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: