Two years ago, we slept upright in a hospital arm chair pulled up as close as possible to Phoebe's bed. This was not our first time sleeping in a hospital chair, Jon and I alternated chair sleeping for months, years actually, but this chair sleep would be our last. We honestly had no idea that Phoebe would leave us so quickly. We had hoped that we would be able to bring her home, to witness another miracle, to heal infections, to surround her with family and friends. As hard as it was for us to accept or even admit, we knew that she was dying and going home meant we would be able to leave the ICU. Home has a pediatric residential hospice which I realize is something that is hard to talk about, but is a service that is needed and something we desperately wanted for Phoebe.
On this last night two years ago, I wish I had curled up next to her. I wish I had asked the million questions that were running through my mind. I wish I had asked her if she was scared. I wish we had talked about what was happening. We talked about Christmas, her birthday, and writing letters to Santa, but not a word was said about dying. I just couldn't do it. Instead, our brave, brave Phoebe let us know it was okay. She told us she didn't want to get better. She said she didn't want anymore tubes, and she told us in a way only Phoebe could, not to be upset. I wonder everyday if she knew she was dying. I would do anything to go back and be strong enough to talk to her about it. I would do anything for just one more moment.
I replay these last moments on last days over and over in my head. I remember two nights before Phoebe passed, I had left the ICU briefly to take Mae and my mum back to the Target House. I had to sneak Mae out of the hospital that night as Phoebe didn't want her to leave. I remember telling her that I was putting Mae to bed, so she wouldn't get upset (they had parent rooms actually connected to the patient room at St.Jude). I came back to Phoebe's room in the ICU to find that she wasn't there. I started to panic until I saw her in a nearby room smiling from ear to ear and waving at me. The room she was in was too cold, so she was moved. She was excited to be in this new room and she insisted that the lights, and all of them, be on with the dimmer on the brightest setting. It was crazy bright and close to, if not after midnight, and there was Phoebe basking in the glow of the lights. She was just beaming and I often wonder if she knew something that we didn't. That she may have is honestly what keeps me going on the very darkest days.
On November 18th 2015, we woke up from a night of very little sleep expecting to take a medical flight home to Ottawa. I know the staff at CHEO were expecting us and that the preparations made by both hospitals to try to get Phoebe home were nothing short of heroic. That morning we learned that Phoebe would not survive the flight and so we did what Phoebe asked us to do and we removed the bipap mask that had been helping her to breathe and replaced it with high flow nasal oxygen. We naively thought she would be okay and would hold on, if only for a little bit. Having never spent a lot of time in the ICU despite our many struggles, we truly didn't understand or allow ourselves to believe she was really so sick, but as soon as the mask came off and she could speak, she asked where her Mae and her Granny were and then waited for them to arrive before she closed her eyes and never came back. We had three hours with Phoebe that morning, from the moment she woke, to the moment she took her very last breath. I still can't believe she is gone.
We lost a lifetime of moments when Phoebe died. We lost her presence in every single future moment of our lives and because this is true, it often feels like we lose her over and over again. We are as heartbroken, lost, shattered, and devastated as we were two years ago, but we have somehow learned how to better carry the incredible weight of our pain and sadness, although at times it is honestly just too much to bear. The world keeps turning despite the huge piece that we know is missing and so we do the only thing that we can, we keep turning too.
Phoebe taught us that even on the very darkest days - there is reason to laugh and hope. She taught us to always look for the joy and when I close my eyes, I can still see her twinkling eyes and hear her great big belly laugh. It truly was the greatest sound. I can still see her; bright and shining.
We miss you so much, sweet Phoebe.
"Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That's how the light gets in". Leonard Cohen