On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Tuesday, June 20, 2017

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: 


1 comment:

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