as to say I am grateful for Stella’s death, I am grateful for her life.  And I am lucky to have experienced gut-wrenching, terrible pain and sadness because now, when the music is happening, I can hear it clearly.

Last Night’s Impromptu Dance Party:

IMG_0886Hugo Beckham plays soccer:

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Gracie and Sam playing some odd game they invented that required face masks:

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Hugging brothers:

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Colouring Brothers:

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Winter trip to Jungle Cat World (photos by Kenneth Tinnish):

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Telling Stories

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

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Stella, Summer 2010:

Stella Muskoka chair 1 year

Stella and I, a few days before she died: 

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