Please Help Baby Stephanie (By: Auntie Angie)

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Dear Friends… please take the time to read this story about Baby Stephanie by Stella’s beloved Auntie Angie.  When you are finished, please share it.  Post it to your Facebook, print it out (just push adobe button that’s above), and hang it on the bulletin board at work, tweet the link, send messages of support to this family and tell all your friends.  Baby Stephanie matters.

A LIFE IS NOT MEASURED BY THE NUMBER OF DAYS IT IS LIVED, BUT THE EFFECT THAT LIFE HAS ON OTHER PEOPLE WHO TOUCH IT. 

Baby Stephanie

On the discharge papers from Sick Kids hospital, the document reads ‘Stephanie’s heart condition was deemed unsuitable for surgical intervention, the palliative team was consulted’.

A simple statement for such a profound reality. There is nothing else they can do.

Baby Stephanie was born on May 6th, 2013. While residing in her mommy’s tummy there were no clues as to the monumental anomalies that lay in Stephanie’s heart. Cherry’s ultrasounds all came back normal and her pregnancy was uncomplicated. Stephanie’s Apgar scores were 7 and 9 at 1 and 5 minutes. For those of us who are parents, we know these are good healthy breathing and circulatory numbers for a newly delivered baby. But as quickly as the Apgar tests were conducted, Stephanie abruptly turned blue and needed to be intubated due to respiratory distress.
For 9 months Cherry and Andre, Stephanie’s parents, anticipated and celebrated the life that was in creation. For two years my sister Aimee and her partner Mishi celebrated the created life that was Stella. No real signs or clues that anything but joy and happiness lay in the future. But in the blink of an eye, and a single written statement in hospital discharge documents, their worlds imploded.
Although Stella’s diagnosis came two years into her life, the statement was written as short and simple as Stephanie’s. ‘ Stella’s tumour is in-operable, the family has been referred to palliative care.’
After a host of tests, Stephanie was diagnosed with Tetralogy of Falot, a congenital heart defect involving four anatomical abnormalities of the heart. She was given two months to live. After Stella was diagnosed with DIPG, she was given three months. Stella ended up living for 16 more months, and Stephanie just reached her 8 month birthday. Their fight, strength, and resilience is evident in not only the morbid milestones they surpassed but in their smiles and love for life.

Stephanie’s mother baked a cake for her 8 month birthday, after she was told of our weekly birthday celebrations for Stella: 

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What do you do with the experiences and learning from a year and a half of helping a child live while they die? Not just any child, but your niece. And not just your sisters’ daughter, but the child of your best friend and closest ally in life, Aimee’s gorgeous, larger than life, little girl. I ask myself this multiple times a day. What do I do with the past few years of my life, of our lives? Do I let it go freely into the past? That feels like such a waste. I have difficulty connecting with the rest of the world these days. I assume my experience as an auntie, and our collective family experience of losing Stella, is a unique one. Some of the things I’ve learned from our journey with Stella are the kinds of little quirky rarities in life that only rare experiences bring. And the 16 months with Stella while she was at home in palliative care, were so full of lessons that some days it feels as if it’s all I know.

Stella and I, June 2012 (one-year after DIPG diagnosis):

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So when I learned of a paediatric palliative care home opening in Toronto I immediately connected with them. Emily’s House is where I met baby Stephanie, as a volunteer helping out a few hours a week with the children residing there. I hold baby Stephanie while her mom Cherry can have a brief break to go to the library or the pharmacy for supplies, while Andre works himself into the ground holding down two jobs. I was told Stephanie had heart complications and therefore needed to be on constant oxygen and an NG feeding tube. I was not told how long Stephanie may live for, but it was implied that it would not be for very long. Each week I look forward to cuddling with her, reading to her, soothing her while she cries. I came into the situation knowing that Stephanie would likely have a short life, and make an effort to be present with her in the moment, fighting the places that our minds so often naturally wander to, in the future.
A few months into Stephanie’s stay at Emily’s House she stabilized, dipped and stabilized again. Her parents began bringing her home each weekend overnight where a community care nurse sleeps over in case Stephanie needs medical attention in the night. It was natural for people to start questioning whether she could live until a time she may be strong enough to have heart surgery or even a heart transplant, despite medical opinion. And while Cherry and Andre tentatively accept the fate of their precious daughter’s sick heart, they hope and pray for a miracle.

Photos taken by the brilliant Christopher Yapp who generously offered his time and expertise!

Andre, Cherry and Stephanie:

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Cherry and Andre are both 35 years old, the same age as me. Cherry from the Philippines and Andre from Brazil, they both arrived in Canada in 2007 for work, met at a Tim Hortons and promptly fell in love. Neither one has any family members in Canada. So when the diagnosis arrived and Cherry and Andre learned that Stephanie would require constant medical care, it hit particularly hard.
I started going to their house each weekend, during their short coveted time at home, to take care of baby Stephanie for a few hours so that Cherry and Andre could get laundry done, take a much needed nap, shower, or go shopping. Being in their home with the beeping of medical machines, scattered supplies of medication, and home nurse visits, is all too familiar. The sounds, smells, and sights are similar to those that surrounded us throughout our time with Stella after her diagnosis.
Stella and Stephanie are two girls who defy medical odds, living beyond doctors’ predictions. Stella’s palliative doctor clearly stated that a likely reason for her staying with us as long as she did is because of the love that enveloped her. Love, care, and comfort carried Stella through scientific reasoning. And as I watch Cherry and Andre’s deep love, selflessness, and attentiveness for their baby daughter, there’s no doubt this plays a role in Stephanie still being here.

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But with their abundance of love for Stephanie, comes an abundance of heartache. I recognise the utter sadness in Cherry’s eyes and exhaustion in Andre’s. I connect with it. Even though I wasn’t Stella’s parent, I looked into my sisters eyes each and every day, baring witness to the excruciating pain. And I know what the weight of pure helplessness feels like. Stephanie’s family is a special one. The love exhibited by them in everything they do for her is so familiar. As is the uprooting of their world as they know it, never to go back again. The fear is familiar too, the ever present fear that seeps through most of the moments in which they hold their beautiful daughter. But despite such sorrow, I can sometimes hear faint laughter between the two of them seeping through the walls of their apartment, which makes me smile. With Stella, humour and laughter would sometimes get us through the toughest of days. People outside of our intimate circle would often have trouble understanding how they could enter the home of a dying three year old child, and find all the adults in the home buckled over laughing so hard we could barely speak, tears streaming down our faces, and our bladders giving way. Doing ridiculous things such as donning an adult diaper and prancing around the living room just to get a laugh was commonplace. Sometimes the humour was morbid and other times light and silly. Often the laughter was so intense that we all thought we were literally going crazy. I’m not exactly sure what the psychology behind it is, but my guess is that there must be a certain point that our minds and bodies cannot sustain the incessant high levels of stress hormones and emotional pain any longer. The endorphins released from laughing can be a vital break for the soul, and I am happy that Cherry and Andre have found that. Although Cherry says it took over 6 months for her to find her ability to laugh again, before that, it was only tears of pain.

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I sit and wonder how we could have gone through Stella’s sickness and death without our family, who were such an integral piece of the journey. I just can’t imagine it. Aim and Mishi had layers upon layers from immediate family to distant relatives come together to hold them up. Cooking food, raising money, making handmade dolls, sending messages of love and support; the ways in which family came together and wrapped themselves around Aim, Mishi and Stella, were endless. Not only family, but a whole community came together to embrace them. High-school friends, neighbours, anonymous donors, blog readers in foreign countries; a mass of people enveloped my family. The opposing realities of the devastation of having a terminally ill child, and the selfless acts of compassion and caring from people en mass, show how bitter sweet this world can be. The support network that developed, and continues to this day, is a true testament to the beauty in life. It is a sharp contrast to Cherry, Andre, and baby Stephanie’s world, which is empty of family here. No extra hands to hold baby Stephanie when emotions and sadness take over their bodies. No familial shoulders to cry on. There are some friends, friends who come over to cook dinner over Christmas time, friends they hold dear. But living in Toronto for only a handful of years, it has been hard to create an organized network. There is also Emily’s House, which is a godsend for them. Emily’s House provides much more than 24 hour medical care in a home environment. They are committed to optimizing the quality of life for children with a terminal illness and their families, and they provide social workers, faith based support, volunteers to drive them to medical appointments, and a staff team who have fallen in love with Stephanie.
Stephanie is a baby who is not hard to fall for. With a head full of thick dark hair, big brown bold eyes, and a smile that will break your heart, Stephanie captures the attention of anyone who lays eyes on her. Although she is 8 months old, she is the size of a 3 month old. It has been difficult for her to gain weight, although according to her last cardiologist appointment she has miraculously gained a little. Despite being developmentally behind her age, Stephanie fully engages with anyone who holds her. She listens intently, loves music, enjoys being read to, and enthusiastically responds to the excitable voice of Amanda, Emily’s House Volunteer Manager. She is a sucker for the shaking of a rattle which easily sooths her. She is a happy baby, and despite having some pain that is eased with medication, she seems content. Stephanie is also very smart. She quickly learned that rubbing her head back and forth against any surface she’s on, could dislodge the tubes that are taped across her cheeks and into her nostrils. One can easily see how irritating the tubes would be, and she is adept at trying to grab at them and pull them out. This is one reason why Stephanie needs constant watch. If she is not wrapped up in a swaddle, her arms are free to pull out the tubes, and therefore someone always needs be in arms reach to redirect her little clawing hands.

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I appealed to Cherry to allow me to write this post about Stephanie. Both Cherry and Andre are soft spoken, understated, humble, and extremely appreciative people. They don’t ask for much. Cherry points out that if they were back home in the Philippines, Stephanie would not have access to the medical care, medications, and supports that Canada has provided. They would have to pay out of pocket for the care Stephanie requires and they would not be able to afford it. For this, they are truly grateful.
I am writing this post about baby Stephanie for a few reasons. One is to simply share her with you. I want people to know about a beautiful brilliant baby girl who is fighting each day to be here. It’s also my hope that this compassionate loving community that embraced Aimee, Mishi, Stella and our whole family will also welcome Stephanie, Cherry, and Andre with open arms. Cherry speaks about how isolating and alone it can be. And I believe messages of love, recognition, and encouragement will keep them going the same way they have kept Aim and Mishi going. Maybe Cherry and Andre will connect with other parents who have a terminally ill child. As Mishi has mentioned before, it’s a small club, and it has proven hard to access for a family relatively new to the country.

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I am also hoping that this amazing community will consider giving to Stephanie’s family financially. Cherry’s maternity leave ends in March and she is supposed to return to work. Because she has been on maternity leave she can’t receive any other EI benefits, and they can’t afford for her not to have an income. She is facing the daunting reality that she will likely have to go back to work in a month and a half, taking her away from the precious time left with Stephanie, just to stay afloat. She will have to start working weekends in march, taking her away from home time with Stephanie. I can’t imagine facing this dilemma. Aimee and Mishi were privileged enough to receive benefits from their full-time employers, which included ‘sick leave’ benefits, as well as generous donations from both friends and strangers that allowed them to stay home with Stella each and every day until she took her last breath. What an amazing privilege that is, and I know they will be forever grateful. I also know every single dollar generously donated to Stephanie’s family would be an incredible gift, possibly allowing for more time spent with their baby daughter. When I pitched the idea to them of creating an account on-line for people to donate to, in order to help support them in spending quality time together with Stephanie, as well as covering costs for things on weekends when they are at home, such as pharmacy supplies, printing photographs, food, and clothing, they wondered who would do this. I told them about the incredibly generous people far and wide that came together for my family. I told them there are people out there that are willing to give if they’re able to.
And so I ask for people reading this to send it to everyone you know, post it on Facebook, and tell your family and friends. Tell them about the inspiring baby girl named Stephanie who, despite her broken heart, creates love all around her.

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To donate to baby Stephanie, Cherry, and Andre please click on the ‘donate’ link. Funds donated will go toward the family spending quality time together at home on the weekends, outside of Emily’s House, covering costs of supplies and food. It is also my goal to raise enough funds to grant Cherry an extra 3-6 months with Stephanie before having to go back to work. Please make note that this is not a registered charity and therefore a tax receipt cannot be granted.




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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Notes in the Margin

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Stella is like a special secret whispered in my ear.  As I go along in this life, no one has any idea how often she is with me.  He little cackling laugh is in my mind, her fearlessness is in my heart and her name is breathed silently as I inhale and exhale through the days.  I often find myself doodling her name in the margins of my note paper as I sit in class.  What a lovely name she had!  Stella Joy Bruner-Methven.  I print it out carefully, then use my best handwriting and make the “y” in her name loop nicely over and back, and sometimes experiment with calligraphy or block letters.  I want to see her name.  To remind myself, prove to myself that she lived.  The people who are around me most of the time don’t know anything about her.  They never saw the light bouncing off her curls, have never heard any stories about how she exasperated me, are unfamiliar with her story and her legacy and her life.  To most of those I meet now, I am Sam and Hugo’s mom.  When people comment on how often I am sick with colds, or if we’re trying to get together for group work, I often end my sentence with, “I have young kids”.  “How old?”  they ask, “1 and 2,” I respond.  And that’s that.  Stella is not part of the equation.  There is no understanding or knowledge of all that I have seen with my eyes, or felt in my gut.  Stella doesn’t register with new people.  Even if I mention that I had a daughter who died, she is not real to people I’m just meeting.  It is just a sentence that I utter with no depth or meaning.  She is not concrete to them.  But to me…oh, she was so very, very real.  I can easily recall how the teeny, tiny fine blonde hairs on her upper lip sometimes had milk on them.  I remember that she had the softest skin and little dimples in her chubby knuckles.  I can imitate the way she would dance, rocking back and forth and shaking her head in a movement that was actually very penguin-like.  I remember how she made the word “Mama” have three syllables when she called me, “Ma-a-ma”.  She existed.  She was here.  And I was her mother.

I took Hugo to swimming lessons for the first time last night.  At 17-months old he is pudgy, affectionate, and easy-going.  His hair is so unbelievably straight that it sticks out in funny ways when it gets too long, like now.  He’s cute and people tell me so all the time.  So, last night in class, a woman with a little girl who looked to be about Sam’s age befriended me.  Her daughter Aleisha was small and dark with a lovely smile and soft black curls down her back. The mom was super-friendly and chatty.  She assumed this was my first swim class with Hugo (which was correct), but also assumed that I was a first-time mom and that Hugo was my only child.  So she geared the conversation towards “helpful hints” that I might need to know.  She didn’t ask me about it, just assumed, and I didn’t both to correct her.  So, she chatted about which pools were warmest in our neighbourhood, and the classes that Aleisha had taken that she liked (“Gymboree is so expensive, but there is a place called Trampoline Club that is just as good and half the price…”).  She amiably told me about singing groups and drop-ins.  She offered me toilet-training hints and recommended a place to get used clothing cheap.  I smiled and gave the interested, “oh, really?” responses.  I could have told her that I had more children, but I was too tired.  When I say Hugo has a brother who is 10.5 months older than him, I get raised eyebrows and comments about how crazy it must be to have children that close in age.  If I mention that I have an older daughter, everyone wants to know how old.  I can’t answer that question anymore.  She was 3.5 when she died, she would be 4 now, almost 5, but she’s gone so how do you calculate age?  And then, of course, I have to say that she died which results in sympathy, but it is a passing sympathy.  A societally-dictated furrowing of the eyebrows, frown and cluck of the tongue with, “awwww.  I’m so sorry to hear that” thrown in.  And while this is much, much better than stunned silence, it’s meaningless.  It’s not their fault, but strangers who offer sympathy only serve to remind me that their sympathy goes no further than their voice.  They don’t feel icy coldness in their stomach, they don’t comprehend everything that I lost, they have no idea how hard it is for me to be standing there and saying the words, “My daughter died of cancer when she was 3 and a half”. It’s not because they are unsympathetic, it’s just that you can’t truly be sad about something or someone that is meaningless to you.  You can fee sorry for someone, but not bone-shattering sadness.  So, I said nothing.  Just stood there playing the role and let Aleisha’s mother believe whatever she wanted about me.  It was easy to do.  I fell into the “first time mom” box with very little trouble at all.  I realized in that moment that sometimes it’s less tiring to pretend to be someone else, then it is to be the real me.

Afterwards, I thought about how with Stella’s death, the old Mishi died as well.  I will never, ever be the same person I was before I heard the letters DIPG in conjunction with my daughter.  I find that Aimee often comments on how quiet I am.  I never thought I was loud to begin with, but I guess I hadn’t noticed until she pointed it out how much I live inside my own head now.  I listen to everything, observe what is around me closely, but have very little to say about most things.  In fact, I’m happiest being a homebody.  Just spending time with Aimee and our families and the kids, dealing with the everyday realities of laundry and lunches and bath time.  Sam and Hugo don’t need me to talk very much.  They like cuddling on the couch and reading bedtime stories, but compared to Stella, they are pretty low maintenance and actually entertain themselves a lot of the time.  When the kids are finally in bed, Aimee and I usually bustle around and get ready for the next day.  Before we fall asleep, we like lying in bed together and reading the newspaper in compatible silence.  I prefer text-messaging people now as opposed to speaking on the phone and find writing an easier way to communicate than face-to-face conversation.  Maybe it isn’t the healthiest way to keep and build relationships, I don’t know, but it’s what I’m most comfortable with.  I like spending time with those people that Aimee and I are closest to because they don’t require me to make conversation when I don’t feel like it.

I’ve talked before about how Stella’s cancer and death made Aimee and I really focus on what is important in life.  We spend more time with friends and family and less time cleaning the house.  We try to go on dates regularly, even when we have no money.  We appreciate the small things in life and don’t believe in the word “Impossible” anymore.  However, not all the changes are positive.  I am more guarded now.  I am quieter.  I am pickier about the people I choose to associate with and the people I choose to tell about Stella.  They have to be worthy, and I think in some cases this choosiness has been translated by others as snobbery, or being ungrateful to people who have reached their friendship out to us.  I don’t always have the energy to fake my way through social situations if I’m having an off day.  There are some people who mourn the old me— the more carefree, chatty, un-jaded person.  Sometimes I mourn the old me too.  But there’s nothing I can do to bring her back.  I can’t ignore the feelings I’ve had, the things I’ve seen, the life I’ve led.  So instead, I need to love the person I’ve become now.  Even if she is a bit quieter, a bit more guarded, a bit less carefree.  I need to learn to love her because she is also less stressed out, easier to please and more aware of the thousands of small blessings that perfume each day with sweetness.  Aimee and I and our families have worked hard to turn Stella’s death into an opportunity for us to truly celebrate life— to Find the Joy in everything we do, and part of that is being true to ourselves, for better or for worse.

Maybe it’s not that I’m quieter or more boring now.  Maybe it’s just that smaller things bring me as much joy as bigger things used to.  The exotic vacations have been replaced by weekend trips to a humble cottage.  The drive for a career where I could make lots of money has been replaced with the desire to work in a field where I can make a difference, even though the money is much less than what I used to make.  The need to have a multitude of friends to rush around visiting and spending time with has been replaced by contentment with my own company and that of my kids.  I get great pleasure from a hot cup of tea, a long walk in the sun, tucking my kids into bed at night, sharing a laugh with our family, embroidering, rediscovering an old book and eating dessert.

And I get an immense amount of delight in writing my daughter’s name in the margin of my notebook at school.

Stella Joy Bruner-Methven. Stella JOY Bruner-Methven.  Stella Joy. Stella. JOY.

She was here.  She was real. And I guess even when I meet people like Aleisha’s mom or people at school who know nothing about her, she affects them because she has affected me and who I am.  So though she is not here, I am.  Still here, still standing.  She is with me always because she is part of me always.  The parts of me that died with her, and the parts of me that live in her honour.

 “The deeper the sorrow carves into your being, the more joy you can contain”.     -Khalil Gibran

Finding joy in the simple things in life…cuddles with Hugo on the couch:

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Daniel tickling Xavier:

IMG_0583The boys reading books with their uncle:

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Spending time with family (Juju, Gracie, Sam, Aimee, Tutu, Angie, Hugo):

IMG_0624Spending MORE time with family (DeeDee, Aimee, Poppa, Uncle Tristan, Me, Sam and Hugo):

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JOY.  December 2010 (20 months old):

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The Darkest Place

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Thank-you to everyone who let me know you’re still out there reading— that was nice to hear!

On the DIPG web, under the discussion boards where bereaved DIPG parents gather, there has been a couple of interesting threads regarding mental health issues— specifically medications people are on, and suicidal thoughts that parents have had in the past, or are having now.  Even in a supportive, somewhat anonymous environment where everyone involved has lost a child to this devastating disease, there is a gingerness to how it is all discussed.

It is a well known fact that people are uncomfortable speaking about death and dying (particularly when it comes to children), but even more striking is the shame and secrecy surrounding the dark places our minds can go to when dealing with this type of calamity. So, in case it helps anyone, I want to talk about my own Mental Health journey.

Anxiety and depression are fairly commonplace in my particular family. Several family members spanning generations have been on various types of medications to help stabilize moods. My sister in particular, has had very public battles with anxiety and struggled with the stigma attached to long-term use of medications. She tried to wean herself off several times, trying other methods of coping and seeing various therapists and Doctors, but it was always disastrous. Finally, we told her that if she were a person with a chronic heart condition, no one would think twice about encouraging her to take medications, so why was it a problem when you have a mental health issue? She, and other members of my family, continue to deal with other peoples perceptions of anti-anxiety medications and mental health.  I myself was never on any type of medication, although my high-strung, Type A personality (I later found out), was really a manifestation of anxiety just waiting to explode. And though I was never diagnosed, it is clear to me retrospectively that I had some level of postpartum with Stella. For weeks, I cried uncontrollably each evening at 7pm. I felt incompetent, and sometimes didn’t even want to hold her. It was awful because people kept telling me how lucky I was, and oohing and ahhing over our perfect, beautiful, red-headed baby girl and I just wanted to disappear with my feelings of disgrace. It took a long time for me to feel normal again.

So, with this history, it wasn’t too much of a surprise that when Stella was first diagnosed, my body completely shut down. For days I could not eat or sleep. I didn’t want to be anywhere near Stella. I didn’t want to see or talk to anyone. I was broken, incapable of doing anything but breathing— and even that hurt too much. These, I think, are fairly normal reactions. But at around day 3, I realized that I wasn’t coping as well as some other people with this diagnosis because it hurt to live. Everything hurt. Physical, mental, emotional pain wracked my body and brought me to my knees. I would sometimes be standing, speaking to someone and I would literally feel myself physically sinking into a dark hole. The scariest thing about being in this hole was not the darkness, it was the sensation of free-fall. Of having nothing and no one to hang on to. Sometimes I would physically grab at my own body, curl into the fetal position and rock back and forth while sobs shuddered through my body.  I tried desperately to ground myself, but I couldn’t stop the stabbing pains in my chest. I couldn’t stop the whooshing noises in my ears. I couldn’t stop the relentless ice in my stomach. It gave me a new appreciation for what people like my sister, and other people with anxiety disorders live through when they have an attack. In my situation, it was triggered by a specific event, but for most people they have no warning of when or how they will suffer an attack, and that is scariest of all. Out on a benign evening out at the theatre, watching a child’s soccer game, having a normal day at work. Everything is fine and normal, then bam!, you’re on the ground.

Unlike Aimee, who got great comfort from being surrounded by friends and family, I just wanted to be left alone. I would wrap myself in the big gypsy-style skirts I was wearing that summer, curl into a ball and just sob trying to make the pain stop. Was I suicidal? I’m not sure. I don’t think so. Most of all, I was focused on making sure that Stella was never going to experience pain or sadness. I would fantasize about giving her a med overdose or something so that she would never have to go through losing her faculties one at a time. When the doctors mentioned that doing a biopsy of her brain tumor would be extremely dangerous and come with a high chance of permanent brain damage, or immediate death, I found myself wishing they would do it to just end everyone’s torture sooner rather than later. I was haunted by knowing what was coming… knowing that my energetic daughter who was literally bouncing around the hospital playroom laughing and giggling, was going to lose her ability to walk, talk, hold a crayon, etc. etc. I didn’t want that for her. I kept thinking it would be better to give her the best day of her life, maybe Great Wolf Lodge and ice cream and hamburgers, then end it all. It seemed the most humane thing to do for everyone.  To be honest, the only thing that stopped in those first dark days, was the knowledge that it was a crime and that I would be taken away from Aimee and our unborn son and thrown in jail. Part of me didn’t care— I would die for Stella— but I felt like I couldn’t do that to Aimee. So for weeks, I lived in this torturous land of not being able to see past the pain and horror of what was to come.  I lost myself in a fantasy world and worked out complex plans of how I could make it all go away.

Aimee and I were lucky and got in to see a fantastic psychiatrist in August, just 6 weeks after the initial diagnosis. Even so, by the time we got in, I was a mess. I had lost a ton of weight, I couldn’t stand the thought of waking up each day, but worst of all, I was missing time with Stella. Good time when she wasn’t having many symptoms and death was still far from imminent. But I couldn’t function.  I couldn’t be present.  For the first little while, the psychiatrist tried various medications to help stabilize me. Selexa, Seroquel, Zoloft, Ativan, Cipralex, Clonazepam. I was desperate. I tried anything and everything, different combinations and times. Some meds seemed to make it worse. I would hyperventilate and gasp for breath as there was a crushing feeling in my chest that threatened to bury me with its weight.  Some meds made me sick to my stomach, some just made me pass out into a deep, dreamless sleep.

Awful does not even begin to describe what those first few weeks were like. Finally, after several tries, my psychiatrist and I figured out a cocktail of drugs that made life tolerable. At first, all they did was numb everything. I felt neither happy nor sad. There were no ups or downs, just a steady, constant humming that reverberated through my body and made me feel more like a zombie than anything else. I still remember my inner dialogue saying things like, “That was funny, you should laugh” and I would force myself to chuckle in a way that sounded hollow to me, but seemed to fool others. I knew how I was supposed to act in certain situations, but because I could feel nothing I just did my best to act normal, though I was dead inside. Even though I felt nothing, it was better than feeling horrible all the time. And when it got really bad, when I couldn’t stand the pain, I had a med that would put me to sleep and give me just enough of a break to gather strength so I could get up and be a parent to Stella again. When I look back at the thousands of pictures we took between the time Stella was diagnosed and the time she died, I am pleasantly surprised at how functional we all were. From trips to Great Wolf Lodge, to Sobey’s for avocados, the park, Riverdale Farm, puppet shows, sing-alongs at home, baking cakes, swimming, etc. etc. etc. I am there, with Stella, smiling and living each step of the way. I wouldn’t have believed that was possible the first few weeks after diagnosis.

The meds didn’t take away all the anxiety and depression. There were times when I was still thrown into that dark hole and would have to claw my way out, one excruciating breath at a time. I clung to Stella as my touchstone. I would tell myself that no matter what I was feeling, no matter what I was thinking, I had to stay positive and happy and cheerful for Stella. It wasn’t always genuine joy, but I was able to be there for her, which is what needed to happen.

Aimee and I attended weekly therapy sessions faithfully. My fantasies of killing Stella to spare her the agony of DIPG were accepted and put into context. Safety plans were put into place for both Stella and I regarding her medications. Nonetheless, I used to keep—hidden deep inside my closet—an extra dose of Stella’s medicine. I don’t think giving her a double dose would have been enough to harm or kill her, but it was like my little insurance policy. Right to the last days of Stella’s life, I was honest in telling Aimee, our psychiatrist and our palliative care doctors that if I ever felt Stella was suffering in any way, I would take matters into my own hands. It wasn’t a threat, although I understand how it could be taken that way, it was just my desperate attempt as a mother to spare my child as much as possible. When every ounce of control was taken away from me, it was the only way I could think of getting some of it back.

But, anyone who has followed the story of Stella knows that we never got to that point. Despite the fact that DIPG did take everything away from her, I can honestly say that I believe she was happy, pain-free and felt loved and safe the whole time. It wasn’t easy. In fact, extremely difficult is an understatement. But, in time, Aimee and I learned to (our motto—) “find the joy” in each day, each stage, each small victory. And Stella taught us that quality of life is not measured in what you can’t do, but what you CAN do.  She really was the most remarkable child.  So young, so small, but with the power to change peoples lives forever.  It still stuns me when I think about it.

As the weeks turned into months after Stella’s diagnosis, everything settled down a bit. I still had bouts of anxiety and depression, but they became further and farther between. I still had my meds, I still had my psychiatrist, and I still had a wonderful, supportive family that held me when I needed to be held, reminded me to stay grounded and feel the chair beneath me and breathe. A family that didn’t judge me and my medications, but rather encouraged me to do whatever I needed to stay healthy.

When I got pregnant with Hugo, I continued to take my meds (in consultation with my Doctor), as it was decided that the risks of having a baby while on my medications were much less than the risk I would be taking with my health and the baby’s health if I went off the medications. I posted something to that effect on the blog when I announced my pregnancy, and I remember a few people emailed me, extremely concerned about being on meds. But I was fighting for my life.  I couldn’t risk what might happen if I went off them.

As of today, I mostly feel healthy.  I have gained back any and all weight I once lost (and then some!), I sleep normally and am no longer prone to anxiety attacks.  That said, I am still on my meds (though a lower dose), and I still go to our psychiatrist regularly. In time, it is my goal to get off the medications, but I’m not in a hurry. Actually, to be honest, I’m scared to. I’m afraid to do anything that might jeopardize the place I’ve gotten to, when I can enjoy parts of life, while still mourning my little girl. I worry that if I go off the meds, and stop seeing my psychiatrist, I will end up back on the ground in that black hole, clawing my way out. Without Stella to be the light in my darkness, I wonder if I will survive my own dark mind. So, I’m taking my time. Allowing myself to become really and truly comfortable with my life the way it is now. I am no longer numb. I feel all kinds of emotions— happy, sad, angry, hopeful, joyous, bitter, loving. And one thing I never feel, is guilty about having Mental Health issues.  It is not, and should never be, a thing of shame.

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”

― Kahlil Gibran

Tobogonning with Hugo and Sam in snowy, icy Toronto:

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Gracie and Hugo:

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Family Shot (Aimee, Sam, Heather, Xavier, Mishi, Hugo):

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Sam and Hugo enjoy Stella’s favourite– vanilla ice cream:

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Stella and I, just 2 weeks after she was diagnosed (you can still see her Hospital bracelet on), when I was at a very low point:

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