Your smiles sweet peach fly between walls and noses, darkness and light



One bitterly cold morning a few weeks back, after a particularly windy night, I saw that one of the two windmills on our porch had blown away and I realized it was Sasha's toy. Mia's windmill was still there. I had reattached flukes to stem several times, so it was only a matter of time but I felt a tiny loss that was quickly replaced by another overwhelming feeling. It was just right. This little piece of plastic with its silver and red shiny surfaces caught my eye a hundred times and the wind of two summers and two winters. As we enterred the house we would see the little plastic toy and think of Sasha. And now nature had busted it free and her windmill was sailing on its journey like the brave tin soldier. And it felt right because in these weeks a series of projects with SickKids have been set in motion and conversations with other parent's about their years of work have established a parent road map of sorts. Some of our dreams from just two years ago are becoming a reality in little and big ways. SickKids is like a city, there are different neighbourhoods, thousands of staff, lots of kids and all kinds of things going on from care to education to planning, incredible trials, tribulations, hard work, cries and tears and smiles and so much life and death. I have found that there is brilliant work being done, but it is not always or even often shared, and each department and generation of parents does the work of making communication a little easier, putting in place some key supports, pushing for more patient safety, getting the team talking better, including the parents more. And it is an organic process, like gardening. Policies make a difference but people and relationships have to grown into that new culture and start the process again. Some of the plants are perennials and some are annuals. Some in the sun and some in shade, some soil is tired and depleted and in need of nutients. There is always a new crop coming through on a regular basis and the work is non-stop. Where parents work as volunteers without a lot of hospital support, there is burnout and fadeaway, and when a parent asks later, why aren't there parent meetings on every floor, there is a kind smile and someone remembers, 'Oh yes, there was a family group, I must see what happened to it'. And lets not forget the technology. This last week via Facebook I have reconnected to a couple dozen people from a summer camp 25 years ago; within days one person connects to another and then 100 pictures are uploaded by a handful with scanners and neat photo albums and then a dozen of us are commenting on the pictures like kids. Between the need for better use of resources and better team communication, the desire to partner with patients and families and offer care that keeps body and soul and the families love going strong, it feels to me like there is a new wind blowing. It has blown forever and wanes and builds and stalls and grows. It is the love of parents and their children and the cycles of acceptance and waiting are getting shorter with each generation. Knowledge will bust out of its silo carried on the lips of passionate and caring people. I have met so many hospital staff with great hearts, they have each heard and been touched by the stories from parents, the stories of all that worked well or went badly and just how much a little communication can effect you in those vulnerable moments, for good or bad. Now I have heard stories from several parents who have been working at SickKids hospital to make care more family centred and compassionate and transparent, in some cases for over a decade. So I see that we named our little fund the Sasha Bella Fund for Family Centred Care for a reason. And only these last few weeks I see the reason wasn't, as I once thought, that noone else was doing the work but that so many are doing the work and all this energy is coalescing and building momentum. Parent participation and presence and deeper patient partnership is in the air, with the winds that carried away Sasha's windmill, because we cannot stop remembering and asking and reminding and thanking and wondering; because it is and was for our kids. I am thinking now about the little boy with magic eyes whose G tube got pulled out this afternoon and was rushed with his mom to emergency and with everything on her mind, his mom's partner wants me to know that she still really wishes to present thoughts on family centred care tomorrow at the NICU.

2 comments:

  1. Jonathan this is just so wonderfully written. I thought at first you had written it after the meeting today. I believe you are right about the winds. Thank you for inviting me to be a part of today.

    I have to mention, at one point today I looked at you and it reminded me so much of a photo of Sasha you had posted. Of course now I read this and think how her journey continues through this work.

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  2. This an amazing post, a peek inside your inner voice, as you observe the world and reflect on what you have seen and heard, and what it means for the future. Talk soon.
    Dom

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