Honouring Macey

October 2, 2017

Macey came to Very Special Kids in January 2016 for end of life care, when she was just 11-years-old.

We know bereavement embodies a whole spectrum of emotion across a lifetime. It’s ugly, isolating cruel and relentless. It can also incorporate joy, tenderness, beauty, growth and resilience. The deep suffering felt by families symbolises the canyon of love they have for their child. Below is a tiny snapshot of what this has been like for Macey’s Mum and Dad. We thank them for bravely agreeing to share what’s in their heart.

My beautiful daughter, Macey, was diagnosed with a brain tumor December 2014, and passed away on January 15th 2016, one day after her eleventh birthday.  In some ways I feel that parental grief is still new to me, but mostly, I feel like I have been trying to deal with this grief for a lifetime. Below is a list of five constants for me, five things about parental grief that if I could, I would tell the world…

1. Hearing my daughter’s name in conversations is like music to my ears; a sparkling ray of rainbow light on a cold, drab day. Macey’s horrendous journey of medical treatments and procedures, of sickness, pain and suffering took its toll, so much so, it seems surreal. I often find myself questioning if I ever really had a daughter, if Macey was ever really here? To hear her name tells me she was here! She was loved and she is remembered.
2. The overwhelming pain of losing Macey is heart wrenching and debilitating. There are times when I am so consumed with this pain that I cannot do anything but sit and cry. I do not want to go anywhere, or do anything or speak to anyone.
3. People no longer treat me as they used to. Neighbours will cross the street in order to avoid me, friends will not return my calls and there are old friends that we no longer hear from. I understand. I know this is because they find it difficult to speak to me. They don’t know what to say. They don’t want to upset me… But what they do not realise is that I am always hurting, I am always upset and to avoid me only adds to my hurt, my pain.
4. Some days are better than others, and it is difficult to predict how a day is going to turn out. However, there are special occasions when we know it’s going to be extra tough (Christmas, Easter, Birthdays, Anniversaries, Mother’s Day and Father’s Day). I am always grateful for a sign from loved ones to show that you have remembered us.  A telephone call, a text message can just lighten the heavy cloud of grief. It reminds us that we are loved and supported.
5. People often say to me, “Oh, you are so amazing, how do you manage to keep going; to get up every day?”  The truth is I am not amazing. I am a mother to another child, who needs me, even more so now that he has lost his only sibling. I get up every day and put on a brave face. I take him to school, kiss him goodbye, and I go off to work. What people don’t see is that I am pretending.  I am pretending that everything is ok, and that I’m ok. I need to do this for Henry, for myself, but most of all I need to this as a way of honouring Macey.
   -Veneta Braybon