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.

Friday, May 6, 2016

Mother's Day ...

My first Mother's Day without Phoebe and it still doesn't seem real that she's not here. 

I miss everything about Phoebe. I miss her voice, her smile, her touch. Her laugh. How she felt in my arms. The tight hugs she would give - her little arms wrapped around my neck. I miss making her favorite foods and watching her cook with Jon. I miss watching her eat and how she loved her food. I miss helping her. I miss talking with her, drawing with her, and her wise ways. I miss taking care of her. Being with her. I miss hearing her sing from the backseat and shouting "turn it up!". I miss dancing. I miss watching her play and laugh with Mae. I miss putting her to bed at night and waking up with her in the morning. I miss running after her bike, holding her hand, carrying her when she was tired, rocking her to sleep, pushing her stroller. I miss every. Single. Thing. 

This place we are in is very lonely. It is a long and hard road and we are just at the beginning. We are only just learning to live without Phoebe, but as I write that I want to scream - No!! This is not how it is supposed to be. 

Imagine waking up every single day without your child. Imagine going to sleep wishing and praying you will see her in your dreams. Imagine wanting to stay asleep because this is when you see her. Imagine searching for her, for signs of her, but knowing that these signs will never satisfy your longing. Imagine never being able to hold your child's hand again. Imagine never receiving another handmade card and treating the ones you have like the most precious glass. Imagine the only connection you have with your child is through her things. Imagine inhaling deeply the scent of her clothes and toys, just to feel close to her. Imagine needing someone you will never have again, with every breath you take. Imagine the pain and heartache. It is impossible. 

The empty seat at our table will always be empty. Mae will always miss and need her sister. Jon and I will always long for Phoebe. We will always feel guilt and regret and sadness. This does not mean that we won't or don't feel joy, of course we do, we have Mae to remind us of this, but the emptiness that remains is not easily or even possibly filled. How do you fill a space that once held a precious child? You don't. I have heard that we will learn to carry our grief, but I also know that this is the hardest thing we will ever do. And its hardness will last a lifetime. 

Today I finalized the details for Phoebe's headstone. The most unnatural thing in the world is done. Phoebe's name, date of birth and date of death will be carved into stone. Her favorite things - a monkey swinging from a tree, butterflies, a squirrel  and three little birds will also be carved. This was no easy feat and I would like to thank the staff at the Beechwood Cemetery and Rock of Ages for their compassion and kindness. We heard many times that extra care and attention was taken to make sure this stone is perfect for our special Phoebe. We were told that every one working on it knew about Phoebe and was touched by her life and her death. I know that as wrong as it feels to create a grave stone for my five year old, Phoebe would love that it incorporates her favorite things. 

Carved at the bottom of the stone are words with a meaning we learned from Phoebe and Mae. Words they help us to live by. Words that remind me that this incredible ache and the pain I feel are because we have a love so great. 

All you need is love.

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