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
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8 comments:
I think this is a fantastic idea, Cynthia. Even if other titles like this exist, I think your writing is so sensitive and yet straightforward, comforting and yet informative. You're such a thoughtful writer and person and I think your words of wisdom would really go a long, long way to helping other parents in the same situation.
I hope you do it.
Cynthia, I love your idea. It could be such a good resource for children's hospitals to have. And, you are so right -it would have been useful to know the stages of dying. Although, at the time, I don't know if I would have believe them? (IF that makes sense. I knew he was dying, but yet, I still have hope he would pull through.) I'm so glad you got to have Harry home with you, we did the same with Degen - we had him with us for a couple days as well. It was a really, really nice way to say goodbye and have a tiny bit of closure.
I came onto your site originally to reply to your last post about 3 years without Harry - big hugs for you. I really hate having these *milestones.* I think about Degen so much, and sometimes i just burst out crying - I know you feel the same and must do the same. Life is just so unfair. Gretchen is officially older than Degen was, and it has been such a relief to get past that. I was constantly palpating her liver, checking her temperature, worried she looked anemic, etc. But, at the same time, I *tried* not to worry. I think we always will.
Sarah (Angel Degen's mommy)
Oh Sarah --
What a milestone for you to pass with Gretchen. It is so bittersweet no? We passed that milestone with Sebastien just back in July - when he turned 16 months. I can so entirely relate to you - I poke Sebastien's belly probably at least once a day (and am always relieved when he giggles at my pokes I figure that is a good sign) - to make sure it is nice and soft with no hard spots. Every fever I worry - is this the start then? I don't suppose we'll stop worrying for a long time. My husband Hank always tells me to have faith in Sebastien, faith that he has come for a very different purpose than Harry and to believe in him - that he has come to be with us for the long haul. It seems too good to be true some days - he is such an incredible delight. I hope you are enjoying every minute with Gretchen!
Really enjoyed the article you wrote about your decision to go into nursing - good luck - sounds like it is going so well!
Peace and love to you,
Cynthia
Hi Cynthia
Wow... I wanted to post and say, too, what a terrific idea to write your book. I find your writing so inspiring - you (and Harry through you) help me grow as a person. I would fully anticipate that your book would do the same thing
All the best
Karen (Ridd)
Hi Cynthia,
I am definitely enjoying every minute with Gretchen, she is just such a wonderful delight. And, I'm sure you are loving Sebastien and treasuring his giggles, smiles and laughs.
I find now I have such a different perspective on life and people's attitudes - I'm getting a bit 'short' (in my head only) with some of my friends. I had a really good friend complaining to me, in her sleep deprived state, how it's been a rough 5 months, with her 5 month old daughter. Nothing wrong with either, just typical grow spurts, teething, etc. I looked at her and thought to myself, yes, this may have been a rough 5 months for you and I know she was sooo tired. And, I know she didn't direct it at me, and wasn't thinking about me. And, that is fine, I don't expect people to always think of me. But, sleep deprivation is a walk in the park for me compared to our journey with Degen in the hospital. Give me 5 months of broken sleep with a healthy child, I will gladly take it! Give me 5 months of being at home and not in a hospital in a different city. Not wondering if your child is going to survive a risky surgery - and then rejoicing b/c he did, but wasn't meant to! Give me 5 more months of cuddles, smiles, laughs, and chats - I'll gladly take them!
I guess my perspective is completely different now. And, we weren't in hospital as long as some families have been. Gretchen is such an easy and lovely baby, but maybe that is b/c I treasure her just soooo much. I would give anything to have my Degen back, as I know you would with beautiful Harry. I love that Hank tells you Sebastien has come for a different reason - I think that is true for Gretchen as well.
Sorry for the long ramblings.
xx
Sarah
Hi Cynthia, My name is julie and my daughter passed away in Nov. 2004 of Rabdoid brain cancer in here memory we would like to send a care package to a family who is fighting this horrible thing. I came on here to connect with the Rhabdoid kids and can not find the site. It makes me very sad. My phone number is 402 943 9122. You can call or text me if you have been ale to keep in touch with anyone who is still fighting. Thank You Julie Cook
Hello Cynthia an so sorry about Harry .
My name is Nilva I'm from Peru I move to Canada in June 2009 and I had my first baby on feb 2011 anyways when he was 6 months he was diagnostic malignant rhaboided cancer his tumor was at the liver and he had some spots at the lug, he was on chemotherapy for almost 8 month the chemo he has was ice. 6 rounds of ice every 21 days and at the end he has a stem cell transplant and a mega therapy we just finish all the treatment. And Lucas had the tumor remove on December 02 and the I think didn't when well becouse he had a draining now becouse he had a boil there and the doctor don't have a really answer to deal with this any ways when we was ready to go home Lucas had a ct scan and MRI and we has on April 5 the bad new. His cancer back on his lug . An really sorry for my english is no very good but I try every day to do my best to learn btw I'm not goog to telling all the. Story I think I just want to ask you what kind the chemo they use with your kid and he had the same problem an us did the cancer back becouse now I'm not sure if I want may babu back on kimo I don't know what can I do if it's a better idea take my baby home an enjoy every moment o back in chemo we are at bc childrens hospital in Vancouver and we stay in Ronald macdonal house becouse we are from Vernon since he star the treatment we when home two ice and own time we when home for ten days and all the time we spend the time on Vernon hospital becouse he spike fiver and every day his fever got hight and hight I have no family here just me and my husband and I have to tell you is very hard and I getting frustrait if you can answer to me I will really appreciate thanks so much for take your time and read. This is my mail nilva29@hotmail.com
Love and hug Nilva .
Cynthia
This is Danielle, i'm a long time friend and former neighbour of Toni's.
I would love it if you wrote this book. My eldest son was born with a life limiting illness, and has recently been admitted to the Palliative Care program here. We have always known of his illness, and that he would never live a long life, and thanks to many people who have been with us through the years, entering Palliative care was like having a weight taken off of our shoulders.
I would love to sit and talk with you - if you're interested (our perspective is from the pov of a child with severe developmental disabilities). My son's journey is very different than yours, with Harry. My son was never healthy - we knew shortly after birth that he would not survive. It's been a long, hard road, but - we feel lucky to know of many people who have walked this walk before us and by good fortune to have family friends who also work in the Ped's Palliative Program who are hand holding us through, and knowing that there are things we can do, to help our children to die with dignity, and grace, is profound.
Please contact Toni if you'd like to get in touch with me. She'll know whom you're talking about :)
Best, with love
Danielle
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