Sunday, September 29, 2013

autumn walk

Go, sit upon the lofty hill,
And turn your eyes around,
Where waving woods and waters wild
Do hymn an autumn sound.
-E. B. Browning

* * *

Poetry or no poetry, there was definitely a song in the warm wind this week, keeping it cool at night but warm in the afternoons.  Perfect for a hike.  And a chance to monitor the Welland Canal freighters.

No, I don't make the kids pose for photos, but I did catch some great Emily-and-Janneke moments on our walk.  Janneke continues to develop strong weight bearing muscle in her legs, allowing her to walk with assistance.  She uses the wheelchair for mobility and transportation, but we also give her time to play with those new skills.

I am not sure if I am excited about the idea of Janneke walking independently.  It's one thing to look forward to those first steps with kids like Emily and Sophia whose cognitive ability we can measure.  We can teach them what is safe and what is stable.  With kids like Janneke... well, we aren't so sure what is understood.

I am thankful the kids continue to develop and change. I only hope it goes at a pace that my head and heart can handle.  One step at a time, eh?

peace to your homes,

Thursday, September 26, 2013

vertical again

Choosing joy takes work.  So does living thankfully in the circumstance, but we do this through Him who gives us strength.  (Lamentations 3:19-23)

Cheers for finally feeling stronger and healthier again.  The kids took sharing much too literally last weekend and gave me their cold flu, but we are all vertical again.  

Well, we are vertical most of the time.  I am thankful Janneke is 100% better than last week.  And yes, this is one of her favourite positions, as she prepares for chest physio. Oh, that kid.

I am thankful that Rachel loves going to school.  She literally dances in her chair when she sees the bus driver pull up in the morning.

I am thankful that Janneke is now taking home school crafts.  Even the sort-of-gross-sort-of-yummy crafts.

I am thankful that last Friday, when I felt quite sick with the cold flu, a dear someone-in-another-city phoned the Swiss Chalet in St. Catharines to deliver us a surprise supper.  The timing was the unplanned perfect kind.

I am thankful for technology that allows us to visit virtually with Oma, no matter our health or time of day.

I am thankful to see my parents and to celebrate my dad's amazing recovery from a stroke he experienced less than three weeks ago.

I am thankful for nursing, respite, and personal support services that allow me time to do crazy things with Em and Soph.  Like covering ourselves in cornstarch dye while running 5K earlier this month.

peace, joy, and thankfulness to your homes,

Thursday, September 19, 2013

So, Janneke and I are sitting at the computer tonight.  Soph took the photo of us before I found a way to type and hold Janneke at the same time.  We are enjoying the new album Heart from The City Harmonic.  

The kid and her sister have been sick with this cold flu virus for more than a week.  Which I know is not a long time when you consider the bigger picture.  But more than a week is more than enough for me.  Because this more-than-a-week cold comes more than once a month and steals the needed sleep. 

Must choose -and hunt for- joy.

Rachel was able to return to school today.  She was kicking her legs and shaking her hands all the way to the bus - huge smile on her face.  She was thrilled with seeing her friends again.  How typical.

Janneke went to see the doctor today due to growing concern from the week. She had a particularly rough evening last night and an unsettled morning, but she was all smiles for the doctor this afternoon.  She was smiling and kicking her feet with delight.  Oh, the healing powers of the waiting room.  How typical.

Your grace is sufficient for yesterday's sorrows
Your grace is sufficient for my right now
Your grace is sufficient for what may come tomorrow
Your strength is made perfect in this somehow
When I am weak You're strong
Your grace is all I've got
-from Strong


Sunday, September 15, 2013

As I wrap the heavier blankets on Rachel and Janneke today, I am reminded of the word comfort.

Both girls are dealing with a cold flu that has kept them from deep sleep and school.  Janneke started earlier this week, and Rachel started at the end of the week - and it's only September.  Yikes.

Because the girls carry no known diagnosis, when they are even the least bit sick, my worry engines kick into high gear.

Sometimes the word comfort seems difficult to hold, as if the compounded emotions create a slippery fish I can't catch.  Maybe it's my busyness or energy spent trying to define it or fix my problems that makes comfort seem allusive.

When I put the heavy quilts on my girls, taking care to cover their arms - all the way up to the shoulders so their hands can't fidget or find the face to rub, they settle and are quiet.

Maybe I ought to put on a blanket and sit quiet too.

Today, I am reminded that my comfort lies in my belonging to a Creator whose arms do move, spanning beyond my fears, doubts, or frustrations.

Peace to your homes,

Wednesday, September 11, 2013


I don't think I'll ever be able to measure Rachel's cognitive capacity, yet I am almost certain that she understands much more than she reveals.

A couple of years ago, Ralph and I tried to watch the movie The Diving Bell and the Butterfly.  We couldn't finish the film; the frustration of the main character with his inability to communicate resonated too closely with our perception of Rachel's being. It prompted our grief over Rachel's inability to connect with us.

Hearing someone speak or seeing someone use sign language is a gift.  Both are not a part of Rachel's vocabulary.


Today, we went to Mac to discuss her feet and splints.  The moment we walked into the clinic room, she looked at the ear/nose/throat tools, then looked at me - and scowled.  

No words were necessary.  Point made.

I talked with her, reassuring her we were going to only look at her feet - no tools would be used.  She continued to scowl - but less so.  She banged her hands on her legs over and over while I tried to explain the reason for our visit.  When our doctor came in, she was quieter. I talked with our doctor about her responses, and she reminded me of most kids' first word: No.  

Of course.  Just because she can't speak the word doesn't mean she can't form her opinion - and protect herself.  

 Our kids' development continues to fascinate me.  

Giving thanks to our Creator - and peace to your homes,

Friday, September 6, 2013

bit o' sun

A single sunbeam is enough to drive away many shadows.  St. Francis of Assissi

As I watched Janneke spin in circles in the patch of sunlight this morning, I was amazed at her ability to find the warmth of the sun and stay out of the shadows. She spun carefully, staying in the space that was lit.  

Over the last few weeks, I've been reminded of the tension that exists with parenting girls like Rachel and Janneke.  How do I balance being mom and being therapist?  This morning, I had a bit of time before a meeting:  Do I try to find ways to help Janneke progress with some play therapy?... But there was also a pile of sleeping bags and camping equipment to be sorted. 

I chose to work on the remnants of our camping weekend.  And Janneke chose to spin circles in the sunlight.  

Peace to your homes,

Wednesday, September 4, 2013

school begins again

Both Rachel and Janneke left for the Niagara Children's Centre School this morning.  All four girls were in the capable hands of others for a few hours today, and I was left to enjoy some space of my own.  Rachel continues with full day program, and Janneke will join her for a morning program, starting on Monday. 

Seeing the girls loading up into their small yellow bus, I was reminded of an incident that happened many years ago.  A trusted adult asked me if I knew what the word DARTS stood for on the small yellow school buses belonging to the DARTS company.  I said I wasn't sure.  I was informed that it meant Drive All Retards To School - and told it was a "joke."

No one is perfect - we've all spoken foolishly. Perhaps this person has regretted or repented of this moment in time, but words live longer than people. Words have power to change people -for better or worse.  How we respond to people and experiences that stretch our definition of normal or comfortable - or stretch our patience - says a lot about character, maturity, discipline and heart.

thankful for grace which covers our shortcomings, loving this short bus, and wishing you peace,

Monday, September 2, 2013

farewell summer

"Shut your mouth; open your eyes and ears. Take in what is there and give no thought to what might have been there or what is somewhere else.  
That can come later, if it must come at all."  C.S. Lewis

Peace to your homes and Happy September,