Monday, April 30, 2012

more trucks and more thoughts

So the trucks keep coming to our house...  nephew Caleb thought the gravel pile was an excellent place for his John Deere and Tonka truck.  

The work continues, even when we are not home.  This past Saturday, Ralph and I were gone for the day, but some awesome volunteers showed up to add walls to our frames.  

I told Caleb we could probably fit some cows in the garage.  It's pretty tall now.  While I am at the kitchen window, I catch people slowing driving past the place, sometimes with their mouths agape at the height of the garage.  It helps when the Sprinter is parked in the driveway - then size makes sense to them.  My dear neighbour (behind us) asked if we were building a summer home.

Here's a few snapshots and thoughts from the week:

Rachel had her hair colored pink at NPCC school.  I think a hairdresser was invited to the class as part of their community helpers unit?  It was great to see the obvious delight on Rachel's face when she came off the bus that afternoon, as if she knew her hair coloured pink would cause a stir at home.

* * *

Ralph and I had a chance to attend the annual Disability Concerns conference for Ontario with our church's denomination.  It was a small gathering, but it was a good day - lots to think about and some interesting stories shared.

Yet, I must admit, I felt a bit lonely at times that day.  Our own age demographic was hardly represented, but I did treasure a conversation that I had with an 80 yr old mom of an adult child with special needs.  I am thankful for such faith mentors, even if our interaction was brief.

When I am in the company of such people, I am reminded the definition of disability is so very broad.

There are those who are specifically physically impaired- and those who are impaired in all aspects of functioning.

There are those who are born with disability- and those who have to accept disability as a result of an accident or illness.

There are those who must live each day, keenly aware of their disability -and those who know no different life than one that is affected by disability.

Are Rachel and Janneke blessed by the fact they don't know life to be any different from what it is now? Sometimes I wonder if there is a bittersweet peace for Rachel and Janneke at this time because both girls don't grieve their inabilities.

Instead it is we (parents and big sisters) who grieve - the dream we all had for the girls before they were born. We must learn a new dream.

One of the ideas shared on Saturday was that emotions are anachronistic: our feelings are not limited by time or history. Which explains why I might suddenly feel quite sad about my girls and not be able to explain the timing of my tears. Thankfully, those sad moments are temporary.

Another person said at the conference the feelings that come with the experience of living with disability expose the lie of independence ("I am fine on my own").

When we live with disability/inabilities in our children or in ourselves, we cannot have a healthy life without community.

Sometimes, that community is one you least expect - one mom said to me after welcoming her daughter with special needs into the family, she learned who her true supporters were... certain friends and family distanced themselves because they didn't know how to relate to the disability.

Yet...  are we not all disabled?

Some of us just hide it better or for some of us, it is simply less obvious.  Mental health issues are the invisible disability that many struggle with privately.

Community is so important to our family.  It is not just about having help with buying a van that accommodates wheelchairs or making our home accessible for our girls, it's the fact that we will not journey this alone.  One friend at church said she felt frustrated she could not help; I said that we can always use more prayer warriors.

The knowledge that others are continuing to lift us up to the Father enables and empowers us to keep living joyfully.  The community that supports us is a picture of His grace - a gift we don't deserve.

* * *
Back to our everyday....

Recently, we were able to purchase an iPad for the girls.  In the last few years, iPads and their apps have become available for a fraction of the cost of augmentative communicative devices (communication therapy tools for kids like ours).  Many parents of children with special needs are creating low-cost apps that can potentially develop new stages of communication for kids like ours.

And it's a great interactive piece for cousins.

Speaking of cousins, Sunday was a great day to be with cousins - and at church with our family.  Earlier in the morning, we were able to attend church with the four girls.  For the first time, we brought Janneke's walker with us, and she had a chance to be in her walker during the service. She was so happy! Our sanctuary set-up is such that Janneke could meander around the open space behind the congregation, allowing us to worship and not have to deal with her being overstimulated.  Steve and Michelle came with their girls in the afternoon, and we had a wonderful (accessible) hike from Jaycees Park to Port Dalhousie.

What hike isn't complete without a roll down the hill? (Never mind the fact that after this photo was taken, there was unwelcome contact between someone's foot and another's head.)

We look forward to the month of May - this Friday, Rachel will turn six years old! This Saturday, we welcome any volunteers to our home again; the trusses arrived from the lumber store this afternoon.  

Peace for your week.

Wait - thanks for your coins and support!  The NPCC Radiothon raised over $150,000 in support for the Niagara Peninsula Children's Centre this past Thursday.  Wonderful news.


Monday, April 23, 2012

muddy trails

I came across this quote recently: "He who finds diamonds must grapple in mud and mire because diamonds are not found in polished stones.  They are made." (Henry B. Wilson)

Not sure if Wil and the guys found diamonds, but they certainly grappled in the mud this past Saturday.

Here are a few images from the last week.  

The accessible bedroom, slowly taking shape...

with a doorway into the already finished basement, creating future storage for all the equipment and stuff.

Many helping hands...

means the job is done - and with good humour and the occasional story.

All that hard labour created a great dance floor for Em and Soph...

and balance beam practice too.

And of course, there's always time for a cuppa - and conversation.  If you can give some of your time and talent, we promise good coffee, good baking (thanks Nancy, Rhoda, Marja, and Deb), and a great lunch.

This past Saturday was very rainy, making the job very muddy.  But the volunteers prevailed, perhaps inspired by the promise of Ashley and Ann Elise's chili and soup?

The eats have been served through the sliding doors with Rachel and Janneke watching portion control.

It was quite amazing to see the walls form for the driving shed barn garage.

We've had lots of passers-by, driving around the block to check out the progress.  One neighbour asked if I was building a man cave for Ralph.  I laughed - and then wondered if he was serious because he suggested I visit Home Depot to buy the new man cave signs currently in stock.

We loved seeing the walls take shape for the girls' bedroom.  It will be such a sunny space for the girls as they grow.  I look forward to when we can host an open house for you all to see.

And for our Beacon community (who just finished watching the Narnia performances), I couldn't help notice the lamp post in the foreground as I took pictures of all the helping hands framing the doors and windows.  Door and windows....

As gross as all the muck seems, it is pretty cool when your kids still think nothing strange of inviting a friend over to play in the mud.

Getting stuck in the muck

We finished the weekend with a quick visit to Opa at Shalom (retirement complex).  It was great to visit with both Opa and Oma, and he was quite thrilled to school us all at dominoes.

Janneke was not impressed with the game.  Not a fan of getting her picture taken either (see above).

so we found a picture book of baby animals.  Just the right kind to drool over.

Meanwhile, Rachel had her own studying to do. Every so often, she'd glance at Opa's dominoes to make sure he wasn't cheating.

More work days are being planned for our renovations.  You are welcome to join. Hopefully, it won't be so muddy, but this weather has not been predictable; tonight there is snow in the forecast! 

As for the making of diamonds referred to in the opening quote, I'd say that this gift of labour is- without a doubt- beyond the value of polished stones.  We are so thankful for the possibility to care for our girls long-term in the home safely and with extra space.

This Thursday, April 26, is the NPCC Radiothon.  I'll be on the air at 7:50 A.M. here, here, and here - not sure which order.  Ralph and I will be at NPCC for the morning if you want to stop by and see the place or drop off your spare change. I'll pick up your spare change and take it to NPCC if that is easier.  A bit of change means a big change...

Peace for your week,

Thursday, April 12, 2012

those first small steps

In two weeks, on April 26, the Niagara Peninsula Children's Centre is having their annual radiothon fundraiser.  With your spare coins, it's a bit of change for a big change - in kids' lives like ours.   

I am certain it is difficult to budget fairly for the entire province of Ontario, but the fact remains: when there is no wiggle room in the budget for children's treatment centres, necessary services for kids in the Niagara region are affected.  

In short, NPCC needs more than just the government to support its services.  It has to be everyone's responsibility.

I wonder if we truly understand the long term blessing with a few years or a few visits spent at NPCC.

Remember, our kids grow up and become adults.  

The reality of providing care for cognitively delayed adults is not heart-warming; a recent Globe and Mail article cited 20 years not being an unusual wait time for intellectually delayed adults to find appropriate housing.  Twenty years.   Read this article.

I can't help but see a connection between support given during those early years at places like NPCC and the transition into the adult years.  Children with special needs who receive services from places like NPCC are often better empowered as they age into adulthood.  Supporting NPCC can have a life-long impact on a kid.  On an adult.

Last year, I went on a bit of a coin blitz, asking everyone and anyone to set aside their loose change.  I made cups for anyone who asked, and we were able to collectively give a lot of money.  This year, I've been sidetracked by the girls' health issues... 

Yet, for the next two weeks, I'm asking you to set aside any loose change for NPCC.  I'll pick it up from you or you bring it to me, and I'll take it to NPCC. Consider becoming a Change Crusader for 2012 - all this is explained here.  

If you want to hear stories from Niagara parents, listen in to 105.7 FM, 610 AM, or 97.7 FM on April 26.  If you want to see NPCC, visit the centre on April 26.  We'd love to see you!

Here's a sneak peek of what NPCC does for us:  Check out Janneke painting.  A Picasso in the making.

And speaking of being excited to see NPCC, here is Rachel getting ready for the bus. 

She gets so excited, her legs shoot straight out, and she makes all kinds of verbal sounds, indicating her great anticipation for her school time.

We can't say enough about the resource NPCC is for our family.  Curious about the history of children's treatment centres?  Check this link ( and this link (ministry of community and social services).  It wasn't long ago children with significant needs were tucked away in an institution. 

* * *

Back on the home front...

We continue to see changes on our property.  The cement has been started for the garage, and this Saturday, Wil is organizing a framing morning for the accessible bedroom.  Very exciting!

Our help comes in all sizes - check out nephew Caleb, working in the rain.

And, at the end of the day, we have a very tired Rachel, not even lifting her head to greet her cousins.  (Yes, two of them are dressed as blue princesses.)  We are thrilled that Rachel has been able to attend school for the last week; her blood sugar levels have remained stable for 10 days!

Peace for your week.

Monday, April 9, 2012

our Easter weekend

It continues to be somewhat entertaining, all this action from our sliding doors.  Our girls don't say much to the guys when they come to work, but they certainly watch closely.  So closely that one morning, Sophia ran to tell me that one of the Wassenar men had won something with their roll-up-the-rim Tim's coffee and could I find out from him what he won - a car? a donut?  (She had watched them drink their coffees and waited patiently to see who would dance, holler, or at the very least, rip off the top of the coffee cup to save for later.)

We had a lovely Easter weekend.  Beautiful sunshine and good family memories.  Aside from the pork roast held last summer, it was the first time in over one year (two?) that we took all four girls to a family home visit.  Normally, we host in our home, but that is not possible right now with all the construction. The Sprinter made all the difference with traveling!

Here are a few photo highlights, first from the Pot family gathering at Harvey and Carol's:

Janneke loves any open window.

We watched from afar as some of the Pot cousins went mudding in the fields with Lucas's jeep.  This was inspiring... we decided to take our old Ford Escort (now a field car at the Pot farm) for a spin.  Both Em and Soph had a chance at the wheel.  Soph was fascinated with the idea of turning a handle to roll down the window - as opposed to pushing a button, and Emily decided she was okay with waiting a few years before she has to drive on the road.

We were asked if we would take the Sprinter mudding.  Funny family.

Instead, the go-kart was resurrected from dust and whatever else was in the driving shed.  A much better choice than mudding with a Sprinter.

Yes, that is the go-kart in the soccer game.

* * *

We ventured out to my brother Steve's place on Saturday.  The sunny weather meant our time together was spent outdoors, perfect for wheelchairs.  We didn't have to build ramps or break our backs carrying the chairs indoors, and everyone could be in the same space without feeling crowded.

And no family gathering on the DeJonge/Fluit side is complete unless there is time to dress up and create plays... (Which side of the family is crazier - mudding in the fields or masquerading as who-knows-what?)

There was some sadness in watching my nieces and nephews run around, find Easter eggs, and play all over the yard - knowing that Rachel and Janneke were limited in their movement, but both girls really did enjoy watching all the fun, even when the weather turned cool in the evening.

Back at home, Sophia "schooled" her cousins, her sister, her dad, and her uncle at Monopoly - over four hours at the table.

Today, the yard was dug up to prepare for the garage.  More dirt piles, more neighbour kids watching, and more noise.

So, what exactly is being built?

Here is a snapshot of Rachel and Janneke's room right now. Yes, it is different from what we had last year if you saw the photos or the family video, but the blue room didn't fit the new beds from PC Charity.

Don't get me wrong: we love our new beds!  Yet... the room leaves space for little else.  To provide better care for the girls, and to keep the nurses/PSW in our home, we need to have lifting supports.  This includes tracking on the ceiling (click this for an example) as well as more elbow room for turns and transfers into the chair.

The blue room in the photo below, which currently fits our bed, the feeding tube supplies and misc equipment, will become part of that new room and an accessible washroom that includes space to bathe the girls safely.

The plan includes opening the window wall in the blue room and expanding into the new large room that can accommodate the girls' equipment, the space needed for safe transfers and movement, and adequate tracking.

Here's a couple of photos of what we've got so far.  Can you visualize the walls going up, the entrance leading out of the new room onto a deck with ramp that leads to the garage on the side of the house? We're trying to see it too!

Perhaps you have some framing experience or you are able to help in another way with our renovations?  Email Wil by clicking his name here.

* * *

We give thanks for a good weekend that included new family memories, hot cross buns (Easter treat), stable blood sugars for Rachel and Janneke, confidence in traveling as a family, a church family that loves and accepts our girls -and isn't afraid to wipe Rachel's drool while worshiping, and wonderful sunshine.

We also give thanks that Ralph's dad (Opa) is now adjusting well to his new room at Shalom, and we look forward when Ralph's mom (Oma) can also be in the same retirement home complex.  It was a treat to drive Opa in the Sprinter this weekend, watching him interact with Janneke on the way to the farm.

Peace for your week.  Much thanks for passing along our request for help with the renovations.