The Strength of Stella

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The Strength of Stella 

Thank-you so very, very much to everyone who has been keeping vigil with us and Stella these last five days, both from near and far.

 

Thank-you for your prayers, your candle lighting, your faith, your food, your company, your love, your cards and your caring.

 

I wrote a blog several months ago about religion and faith and trying to figure it all out.  I’m still in the midst of my spiritual discoveries and journey, but I have to share with you that I am convinced Stella can feel the great powerful energy that has been generated on her behalf because, once again, she is defying what the Doctors told us.

 

Last Tuesday we were told that Stella was fading quickly, that we were down to days with her (the fourth time we have been told this in the last 14 months).  She was sleeping almost constantly and eating only small amounts of ice chips.  Not able to reliably swallow her medications any longer, we moved her to a morphine pump to control her pain.  We spent three days monitoring her every breath.  We carefully recorded the last time we had seen her laugh, or smile.  We watched her struggle to open her mouth even a little bit.  We carefully swabbed her eyes which were crusted over, staring at nothingness. We stroked her hair, told her stories, gave her kisses.  We put a sign on the door indicating we were not longer accepting visitors.  Our families took time off work and school and came to us.  The Doctor contacted the funeral home to confirm everything was ready.  The person doing Stella’s service contacted us with final details.  Aimee and I held each other and kept repeating that we were going to get through this.  Our hearts broke, our stomachs churned, our racing minds kept us awake at night.

 

And then…incredibly…since yesterday…Stella has come back.  Out of nowhere her eyes are suddenly open and clear.  Her colour has turned from ashen to pink.  She is able to drink fluids again.  She is able to eat again.  She has even smiled a few times.

 

We don’t know what to make of it.  The Doctor doesn’t know what to make of it.  We are still cautious about what all this means.  We have not exhaled completely yet, but we were almost giddy with excitement today when Stella seemed up for playing again.  Trying to cram everything in that we could, we took her to the backyard to play in the sand and baby pool.  We gave her a bath. We pulled out her electric car and took her for a drive.  We read books.  We sang songs.  We laughed.

 

We don’t know what tomorrow will bring, but today gave us a hundred more memories and 133 more photographs of another day with our girl.  And I can’t figure out any reason that this could have happened, other than that the universe was so full of love and light for our girl that she decided to give us a little bit more herself.

 

Also below are two blog entries from Stella’s Aunties (Heather and Juju).  They are different. They were written on different days, in different styles.  They are about different things, but they both pay homage to how our girl continues to amaze and teach us about life…and ourselves.

Today our family made some memories!

Another day with my girl:


 

Humour Is A Funny Thing

By: Auntie Juju (Julia Gonsalves)

Humour is a funny thing. Sometimes its about words, sometimes its about the placement of a pause, a facial expression, purely a context. Stellie you have brought out the most basic humour in all of us- makeshift costumes, the animation of inanimate objects, mock stealing, the “I got your nose” kind of humour that delights kids your age, and adults our age in times of crisis especially. It is humour we don’t need to think about, or plan, or even be funny to pull off well. And there are some jokes that really never get old- the ones that end up in a smile, a laugh or a smirk from you. And often the ones that don’t make you smile, make us smile amongst ourselves because we are making fools of ourselves and we suspect that you know it. Maybe we even embarrass you sometimes, because you give us that plain look of a teenager that says do you have any idea how ridiculous you look? Humour has been here ever since your diagnosis- lucky for you kid your family was pretty damn funny to begin with (mostly intentionally). We make jokes about the most untouchable topics now, and we stand on our heads for your sake Stellie, but also for our sake. Because of you we’ve discovered that your Auntie Angie does a spirited british accent and has some intense puppetry skills she would never have revealed, didn’t even know she had, before this. Stellie because of you we have cried much less than we expected to, and laughed much more. We have been training our bodies with your help since last June to retain the practice of laughter as a tool for support, connection with each other, barrier from severe mental health symptoms, and a creator of energy when any of us finds those reserves completely depleted. Stellie thank you for appreciating our humour, from the most basic to the occasionally more advanced, for encouraging it by random flashes of the most brilliant smile. Thank you too for allowing me to feel confident that even when you are physically unable to smile, that you still value our attempts, and translate them, for you and for us, in languages of love, and security, and mutual benefit.

Anything for the promise of a smile: 


Our Extraordinary Girl

By: Auntie Heather (Heather Methven)

The journey with Stella is comparable to the opening tornado scene in The Wizard of Oz. Our families have been swept away and we are constantly churning in a state of fear, uncertainty and unpredictability. I thrive on routine, facts, order and predictability. The unknown drags me down into a pit of anxiety and panic. This whole journey has taken me out of my comfort zone and forced me to confront my biggest fears as well as, fears that I didn’t even know existed. This journey has also taught me valuable lessons and has changed my view, as well as my thinking on a lot of areas in my life. It has made me weaker and it has made me stronger. This year has been the most devastating, yet extraordinary year of my life…if that makes sense.

 

The devastating piece that we have known from the start of this journey is that Stella will die. I still cannot even phantom how we are all going to cope when our girl is gone.

 

The extraordinary piece is that we grew closer than ever as a family. We laugh, cry, vent, support and enjoy each other. I have realized

how precious time with family is and I will always ensure it comes first before anything else.

“The only rock I know that stays steady, the only institution I know that works is the family.” – Lee Iacocca.

 

The extraordinary piece is that Stella was only given approximately three months to live but she amazed us all and is still with us after fourteen months. Fourteen glorious months of special memories and time spent together.

 

The extraordinary piece is how adaptable Stella has been through this all. We were fiercely distressed wondering how Stella would cope when she lost her abilities one by one. We all eventually realized that our

distress was our distress. Our girl would provide us with valuable lessons on endurance and perseverance. As Mishi reminds us “Just because you can’t walk, doesn’t mean you can’t dance.”.

 

The extraordinary piece is how many people have “stepped up” to help us and hold us up through this journey. Mishi and Aimee have always had the most exceptional friends (which is actually a testimonial to them). Family, friends and strangers have joined us, comforted us and assisted us throughout the entire journey and we will forever be grateful.

 

The extraordinary piece is learning from two of the most remarkable mothers in the world. They have shared their journey with all and opened their minds, hearts and feelings knowing that it would put them in a vulnerable position.

 

The extraordinary piece is that Stella has changed the lives of many and has accomplished more in her three short years of life than most adults ever will. We have all learned exceptional lessons from our girl that will stay with us forever. She is the best teacher I have ever known.

The extraordinary part is that Stella is a living treasure of gold, she left her mark on the world and the world is a better place because of it.

 

We have all been blessed with support from others. There have been so many people that have personally helped me navigate through this. It would be unfair if I did not mention two very special ladies that have kept me from enduring a nervous breakdown during this turbulent time. Andrea (my therapist) and Wendy (Daniel’s mom).

 

As soon as I found out Stella had DIPG I spent hours and hours looking for anything and everything I could possibly find about this monster. I joined every on-line DIPG group. I followed blogs of parents who have had or have a child with DIPG. I have read obituaries from thirty-two children who have passed away from this atrocious disease since Stella’s diagnosis.

This is a reoccurring poem that I have seen on many of the DIPG websites; I would like to share it with others:

 

After the death of a child

Please, don’t ask me if I’m over it yet.

I’ll never be over it.

Please, don’t tell me she’s in a better place.

She isn’t here with me.

Please, don’t say “at least she isn’t suffering”.

I have yet to come to terms with why she had to suffer at all.

Please, don’t tell me you know how I feel-

unless you’ve lost a child yourself.

Please, don’t ask me if I feel better.

Bereavement isn’t a condition that clears up.

Please, don’t tell me “at least you had her so many years.”

What year would you choose for your child to die?

Please, don’t tell me that “God never gives us more than we can bear.”

Please, just say you are sorry.

Please, just say you remember my child.

Please, just let me talk about my child.

Please, mention my child’s name.

Please, just let me cry.

And, if you are brave enough, you will share the story of our extraordinary girl.

Auntie Heather sings Stella her favourite songs:

 

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My Sister, My Stella (BY: Auntie Heather)

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My Sister, My Stella

By:  Auntie Heather (Methven)

Mishi (Michelle) is my only sister.  We are a year and a half apart in age and we have always lived in very close proximity to each other. This,along with many other factors, has created a rock solid bond between us. We have always looked after each other and leaned on each other through thick and thin.

 

My sister has always put others needs ahead of her own. An example of her selflessness was on our first day of university. Michelle has always been brilliant and had the opportunity to go to any university she wanted too (with full scholarships). I was accepted to York but had extreme anxiety over going.  Because she fast-tracked, we had the opportunity to start University the same year.  Michelle decided to go to York as well (years later I found out it was to help her big sister). Michelle was extremely late for her very first day of classes because she was comforting me during a severe anxiety attack. I was throwing up on one of the bathroom floors of the university, Michelle stayed with me the whole time, talked me out of my anxiety attack and then made sure I arrived safely to class. This is only one example of many where Michelle has helped me. It might sound cliché but I would not be the person I am today without my sister. Michelle is not only my sister but also my best friend.

 

The very special bond I have with my sister has trickled down to Stella. Even before her diagnosis, I would try to see her on a daily basis. I loved to go over to the house before work and eat blueberries with Stella while Michelle and Aimee got ready. I loved it when I was able to pick up Stella from daycare, as soon as she saw me should would get a huge grin on her face and yell “AUNTIE” and come running over to me. I will always cherish memories like these.

 

Since finding out about Stella’s diagnosis I have been desperately trying to spend as much time as possible with her. I see her on a daily basis, whether for 20 minutes or a couple of hours. I enjoy and treasure the time we spend together and I am grateful for each word, smile, kiss and hug she gives me. I love it when she says, “I am Aunties bubbas” or “Hold me please”. I need to see her, when I don’t see her I feel like something is missing and I start to get anxious and upset. I am thinking of her constantly and I cannot even begin to fathom what life would be like without her. Sometimes when I wake up in the morning, I think I am having a surreal nightmare. Then the devastating reality sets in.

 

At the beginning of this journey I had such high hopes. All the doctors said that there is 0% cure for DIPG but I didn’t believe them. I spent hours looking for articles and cases of other children with DIPG and the results were always the same with the children eventually earning their “angel wings”. I continued to be hopeful even after looking at all the statistics, but reality has finally started to sink in. I see her being robbed of her abilities and I wonder why so many have to endure this devastating diagnosis. I don’t understand why DIPG exists in our world and I don’t think I ever will. I just know it is one of the most catastrophic thing that can happen to a family.

 

My sister has helped me through many difficult situations including our DIPG journey. Stella is her child and I should be

the one to shelter and protect her from the destruction DIPG has created; however, Michelle is actually the one who has protected and helped me through all of this.

 

We are currently going through the most devastating journey of our lives. It has brought our family, Aimee’s family and us closer together than ever before. It has also taught me that life is extremely precious, enjoy every second and don’t take anything for granted.

 

I am so blessed and honored to have Michelle, Aimee, Stella and Sam in my life. Nobody and nothing can ever destroy the amazing bond I share with all of them.

Mish and I in the bathtub (ages 2 & 3)…I think Mish looks ALOT like Stella!


Me and Mish at our childhood cottage (ages 5 & 4)

Mish and I were best friends, even as teenagers

 Stella , “my Bubbies’, and I

 

 

 

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WHY? (By: Auntie Heather)

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WHY (By: Auntie Heather)

Why does DIPG exist?
Why does it take so many innocent children?
Why is there no cure?
Why is there no hope?
Why is the only option death?
Why is this happening to sweet, innocent Stella?
Why is it slowly taking away her abilities?
Why is she no longer able to walk?
Why is she no longer able to talk?
Why is she losing her ability to see?
Why is this happening to our family?
Why is she going to be taken away from us?
Why will we have to live without her?
Why am I still in denial?
Why is life so unfair?
Why isn’t God answering my prayers?
WHY?

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My Bubbas (by Auntie Heather)

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My Bubbas (By Auntie Heather Methven)

Dear Friends,

The last three and a half months have been an emotional roller coaster for my family and I. It started on June 24th, 2011 (a day I will never forget) and it still continues to this day.

I was heartbroken when finding out that my curly red headed angelic angel was diagnosed with a terminal cancer and the doctors said she had around 3 months to live.

I was horrified and shocked when looking through hours and hours of websites and research, trying to find a cure for my Stella. I was constantly on different DIPG support groups and this horrendous DIPG has taken the lives of too many innocent children. There has hardly been any progress in the last 35 years with finding a cure for DIPG. The sense of helplessness and hopelessness is too much too bear.

I was devastated to see my sister fall apart with depression and anxiety. I am Michelle’s big sister, yet I cannot protect her and guard her from this atrocious situation her and Aimee are both forced to deal with. I feel powerless because there is nothing I can say or do to take away the DIPG or pain she is constantly going through.

I was depressed to see Mishi and Aimee’s close family members and friends falling apart. We are all coping with Stella’s diagnosis in different ways. Everyone has been very determined to keep strong in front of Stella but when Stella is not around the courageous front disappears, exhaustion takes over and the despair sets in.

I feel that my way of coping in this unfair tragedy is denial. I see her losing her abilities one at a time and I see her medication constantly increasing, yet I am always hoping and praying for a miracle. I haven’t truly accepted that she might not be with us one day. I am fearful to think about how I am going to handle the rest of her deterioration.

I have only broken down in front of Stella twice since the diagnosis. Stella does not like it when people cry and both times she said, “Don’t cry Auntie it’s o.k. I will fix your boo boo with a band-aid”. If only I could fix the DIPG. Stella and I were watching television and there was a bunch of children riding on horses. Stella looked at me and said “Auntie when I’m big I ride the horsie”. This was one of the times that I broke down in front of her. I looked at her with tears overflowing in my eyes and said “Of course”. I am grief-stricken that there will be things she wants to do that she will never have the opportunity to do.

Although there have been a lot of negative emotions on this horrific journey, there have also been some positive.

As a family we have never been closer and more supportive of each other. I have spent more time with my family then I ever have before, it is time that I will treasure and reflect back on with many cherished memories.

Aimee and Mishi have made sure that the last couple of months have been spectacular for Stella. She has been to various cottages, Sesame Street Land, play dates with her best friends, monthly Stella birthday parties and Christmas in September. They are making sure that Stella is a constant wonderland full of happiness and bliss.

Stella is only 2 and a half years old, yet she has touched more lives than most adults. Our families are blessed to have so much love and support from the community. Family, friends and even complete strangers have been inspirational and willing to help throughout this difficult time. There have been numerous successful benefits and fundraisers that have ensured Mishi and Aimee can stay home from work and be with Stella.

Children usually aren’t diagnosed with DIPG until the age of 5. I think that it is a blessing Stella is only 2 and a half because she does not know what is happening to her. She is unable to walk anymore, her speech and eyesight are getting worse daily, she sleeps most of the day, yet she still manages to have her infectious laugh that makes my heart melt like butter. Her high-spirits are a testament to us all.

I am grateful, I was blessed with the opportunity to have Stella in my life. Being Stella’s auntie is truly a gift!! You will always have a place in my heart and soul!!

Love, Auntie Heather

Photo by Silke Fischer

 

 

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Is this a dream? (By: Auntie Heather)

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Is this a dream? Is this really our reality? Why is this happening? How did this happen? Is there really no cure? How are we supposed to get through this? When will the pain go away? How am I supposed to help my sister and sister-in-law through this unfair and catastrophic situation? How will we ever live without our precious, spirited, delightful little curly red headed girl?
These are some of the questions I had when I first found out about Stella’s devastating diagnosis and these are still the questions I have today.

It has been a little over a month since we learned about Stella’s diagnosis and the pain and helplessness is stronger than ever. It is agonizing to imagine life without Stella. It is heartbreaking to see my sister and sister-in-law fall apart, go through so much despair and depression and know that there is nothing you can say or do to take away their pain. I try to be strong and brave in front of them and others but I myself am deteriorating inside. The only thing keeping me from having a nervous break down is seeing how courageous and heroic Mishi and Aimee have been through these last couple of weeks.

Mishi and Aimee are emotionally and physically exhausted, yet they wake up every morning and make sure Stella has the best day she possibly can. Stella has had an abundance of play dates and trips to her favourite places. She is a jubilant and vivacious little girl who looks forward to a new adventure every day with her mommies.

I am overwhelmed and grateful for all the love and support Mishi and Aimee have received from family members, friends and even strangers. It is a testament to their integrity and character.

I am so honoured and fortunate to have Mishi, Aimee and Stella in my life. I cannot imagine life without Stella saying those magical words “I love you auntie”. I will never give up hope for my bubbas!!

Love, Auntie Heather

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