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 1, 2018

8 Should be Great.

Phoebe's 8th birthday is approaching. I don't need to look at a calendar to know this, instead, I can feel it. My heart knows that, once upon a time, I counted the days until Phoebe arrived, two weeks behind schedule, on the 8th of August. My mind knows that once, I spent this time planning parties and searching the internet for elaborate cake ideas. Cake ideas inspired by requests spoken in the sweetest of voices; "Mama, do you and Daddy know how to make a wiggle cake?". Wiggle will forever be code word for minion, and that year, Jon and I pulled off the most impressively ugly, coloured with turmeric instead of chemicals, love filled Minion. We basked in the glow of Phoebe as she blew out her 5 candles in one impressive breath. She was a super hero. 

We hoped for so many more, but that was the very last birthday we would spend with our precious Phoebe. As we approach the third birthday that we will spend without her, it pains me to know that we are over halfway to the day that Phoebe will be gone longer than she was here. How is this even possible? 

My heart literally aches. It hurts. My memories are fading and as hard as I try to keep them sharp and fresh, they still fade because time marches on and Phoebe gets farther and farther away. How can I keep her here? How can I continue to remember her sweet voice, her smile, her laugh? What happens if the videos and pictures we hold so dear and depend on to see, hear, and remember her, disappear? This is one of my many nightmares, despite backing everything up countless times, and I often wonder, what grieving parents did before we were able to capture these precious images? Then I realize that all of the videos and photographs in the world can't comfort a grieving parent who only wants to hold and feel and breath in their precious child. 

In less than a week, Phoebe should be/would be turning 8. She should be taking the swim test at the local pool and walking there with her big sister. She should be going to summer camp, trying out the new neighbourhood ice-cream shop, picking new recipes to make with her Daddy, playing until the sun sets, pushing Penny on the swing and laughing as she screams her name. She should be here, but she's not.

I don't really think it's possible to ever be completely "okay" after losing a child, but I have found myself in moments of okay and I have even experienced moments of joy. In fact, I often feel joy and sadness all at the same time. I have learned that managing grief is constant. It takes work to control the relentless push and pull, to weather the many storms and emotions that often take hold without notice, and often, to pretend it's okay. It's exhausting. Pain, regret, and sadness are magnified and at times unbearable as occasions like Phoebe's birthday approach. I don't get to watch her grow up. I don't get to watch and smile and take photos of Phoebe as she blows out 8 candles. I have a photo of Phoebe blowing out 5 candles and when all of my other children have grown so big that we make jokes of candles taking over the cake, my Phoebe, she will always be 5.

I can't really imagine Phoebe at 8 because Phoebe is 5. She is feisty, determined and so smart. Phoebe loves Minions, Sid the Science Kid, Frozen and singing along to her favourite songs. She can build the most complicated Lego, like a boss. Phoebe's voice is sweet and feisty and she has a hard time pronouncing the letter l, saying "whittle", instead of "little" which is so endearing when you are 5. It is painful and heartbreaking for me to try to imagine what my daughter would be like if she were here and 8 years old because as hard as I try, I just don't know. We have already missed and ached for so much lost time.

And so, we exist in two places. We are in the here and now where we go about our days, raise our kids and watch them grow with a deep and profoundly thankful gratitude, we laugh often, and we struggle daily through the pain and emptiness of losing a child. 

And then we exist in the past, because this is when we were with Phoebe.

Living in the past doesn't mean we are stuck. It doesn't mean we can't and don't appreciate what we have here today and all that the future holds. We exist in the past because, in many ways, this is where Phoebe lives. We exist in the past because it is the only way we know how to keep our fading memories alive and the only way we can help Phoebe's baby sister know her, even if just a little bit. We exist in the past because we will never again have another photo, or memory, or experience with our sweet girl.

This August 8th, please take a moment to honour and celebrate Phoebe's birthday and her life by doing something kind in her memory. If you are able to, please consider giving blood. You never really know how precious a gift this is until the life of someone you love literally depends on it.

We would also love for you to join us in our quest to "make it okay". The Third Annual Phoebe Rose Rocks Foundation Golf tournament is coming up on September 9th at the Gatineau Golf and Country club, and all funds raised will support much needed childhood cancer research. Details can be found at www.phoeberoserocks.com