How to help your terminally ill child die with grace ...

Is it crazy that I would like to write book titled something like the above title? I am not sure that anyone would publish it and not sure that anyone would want to read it when they really would need to - and there probably are books like this out there in the palliative care world. But despite all of that the idea keeps bouncing around in my head.

I suppose the thought was triggered this time by hearing about yet another couple walking a cancer journey with their young daughter. A friend of mine writes for the Toronto Star and she posted on FB how she was going to interview Ellen DeGeneres in front of 6000 people ... the next day I checked out her story in the Star and it was less about Ellen (perhaps that story is coming) and mostly about the couple from TO who she took with her to the interview and managed to get in to meet Ellen - as a way to try to bring them a few moments of delight and diversion from the nightmare they are currently living. In June their 2 year old daughter, Stella Joy, was diagnosed with an inoperable and untreatable brain tumour and given months to live.

I read one of the mom's blog postings about all of the fears she is currently facing - am I strong enough to do this? how am I going to watch my child die? am I going to forget them? how do I make sure I don't? how will I ever walk by another playground again? who will i be if I am not their mother?  - my heart ached for her so much. Having walked through the forest of those same questions, wondered those same things myself. I wanted to reach through my computer to hug her and let her know that, yes, you can do it. You won't believe it but you will. That through grace you will reach the other side - that in three years time you will come so far, you will be amazing. You will be the same person but also an entirely new person, but we all are - three years hence, aren't we?

There is so much I wish I could tell her - but so much I know she just has to walk through, experience and get to the other side. There are some things you can't know about until you experience them. You can't know how you will do it, deal with the death of your child, until you do.

Back to my book idea, my crazy book idea. We didn't know anything about how to help Harry die. We had so little time to prepare. I know that sounds crazy - he was sick for nearly 6 months so how is it that we didn't have time to prepare? But the nature of a walk with cancer is such there are places you can't go until you are forced there. I couldn't let myself start thinking about how I might help Harry die until it was clear he was really not going to stay. The crazy thing was, that started to materialize for me, really the day before he died, and only vaguely then.

Things changed so quickly - in two weeks we went from the 'there is nothing more we can do' conversation to Harry's death. We hadn't had time to really process the concept that Harry was going to die. We hadn't had time to accept it before it was upon us. Harry died so quickly we didn't even have time to get set up with hospice / palliative care.

But despite all of that - I think we did many things 'right' around Harry's death. But there are also some things I would have done differently, had I known.

We don't talk about death and dying much and pretty much not at all about the death and dying of children. But it happens each and every day. I want family's to know about how to keep your child at home. About how to comfort them. About how to find ways to say good bye. About how to take your time. How to cherish each passing moment. Apparently there are stages to dying that I think we should have known about - if we had it would have been more obvious perhaps that he was dying.

I think one of the best things we did was to keep Harry at home for nearly 24 hours after he died. We got to sleep with him in our bed one last time. We got to wake up with him one last time and have one last family cuddle in the morning. I know that might sound really morbid - but you can't know how much we cherish that last good bye - how much I think it helped Lydia especially to have 24 hours to say good bye to her brother. A number of close friends and family got to come and say goodbye.  I don't want to suggest that all family's need to do what we did - but that finding the right way to say good bye is important - and taking the time you need to do it - not being pushed by someone else to hurry.

Anyways - it is just this crazy thought bouncing in my mind - must be the heat!

peace out,
Cynthia

Angel Day Number Three

Today marks Harry's third Angel Day. Unbelievable. It feels like time has folded and we very quickly got from there to here.

It is another lovely August 3 in Winnipeg. Hot and sunny, though it did rain mid-day. Sebastien is sleeping and Lydia is waiting to go to the wading pool. In some ways our life isn't much different from three years ago. Though of course it is entirely different.

We are entering uncharted territory. Sebastien passed his 16 months birthday on July 25. I didn't realize until the day passed how much stress I was holding over this milestone. He is now officially older than Harry ever was. He can walk and is learning to talk, he can feed himself and climb up and down a slide and almost climb out of his crib too. He is a bundle of joy. He is so like his brother.

We want to do something for the kids today to mark this milestone - go to a park, play in the pool, enjoy our beautiful neighbourhood - the places that Harry loved.

We have come far, though our hearts still ache for Harry. We try our best to live in a spirit of positive hope and love in his honour.

We miss you Angel Harry. We love you.

Love and hugs and rainbows,
Mum mum mum.