Posted by Auntie Juju (Julia Gonsalves) on Jun 24, 2012
Today is June 24th...exactly one year since we took Stella into Sick Kids Hospital at 6:30am, thinking we would be out in an hour with some medicine and a pat on the back. 19 hours later we received the devastating news of a fatal brain tumor. Stella was given 3-4 months to live, but one year later she is still bringing joy and light into our lives, albeit in a much different way.
Aimee, Stella, Sam and I have spent today as a family. Gracie, Auntie Angie and Auntie Juju played with Stella in the backyard all morning while Auntie Heather and I took the boys to a beautiful outdoor Church ceremony today where our friends Omo and Arin were also there for hugs. Then, everyone left and just the Bruner-Methven's sat together in a heap on our couch. Stella napped on my lap, Sam napped on Aimee's lap and Aimee and I held hands and watched the Euro Cup. It was quiet, just as we hoped and we just focused on being together and feeling lucky to have so much love surrounding us at all times.
Today we have an entry written by Auntie Juju, which we think captures the essence of where we are with our journey at this point. Enjoy your weekend everyone...and remember, everyone dies at some point, but not everyone lives, so make sure today counts.
I want to talk to you instead of about you, over you, around you. How are you? Doctor Kevin says that you aren't looking back and remembering what you used to be able to do, that you are beautifully present for every change, that you are just here, here, here. Thank you for pushing me to do the same when I see you, to let the world around us, sounds and voices and insecurities and fears, my physical body, my brain, all fade away and just be with you when I'm with you. I get you in doses because I don't live with you, and because I am your jula and not your mom, and I am grateful for that too in a way because it adds to the odds that I can be here, here, here when we’re together. It's like seeing a rainbow, it's so easy to drink it in with all your senses and resist distractions when you know you aren't going to see that rainbow very often, and that it changes by the second.
I want to tell you that my ocd has been a thousand times worse since your diagnosis, and since you sometimes take hilariously enormous pleasure in other people's pain, you'd probably find that funny. I find humour in some odd places too, let me tell you. I have never checked the stove so many times.
I want to tell you that I love your smirk more than I can explain, but that a lot of the time I don't try to make you laugh, just want to lock my eyes on yours and just be there without trying to do anything to change how either of us is feeling. I want to tell you that I can absolutely tell when you're really looking at me, and I am so grateful everytime you are, that I get to be in your field of vision now and again, and I want to tell you that the air between us is far from dead, that I can feel the space between your nose and mine as soft and vibrant and sweet and full of love. I want to tell you that my time with you while your brother was born was one of my happiest times in the past year, because we bonded over being the only ones not in the hospital, because we were both happier to be sitting on the couch in some ways, and because we'd both rather walk than drive. I want to tell you that you are a really funny kid, and I enjoy your quirkiness and how I never feel anything but normal around you, and how rare that is for me.
I talk to you all the time when we're looking at each other, and I know you tell me things in those moments that are so much more real than verbal lines that are so littered with consciousness and expectations and rules we were taught. Stella as I watch everyone get sad around you I struggle to accept the present as if I had invited it. I am taking a mindfulness course and the timing couldn't be better. Thank you for talking to me with your eyes.
Stella I collected the music that will play at your ceremony, and I thought about you the whole time I did that, and tried to interpret the picture of you I have in my head into something people will want to listen to when they are all so acutely missing you. you are really hard to interpret, do you know that? i have never spent more time trying to wrap my conceptual arms around what someone's spirit feels like. It makes my brain hurt, makes my hands move in funny ways over my keyboard. Speaking of hands I have developed a tremor in them since your diagnosis too. Ha.
stellie I love you so very much. See you Saturday.