Thursday, October 23, 2014

A poem I wrote and decided to share...


There are scars

We are often asked:

Will they be there when she’s older?
Will she feel bad about herself?
Will she try to cover them over?

We will teach her about her scars
Where they came from
What they mean
We will teach her to be proud of herself
To honour these marks
Evidence of her recovery

To me these are not scars
It is a badge of honour
A mark that sets her apart
A visible sign of what God has done

We all have scars
Most are not visible

We have a choice
See them as marks of hurt
Or see them as our path to victory
How God healed our wounds

You may ask yourself
Will my child have scars?

Yes
And so will you

 
Roberta Davis

Tuesday, October 21, 2014

I am truly exhausted

I had the great privilege of going to a conference for the past three days. It was an annual conference of pediatric hospitals in Canada. And it was an experience, an intense eye-opening experience.

I was quite simply overwhelmed by the depth and breadth of health professional who attended and shared their great passion for sick children and their families.

I did not present, I occasionally contributed, but only in the smaller group settings. I was an outsider. I wasn't one of the in-group, but I was also their focus in many ways. Family centred care, how to help parents, how do we serve our patients and families... I felt like the soar throbbing toe that while insignificant is getting a great deal of attention.  Maybe that is a bad analogy because it sounds negative.

Really it was an extremely positive experience, but... and there is a "but." But, it comes at a cost.

The nurses, administrators, doctors, researchers all discuss and share their thoughts with enthusiasm and passion. They feel excited by the discussions, challenged and encouraged. I remember how that felt from my professional days. The meetings where the client was reasonable and articulate, the creative staff was on their game and we were able to guide the discussion to places of success and direction. Wow, exhilarating.

But, even though I can appreciate this and even though I could enjoy the discussions my experience hangs on my shoulders the whole time. My emotions, much to my horror hang only inches below my surface calm. My thoughts fly from thought to thought some of which are more productive than others.

And I know I'm not alone. All you have to do is check in with the other parents. If you say, "Wow that was draining." They look at you and nod with great understanding on their face. They get it.

It almost feels like the energy required to help better understand how to deal with parents is fueled by energy sapped from parents. Again, maybe not a good way to say it, but maybe a bit true?

The experience is very hard to explain and even harder to internalize. I need time to process, to file, to sort through all the thoughts.

I can say without a doubt that I am exceptionally impressed with the people who work in our systems. It may not be popular to report this, but they care. They really really care. And they are trying to grow, stretch and change. And that is something that truly blows me away. It is truly awe inspiring.

That so much effort thought and love are being put into caring for children like my Bronwyn. And that so much interest is expressed in how to help and better support parents like Wes and I... well honestly it is humbling. Exceptionally humbling. I have no words.

So I'll stop there.

Thursday, October 16, 2014

Wonderful fall weather

We have been basking in a wonderful Indian summer. Super lovely weather. The kids have been enjoying it thoroughly. My garden is nearly all cleaned up, but the leaves are still falling, so no rush on those.




Sunday, October 05, 2014

Being an advocate

I attended a meeting recently and was introduced to the mostly research and health professional crowd as a parent advocate. I was quite surprised to hear myself introduced that way. I would have likely used the words "unusually outspoken and opinionated" instead, but advocate sound so much better.

I don't actually think of myself as an advocate, but if I am what does that mean. Perhaps my willingness to share our journey and be honest about my life and feelings makes me an advocate?

I am quite willing to take on that role but what does that role look like for me?

The best definition I could come up with is the idea of "what's next?"

I am driven to find out what's next for my child, what is next for other children with her condition, and what is next for the families that support these children. For me treating their condition is just the first step. After that is the question, What is next?

So here I go, asking "What is next?"

Tuesday, September 23, 2014

A light in a dark world

You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven. (Matthew 5:14-16 NIV)

I have been thinking a lot about this passage. I've been thinking about being a light.

We live in a very dark world. I decided this morning I would not watch the news. Am I choosing ignorance? No. I have just had enough doom and gloom and darkness. I need a day off.

I need to recharge my light. To figure out how to reignite my inner source of power.

Religions of all stripes are taking a beating right now. They are, if you listen to the undertones, responsible for 90% of all the evil in the world. And yet, I don't personally know many evil people, religious or otherwise. I am daily assaulted by Facebook articles and status' that claim to know me because of my professed beliefs.

My faith is very simple. I need to set all the barrage aside and remember who I am and to whom I belong. I believe in being a light to the world. I believe in living love. I believe in forgiving others and myself (cause I make plenty mistakes).

So I decide that I can be a light. What does a light do?
 
It can offer hope. Like a window light in the distance to a person lost in a dark wood.

It can offer help. Like a lantern being lowered down a well to a small child who has fallen and is being rescued.

It can throw light on a situation. It can expose a problem, like a flashlight in the hands of a plumber looking for a leak.

Comfort and hope are found in love. But the light isn't the fix. The one to whom the light belongs is the fix.

How do we fight darkness in the world?

All we can do is live our life giving light where we can. At least these are my conclusions - you may disagree and that is OK with me too.

Tuesday, September 09, 2014

A Jane Eyre moment

If you have read Jane Eyre you'll remember the scene with the big tree. If you haven't read Jane Eyre, there is a large tree by which Jane & Rochester "come to an understanding," or in a more corny version "confess their love." After which, there is a storm and the large tree is hit by lightening and destroyed. It becomes the foreshadowing event for their relationship.

I had a Jane Eyre moment this morning. On Saturday Wes made the kids a swing.

It started like this. I heard the girls playing and very excited. Mari came in the house looking for her bike helmet and said, "Bronwyn and I made a swing. Daddy said we can use it if we use our helmets." I figured that meant it wasn't the best of structures.

Before too long Wes had gathered a few materials together and made them a very rustic tree swing.

Oh my they were happy! So excited.

 


 
 

I was a bit concerned since that tree isn't the strongest in the world and I was sure the very large branch/trunk would come down on their heads. I had a sense of foreboding. Well, I could claim foresight if it wasn't for my usual pessimistic anxiety.

The kids think their dad is a super hero when he does stuff like that for him. I thought he was a super hero cause he finally cut the grass in the back yard! I cleaned out the gardens, the kids picked apples. We brought in everything we could since we were hearing that our temperatures might drop below freezing. Some people even used the "s" word.


Sunday was beautiful and hot, +27, but we were at Grandmas so our gardens just enjoyed the day off.

Monday was rainy, cloudy and cold. By the time the kids returned from school the snow had started and they insisted on playing outside. I wouldn't let them play on the swing in case the extra snow might make the tree unstable.



Tuesday morning there was snow everywhere. Wet heavy snow. As I came into the kitchen I saw that two of the largest tree branches were down. On across our deck and one over the fence into the back alley. This became a concern since I wasn't sure the garbage trucks would get by (Tuesday is garbage day). Wes went to rent a chain saw from home depot. I went and took a picture of the poor wee swing laying on the ground.


Tuesday, September 02, 2014

First day of school

I know spring should be the season on new beginnings but for me it has always been fall. I love fall. I love leaves and harvests and the smells and the crispness. I love it. This year it does seem to have come rather quickly, but I still love it.

And for the first time a very long time I am alone, not for the whole day but for part of the day I'm alone. All by myself! What to do...

Gavin is in Grade 5, Bronwyn Grade 3, and Mari Grade 1. So I have a partially empty nest.

I am terribly tempted to run errands so I can drive by the school at recess and spy on them. Creepy? Yes, I know I probably wont. Probably.

Sigh, a new chapter for all of us.