Two years ...

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 

Happy 7th Birthday Phoebe

Phoebe's seventh birthday is tomorrow. Instead of blowing up balloons and decorating the house in anticipation of my sweet seven year old Phoebe waking up in the morning, today I planted flowers at her grave and tomorrow we will have her favourite foods, release balloons, and search for a sign that she knows how much she is loved and missed. My heart aches.

I wish I could watch her grow. I wish I knew what kind of cake she would want me to bake. I wish I could see her blow out the candles. I wish Mae and Penny could have their sister. I wish. I wish. I wish.

I wonder often what she would be like. How tall would she be? Would she be riding a bike without training wheels? Would she still love the beach? Would she like school and be excited for grade 2? Would she have the same favourite foods? Would she still like us to put her to bed? What kind of books, music and movies would she like? Would she still love to dance? Would she help feed and change Penny? What would her and Mae talk about for hours at bedtime?

This grief is harder and heavier than I ever could have imagined. There is a constant and dull ache, but some times it hurts so much I can barely stand it. Like a relentless storm, it wakes me up in the middle of the night or stops me in the middle of the day. It leaves me breathless, broken, and longing for just one more moment with Phoebe. Just one conversation - I have so much to tell her. One cuddle. One moment just to hear her laugh. Once moment to hear her voice. One chance to tell her how much we love her and miss her. One chance to tell her that we would have done anything to save her and we tried as hard as we could.

In the absence of these moments, I plant flowers, search for signs, release balloons, light candles, and celebrate the birth of my sweet Phoebe Rose. She came into this world fierce, strong, and determined and that day is one of the happiest and best days of my life. I can still remember every single moment and in many ways it feels like it was yesterday. I am so grateful that I got to be Phoebe's mom, even if we only had 5 years. I soaked up the beauty and the feistiness of Phoebe and I took none of it for granted. I wish with everything I have that we could have watched her grow up and it still feels impossible that we can't.

And so, on this second birthday without our precious Phoebe we will hold Mae and Phoebe's baby sister Penny close and do what we can to honour Phoebe's life. What Phoebe went through is not okay, it never will be, but we are working hard to make things better for other kids and families who are affected by childhood cancer. I think Phoebe would be proud.

Spread some love and kindness in honour of our sweet Phoebe tomorrow and share your random acts of kindness with us on social media. We would love to know that people smiled and were happy on Phoebe's birthday.

Let's start a movement of kindness, love and HOPE in memory of Phoebe.

And, if you would like to join us to golf on August 12th - it's not too late to sign up and we still have room for golfers. It's going to be an amazing day and all funds raised will fund childhood cancer research and help us fulfill our promise to Phoebe - to make it okay. For more information please visit www.phoeberoserocks.com

"Even if I knew that tomorrow the world would go to pieces I would still plant my apple tree". Martin Luther.

We love you so much, Phoebe.

While buying groceries yesterday, the cashier and I started talking about how close it is to school getting out for the summer. 

It was hot yesterday and I probably looked tired. She looked at me and said, I bet mom isn't looking forward to school ending. Then; well you just have the one and a baby, so you won't have kids fighting. I have three all grown up, she said, and they always fought. 

Oh, how I miss my feisty Phoebe. 

I smiled and said that I can't wait for school to get out for the summer. That I love having my kids at home. She said - well I bet you won't be saying that in August. I smiled again, but this time said nothing. She looked at me, again noticing the baby I was carrying, and said that waiting to have kids so far apart was smart. No fighting, she said again.  

I smiled again, but on the inside, I was screaming. I wanted to tell her that I have three kids too. That I didn't wait. That I had it perfect once. I wanted to tell her all about Phoebe. How she should be 6, but instead I just smiled and pretended everything is okay. 

I miss Phoebe so much. I miss her feisty personality. I miss her laugh. I miss her little voice. I miss how she felt in my arms. I miss every single thing about her. I wanted this woman to know that I would do anything to have it perfect again. That even fighting, tired out from summer, frustrated kids, are perfect if they are here and healthy. That we shouldn't take anything for granted. 

It has been a long time since I have posted a blog. We are still here and "we" are now 5. Mae and Phoebe have a baby sister named Penelope. 

Little Penny (that's what we call her) is a bundle of happiness and laughter and she brightens our days. She is like a ray of sunshine and she reminds us to look for the joy, just as her big sister Phoebe would have wanted. It is so nice to see Mae's face light up with pure happiness and love again. Penny looks just like Phoebe, but also like Mae. She has Phoebe's wise eyes and Mae's big smile. 

Learning that I was pregnant brought a huge range of emotions - mostly joy, but also sadness. Perhaps the hardest part was knowing that Penny will never get to meet her big sister Phoebe. She will know her, we will make sure of that, but it will be through photographs, stories and videos. I know that Phoebe would have been a wonderful and attentive big sister - I imagine her laughing like crazy at some of the things Penny does and it breaks my heart again and again that she was never given a chance. 

As we waited for Penny's arrival, Jon and I completed the impossibly hard task of emptying Phoebe's drawers and closet. Phoebe shared a room with Mae, but her clothes and things were always in the playroom. Packing her little things into boxes and bins was heart crushing and so much harder than I imagined. It took months. We came across clothes and toys that brought back beautiful and happy memories, but many of the clothes in her drawers were never worn; they were size 5 dresses, shirts and pants tucked away in anticipation of the return of a little girl that never came. 

We miss her so very much. 

The thought that Phoebe should/would be turning 7 in August takes my breath away. How can that be when I still can't believe she's gone? I wonder what she would be like. What music would she sing along to? How tall would she be? She seems so far away, yet I think of her multiple times a day. I worry that my memories of her are getting blurry - that one day I will no longer be able to close my eyes and see her perfect face or hear her laughter. I worry that as time marches on, she will slip farther away, and because of this I feel like I lose her over and over again, every single day. 

I now understand why people say that the second year is harder than the first. The numbness has faded and has left behind a desperate need to keep Phoebe close; to keep her from slipping away even more. We live in the past because this is when Phoebe was here, but as more time passes, it becomes harder. Life just doesn't allow this and so we straddle the here and now with the time when we had Phoebe. As the world and everyone around us keeps moving forward, Phoebe remains forever five years old. The things she will never see or do just keep adding up and each one breaks my heart. They each represent something else we have lost and at times the loss and ache is constant. 

And so, we do something everyday to honour and remember Phoebe. We talk about her. We laugh. We hold Mae and Penny close and love to watch them thrive and grow. We work to fulfill our promise to Phoebe; to make it okay.

In April, the Phoebe Rose Rocks Foundation became recognized by Revenue Canada as an official registered charity. Our mission and goal is to fund promising childhood cancer research, specifically research of cancers that have a low prognosis, while supporting families who need to travel for treatment. We have big plans and have been working hard. We are partnering with Childhood Cancer Canada to fund a national research grant competition that will focus on hard to treat cancers. The cureless. We want to drive research into areas that have seen little progress. We are volunteer driven, which makes it possible for us to give all that we raise, and we are still fueled by hope, only now our hope is for other families. We wish nothing more than for no other family to feel the pain we feel everyday. 

Our second annual golf tournament is coming up on August 12th at Mont Cascades golf course in Cantley, Quebec. We are busy planning a great tournament, we have amazing prizes (like 2 return tickets to any WestJet destination), and all funds raised will be matched by Childhood Cancer Canada. An incredible oppurtunity for us to double our impact.

Please join us. Tell a friend. Help us make a difference. There is strength in numbers. 

To register to golf or sponsor a hole please visit: 

https://golfmontcascades.golfems2.com/event/phoebe-rose-rocks-foundation-second-annual-tournament