Remembering with tears. Honouring with laughter.

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Yesterday the world lost another beautiful child as a result of CMV, cytomegalovirus. This is the same virus that damaged my son Brendan Bjorn’s brain in utero. Her name was Sami, she was 8 years old, and I had known her since she was just 14 months old.

My heart is broken.

I started this blog 4 years ago in part because I wanted to share with the world what it is like to be on this journey of life with a child who has a life-limiting condition. Yesterday was a painfully stark reminder that, despite going day to day focusing on life in the moment, there is indeed a day like this ahead for my own family. It is that fact of this often cruel life which has me shaking since I heard the news of Sami’s passing.

I remember the first time I met Sami. It was at the 2011 family gathering (called Making Tracks) for those of us with children affected by congenital CMV. The CMV Foundation, which I had established and ran, held this annual gathering so we could all connect, learn and share. So there I was standing at the hotel room door talking to Sami’s mother, Richelle, when Sami – who was laying on the bed – went into what’s known as an infantile spasm. Instinct kicked in and manners went out the door as I walked straight over to Sami and rolled her onto her side to help her ground herself in her surroundings. (You may or may not know what I mean, and that’s ok). From that moment on, the bond was there with both Sami and Richelle.

Having a child with a life-limiting condition is the ultimate in what is not fair about life. It is not the proper order of how life should unfold. Yet, here we are: A precious little girl has gained her angel wings while my son…her beloved friend for years…manages to hang on, his lessons for us not yet complete.

I do believe children like Sami and Brendan are here to teach. 

It is not our job to teach them, for what we can learn from them is far more valuable than anything we might hope to teach.

As such, I have come to realise that one of the saddest parts about this journey is when other people aren’t open to learning what our special children are here to convey: Unconditional love, acceptance, and truly understanding the gift that life is.

This is an indescribably hard journey and I am still learning.
Sami has taught me.
Brendan Bjorn will continue to teach me.

The journey with a child who has a life-limiting condition is hard to fathom for those outside of this path. Signing a DNR (do not resuscitate) form on the child you brought into the world. Choosing the song to be played at your child’s funeral years before it happens…because you don’t know when it will happen. Fighting tooth and nail on a daily basis to keep your child alive, to give your child the best life possible, knowing how it all will end one day, some day, some unknown devastating day that could be tomorrow or could be 5 years from now, no matter what you do. And for some of our families, making the hardest decision imaginable deciding to transition your child into hospice level care rather than continuing on struggling with illness, seizures, surgeries, hospitalisations and pain.

Last night, I put my head on Brendan Bjorn’s chest and I cried uncontrollably. Truth be told, he laughed at me while I cried, but that’s part of his beauty. He made me smile as I told him about Sami having gained her angel wings. I shared memories with him. More smiles. More laughter. I think that is how Sami would like it to be as we remember her.

Fly high, angel. Fly high. 

Sami me and Brendan 2012

 

One thought on “Remembering with tears. Honouring with laughter.

  1. Bridget

    Deeply moving heartwrenching piece if writing. Given the real life situation of the author she has captured reality in a beautiful way

    Like

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