Sunday, October 26, 2014

Special visitor

We had a very special visitor this week. My cousin Coleen came to see us on her way to Houston. I realize it doesn't seem like we are a logical stop on the way to Houston, but I guess if you are coming from Africa you are close enough.

I was enjoying my time so much that I neglected documenting it with photos. The kids actually got more photos than I did. Here is one of the kids and Coleen taken last night, unfortunately it is a bit blurry, but well...

It was such a joy to get to spend sometime with Col. It is such a rare occurrence when we get to spend time with our Africa family that it is extremely precious! We are very thankful that she went out of her way to add us to her excursion.

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?

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?"