Showing posts with label Diane Flacks. Show all posts
Showing posts with label Diane Flacks. Show all posts
"One tiny soul, one big forest" is an amazing sharing
It is so rare to read an article on sick children and experience a sense of calm reflection so I was very moved by how Andee Pelan shares the story of her daughter Sadie Sioux who died at age 4 months waiting for a heart transplant. "Any decision you make is the right decision because it's based on the information you have at the time. You have the best intentions – don't bother with regrets, with `if onlys.' There is no sense in that" says Andee. At the same time, "Answers are a dime a dozen. It's questions that are important." Andee reminds us to cherish each moment with our youngsters, be present for the living and ask constructive questions. Thanks to Andee for sharing Sadie with us and to Diane Flacks for connecting readers with her and Geri's beautiful Mother's Day memorial. You can read the article here.
Bear With Me by Diane Flacks, Nightwood Theatre Jan 7-24
Bear With Me marks the first return to stage of Diane Flacks, writer, actor, comedian and mom, since the birth of Jonathan Purdy-Flacks in 2006.
"Bear With Me is amazing. Diane's wit is incredible. She is very, very funny and a brilliant actor. I have recommended this play to all my classes."
Marcia Blumberg (Sasha, Mia and Eve's granny and Drama Professor, York U)
"She has you in the palm of her hand."
Henriette Donner (Humanities professor, York U)
For info go to Nightwood Theatre. The theatre is not huge and the reviews have been fabulous so don't wait to get your tickets!
"Does that sound strange?"
Diane Flacks checked in with us a year and a half after Catherine Dunphy visited in August 2006. I was happy that Diane focused on Pamela's story and that between candid moments you can see how parents grieve differently. We can argue about almost anything, including shopping lists, and I was about to say I don't remember any arguments between us over Sasha or her care but that isn't true. Small conversations bubble to the surface of my memory about whether to talk more with so and so, or for me not to take off an evening and go for beers with friends. Pamela's strength and presence let me checkout in some respects, at times. Each night she handed me a reminder list as she left around 11pm to endure sleepless night, pregnant and alone in our house before returning for another full long day at Sickkids. Weathering The Unimaginable was published in Saturday's Toronto Star.
NICU parent - staff brainstorm
Fifteen SickKids NICU staff met with three parents to share ideas on family centred care. Two other parents who could not make the meeting participated via written submissions. The two hour scheduled exchange went to almost three and a half hours as we recognized communication that works and delved into specific and general challenges relating to space, continuity, developmental support, role clarity, helpful technology, scripted communications, a reengaged family advisory and more. Our next steps are to draw up a list of recommendations and together discuss how to best take this forward, considering the considerable prior work by an earlier NICU family advisory council. Participants at this NICU family centred care brainstorm were, going around the table: Dr Jonathan Hellmann (NICU Clinical Director), Judy Hawes (NICU Nurse), Jonathan Blumberg (parent, Sasha Bella Fund), Lisa Bonney-Leung (parent), Kim O'Leary (Child Life), Jennifer Butterly (Marnie's Lounge), Lori Ives-Bain (NICU Palliative Care), Chris Churchhill (NICU Operations Director), Melody Hicks (NICU Clinical Manager), Pam Hubley (Chief, Nursing), Janis Purdy (parent), Dianne Flacks (parent), Jonathan Purdy-Flacks (Janis and Diane's baby), Kim Dionne (NICU Nurse Practitioner), Sharyn Gibbons (NICU Nurse Practitioner), Chris Elliot (NICU Quality Leader), Suzanne Breton (Occupational Therapy), Laura DeOliveira (Social Work, NICU), Dianne (Social Work, NICU) Sandy Steinwender (Occupational Therapy). Frank Gavin (SickKids Family Advisory Committee) joined us for the introductions and offered to share resources on NICU family advisories but was unable to stay due to another presentation committment. Gord and Stacey Archer provided written submissions that were presented by Janis.
Laughing out loud in SickKids Hospital
An article by Diane Flacks in today's Toronto Star, Giving up not an option, so laugh, sharing her and Janis's journey with Jonathan at SickKids, reminds us that coping with children's extreme medical challenges requires not only back bone but a well developed funny bone.
"To keep going, I was held aloft by three pillars: the love and support of family and community, an inappropriate sense of humour, and those fabulous bitter blue sleeping pills. Sure, there were times when I was filled with the raging desire to throw Jonathan's IV pole through his window...The roller coaster of euphoria and despair at Sick Kids, the fragility of the art of medicine and the absolutely random suffering of children can make you lose your noodle. The thing that often saved me was laughter. Not "polly-polly bright side" – that annoying state of optimistic denial, ignoring that our child was in pain and in critical condition – but discovering the absurd in the midst of the crisis."
Laughter as tonic for fear. Laughter as love. Laughter as a cry for help. Laughter as professional respect and inclusion. Laughter as necessary distraction. Laughter as a beautifully human way to keep death at bay. The corridors, private rooms, washrooms, meeting rooms, education rooms are filled with laughter of all kinds. Diane's piece reconnected me to those extreme emotions we felt while in care: utter disbelief, gnawing fear, blooming hope, raging anger, deep grief, transcendant appreciation. That awful anxiety of having a sick kid comes with potential for a deep reconnection to life and death and the ability to laugh and cry within moments moves even jaded, bunkered, blackberried out male souls into the warmth of that absurd realm Diane transports us to.
Jokes that later made me cringe helped lift a heavy weight. We bonded with Sasha's cardiologist because we respected her knowledge and effort and communication style (focused listening, priority summarising - great for brains in info overload). She also smiled when we made inane comments that could seem certifiable to some, certainly a sign of complete lack of fitness to parent, let alone parent a sick kid. Awkward, irritated, truthful, suggestive jokes were just part of the banter.
No surprise they are mostly stricken from memory, just leaving damp warm imprints. The safe jokes about the environment, leading jokes about when something or someone would appear, revealing jokes about matters we have mutually agreed to leave unsaid, for now. Humour was coping and strategy and a common form of subtle or not so subtle communication with core teams. Humour was the last refuge for a gripe when we had differences of opinion. TPA man. Between a rock and a hard place. I am going to lose my mind. You can do that but I might have to jump over this bed and throttle you.
When Sasha was doing well, at clinic discussions, we often explored what Sasha could do. What are the limits to experience when you have a cardiac shunt? We often dreamed of taking her to a gorgeous beach. Our cardiologist was expansive in supporting Sasha's home life however she pointed out there was a lot of risk to air travel. As we saw it, "So we can take her on an aeroplane to a beautiful beach but that might kill her." Smile. Ok, no flight this year. Sasha never flew on an aeroplane, that we know of.
Parents joke about everything however jokes by doctors and nurses are a different matter. Often treasured. Sometimes disliked intensely. Humour is endemic at the hospital and I imagine in most functional hospitals as the presence of death can create a different oxygen. Humour reveals deep understandings between families and care givers, it grows over time, or in rare cases you click and it happens faster, as care giver and family learn each other's styles.
Yet there is always a danger of inappropriate frivolity and the cage closes: you need to know us and we need to like you. We had one doctor joke with us about risks Sasha faced during a proceedure - it wasnt the first wierd incident, nor were we the only one's ticked off, so it was the final delivery and we requested him off our care team. Goodbye, funny guy. That kind of humor made us inhumanly serious.
"To keep going, I was held aloft by three pillars: the love and support of family and community, an inappropriate sense of humour, and those fabulous bitter blue sleeping pills. Sure, there were times when I was filled with the raging desire to throw Jonathan's IV pole through his window...The roller coaster of euphoria and despair at Sick Kids, the fragility of the art of medicine and the absolutely random suffering of children can make you lose your noodle. The thing that often saved me was laughter. Not "polly-polly bright side" – that annoying state of optimistic denial, ignoring that our child was in pain and in critical condition – but discovering the absurd in the midst of the crisis."
Laughter as tonic for fear. Laughter as love. Laughter as a cry for help. Laughter as professional respect and inclusion. Laughter as necessary distraction. Laughter as a beautifully human way to keep death at bay. The corridors, private rooms, washrooms, meeting rooms, education rooms are filled with laughter of all kinds. Diane's piece reconnected me to those extreme emotions we felt while in care: utter disbelief, gnawing fear, blooming hope, raging anger, deep grief, transcendant appreciation. That awful anxiety of having a sick kid comes with potential for a deep reconnection to life and death and the ability to laugh and cry within moments moves even jaded, bunkered, blackberried out male souls into the warmth of that absurd realm Diane transports us to.
Jokes that later made me cringe helped lift a heavy weight. We bonded with Sasha's cardiologist because we respected her knowledge and effort and communication style (focused listening, priority summarising - great for brains in info overload). She also smiled when we made inane comments that could seem certifiable to some, certainly a sign of complete lack of fitness to parent, let alone parent a sick kid. Awkward, irritated, truthful, suggestive jokes were just part of the banter.
No surprise they are mostly stricken from memory, just leaving damp warm imprints. The safe jokes about the environment, leading jokes about when something or someone would appear, revealing jokes about matters we have mutually agreed to leave unsaid, for now. Humour was coping and strategy and a common form of subtle or not so subtle communication with core teams. Humour was the last refuge for a gripe when we had differences of opinion. TPA man. Between a rock and a hard place. I am going to lose my mind. You can do that but I might have to jump over this bed and throttle you.
When Sasha was doing well, at clinic discussions, we often explored what Sasha could do. What are the limits to experience when you have a cardiac shunt? We often dreamed of taking her to a gorgeous beach. Our cardiologist was expansive in supporting Sasha's home life however she pointed out there was a lot of risk to air travel. As we saw it, "So we can take her on an aeroplane to a beautiful beach but that might kill her." Smile. Ok, no flight this year. Sasha never flew on an aeroplane, that we know of.
Parents joke about everything however jokes by doctors and nurses are a different matter. Often treasured. Sometimes disliked intensely. Humour is endemic at the hospital and I imagine in most functional hospitals as the presence of death can create a different oxygen. Humour reveals deep understandings between families and care givers, it grows over time, or in rare cases you click and it happens faster, as care giver and family learn each other's styles.
Yet there is always a danger of inappropriate frivolity and the cage closes: you need to know us and we need to like you. We had one doctor joke with us about risks Sasha faced during a proceedure - it wasnt the first wierd incident, nor were we the only one's ticked off, so it was the final delivery and we requested him off our care team. Goodbye, funny guy. That kind of humor made us inhumanly serious.
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