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, August 7, 2020

Ten




It’s Phoebe’s tenth birthday. Happy birthday to our beautiful Phoebs. 


Phoebe would have been a spectacular ten year old and she would have absolutely loved being ten. Instead, she celebrated 5 birthdays and we have lived almost five years without her. Very soon, she will be gone longer than she lived. Knowing this is true seems impossible. It is more than heartbreaking or devastating, it just feels impossible. I mean really, how is it possible that we have lived this long without her? How is it possible that we will keep on living without her? 


Writing about Phoebe and about our grief is hard and it gets increasingly more difficult as time passes. Just like my living kids, I want to share milestones and moments. I wish I had photos and stories. Instead I have 5 years, 3 months, and 10 days of some breathtakingly beautiful and some absolutely heartbreaking memories, photos, stories, and moments. I have a lifetime to grieve and to wonder what if. 


I thought instead of sharing my deepest and darkest thoughts about grief and how it will never truly end, I would just write about Phoebe. I think this might be easier. 


I miss everything about her. Every. Little. Thing. But, here are a few highlights.


Her laugh. Phoebe’s laugh was the best I have ever heard. It came from deep within her tiny self and made everyone around her laugh too. She would often throw her head back and get her whole body into it. Even as a baby, her laugh filled a room. She could be quite serious at times, but when she laughed, it just made the world better.


Watching her eat. Phoebe was a true foodie and she loved to eat. This is surprising to some given that she was tube fed for much of her life, but when she had the chance, she would try anything. She loved to cook with her Daddy and I miss this so much too. 


Singing. Phoebe’s favourite band was Weezer, but she loved all music, and she loved to sing. I still find myself glancing to the backseat when one of her songs comes on the radio. 


Watching her grow. This will never get easier. I miss watching her grow and learn and being constantly amazed by her. 


The beautiful love she shared with Mae. I will always be grateful for the closeness that Phoebe and Mae had together. They were inseparable and Mae misses Phoebe everyday.


Cake. Phoebe loved elaborate birthday cakes and even if what Jon and I created was far from the photo inspiration she found on the internet, she loved it just the same. This year, Mae designed, planned, baked and decorated a “campfire themed cake” for Phoebe’s big day. It is incredible. 


Sitting with her. Just sitting and watching a show or reading a book. 


Breakfast. When we lived in Memphis, Phoebe started a breakfast tradition where we would alternate making breakfast in bed. She would make breakfast with Jon for Mae and I, and then the next morning we would switch. Phoebe would shout, “good morning!” at the top of her lungs as she woke. It was the best.


Freeze dance. 


Her voice. I miss talking to her and listening to her sweet little voice. She had so many questions and even more incredibly thoughtful observations about the world around her. One of my personal favourites is when she told me “if there’s no bugs, there’s no people” and then went on to discuss in detail the many wonderful things worms, bees, and dragonflies do for the world. 


Hugging, holding, rocking, singing, cuddling, smelling, kissing. 


Running after her. Running with her. Chasing her bike. Carrying her when she was tired. 


Holding her hand. 


Putting her to bed. Waking up with her in the middle of the night. Waking up with her in the morning. Watching her sleep. 


Colouring, crafting, and watching her draw. Phoebe was an artist, even at 5 years old. 


The little smiles she would give from across the room. 


How particular and matter of fact she was about so many things. Birthdays could only be celebrated once and on the actual day. She was very clear about this. 


Her wise eyes and how she would take everything in. 


Her sense of humour. After being in patient at St.Jude for weeks, Phoebe decided she wanted to play some tricks on her nurses and doctors. With Mae’s help, she hid plastic bugs under her blankets, so when nurses pulled them back to check vitals ... surprise! She even convinced us to stick bugs to door handles and watched in delight as her doctors and nurses squirmed, wondering if they were real. This escalated to battery powered bugs that scurried frantically all over the floor. 


Her big heart. Phoebe wanted to (and then did) feed all of the squirrels at the Target House, she brought water to birds when it was hot outside, and if someone said “ouch”, Phoebe was the first to ask if they were okay. 


Her energy. Phoebe often seemed unstoppable. She had an uncanny ability to look perfectly well even when she was very sick. She played hard. She lived joyfully. She taught me so much. 


Caring for her, taking care of her, being her caregiver, advocating for her, teaching her. 


Everything. I miss everything.


Happy birthday, Phoebe. Being your mom is a gift. We love you and miss you and wish so much that you were here. 







3 comments:

  1. Happy birthday Phoebe. I love reading about you and your humour and wisdom and courage 💕 what a lovely cake Mae! love to all ❤

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  2. Happy birthday sweet Phoebe! 🎉🥳 That is an incredibly wonderful cake Mae! Wow! Phoebe is loving it, I am certain of it! She is such a lucky girl to have chosen you all as her family! Forever remembered! 💞. Chantal

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  3. Happy birthday Pheobe! ������
    She would def approve of Mae’s theme cake ��❤️
    Thinking of you guys often ... I still don’t know how you do grieve and live with such grace. Thank you for sharing your memories of Phoebe. Xoxo

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