Back in July, my first post for this blog was called “25 days”. I haven’t looked back on it–ever, until today. I actually never go back and read posts, because once I have transferred my thoughts to paper that moment is finished for me. But as Stella has reached the 9-month survival mark, I was thinking about how much Aimee, Stella, me and our families have been through since that first post. How many ups and downs we’ve weathered, how we’ve matured in our grief, how we’ve learned a lifetime of lessons from Stella, our community and each other. And I wanted to acknowledge our journey so far. Acknowledge how we were supposed to have only until the Fall with Stella, and now it is Spring again, and she is still here making us laugh and cry every day.
This next part might be hard to read for some people, but one of the most important things I’ve taken from Stella’s cancer is to be honest. Honest even when what you’re saying makes people uncomfortable and even when some people don’t believe you because it doesn’t fit into what is most convenient for them to believe. The complexity of feelings I’ve been through might be hard for some people to accept, but it’s an important part of understanding where I came from, and where I am now.
When Stella first got diagnosed, along with being overwhelmingly heartbroken, I was angry beyond belief. I was obviously angry at all the things that my daughter was going to miss out on, angry that out of everyone we knew it was “us” who were going to lose our child, angry at the Doctors for not having a cure— but also angry because I had this idea that I hadn’t yet gotten back enough of my “investment” in Stella. I remember talking to my friend An, and telling her that it wasn’t worth it. I talked about the heartache of trying to conceive Stella, and the financial hardships. I talked about the horror of my delivery with her (not one of my best memories, despite the ending of a healthy baby). I remembered the loneliness and isolation that followed me in her first few weeks, the overwhelming despair that later I realized was postpartum depression. I recollected how she challenged me every moment of her life. She refused to play independently, threw bowls full of baby food at the white walls, hit and bit the other kids, ran around constantly, tantrumed, laughed in my face when I tried to give her time outs, nearly bankrupted us with the ludicrous cost of childcare, and often left me in tears at the end of the day. Her stubbornness and independence was legendary; something others thought was a charming part of her personality, but as her parent, something that kept me up at night feeling like I was doing something so very, very wrong with her.
I loved my daughter because she was my daughter, but I never really “got” her. Back then I felt so cheated that we were going to lose her right when I was finally getting the hang of Stella and looking forward to her getting older and being more fun to interact with— now was when the universe decided to take her away from me!!?? This was bullshit. All that work, all that heartache, all those long and demanding days, all for nothing. I told people if Stella was going to die anyway, I wanted her to die right away, so I didn’t have to watch her suffer and suffer along with her. I remember telling my therapist (much to the shock of Aimee), that if I could go back, I wouldn’t choose to have Stella as my daughter. I know this sounds completely awful now, but at the time I felt like the horror and pain I was experiencing at the thought of losing her in such a cruel way, coupled with our tumultuous 2 years together, wasn’t worth it. A pain that brings you to your knees and makes you incapable of breathing and causes you to question whether or not you will be able to survive, was not worth two years of damn hard work raising her. I didn’t feel like I had enough good memories, to compensate for the nightmare I was about to live. I was totally lost in my grief.
Now, I marvel that I am the same woman who thought all those things so many months ago. The person who was so caught up in her narrow vision of what love and parenting were about, that she came <<this close>> to missing out on some of the greatest experiences of her life. Parenting Stella still isn’t easy– I doubt it ever will be, or would have been. But when I think about the thousands of big and small gifts my little red-haired imp has given me over the past 9 months, I am in complete awe of what an incredible honour it is to be Stella’s Mama. Stella just needed me to step back from my expectations of what being a parent was “supposed” to be, and learn to love her for exactly who she is. Still stubborn and defiant, but also incredibly strong, and funny, and creative. I love Stella more now than I ever have before, and I don’t feel like a parental failure around her anymore. I feel like she knew she had to live this long because she knew I needed to spend more time learning about her, and myself. Because she had so much to give me, but I had to be ready and willing to accept it. Her spirit and adaptability continue to amaze me and I find myself slowly becoming someone I can be proud of. It’s been a profound journey, incredibly painful but purposeful.
Most importantly, now I can look at anyone, including myself, and say wholeheartedly that given the choice— even knowing that we would lose her in such a tragic way— I would choose my Stella again, and again, and again. She is the perfect child for me and I would live through 1000 years of pain to spend one day basking in the glow of her smile.
I ended my first post, “25 Days” by saying that despite everything, “25 days later Stella is still laughing and smiling”. It’s nice to be able to say that 277 days after diagnosis, though much has been lost, Stella continues to laugh and smile. And this time, I’m laughing and smiling with her.
Stella, in the hospital, smiling the day she was diagnosed with terminal brain cancer:
Stella, 9 months later, smiling yesterday at the zoo:
Stella and I– smiling together on our front porch today: