First of all, Aimee and I would like to thank everyone for their heartfelt wishes and for sharing our excitement and joy about the upcoming birth of our third child in a few months. There were, as expected, some people who posted negative and/or derogatory comments that were meant to be hurtful, but luckily we have the best web team in town (we heart Jeremy and Karen), who immediately removed any negative comments in order to preserve this website as a place of friendship and positivity.
One of the interesting things for me with this pregnancy has been to experience the miracle of a baby growing inside me— getting bigger, and kicking and rolling to let me know how alive he is inside—at the exact same time that I watch the other baby who grew in my tummy struggle to do even the most basic things. We never dreamed when we inseminated in the fall that Stella would still be alive 6 months later, and never imagined trying to cope with the realities of life and death each and every day. But here we are balancing Stella’s morphine, zofran, atropine and phenobarb, Sam’s foray into solid foods, Aimee’s breastfeeding tea, and my anti-depressant and prenatal pills. A mixture of life and death all living together in harmony with no concept of where either of them are at any given time.
Funny thing about death— I never thought about it much before, but now I think it, feel it, talk about it every single day. Before this horrible cancer hit my family, death was something that happened to old and sick people. My grand-parents have all died in the last 16 years of my life, but they ranged in ages 74-94 so…well, I always felt like they were supposed to die because they were old. And I would read about other peoples children dying and I would feel sad for a minute or two but, you know how it is, you turn the page of the newspaper and get caught up in the newest Brangelina news, and it goes right out of your head. How I long for those days of ignorant distractions.
But now death is on my radar permanently. It’s in my head and my heart and my line of vision.
I still sometimes look at my beautiful daughter, he lips perfect and pink, her hair flowing around her head, her porcelain skin almost luminescent, her smile as bright as the noon sun… and I shake my head that she is dying. How can I possibly prepare to say goodbye forever to this girl who owns a huge piece of my heart? And I often wonder when people come to visit us, when they see her sitting on my lap and she’s all warm and so very ALIVE…I wonder if they leave and think about how one day soon she will be gone from us forever. Gone from our lives, never to be seen, heard, touched ever again. Ever. These thoughts haunt my nights.
In 20 days it will be 11 months since Stella was diagnosed with a DIPG tumour. In so many ways, we can’t believe it’s been that long, but in many ways it also feels like we’ve lived 25 lifetimes since then.
Aimee and I have spent the last several weeks trying to organize all the videos we have of Stella. It’s completely bizarre to literally watch with your very own eyes the disintegration of your child from active, talkative, bright-eyed toddler to someone who sits on the couch for hours at a time, eyes unseeing, head unable to look up, voice silenced by cancer. On the good days we can watch the videos and laugh at our daughter’s antics. On the bad days we sit and cry, stunned into silence by how much Stella has endured these last months and how much our friends and family have suffered as we all try to continue smiling, even though we are all witness to something horrible happening to our beloved Stella. She may not be suffering, which is our only hope, but those of us who love her sure are.
All these jumbled thoughts came to a head a few days ago when Aimee, Sam, Stella, Auntie Angie, Auntie Juju, Gracie and I went to the butterfly conservatory in Niagara Falls. It was a great trip, and despite Stella being exhausted for much of it, she smiled lots and we know she had a great time.
At the butterfly conservatory, I thought about the well-known cultural myths associated with butterflies as a symbol of transformation. The metamorphosis of a butterfly really is miraculous when you fully comprehend the massive amount of transition that it undergoes from egg to caterpillar to cocoon until it finally unfurls into a fluttering, glorious flash of colour and energy. It made me think about how our lives—all of us— have changed in much the same way. Life has changed to such an extreme that Stella, Aimee and I are completely unrecognizable. The life of a caterpillar wrapped in its cocoon versus a butterfly.
In Niagara Falls, one special butterfly came to Stella and seemed to want to stay with her forever. It occurred to me that this insect nuzzling Stella’s cheek illustrated perfectly the deepest symbolic lesson of the butterfly. A butterfly has to learn to recognize the changes in its life and body casually and unquestioningly, just as Stella has done. A butterfly must have an unwavering acceptance of its journey, although it may at times be scary and dip into the great realm of the unknown. The butterfly surrenders itself to metamorphosis, it believes wholeheartedly that the transitions and changes in its life will all lead to the right place, and fighting against changes is useless. The butterfly reminds us that we ALL need to have faith in the journey, just as Stella seems to.
Since being at the Butterfly Conservatory, I’ve started to see butterflies everywhere we go. They seem to come out of nowhere and flit around our heads, then disappear into the sky or the bushes nearby. Each time I see one, I remind myself that we are all in the middle of a great metamorphosis, and our greatest responsibility is to accept the changes that come our way and have faith that, in the end, we will emerge into the people we have the potential to be. But until then, the journey is our only guarantee.
A special butterfly for a special girl:
Stella delighted at the butterfly that landed on her stroller (left side):
Gracie and Stella, cousins and besties!
Great Wolf Lodge!
Great Wolf Lodge Waterpark: