Friday, April 26, 2013

Friday's thoughts - and the radiothon

It was a challenge to be focused on anything today.  I was worried (again) about Janneke.  She hasn't been well these past two days although tonight, she seems a bit more herself again. 

When Rachel or Janneke shows signs of being unwell, it is easy for me to sail over into worst-case scenarios.  I get lost in their abnormalities, and I forget that they might be dealing with normal issues such as teething, colds, plugged plumbing, or ear aches.   Instead, as it was with today, I worry about the pancreas or the esophagus or the kidneys or....

The anxiety usually takes root in the days when I am not sleeping well, and I become weak in the knees with concern.  Over the course of the day, I feel as if I am working on my nursing degree with all the assessments and discussions I have: check vitals, listen for good bowel sounds, understanding the stomach quadrants, blood sugar levels, urine output, etc.

Yes, we need to take the girls' health seriously.  We have been caught off guard by strange issues, and they don't often present problems with normal symptoms.

But, I am also reminded that I need to step back, breathe deeply, and trust.  This afternoon, I took Em and Soph to the canal for some fresh air and let's-throw-some-rocks-in-the-water time.  That was good.

It was also good to reflect on the past week.  The Niagara Children's Centre School confirmed the enrolment for both Rachel and Janneke.  Rachel will continue with another year of full-day program, and Janneke will begin the JK/SK morning program. Both girls will travel by bus to school in September!

I am grateful to have them once again at the centre school.  Having a team of therapists involved so intensely is appreciated - and not taken for granted.

The women's conference -held last Saturday- was enjoyable, a bit of rest away from routine.  When I shared our story at the gathering, the room that held 700 women felt like a close-knit circle of good friends, and the platform felt like Holy ground.  A moment not easily forgotten.

On Monday and Tuesday, I was graced with the presence of five wonderful women - four aunts and my stepmom - as they took in some touring and visiting in the area.  It was great to share some of my favourite spots with them as we visited a greenhouse, Niagara-on-the-Lake, our favourite local metal artist, wine-tasting, and other places.  They gifted me with laughter, more stories, and a carved duck that now stands guard in our mudroom.  Yep, a duck.  (If you knew my Oma deWit, it would make sense to you.)

Yesterday, the first stage of Rachel and Janneke's indoor zip-lining course began.  Some (boring) people call it ceiling tracking.  Today, the guys finished another stage of the course, and, very soon, we hope to be using it to safely transfer the girls from bed to chair.  Soph and Em have been asking what the weight limit is for the tracking and what type of slings we will order.  I've not seen them so interested in mobility equipment before.  Could they be quietly ordering their own harnesses?

Coming up next week on Thursday, May 2, we will participate in the annual Have a Heart Radiothon, hosted by Astral Media.  The local radio stations will focus on stories from the Niagara Children's Centre, and they will help raise awareness of the therapy that is necessary for so many kids in Niagara.  I will be on the radio at 6:30 in the morning (610AM/105.7FM/97.7FM)... yep, there'll be toothpicks holding the eyelids open.

Consider becoming a part of the Niagara Children's Centre by signing up as a Change Crusader.  Or, you can stop in on Thursday and drop off your loose change, have some lunch, and learn more about one of the coolest places around.  I'll be there all morning - come visit.

Back to one day (and night) at a time.  Here's hoping tonight quiet and restful - for all of us.


Tuesday, April 9, 2013

on being human

My favourite picture of recent?


Our photographer friend Elma took some great shots of Rachel and Janneke being candid.  You can see her perspective over on her blog here.

There have been some ups and downs this week; the downs involving helping Rachel manage her pains, and the ups being Janneke's animated spirit as Marlene and I help her get ready for preschool in the morning.  I can guess at Janneke's joy by her kicking legs and cheery yells, but I wish I didn't have to guess at what is causing Rachel pain in the late afternoon and evening.  Tonight, a warm bath seemed to settle her for awhile.

* * *

While reflecting on my words for the upcoming conference (link), Ralph sent me this article about a young girl's interview with Jean Vanier.  And, though the girl's last name is Pot, we are not related.  Here's a quote from the article:

Jesus taught and demonstrated hospitality.  That's the reason his followers have to do the same, Jean Vanier says.  Hospitality is "helping people discover how precious they are and then helping them to do beautiful things." 

Makes me think of the different people we've encountered since the birth of our two youngest, people who have felt marginalized from the "normal" crowd because they struggle with brokenness that is hidden from our casual glances.

Makes me think of the vision for Jacob's Well (to be shared at the conference too): a faith-based community in the Downtown Eastside of Vancouver, B.C.  We seek mutually transformative friendship with those on the margins of society and equip others to do the same in their own context.

Who are the marginalized?

You can see pretty quickly that two of my four girls are disabled.  Not disputing that.

What we can't see so quickly are the imperfections and brokenness that lay in each one of us.

Here's Vanier's take from his book Becoming Human:

When I discover that I am accepted and loved as a person, with my strengths and weaknesses, when I discover that I carry within myself a secret, the secret of my uniqueness, then I can begin to open up to others and respect their secret. Each human being, however small or weak, has something to bring to humanity. As we start to really get to know others, as we begin to listen to each other's stories, things begin to change. We begin the movement from exclusion to inclusion, from fear to trust, from closedness to openness, from judgment and prejudice to forgiveness and understanding. It is a movement of the heart.
It is not just a question of performing good deeds for those who are excluded but of being open and vulnerable to them in order to receive the life that they can offer; it is to become their friends. If we start to include the 'disadvantaged' in our lives and enter into heartfelt relationships with them, they will change things in us. They will call us to be people of mutual trust, to take time to listen and be with each other. They will call us out from our individualism and need for power into belonging to each other and being open to others. They will break down the prejudices and protective walls that gave rise to exclusion in the first place. They will then start to affect our human organizations, revealing new ways of being and walking together.
So, the one-way street, where those on top tell those at the bottom what to do, what to think, and how to be, becomes a two-way street, where we listen to what they, the 'outsiders,' the 'strangers,' have to say and we accept what they have to give, that is, a simpler and more profound understanding of what it means to be truly human....
If each one of us, with our gifts and weaknesses, our capacities and our needs, opens our heart to a few people who are different and become their friends, receive life from them, our societies would change. This is the way of the heart.
Peace to your homes. May they be hospitable.

Monday, April 1, 2013

anticipation for April

Spring is coming...

We welcomed the warmer temperatures and sunshine by being outside.  Em mastered the rollerblades, Soph went on the scooter, and Rachel and Janneke enjoyed the ride.  A good afternoon out.  

Easter weekend has come and gone again.  Standing together as a family for Lord's Supper at church on Sunday, with feed pumps and wheelchairs nearby, I could not help but be reminded of the reality of Easter - an imperfect world in need of a perfect Christ.  

Janneke was a handful at church on Sunday, crying and happy-yelling alternately through the morning.  Yet, I was amazed when the children were called forward to sing and participate in the music, she made a beeline in her walker to the front to join the fun.  

Make a joyful noise, Janneke.

* * *

I have been asked to share our family's story with the women who will gather at the upcoming inspirational women's conference, organized by Coffee Break Ministries on Saturday, April 20. I am excited to hear the main speaker, Joyce Rees (with Jacob's Well), and I hope my family's story can encourage others too. Here's the conference info if you are interested: link.  

* * *

Elma came this morning with her camera, and we had a few photos taken.  I asked her to spend some time in the girls' room with her camera; it was good to chat together, share with her the renovated space, and be encouraged by her support. 

And, as strange as it may be, this is one of my favourite photos from this morning:

I am not always certain that Janneke comprehends what is happening around her in real time.  She often seems oblivious to others around her and is content to spin in circles in her walker.  Yet, as Elma was taking photos of Rachel (like the ones above), Janneke suddenly walked between Elma and Rachel, forcing her walker between the shot.  She stopped ever-so-briefly to look up at Elma (hence the photo) and then carried on to the other corner of the room.  

That kid keeps us guessing.

For now, I am looking forward to the conference and looking forward to the completion of our home - the ramp needs to be built on the back deck, the yard needs to be graded, and the lawn needs to be coloured green.  

Peace to your homes and hope your grass turns green.