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.

Monday, November 7, 2016

One year

On Friday, we will have spent an entire year without our precious Phoebe. A year. I'm still not sure how this is possible. I still think I must be having a nightmare. I still expect to see her, hug her, hear her voice - I still look for her everywhere.

Yet, we get up everyday and greet the day. We take good care of Mae and love her with everything we have. We honour Phoebe's life and legacy with everything we do. We put one foot in front of the other despite how painful and exhausting this can be. We look for the joy, as Phoebe taught us. We have come to understand that our hearts will never fully heal, but in those places where we are broken, I imagine that the great big love we have for Phoebe is building pathways around this pain, helping us to breathe in and out, and find our way. I know that Phoebe would want exactly this. 

As time passes, the reality that Phoebe is not here has become painfully clear and because of this, at times, the grieving process is so much harder. The reality that, in this lifetime, we will never see Phoebe again, never hear her sweet voice in the present, hold her, kiss her, hug her, listen to her wise stories, watch her grow, and hear her beautiful laugh - is unbelievably hard to accept. How is this possible? I can't accept it. I will live with this reality, but I will never accept that I don't get to watch Phoebe grow up with all of the beauty, chaos, and worry that would surely come with this. I would do anything to be given the gift of seeing the beautiful person Phoebe would become, year after year. I would do anything to argue with my teenage Phoebe. I would do anything for just one more day. 

This year has allowed us a lot of time to think. I have learned that grief is not a neat little package of stages that we work through to a conclusion of acceptance and then move on. I have learned that losing a child is not something that can be overcome, rather it is a weight that can only be carried. It is a lifetime of missed moments and within those moments; heartache. I imagine and I hope that I will get better at carrying this weight, but I know that, for as long as I live, every occasion or moment that Phoebe is missing from, everything, be it Christmas, birthdays, first days of school, walks to the park, bike rides, bed time, Halloween, days at the beach, or just simple mealtimes - her absence, and this weight, are simply unbearable. 

As the date of Phoebe's death approaches, I am overwhelmed with flashbacks to those finals days, moments and hours. The last night we spent together. The last week. Phoebe's last breath. Moments of heart shattering desperation and helplessness. Moments of clarity and peace. Moments that no parent or child should have to endure. I wonder if we could have done more. I worry that we didn't do enough. I wish we had more time. We had been hearing terrible news regarding Phoebe's health for years. We had many talks with doctors about end of life before it was our time, that when it was Phoebe's time, we were very much in the dark. Everyone in the ICU knew that Phoebe was dying, except us. We still believed and hoped and prayed for one more day. We even tried to get Phoebe home, but in the end - just like everything else - Phoebe left us on her terms. 

We miss her every single day. Every moment. She is present in everything we do, yet her absence is profound and painful. She is everywhere and nowhere all at the same time and it often takes my breath away.

Mae talks about her love for Phoebe and her sadness every single day. At bedtime, she wishes out loud for Phoebe to come back - even if just in her dreams. She worries and wonders if Phoebe is okay. She talks to Phoebe and hears her voice and despite her sadness, despite all of our sadness - we continue to look for and choose joy and hope. Phoebe would want exactly this. 

On November 18th (and every day because the world needs it) please spread some extra love and kindness in honour and memory of our sweet Phoebe. Surprise strangers with a random act of kindness, tell them Phoebe sent you and ask them to pay it forward. We would love for you to share your kind acts with us on facebook or twitter @phoeberoserocks. Say Phoebe's name, share her story. Give the best gift and sign up to donate blood. Make a donation to childhood cancer research - you can give to our run for St.Jude at http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2109846&pg=personal&fr_id=59186

Hug your kids and your loved ones - hug them tight and then hug them again. Never miss an opportunity to tell those you love just that. Be thankful. 



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