My Story

Carmen was diagnosed with Krabbes disease when she was 5 months old, and passed away when she was just 10 and a half months.  Please click 'my story' to learn more about sweet Carmen, and 'resources' to see her on youtube.


"Deep in their roots all flowers keep the light" - Roethke

Journal

Monday, June 29, 2009 8:48 PM, CDT


Rainy days make me sad.  I don’t know if it’s the gray skies or the change in air pressure, but it just seems harder to focus on the positive.  I’ve really been feeling the loss today like I’m hollow and fuzzy on the inside…it weighs the heaviest on my eyes.  I feel sad from the inside out: for Carmen, for me, for Ella and Mick, for all the others I’ve met who’ve suffered the loss of a child and more…it’s taken it’s toll on me today.  But most of all, I just miss that baby of mine to bits.

 

Last week I was woken in the middle of the night by a cry from Mick’s room.  When I got there, he was sitting up on his top bunk sobbing saying “I miss Carmen”.  It broke my heart.  He’s been asking when Carmen’s going to come back.  Then, one day he asked when we were going to bring her back from the hospital.  When I go to my weekly meetings with palliative care Ella and Mick come with me and go to the hospital playroom.  Every time I sign them in the attendant asks for the patient name.  I love this (sarcasm), especially after telling them I’m there for a meeting with palliative care and bereavement, and then even more so when I say ‘Carmen Crilly, but she’s deceased’ and they react with shock.  But Mick and Ella hear it, and they know I go to meetings ‘for Carmen’, and Mick thinks that one day when I come pick them up I’ll have Carmen with me.  If only magic wands and wishes were true. 

 

I’m off to bed for my own session of tears for Carmen, and I’ll go to sleep hoping for sun tomorrow, inside and out.  Today is just one of those days that you can’t deny…you just have to let it happen.  Grief is exhausting.  But, tomorrow is a new day, and I’m hoping Carmen, that when I see your picture I have the strength to mirror that beautiful smile of yours with my own.


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Please feel free to leave us a message! Our journey with Carmen taught us the true importance of friendship and support, and we'd love to hear anything you have to say.

thanks, Catherine, Bill, Ella and Mick

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HOSPITAL INFORMATION

Hospital for Sick Children
Toronto, ON