In a few days, Stella, Aimee and I will head to our third cottage in three weeks. Thank-you SO much to everyone who has made these trips possible with your offers, donations, time and ice cream money!
It’s a strange feeling; to have an entire summer off together and be surrounded each day by family and laughter, water, sky, sand and fun but still bear the weight of the reason this is all happening—because this will be Stella’s last summer. Our daughter is going to die. It still feels strange to say that…to write it and think it. But it’s true and nothing we can do or say will change that reality.
Luckily, physically, Stella is still doing extremely well. Her ability to walk has deteriorated markedly in the month since she was diagnosed…exactly a month and two days since we got the news. Still so hard to believe…already a month…only a month…how many months left??? But although her walking has deteriorated and her hands are much shakier, she is completely unaffected by all of it. She just asks to be carried a lot more and is careful to hang onto things when she walks. But she still walks…runs…dances this funny little flat footed stomp that knocks her over each time, and each time she tumbles she just laughs and pushes herself back up to resume dancing. Stella is still so easy to make laugh. Her giggles fill our days. She’s energetic, funny, and a little imp. When you say “no” to her she laughs her head off and does whatever she was doing even more. Despite everything that is going on inside her little body, she is just a 2-year old at heart. She still has trouble sharing and needs time outs, still refuses to take her medicine unless her new puppet “Carrot” gives it to her, still makes us laugh and cry each day.
Stella has been adoring her cottage trips. She isn’t exactly one for water or beaches, but she LOVES parks and playgrounds and sitting on our laps watching other kids run in the water and sand. And she has been having a blast trying to keep up with her three year old cousin, Gracie. Gracie loves the water and the sand whereas Stella doesn’t like to go near it. But once in awhile she can be persuaded by her aunties to dip her feet in— but ONLY when she has socks on, which makes it all the funnier to watch.
At our current cottage rental, inThunderBeach, there is a park with a tiny house. Stella has turned it into her personal coffee house and it’s hilarious to hear her repeat the things she must hear us say at restaurants/drive ins. She always asks us if we want a double-double (Aimee) or a large tea with milk (Mish). Sometimes she offers us hamburgers or doughnuts from her little window as well and warns us “it’s hot!” as she blows on her imaginary creations. Her prices are outrageous (two hundred dollars, Mama), but the service and her little giggles when we hand over our leaf money is totally worth it.
Sometimes while she’s chatting to her imaginary customers in the little house I wander over to the swings. I like to swing higher…higher…higher and close my eyes and remember what it was like to be a kid “flying” through the air without a care in the world. Usually a giggle from nearby wakes me from my daydream and I look down to see my curly-haired daughter laughing in glee at my swinging. It stops my heart every time and makes me want to just leap from the swings and let the wind take me far, far away from this reality. It’s so crazy. How can Stella be standing next to me, so full of love and life, and yet have a brain tumour steadily working away beneath those red curls, taking away her faculties and slowly shutting down her beautiful smile…how can I imagine that next summer I will sit in this same playground with her baby brother, only she won’t be playing in the little house, chasing Gracie or calling, “Mama come see me do it by myself!”. After we leave this cottage she’ll never see this beach or this park again. Soon her smiles, the warmth of her breath against my cheek as she naps, her chubby hands held tightly in mine will only be a memory. It doesn’t seem possible, my head has accepted the reality but my heart can’t process it yet.
On Saturday afternoon I laid down for a nap and had a bad dream. I dreamt that I was sleeping in bed and a huge, fat cat plopped itself on my feet and sunk its needle-like teeth into my ankle. I could hear all these people nearby talking and laughing, but I couldn’t open my eyes and I tried to scream for help, but couldn’t catch my breath. I kept opening my mouth to scream but no sound would come out. When I finally woke up, I was in a full blown panic attack and couldn’t catch my breath for real. I realized afterwards that the dream is really how I feel about this whole situation— there is always a scream just below the surface that is struggling to escape, but I can’t catch my breath enough to let it out, so I just feel pain all the time, and there’s nothing to be done about it. I want so badly to scream at the injustice of it all…at the pain…at the loss…at the world. But I can’t. Aimee and I have to keep waking up each morning and greeting our daughter with open arms and open hearts and even though it hurts so badly to love her so much, we have to do it for her and for the promises we made to her and each other as parents. And I wouldn’t have it any other way.
Donations, cards, kind words and offers continue to pour into our family. We cry each and every time we get a card, hear that someone has thought of us or done something nice for us. It’s an incredible feeling to be physically, financially and emotionally held up by such a huge community of special people. The lessons Aimee and I are learning through this experience go far beyond our life with Stella. We are learning everyday lessons in kindness, humility, gratitude, graciousness, generosity and love. It’s ironic to feel so lucky at this time in our lives, but we do.
Headed to another cottage this weekend and looking forward to creating more more timeless memories with our beautiful angel-to-be. Thank-you again to everyone…those we know and those we don’t. You are all each a precious part of this miracle of community we are experiencing.
Aim, Mish& Stella
Stella cottaging with Poppa, Mama and Auntie Heather in Kincardine: