Learning?

Today I had to give a presentation on Family Centered Practice and sit on a panel for four hours and have people ask me questions.  It means that I talk a little about Frankie and what it was like to be the parent in that situation.  This was for Logan hospital and had a lot of nurses and therapists who are all very used to the medical model, where the professional 'knows best'.  In that model, the parent's job is just to bow and scrape and be grateful for the gems of therapy passed down to them.  That is an exaggeration but still parents have little control or power.

One of the things that I talk about is the things that I learned from Frankie:

 

—Even people who look like they are coping likely aren’t

—In a medical appointment, clients hear the first and sometimes the second piece of information

—If the first piece of information is hard, stressful or scary, you only hear that and nothing else

—A home programme that isn’t integrated to normal daily life is useless

No one knows what is happening at home except the people living it

That came straight off the slide but it always makes me a little sad that I can't tell the full story.  I can't tell in these high level medical presentations, that those things listed above, are only a part of the story and no the most important.  What I really learned from Frankie:

 

The value of time - I learned that each moment of Frankie's life was no more valuable than any moment of Levi's but because Frank's was shorter, it taught me to value each moment, regardless of if you have three years to be with them or a lifetime.  Frank wasn't more valuable than Levi and vice versa isn't true either.  They are seperately precious.  A child doesn't become more important than his brothers because he is dying but the time becomes a finite commodity. 

 

The value of patience - If there is anything you need with a very sick kid, it is patience.  You will need to explain the same things over and over and over again, but it isn't that interveiwers fault.  They too are doing their job.  Some better than others.

 

Don't bite the hand - Other than the quote from Madagascar (which makes me think of this all the time), I think this is an important lesson.  Even though you are tired and beyond stressed, if you yell, scream or otherwise bitch at the medical professionals that you need, even if they are saints, it will affect the alacrity they will respond when you need them.  The extension of that is also true, if you make them a part of your team, they will respond faster.  It is the Pavlov thing over again.

 

The value of stillness - I think that it is easier to be in the throes of having Frankie sick, than it was to be in the stillness after he had died.  I had been in a place where every second mattered and counted.  I had things that needed to be done all the time and the consequences of mistakes were huge.  Afterwards, I had to relearn how to be normal again.  I am not completely normal in that way.  I still watch sunsets more than most and look for pictures in the clouds.  I have learned that the calmness that follows the frenzy is at least as difficult emotionally but that calmness is important.

 

I wish that I could talk about how much I learned from Frank and how important he was to me.  If I did, I would cry and they wouldn't get what they were supposed to be getting out of it.  This was my last slide:

 

"As a parent I felt that trying to keep Frank from dying was like trying to hold sand in my hands in a hurricane.  No one ever gave me more sand.  Most health professionals increased the power of the hurricane.  Only with the people who trusted me and my ability to care for my son, did I feel like they were helping to protect us from the storm."

That is Family Centred Practice

 I was already in a bit of a fragile state when I went to pick Levi up from After School Care.  When he saw me, he burst into tears.  He had had a bad day as well.  Lots of things went wrong today.  His friends didn't play with him, he didn't get two answers on a test and the kid who was reading with him was not as nice as he could have been.  Pretty much he needed to cry for a half an hour beening held by someone who loved him.  Luckily that's what I needed too.  Things are back in flux and we are both craving certainty and clarity.  I hope it isn't too far off, for both our sakes.