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.

Monday, March 7, 2016

112 days ...

I have been sick with the flu for the past week which has allowed me a lot of time to think and reflect. And cry. I have done a lot of crying. I learned that it's true - getting out of bed and breathing in fresh air really does help with feelings of overwhelming sadness, but when you can't get out of bed due to a debilitating flu - it's hard to escape.

Today marks sixteen weeks without our precious girl. 112 days without her touch, her smell, her voice. 112 days of living without. At times, it seems impossible. Impossible that it has been this long yet it already feels like a lifetime. 

I often visit Phoebe's room and sit among the clutter. The years of boxes from Memphis. Dresser drawers filled with clothes that have long been too small and a closet full of big girl clothes waiting for a return that never happened. Her toys and books. Her artwork and creations. The stickers she "accidentally" stuck to the floor. The pencil scratches on the door frame that followed her and Mae's growth. 

When Phoebe was healthy and well, her big sister convinced her to share a room and so we squeezed her bed into Mae's room. I remember asking them if they had enough space, and each of them assuring me that it was a perfect fit. It is truly the only time that Mae has ever slept through the night. Now, with Phoebe gone from this treasured space, she needs Jon or I to stay with her, as Phoebe once did. And so we do. 

We are taking things one day at a time. We have more time than we have ever had before, but are often at a loss with what to do. Our roles as caregivers, our identity for so long, is gone. Phoebe needed us to care for her, especially in the final months of her life, and I would return in a heartbeat to that world if I could. Despite all that happened in Phoebe's life, I truly never thought she would die, or at least not as soon, not as quickly, not in Memphis, and so I still feel like I should be caring for her. I am still catching my breath. 

Today though, today Mae needs us, and I am grateful for this. Mae helps us through and in many ways, she always has. 

We are picking up the pieces and I imagine we will be gathering up and rearranging the fragments of our broken lives for a very long time. For the rest of our time. I know that these pieces will never fit together as they once did again, but I hope that one day, we will find a way to help them fit in a new way.

Something that helps me to cope, at least right now, is honoring Phoebe. Each day I try to honor her - sometimes it is in small ways. I feel the sun on my face and remember how Phoebe loved to play outside. I try to share our story, raise awareness, and do what I can to honour Phoebe's and our desire and need for it to be okay. I am not yet shouting it from the rooftops, as we once did, but I'm trying.

To honor and remember Phoebe in bigger ways, we are embarking on the long process of applying for charitable status, and in the meantime, Phoebe Rose Rocks has a Facebook page at www.facebook.com/phoeberoserocks
This page will update Phoebe's friends on events, fundraising, and other activities done in Phoebe's honor and memory. 

There are no words for how painful this is. There is nothing I could write that would accurately describe the incredible ache and the longing I feel each day. My heart is simultaneously broken and full of so much love, and this love reminds me that there is always light and reason to hope. 

We love you and miss you so much, sweet Pheebs. 

"There is a crack in everything. That's how the light gets in". Leonard Cohen 

Out first event is Childhood Cancer Canada's head shaving event, and guess what? We are looking for team members to join Phoebe's daddy, grandpa and friends. If you are interested in a brave new cut just in time for summer, or even a new look (we have a team member shaving his lifelong mustache!) please join us and help raise money for much, much needed childhood cancer research. For more information or if you would like to make a donation, please visit https://m.akaraisin.com/11683/team/102348#.Vt2_ZUW8SUM.facebook

Team Phoebe Rose Rocks going bald over the years... 

1 comment:

  1. So touching and written from the heart. What a lucky girl to have an amazing big sister and parents. She is your family's guardian angel smilling from above.