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.

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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.

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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.