Tuesday, February 26, 2013

Going Concerns

In business they call something that continues on and on indefinitely a "going concern." This is important for business and financing purposes: no one should invest in a business if it's going to die. 

I think we like to view our lives as going concerns as well, even though that's the furthest thing from the truth. The peace we experience by not thinking about the finiteness of life makes it worth not thinking about. And so we carry on, not worrying about the limited time we have and what it all means.

Until something happens:

Someone slams on their breaks on the highway and you barely avoid a car crash. You snap out of it and think about how quickly things would have changed for you and everyone you love. Or you might think, "Who would remember me? What have I done?"  You think about these things until the top-of-the-hour news comes on the radio, and some random story captures your attention, and the thoughts that could have led to knew and profound insights fade away.

Or you learn that someone you once knew died unexpectedly. You think of who they once were and your times with them. You wonder how their days since your time with them went. Were they happy? Sad? And you think how lucky you are to be alive. You call someone you love, but when you talk, you don't discuss how lucky you feel to be alive, and how lucky you feel to know them. But, instead, you talk about random stuff instead. And the thoughts and feelings of the urgency and importance of life right now pass.

Or you get swept away in a sea of emotion during a heart-wrenching movie. Something about the story triggers a tsunami of thoughts and feelings ... about life, mortality, what you're not doing, and why. Your awareness of things that do (and don't) exist in your life come crashing into focus ... hello. You promise to "stop taking things for granted" or "pretending someday is going to come." You wake up. You snap out of it. And ..... you journal, update your Facebook status, text a friend, and go back to bed.

At the end of the day, none of us are "going concerns." All of us are going to exit.

Even I – knowing full well that my time with Gabrielle is less and less – struggle with this concept on a regular basis. I (almost willingly) allow fluff and details to trick me into believing that an ultimate goodbye isn't waiting around the corner. Having this pending finality in the forefront of our minds all the time seems unsustainable. It's there. Lingering.

The silver lining, I suppose, in raising a child who you know will pass is – ironically – that you have to to confront death and our limited time here. Over and over and over. For brief moments. Every day.

It's like getting close-calls on the highway, or news of old friends passing, or watching movies that pull at your heart strings all the time. But that's a bad thing? Right?

Well of course it is. It sucks, actually.

But by forcing us to repeatedly confront death, loss, and a final goodbye; by making us learn to live with sadness and pain; and requiring that we take care of her at the same time, with as much love and laughter as we can muster – over and over – Gabrielle has actually made us better people.

Wiser.  More empathetic. More spiritual. More real.

No amount of life duties and distractions will enable us to avoid the realities most people are able to ignore (until they near their end). Gabrielle is always there. Right now for real. After, in spirit. And despite all the sadness and heartbreak, I wouldn't ever want to be the person I was before she arrived.

She's not, I'm not, and no one is, an indefinite going concern. But, unlike business, where's it's common knowledge that only a fool would invest in a company that wasn't going to last that long, it's different with people. My daughter is going to end. I am going to end. Heck, we're all going to end. But people and experiences are worth investing time, money, emotion, and energy into, especially if we love them.

And I'm learning the results can be wonderful and definitely indefinite.

Friday, February 15, 2013

Taking in the Good

While I enjoy my 'holiday' at home with a sick little Jonathan, Regan is enjoying his respite time at Canuck Place with Gabrielle, James and Michael.  With some sleep and a bit of 'quiet' time I have had some moments to reflect on all the things I am so grateful for.
  • A good cup of strong coffee.  How would I ever survive these days without it?
  • A beautiful sunny day.  It feels like spring is on it's way and I can't tell you how exciting that is.
  • Days at home with Gabrielle feeling well, happy and smiling.
  • A visit from Danielle who spoiled us with amazing meals every night.
  • Family that lives close by and is always willing to help out when needed.
  • My good health, and the good health of my kids and husband.
  • My bed.
  • My boys's preschool teachers and Kindergarten teacher as they have created a learning environment that they want to be a part of.
  • All the support and resources we can access so that we can help Gabrielle live her best life.
Before leaving for Canuck Place, Gabrielle had a play therapy session.  Gabrielle LOVES to play and was completely enthralled and engaged with her OT.  It was such a joy to watch.

Gabrielle's developing contractures which really affect her range of motion leaving her stiff and which can ultimately affect her development.  She wears braces on her hands when she sleeps as her fingers are contracting and when you lose the use of your hands, you decrease your quality of life.  She's also getting braces fitted for her feet as her feet are contracting too.

Our goal for Gabrielle has always been to have a good quality of life, so it's important for us that we try to slow the progression of her little body from contracting.  The play therapist showed us how to use play as a way of stretching her body out actively instead of us stretching it for her.  The pictures above show the therapist having Gabrielle reaching cross body for the toys as well as above her head.  She loved the challenge and was concentrating so hard.  It was adorable to watch.

Of course there are difficult times in the every day living, but by taking in the good and focusing on all the things I'm grateful for, it sure over rides everything else:)

Friday, February 8, 2013

Ode to Gabrielle

Girl I've known u before,
A beautiful smile,
A pure heart,
A spirit we strive to become,
Yet you are already there.
I know u are here to guide us but
Let me pay the price,
Not you, precious beautiful one.
I'm not ready for u to leave this life,
We all have so much to learn from you.

Love your Uncle Ben

Saturday, February 2, 2013

Laughter and Living 'My Way'

As per previous entries I would have posted this under a "laughter" title .... but when I reviewed them to find what number this one was, I was struck by how naturally happy and alive everyone was in all of them.

In other words, I know the video below is sure to evoke a laugh, but that's only because someone is absolutely alive. Like my tears post, I think I'm on to something with this.

Oh to be alive ...