Tuesday, January 29, 2013

sparkle on, baby

It's been another week plus of cold and now upper respiratory infections.  Bring on the antibiotics...

But, lest I forget, Rachel recently received another Sparkle award at school. She was well enough for one day of program and then back to her bed.  Poor kid. Both girls haven't attended much school for the last two weeks due to illness, but we are optimistic they will be back soon... sparkling.

The cool part of this award is that Rachel used her red button (her talker) to communicate to the students that "she was so excited to receive her Sparkle award." It was a pre recorded message that she knew to activate when she was at the front of the gym.  (I recorded it, but I need to clear permission with the school before I post.)

The concept of a red button with a pre recorded message is to establish a method of communication for Rachel with others, despite the fact that she cannot actually speak the words.  She is learning to communicate by pushing the button when others approach her.

A couple of weeks ago, the previous message was a greeting that she used throughout the halls of the school.  I know this because Bernice texted me after being at the children's centre and said that Rachel just asked her how she was doing.  Love having friends who understand these small triumphs!

So, we wait to send our Sparklers to school.  In the meantime, they are having lots of sleepy time, time with the iPad, time outside in the swings and chest physio. Here's looking for a healthier day soon!

By the way, we are getting excited to help our friends Jason and Laura with their fundraiser this Friday night.  Once again, I am reminded of the frustration many parents face knowing the therapies, methods, and care their children need to grow cost money - often beyond their reach. Yet, I am amazed at the donations that are coming in for the fundraiser: Raptors tickets, Sabres tickets, Jays tickets, spa packages, golf outings... very cool.  We hope for a great turnout.

Peace to your homes.  And here's to small reminders to be thankful.


Wednesday, January 23, 2013


Well, the first anniversary passed by rather quietly.  Yep, the Sprinter has been with us for one year.  We are so thankful for the marked improvement the van has brought to our everyday routine with Rachel and Janneke.

... not to mention that when Em and Soph have friends over, they still think it's pretty cool to go for a ride in the Sprinter.  And there are often dance parties to songs from Britt Nicole, Sereena Ryder and others in the van after church.

But, I digress.

We are thankful for the incredible changes that came about in 2012.  This comes in accordance with His will worked through so many of you, starting with the intense fundraising in 2011.  I still remember those early meetings in 2011, wondering how on earth we would reach our goal of a van.

And the end result? We had money left over to begin our home renovations.  Awesome.  Now, almost two years after the first fundraising planning session, we have a renovated home and an accessible van.

Many say this was all answered prayer.

I agree.  Yet, I mull over the phrase answered prayer.  What about some of the other prayers we've been praying that have been seemingly unanswered?  We try to smother that frustration with smart phrases -albeit well-intended, but those words end up being dis-comforting and empty.  Smothering that frustration only leads to a deeper set angst.

I've been reading some works by J. Sittser, one in particular about prayer.  He writes the following:

I believe that prayer is an epic story. God does and will answer our prayers, though it may take a while, sometimes a long while.  But the problem is, all of us pass through stretches of time -sometimes long stretches of time- when God does not seem willing or capable of answering our prayers.

It's been another couple of days of sickness for Rachel and Janneke.  Just when we are up and in regular routine again, they seem to catch someone's cold.  And a cold means that they are affected all over - with their stomach, breathing, and bowels.  No fun.

lots of Pedialyte..
And little sleep.

In these moments, I find myself reflecting on prayer - and unanswered prayer.  I like how Sittser writes that it is an epic story.  Epic meaning long.  Long meaning there is a need to persist.  Persist meaning don't give up. Wrestle with God.

Persist in hoping and waiting.

There is an end in sight, but it may be a long way off.  Maybe my persistence with those unanswered prayers will radically my life.  I might not get the answer I want, but I'm guessing I'll be surprised by the effects of not giving up.

So for now, persist.

Be driven and persist.

Peace to your homes,

Side note: All this makes me think of the word determined - and the determination I see in parents near me who are not willing to give up hope with their kids.

A cousin of mine, Brenda, is determined to catch the attention of the right leaders who can provide additional funding for children with special needs (particularly those with ASD) living in the Kingston area.  Read her story here.

Friends of ours are organizing a fundraiser next Friday night here in Port Dalhousie to raise money for their two kids who have been diagnosed with Autism.  If you're on Facebook, search Let it Shine.  We'll be there!

Saturday, January 12, 2013

learning on the lurch

Em and Soph love the Chronicles of Narnia, and I like to think of the author C.S. Lewis as a bit of a kindred spirit.  I have loved reading the books and watching the movies with them - sweet memories.

Recently, I came across this quote from C.S. Lewis:

If we let ourselves, we shall always be waiting for some distraction or other end before we really get down to our work.  The only people who achieve much are those who want knowledge so badly that they seek it while the conditions are still unfavourable.  Favourable conditions never come.

But, oh, how I wished for favourable conditions last night.

Between the hours of 2 A.M. and 7 A.M., Ralph, Janneke, and I wrestled with a faulty g-tube, had a quick visit of both the ER in St.Catharines and the ER at McMaster Children's Hospital in Hamilton, and settled on the use of a Foley catheter until 9 A.M. when our local med supplies shop opened.

It was a kick-in-the-pants kind of reminder to keep extra g-tubes in the home, as well as a catheter or two.

There are two critical issues with a situation like this: (1) the hole in Janneke's belly will start to close or tighten if there is nothing inserted and (2) Janneke is prone to seizures when her blood sugar levels drop.  When she is not being fed, there is a greater chance her blood sugar levels will drop.  I can't feed her if she doesn't have a g-tube. I suppose you can see the trouble?

Not exactly favourable conditions.

Thankfully, staff at both hospitals were helpful in giving me catheters and other items to use until we could meet with our supplier at 9 A.M.

*I found it discouraging that both hospitals did not have g-tubes in stock.  I told Bernice those of us with tube-fed kids ought to form some kind of support network for these middle-of-the-night crises.  Of course, it's always the middle-of-the-night time frame.  If I had to pick, I'd favour a crisis in the daytime - or not at all.*

This morning, by 10 A.M., I inserted the new g-tube, had some coffee, and Janneke fell into a well-deserved sleep.

And I now have my back-up plan in place should this happen again. Mind you, to use Sophia's words, "Murphy's Law, Mom... if we are prepared, it won't happen."

It isn't my favourite task to carry the responsibility of g-tube insertion and care.  When we take our kids into the hospital, I realize that we are all too familiar with the medical lingo.  That usually means we are taken seriously when we go to the ER.  I have experienced many times the role of showing staff how to manage my kids' care.

I don't begrudge the staff; they have to know and practice so much knowledge as it is.  When I am recognized as an expert with my kids, I take that responsibility seriously and appreciate the team approach.  But, it isn't my favourite.

I am thankful for the rush of adrenaline that comes with these circumstances, allowing me to think and operate, but I hate the stress and fear that worm their way into my heart and mind.

All the same, I guess that means I've learned something with these unfavourable conditions.

Now it's the night again.  Here's hoping for peace and quiet - and working g-tubes.  And here's to good humour and a refreshing walk at noon today with a great husband who reminds me of the fight for Joy.

Peace to your home and to your heart when you are learning on the lurch,

Thursday, January 10, 2013

sly fox

When Janneke was born, one of the many questions we had about her development was with reference to her sight.  Her eyes were quite small in size, and there were doubts about her vision.

As time passed and she developed some of her motor skills, we knew she was able to see, but we questioned her ability to recognize.

It is a rare moment when she uses direct eye contact.  Often, it seems that she is looking at you, but when you study her eyes, you sense she is looking through you.  When she is working with something on her tray - the iPad, a toy, or a book - she uses her peripheral ability to sense the object and uses her hands to explore the perimeter of that item.  I call it her "sly fox" ability - to be seeing something without making it obvious.

Yesterday, the staff began working with a button for Janneke.  It's a red button that will hopefully teach Janneke some cause-and-effect skills.  If she pushes the button, something should happen.  In this case, they hooked the button to a cassette which then played children's music.

To the amusement of staff, Janneke would not actually push the button with her hand, but she would put her chin on the button, her cheek, her elbow - anything but her hand.  She would hold that button down with some part of her body, let the music play, and shake her hips while standing in her walker.  (Sorry - no photo.  Too busy laughing at my girl!)

Today, I watched some more cause-and-effect success.  Apparently, Janneke appreciates monkey sounds, and the staff showed me her change in face when they made monkey sounds.  I preserved the dignity of the staff by not taking a photo of their face while making the monkey sound - and Janneke's face takes the limelight anyway.

The photos show (1) a quiet hallway, (2) one monkey sound, and then (3) lots of monkey sounds.

For a kid who is often inexpressive, this is a good moment that reminds me she is still developing and progressing.

More joy.

Peace to your homes.

And a special thank-you to a special Mem (not a misspell) who made Rachel a new hat for January.  What a treat!

Friday, January 4, 2013

a glimpse of the morning

There is sometimes a sacredness that comes in the morning.  The warm shower inside while the snow and wind blow on the pine tree outside.

Janneke's hand reaches out to the warm water and moves back and forth, in and out of the spray.

Joy comes in the morning - and in a fuzzy towel.

Makes me think of the song my mom would sometimes sing:

The steadfast love of the Lord never ceases;
His mercies never come to an end.
They are new every morning, new every morning,
Great is your faithfulness, O Lord, great is your faithfulness.

And in this morning, big sister Sophia alternates between big hugs to Rachel and Janneke (she often insists on giving three hugs to each kid before doing her chores) and cartwheels to R and J's newest favourite cd, Kids World Party by Putumayo Kids.

Music really does speak to the soul, stirring -convincing- the spirit to move forward.

Peace to your home,

Tuesday, January 1, 2013

New Year's Eve - the preliminaries

It was a few days before Christmas and into our house came a gift from nurse Janet - a gift at scale for a mouse.

A beautiful room, a copy of our space, with mini dolls, beds, and books - now sitting on the girls' fireplace.

Neat, eh?

* * *

Here are a few snapshots from the first weekend of the holidays:  

But, the holidays here haven't been as quaint or quiet as the little room on the fireplace mantel.  We thought the flu flew, but other viruses swooped in on Christmas Day and are still hanging around.  Thankfully, all that appears to be left is a cold that Rachel and Janneke are dealing with.

Here's a snapshot of Janneke finally resting - only after her chest physio session.

Thankfully, everyone has slept better these past three nights - which improves everyone's perspective.

* * *

When the sick feelings returned last week, I was pretty frustrated.  Canceled plans, little sleep, sad kids, cabin fever....  I was and am impatient in affliction.  

I was pretty angry.  It seems that whenever my kids get sick, things get ugly here emotionally.  Finding joy becomes a desperate battle.  A spiritual battle of the soul. 

In the middle of this, a schoolmate of Rachel's died.  A young life, so resilient, beautiful and strong to overcome and live with significant special needs, this schoolmate died so suddenly right before Christmas.  

Instead of shepherds shaking their heads in amazement at the manger, I witnessed a grandfather shaking his head in grief while facing the coffin of his granddaughter.

Brokenness.  Ugliness.  At a time of silver tinsel and Christmas bells.

* * *
But this I call to mind - and therefore I have hope - because of His (albeit mysterious) love, we are not consumed (Lamentations 3).  There is joy and there is sorrow.  It is not one or the other - or one following the other.  Not on this earth.

A year lies ahead - filled with memories to be made.  Sorrows and joys.

For the weight of joy to supersede the weight of sorrow, it will be a wrestling match. A fight.

Last night was the preliminary round: New Year's Eve.  There were sixty friends, large and small, a fiddle, banjo, piano and other instruments... hands were clapping, feet were stomping.  Friendship, music, and laughter filled our home with little elbow room.  

That was necessary and now savoured.  Joy won.

Tonight: more chest physio and hopefully sleep.

Tomorrow? We wait.  

Peace to your home.