Writing about Phoebe started as a way to keep family and friends informed on all that was happening, but then it quickly became something more. For me, it was therapy. Writing helped me to feel like I was doing something, and even if it was just getting words out, I felt useful. I was the story teller and it was a joy to write about Phoebe. I wish I wrote more. I wish I shared more of her wit and personality. I honestly don't know if I can write about grief and what is left now without Phoebe. I think, like before, that it could be therapeutic, but it's sad and personal and unlike before where I shared Phoebe's story - this time it's mostly me. And it's hard.
It has been one month of missing Phoebe. One month of longing for her with every breath I take. One month of holding on.
It still feels like a nightmare - it most definitely is a nightmare, but it still feels like one I might wake up from. Despite all that Phoebe had been through and all of her many obstacles, I honestly never thought she would leave us.
Phoebe's death has opened my eyes to the world around me and I notice things I never did before; probably because I look for Phoebe everywhere. Not the Phoebe I need and want, but a sign, anything that will let me know she is here. The sound of the wind in the trees, sunshine through dark clouds, the hint of a rainbow without a drop of rain, three birds - always three, darting across the sky, the cardinal that visits us often, the sky lit up and painted, the brightest stars - to me they are all Phoebe. Noticing these things reminds me of the light that is still here, and so I hold tight to the belief that she is with me.
But, just like I feel Phoebe everywhere, everything reminds me of Phoebe. When I venture out of my house I am flooded with memories - places we have been, times we shared, food Phoebe loved, toys she would have wanted this Christmas, songs on the radio she would have loved and danced to, songs she did love and dance to, songs she would have told me to turn up, and others that would have her say, "no Mama, not this one". The empty space in the backseat, the empty seat at the table, our quiet house that was once full of the best kind of noise and chaos. The treasured Christmas ornaments Phoebe made that will forever be handled like they are the most breakable. The Christmas lights. Phoebe loved Christmas lights. Sometimes it feels like torture and it often appears so as it can leave me a mess of tears, but it's a welcome torture because it's all about Phoebe and so, I let the waves wash over me.
Just as there is comfort in the idea that Phoebe is with us, there is the constant reminder that she's not. She is not here, or not in the way that we need and want her to be, and to long for something, to need something that I will never have again - is impossibly hard. And in many ways, it gets harder with each passing day.
I used to wonder why people say a child is lost when one dies. I have said this myself many times, but Phoebe is not missing. She is not lost. We don't need to simply look for her in the right place and there she will be. Found. Safe and sound. But then, when I find myself looking for her everywhere, when I search for and long for signs of Phoebe - when I wish to find her in a dream, it seems that in some ways, she is lost. She is lost in a way that I will never find. Or more likely, I am terribly lost, and Phoebe is gone.
I miss her so much.
We are taking things as they come and doing what we can to honour Phoebe each day. Sometimes honouring Phoebe means getting up, making coffee, and facing the world. Sometimes it is putting up as many Christmas lights as we have because I know it would make her smile. It always means loving and caring for Mae and as Phoebe would insist, making sure she does her school work. Sometimes it is thinking about what's next. Phoebe would not want us to lay down and give up. She would want us to try. She would want us to live. She would want us to find the joy and happiness instead of the anger and hate, and as hard as this is right now - I will try. Everyday, I will try.
We are thinking about forming a charitable foundation in memory of Phoebe with the goal being to raise money for childhood cancer research while helping to support families like ours, who need to travel far from home to receive treatment. What happened to Phoebe and how hard she fought, is not okay. It never will be, but maybe we can make it better for someone else. All of this is a dream right now, but one that we hope we can make happen.
Phoebe fought cancer for five years with outdated medicines. There truly was never an answer although we searched and searched and searched for one. There continues to be very few, if any, real answers that solve relapsed MLL + leukemia - in addition to the too many other childhood cancers for which there is no cure and this needs to change. We truly need to do better and I believe we can.
If you would like to give a gift of hope this Christmas, in memory of Phoebe, please follow the link below to donate to St.Jude. If you are donating from Canada, you need to reset the country of residence from the US. All funds raised will be directed to Dr.Gruber's lab and infantile leukemia research.
Thank-you for keeping our family in your thoughts.