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.

Wednesday, August 3, 2016

Phoebe should be turning 6 this Monday. She should be blowing out candles, opening presents, and inviting her friends over to run through the sprinkler and play with her new toys. She should be racing her bike up and down the street, running to keep up with Mae, and laughing until her belly hurts. She should be helping her Daddy make her favorite foods and picking out the most complicated birthday cake. She should be getting ready for grade 1. She should be here, but she's not.

Instead of planning a party and loving every minute of it, we struggle with how to mark this very special day. How do you celebrate a birthday for a child that is so loved but not here? How do we honour and celebrate Phoebe's life? How do we let her know that she is loved beyond measure and missed every single moment? How do we include Mae in all of this and hold back tears? How do we make it joyful when all I want to do is pull the covers up and cry.

We miss her so much. 

How do you parent a child who has died? I struggle with this every day. I struggle with the need to be Phoebe's mom, to care for her, to mother her even though she is not physically here. And while this is true, to me she is here in every other sense. She is here in my thoughts, my heart, my life. She is mine and I am hers and that will never change. And so, I mother her. I keep her things safe. I carefully frame and display her artwork. Photographs of her fill every room of our home. We plan to create a garden for her, complete with a carved stone by her Daddy. We plant trees. Her drawings still hang on the fridge, like she just created them. I imagine her lying on her tummy with her legs in the air - coloring and drawing. I picture her standing tall against the door frame to see how much she's grown. I imagine her telling stories and singing songs with Mae. She is present in our lives, in our house - but then she's not. She is everywhere and nowhere all at the same time. I tend to the plants at her graveside - I water them and after I do, I sit down and talk to Phoebe. Sometimes I sing to her. Sometimes I read. To some this may seem crazy, some people tell us we should move on, but there is no moving on from this and to me, all of this is all I can do to keep from going crazy. We spent every single moment with Phoebe while she was here. We did not leave her side. We relished every second we were able to be with her. Now that she is gone,  we still need to be with her, but we struggle with how. 

We started the Phoebe Rose Rocks Foundation (we are almost all set up with approval from Revenue Canada) so that we can help other families, because no one should ever suffer like Phoebe did, because we need a cure, because Phoebe asked us to "make it okay", but truly I also started it because I need Phoebe's legacy - her life and her memory, to continue. It is another way that I can parent my child who should be here, but is not. 

This new life we have is so hard. It's painful. Each day we wake up with the realization that Phoebe is really gone. Sometimes at night, when Phoebe visits me in my dreams, I can imagine for a brief moment that she's here. I soak in this moment, but then, the sun comes up and I am hit hard with the painful reality that she's not. She should be, but she's not. 

Grief is heavy and hard and it fills every space. Every single crack. It is all encompassing and keeping it in check is exhausting. I spend most of my days pretending that everything is okay. It's not. How could it possibly be okay? No one wants to hear stories of children with cancer and when people ask that innocent question of how many children we have - no one is expecting - two, one should be here, but she died. And so, on the outside we are "fine". We ride bikes with Mae, we play at the park and shop for groceries - we need to do this because the world just keeps turning, but on the inside we ache. I ache physically and emotionally from the sheer effort of pretending. My body literally hurts. My heart hurts. I can't catch my breath. I fight back tears.

And so, this Monday August 8th there will be no excited little girl anxious to start her day as a 6 year old. Phoebe will not instruct us on what she would like for her birthday breakfast and dinner. Instead we will prepare her favourite foods knowing so well that sushi, bean salad and pulled pork will never be the same. We will honour our sweet girl however, like we do every day. We will honour her memory and her life and we will continue to do all we can to make it better.

We will do as Phoebe taught us and look for the joy. We will surround ourselves with the quiet and peace of nature with the hopes of finding our girl. And of course there will still be joy because Mae wouldn't have it any other way and because joy is always found in the memories we cherish of our sweet Pheebs. 

But we will never be the same.

Thank-you to everyone who has sponsored a hole, donated, provided items for the silent auction, and signed up to golf at the first annual Phoebe Rose Rocks Golf Tournament. We are looking forward to a great day and excited to give back and raise money for childhood cancer research. All money raised will be donated to Dr.Jason Berman's lab in Halifax, Nova Scotia and we hope to raise enough to direct to MLL+ leukemia research. For more information on Dr.Berman's groundbreaking lab and research, please visit http://bermanzebrafishlaboratory.pediatrics.dal.ca

To register to golf, donate, or sponsor a hole please visit https://golfmontcascades.golfems2.com/event/phoebe-rose-rocks-foundation-first-annual-tournament




5 comments:

  1. Your words are from the heart - your love for your family shows how Phoebe will never be forgotten but will be with you ever step of the way finding a cure to make it "okay". We are grateful you share her love and smiles with the world. Bless your beautiful family

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  2. I'm sorry we have this tragedy in common. Found your blog because of the Healthline "best leukemia blogs" list we are both on, came here to compare and contrast our experiences.

    It'll be one year since my two year old son's death in a couple weeks. We do what we can also, raising money for charities and what-not, but
    It's never enough. It's just a way to cope and move forward.

    I wish you all the best in your journey. Take care of yourselves. And thank you for sharing your story.

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    Replies
    1. Thanks for reaching out Sean. I have followed Dominic's journey and I am so sorry that we both understand this pain and heartache.

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