Thursday, February 28, 2013

Facetime with Oma

The other night, Ralph was chatting with his mom via Facetime.  It is not easy for Oma to simply pop over and visit; we appreciate the blessing of technology that allows us to virtually visit without the stress of travel.  

Here's Janneke's take on the whole conversation:

Hi, Oma.  Nice yellow sweater.  I like yellow.

Hmm, Oma sure has a lot of say.  I need to take a rest on my elbow.

Well, if I could at least add my thoughts on the situation...

Oma, forget Dad. I'm coming in for a closer look.

And now I'm bored.  No, trying to kiss me won't work.  
Doodeedoo... wonder if I can swipe back to my MagicFingers App?

Can't. make. the. screen. move.... but I can make Oma laugh.

 I'll just lay my hands on Oma's face and see if that changes things.  Ha!

Oh, three year olds!

This morning, as Janneke's preschool friends were helping with her winter boots, I couldn't help but notice her boots were switched - left on right foot and right on left foot.  How normal.

peace to your homes.

Monday, February 25, 2013

new shoes and more sleep

New shoes.

First time for Rachel.

Even without her AFOs (splints), we had been unable to find a solid shoe to fit her foot.  She does not bear weight independently on her feet, but she does go into her standing frame at school (and at home during the summer).

Having a pair of shoes creates a sense of normality for her, never mind the fact that she now has decent foot covering in the rain and snow.

In the past, when I would take her to a shoe store for a fitting, the staff would oblige my request but I felt as if we were a burden to them.  We eventually gave up because we were told that unless we chose a custom made shoe, we would have to stick with a slipper.

Recently, we were directed to try One Small Step, a small shoe store in Hamilton.  When the owner offered to help by coming into our van - instead of Rachel coming into his store, I knew we found the right place.  He sells shoes for all kids, but he has compassion for children who have hard-to-fit feet and need something to accommodate the AFOs.

I only wish I would have taken a photo of Rachel's face when the man stepped into the Sprinter to measure and work with her feet.  It was a funny expression.

Speaking of expressions, this is Rachel's latest whenever I try to catch a photo of her.

* * *

Both Rachel and Janneke are showing more interest in cause/effect buttons and with a few different iPad apps.  We hope this will progress into some basic forms of communication that we can use at home, as well as school.

While the girls are busy learning buttons and tactile exercises, we are exploring a slightly different formula recipe that can extend the girls' night feeds.

To keep the long story short, ordinarily the hang time for formula in a feed pump is four hours - any longer creates potential for bacteria to grow, formula to go sour, etc.  The girls are fed 24 hours, so that means we are changing, cleaning, and prepping the feeds every four hours, day and night.

Up until this point, we haven't had longer night feeds because both Rachel and Janneke have sensitive stomach/bowels.

It's been about two weeks of a longer overnight hang time with the updated changes.  The girls are still awake periodically and require bib, diaper, or bed changes, but knowing we don't have to be up to do the feed change and prep every four hours is liberating.  It's quite amazing how significant a slightly longer stretch of sleep can affect your emotional well-being.

Peace (and sleep),

Sunday, February 17, 2013

engaging in holding the sky

Not long ago, I finished reading the book Half the Sky

I think you should read it.

Journalists (and authors) Kristof and WuDunn convey in blunt, honest -but not sensational- terms the very real and brutal issues facing women and children around the world.

The two journalists visited and befriended women who were/still are affected by prostitution, sex-trafficking, genital mutilation, slavery, inadequate maternal health, poverty, and abuse.

Rather than elevate the women and sensationalize the stories, Kristof and WuDunn challenge the reader to actively engage in the global conversation.

Meeting the basic needs (food, safety, shelter) and empowering women and families in self-sustained living requires a long-term (and sometimes slow-moving) commitment.  Actively engaging in the global conversation is not sexy or successful - as defined by our culture of convenience.  Yet, there are small and large ways to be involved, and the reward is immeasurable.

It's been said often: We are called to community.

To live in community means to support, to help.  Yet, there are times when helping hurts - or comes short of meeting the need.  Help, particularly on a global scale, can be thwarted by political and theological sparring - so caught up in the politics or right/wrong theology that we are figuratively blind to the weeping woman at Jesus' feet.

This book made me think of what I've heard lately "first world problems" vs. "third world problems".  This related video has been circulating the social networks.

Half the Sky also made me think of an article on Malaika Mums from a recent edition of the Bloom magazine.  How challenging on a completely different level it must be to raise a child with special needs in a village where everyone thinks you are cursed - because of the disability.  Here's a link to Malaika Mums, and here's one to Malaika Kids.

Back to the idea of being called to community; here's the parallel I pondered.

Raising a child with special needs is so challenging that it is essential to have help.  Sometimes the future is daunting, almost scary, because we can only wonder who will feel called or be called to help our child. [Bernice's recent blog post shares an aspect of that fear.]

In the world of special needs, meeting the basic needs of food, safety, and shelter are challenging.  Trust me, I am aware our culture is rich in resources, but allow me the following thoughts:

How does a parent meet the basic need of food if the child won't eat, can't eat, or would rather eat feces than food? How does a parent meet the basic need of safety if the child is prone to self-inflicted injury, bites themselves - or bites and hits others?  How does a parent meet the basic need of shelter if the child habitually flees the home, with no destination in mind?

These are hard questions.  These aren't necessarily the questions that apply to my family.  But, I know parents who deal with this.  It is not easy.  It is isolating.

Sometimes I wonder if it is difficult to mobilize the masses when the "fix" isn't quick, efficient, or appropriate (in accordance with our comfort level, our politics or our theology).

We are called to community.

We are called to support each other long-term, however slow-moving it might be.

I am thankful to be in a place where my children are not considered cursed, in a home with working appliances and medical devices.  I am thankful there are people and programs nearby to support us in caring for the girls.  I say this in the light of Grace, while still sometimes overwhelmed by the future for my family.

I was encouraged by the resiliency of the women in the book Half the Sky.  Their stories were unforgettable - with experiences I can't began to fathom.

I do not want to be blind to their struggles, but I can at the same time hope to have a similar resilient nature, with an inner "stertke" to never give up and willingness to ask for help.

I want to find ways to actively engage in this global conversation, to put my faith to work (thanks Pastor Jim).  The book made me think - I'm reading it from the comfort of my home... Are these same issues viewed differently elsewhere in the world?

Somehow it must be possible to fuse together the needs of our kids and family, the stress, sorrow, and joy, with the desire to help meet the needs of people around me and far away from me.

Hope you can figure that out for your life too.

Peace to your homes.


caught in mid-spin... she will make 20+ circles without stopping

not impressed with the tactile exercise - water beads

Rachel not impressed with me taking a photo mid-story

and she was read to sleep, dreaming of her own circus

Friday, February 8, 2013

and it was a snow day

Our first snow day in a long time.... yes, St. Catharines actually had to shovel today.  And shovel numerous times.

Snow is not accessible.  Winter isn't exactly accessible.  

So, I am extra thankful for a porch that extends from the girls' room, allowing them some swing time- even just a few minutes to experience the snowfall.

I am thankful for windows that give both Rachel and Janneke a glimpse of the fun a snow day can be.

I am thankful the nurses scheduled for today and tomorrow live in town, close enough not to be deterred by snowy streets.

I am thankful for the imaginations of Em and Soph who dug holes in the snowpiles, making forts complete with tunnels, doors, and snowy appliances.  (Yes, they were intent on creating TVs for their hideouts.)

complete with removable doors

I am also thankful our appointments at Mac and Chedoke were scheduled earlier this week (before the snowstorm).  Janneke had an EEG on Wednesday, and Rachel had her AFO (splints) assessment Thursday.  Updates will come later.  I also had a chance to observe Rachel in her classroom on Tuesdsay; it was amazing to watch her access the talker button so frequently as she interacted with her teacher.  I can only wonder what she will do as she becomes more familiar with a communicative device.  A good reminder to be patient about the uncertain future.

For tonight, we are enjoying the snowfall from the windows again.

Peace to your homes.

Sunday, February 3, 2013

another sparkler

If I handed out sparkle awards (see last post), I'd hand one to Leah.  I brought Rachel downstairs for Joy Jam this morning during church, wondering if someone would be willing to work alongside her and change bibs for the 45 minute children's program.  Typically, I look to the adults or youth helpers.  This morning, Leah jumped up from her spot and came right over.  

Big smile on her face.  "Mrs. Pot, can I take care of Rachel today?"  

Big smile on my face. "You bet, Leah.  You okay with changing bibs."

"Sure. No problem."

Leah turns 8 this year, one year older than Rachel.  She and her family are all too familiar with finding a new normal as their own family circumstance revolves around health issues.  She is my active listener in our girls' club (GEMS), and she loves to sing.  

Leah took the responsibility very seriously, even finding someone to watch Rachel while she took a quick bathroom break.  I think her morning was made when I taught her how to operate the elevator lift at the end of our service.

My morning was made by her enthusiasm and complete disregard for whatever may be unusual about Rachel's behaviour.  Drool didn't phase her.  Nor did Rachel's awkward one arm hug at the end of program.

Leah, sparkle on.  The Light shone from you this morning, reminding me that Joy comes in all sizes.

Peace to your homes.