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 7, 2019

Nine

Tomorrow is Phoebe’s ninth birthday. Nine. I can hardly believe it. She would have loved being nine. I can just imagine her soaking up all of the newfound freedom and independence that comes with being a year older. As a five year old, Phoebe was fiercely independent and wise. I can only imagine her at nine. I can only imagine. 

I think about Phoebe every single day, as parents do about their kids, only my thoughts are often consumed with questions and sadness. Phoebe isn’t here. As time marches on, I am learning how to manage these thoughts as I try to move forward and keep it together. Literally. I need to do this, so I can keep it together. We go about our days, and from the outside looking in, I think we appear to be a “normal” and happy family. We do often get comments about the large age gap between Mae and Penny - things like, “you waited a long time” or, “that’s smart because now you have a little helper”, or perhaps the most painful, “a lot easier than having two close in age”. The explanation to these comments leaves strangers feeling awkward and sad and probably regretting they asked, but for us the age gap between our living kids is more than a convenient lack of tandem diaper changes. We are forever aware of the person who fills this gap. Our beautiful Phoebe. I often imagine her in between her sisters, laughing, heads tilted toward each other, sharing secrets and snacks. As it should be. 

That there is a missing piece is perhaps most obvious to Mae who lost her best friend and partner when Phoebe died. She is resilient, but lately, her often joyful and resilient exterior has begun to crumble slightly, revealing immense hurt, regret, and sadness. She is aware of the unfairness of it all and that her would be nine year old sister should have sat beside her on the rollercoaster this summer, or walked with her to the local pool, shared stories, rode the school bus, graduated to the next grade, and that she didn’t, is painful. Mae quietly struggles with this and parenting while also grieving is at times overwhelming. More than that, it is heartbreaking. Mostly because I know that other than be there when she needs me, there really isn’t anything I can do to fix her harsh reality. When Mae asks me hard questions like why couldn’t we help Phoebe, I don’t have any answers. Perhaps the most devastating is when she cries at night because she just can’t remember the sound of Phoebe’s voice, or picture her face when she closes her eyes. She says she’s afraid she will forget her face and it takes everything I have not to completely fall apart with grief. How did this happen? 

Mae and I went to Roger Neilson House today, to meet with a memory quilt volunteer. Carrying bags of Phoebe’s special clothes, each piece filled with precious memories and moments, we sat with a volunteer and shared stories of Phoebe while holding her little things. The volunteer asked to see a photo of Phoebe and she spoke to Mae with kindness and understanding about how difficult it must be to lose a sister. We both left feeling a bit lighter and I realized when I got home how long it has been since I have spoken about Phoebe to someone who didn’t know her. How long it has been since Phoebe’s name wasn’t followed by awkward silence or sadness. We shared memories and stories and it meant everything to me and to Mae to laugh when remembering how much fun we had with Phoebe. The quilt will be a beautiful gift, but sitting with this woman and being able to share our sweet Phoebe was a gift too. 

Phoebe’s birthday is a difficult day, but it is also a day that reminds us of the incredible little person that we got to call ours. The day that Phoebe came into this world was one of the happiest of my life. That I got to be her mom, to hold her, and care for her, to love her and be loved by her is worth this sadness and I would do it all over again (and again) if I could. If only I could. For Phoebe, I am forever thankful. Our immense grief and sadness is so because of the great big love we shared. 

Do something kind today, in honour of our sweet Phoebe. She would love that. 

Happy birthday, Phoebe Rose. 

We work really hard to honour Phoebe’s memory by giving back and funding childhood cancer research. You can help by joining us at our annual golf tournament. It is going to be an awesome day and we need your help to “make it okay” https://canadiangolfclub.com/collections/phoebe-rose-rocks

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