Monday, November 25, 2013

a new week; a new med

I had some help today with prepping the sterile water for the girls' feeds.  She knows I'm terrible with numbers and measuring, so she rallied for awhile this morning, despite the pain and discomfort she's dealing with. Good thing she kept an eye on me.  And a good thing she has great medical care.  She is now on another round of antibiotics that will hopefully clear up this recurring infection.  Third time's a charm?

Bring on the charm, kid. 


Friday, November 22, 2013

and the week ends

It's been one of those weeks where you wonder about the speed of dark.  Really, when things seem sluggishly and frustrating, and you feel like it is hardly light outside anymore... this must be the speed of dark.

Earlier this evening, Soph tried to read with Janneke.  Emphasis on tried.

Yep, Janneke soon tired of Maniac Magee and wanted out.

Dad started playing Ordinary Love by U2 and the wrestling began.

All good things must come to an end -and there's a tuck-in by Dad.  We are so thankful Janneke is sleeping better and learning to deal with her secretions better. She has a stronger cough, and we worry less about her through the night.  

Rachel is the one who isn't feeling so stellar.  We are waiting to hear more from our doctor's clinic, but we suspect another infection.  At the same time, it could be a wonky virus.  Poor kid.  It's hard to watch her deal with pain and not be able to tell us with words.  Her eyes open wide, and she makes motions with her body as if to say something... but we don't speak her language. Not yet.

It's also been one of those weeks of reconciling dreams with realities.  It's probably good character-building, but it isn't fun.  So I turn up Hopeless Wanderer (Mumford). I'm not walking around feeling desolate; I just like the song. Parts of it mesh with the book of Lamentations (3). Lots of wandering and learning to love the skies I'm under, knowing there's a God who will hold fast and share the road.


Saturday, November 16, 2013

Saturday night

She might spend 30 minutes silently staring at those keys, only to swipe at them once and then turn away. Yet, when her sister Emily plays, she hollers out sounds that suggest a song of her own interpretation.

* * *
And this one? She gives a full range of silent expressions, making me guess that the song is still somewhere deep inside.  Sometimes the day seems so long as we try to find things to occupy their time - beyond the diapers, feeds, and stretches.  Thankfully, there is music.


Monday, November 11, 2013

tell me a story

This is Janneke's way of telling me a bit about her morning at school.  She doesn't say much, but she tips her body back and forth in her chair and leans over her toes.  I am trying to learn her language because I think she's got a great story to share.

It's Monday night, and I am in between bedtime tuck-ins with the girls.  I've been thinking about the previous post these last few days and wondering if I should have even posted. The line between private and public can be blurred in the name of awareness - that sometimes seems more like an expose'.

Yet, his honest words shared reminded me of the need to be, well, honest.

I believe there is a story lurking behind his words.  I might hear it someday - but I won't post it.  I simply wanted to reiterate this first conversation because I was in awe of and challenged by his directness.  I wanted to share our conversation as a story because stories tell us so much.  I was moved by that concept in this article, Messy Stories.  It's a good read.

Favourite quote?  If a primary goal of advocacy for those with disabilities is to insist that society see us as fully human, let's start by allowing people [of all abilities!] to tell true stories that bear the marks of that humanity - tension, paradox, regret, pain and grief as well as joy, success, happiness, love, and accomplishment.

(I also love the article because my new favourite book Far From the Tree is quoted.)

Stories are central to our humanity.  They help us remember lessons and lives.  I look at our family's photos and see the stories. The stories aren't always predictable or pretty, but they are true and have taught me heaps.

(One of the truths: that little girls aren't so concerned if their baby sister is crying.  They'd rather play with daisies.)

Here's to the importance of storytelling. When my family gets together in the summer, niece Katrina insists all the adults tell a story at the campfire. Here's to the added importance of telling the stories -and The Story- down through the generations.


Friday, November 8, 2013

colloquy at 8:07 A.M.

As I brought the girls to the bus at the end of our driveway this morning, I was greeted by a passerby who offered to help.  I assured him the driver and his rider could manage and thanked him for his help. I turned to talk to the driver only to notice a few minutes later that the passerby had not left but was watching the whole loading process.  I gave him (albeit curious mother lion) eye contact, and this was our conversation:

"I didn't mean to be rude in offering help."
"I didn't think you were being rude; that was very kind of you to offer to help."
"It just makes me so angry to see this."
"What makes you so angry?"
"Your kids.  They shouldn't have to be like that. What did they do to deserve this?  I mean, I believe in God, but if He made us in His image, why did he make your girls like that?  I've had a rough couple of years, but I have all my faculties.  It isn't fair that your girls have done nothing and have to be this way."

(And now I am thinking he may have his faculties but not his filter.  I should have had my coffee before 8 this morning, and I should really have my dad on speed dial.)

"Well, be thankful you have your faculties, and don't let this anger determine your day.  My girls are well cared for and loved.  They are off to school, and they are happy."
"Yeah - I bet they are happier than pigs in....."

(shit?  He never finished that sentence.  And I wondered if this was the time and place to really dive into birth, design, and direction.  I feel as though I skirted around answering the questions he was asking, but I wasn't convinced he was really listening.  It was as if he was focused on his anger over my kids' inabilities. For whatever reason at 8:07 in the morning on my driveway.)

"Hey, no one is perfect, sir.  We all have our struggles."
"Well, seeing your kids makes me so angry."
"(seeking-right-words pause) I hope you have a good day, and I hope you don't stay angry."

And then he left.

It was probably one of the more frank convos I've had about my kids.  Most people tilt their head, turn their eyebrows in, cluck their teeth and offer sympathy.  This guy was flat out angry.  I appreciated his direct attitude because anger is definitely one of the emotions I wrestle with in this journey with our girls.

We have such a set idea in our heads of what it means to be made in the image of our Creator.  I don't think we quite grasp His colourful mosaic - or the fact that we live in an imperfect world.  I am thankful that God's arms span beyond our anger and all the other emotions that come with this complicated life.

Peace to your homes,

Saturday, November 2, 2013

the week's end

We finished our week with a visit to Beacon.  Though Rachel and Janneke do not attend the same school as their sisters at this point, they have lots of fans, er.. friends in the classrooms.  Janneke loved meeting new friends in JK, and Rachel caught up with the old gang in Grade 2.

* * * * *

After a lively visit, Rachel needed time on her own; she is easily worked up over seeing lots of people.  Yet after a few hours of quiet, she was ready for her long-awaited music therapy session.  Good songs and great smiles.

Today we cheered and ran in the rain at Road2Hope, in support of EduDeo Ministries.  Cousins make the best running partners.  (Here's hoping we see even more cousins at this race in 2014...)

Some people walk [run] in the rain. Others just get wet.   Roger Miller
Grace and Peace,