Saturday, May 25, 2013

limiting the assumptions

When I am asked about Rachel and Janneke with reference to their special needs, I am often asked about their comprehension.  How much do they understand? Do they understand you?

Truthfully, I am not certain.

I am certain she loved hearing her cousins sing Happy Birthday to her over the phone.

And I am certain that Janneke loved meeting these chickens.  She was yelling and laughing the entire time.

Yet lately, I have been challenged to consider that maybe they are understanding more than I would assume.


Not a great word.

When we look at the outward appearance of someone like Rachel, it is easy to assume that her physical limitations mirror her cognitive limitations - that she probably doesn't get it.

Yesterday I took both Rachel and Janneke to the eye specialist in Kitchener.  As we drove, Rachel became agitated.  I stopped along the way to talk to her and comfort her.  I couldn't be certain what was causing her distress - bowel discomfort? illness?, but I also began to wonder if she was actually nervous.

When we arrived at the clinic and met our doctor, she began to bang her arms on the wheelchair.  Her face became very serious, and she began grinding her teeth.  When the doctor moved closer to her to check her eyes, her hands went up to push him away.  She kept her face bent into her bib, making it difficult for anyone to see her eyes.  When I picked her up to hold her, she squeezed me and then looked at the door.

I think she wanted to leave.

There's a book that we are reading here at home called Out of My Mind.  It's written from the perspective of a ten year old girl who has cerebral palsy and is finally able to communicate with the use of a talking device.  It's written by Sharon Draper for youth, and I recommend it for youth and adults.  I think it would be a powerful book to study in school or as a family.

The story challenged me as a parent to reconsider how I talk and treat Rachel and Janneke.  For all of us, disability can muddy the waters of our relationships.  When we see someone with a disability, do we talk normally to them - or do we change our tone and volume of voice?  Are we quick to do things for those who are affected by disability- without asking if they would actually like the help?  Sometimes I find that as a family, we are treated differently, as if Rachel and Janneke's limitations have dis-abled all of six us.

I can't be certain that Rachel and Janneke comprehend everything I say, but I am thankful for books, people, and articles that challenge me to reconsider and adjust my expectations.  I try to talk to Rachel and Janneke as if they do understand, and I guard my nonverbal behaviour.

I am also especially thankful for kids who ask questions.  Recently at a birthday party, a new friend named Tessa pulled on my arm after meeting Rachel.  She was indignant: "I'm saying hi to her and she isn't saying hi back."  We had a good conversation about limitations, love, and acceptance.

I know I may never know what Rachel and Janneke understand.  They may understand very basic instructions and simplistic ideas, or... for all I know, they might be stuck in their bodies - their minds are ready but trapped.  Either way, I must remember dignity and respect for who they are and for His Image they mirror.

I can't easily articulate the guilty feelings that come when I think that maybe I've assumed less of my children, but I know that I am learning with each experience.  I don't want to be a disability militant, but maybe we can take more time to reflect on our own assumptions and feelings with regards to children with special needs, families with special needs children, and adults who live with disability - mental, physical, emotional, etc.

Peace to your homes tonight.

As a side note: With reference to limitations and the danger of assuming, I came across this new icon being shared, to replace the former "handicapped" symbol:

The icon was changed to indicate movement, progress, and ability.... in spite of the obvious limitations. Read about it in New York City here.

Pretty cool.

Friday, May 17, 2013

Friday night thoughts

My thoughts have been scattered, reflecting on the events in this part of our world of recent.  

The death of a beloved is an amputation.  C.S. Lewis

Among those who have followed, supported, or know the Bosma family, there is a heaviness. For anyone acquainted with grief of any kind, there is a profound sadness that transcends our perspective, challenging our fight to find joy and keep living.  

"How long to sing this song? How long? How long?" U2, "Forty" based on Psalm 40

Today, I had to take Rachel to the doctor.  We are starting a round of antibiotics to help manage what appears to be another infection.  As I drove downtown, I couldn't help notice a little boy with his grandmother skip into Dairy Queen with obvious delight on his face.  Yet, further down the road, I witnessed two girls on foot exchange "f-ck yous" with a motorist as they each claimed the same space of road.

I wanted to send the three angry ones to Dairy Queen with the little boy and his grandma and remind them of how short life can be...that we ought not waste it being stupid.  Instead, we should eat more ice cream together.  Maybe that comes from feelings of regret, missing those shared desserts with people who are no longer here on earth.

Grief shapes you. It's messy. It's complicated. It's not wanted.  It takes root in your heart and forever changes you.

Makes me think of the book Tear Soup.  It's about a woman who makes tear soup -who must make tear soup.

"Because of her great loss Grandy knew this time her recipe for tear soup would call for a big pot.  With a big pot she would have plenty of room for all the memories, all the misgivings, all the feelings and all the tears she needed to stew in the pot over time."

Finding a way to live with grief is as unique as our own grief circumstances.  It may take a lifetime. 

When life comes undone, we look for answers.  We might not find answers.  We might find more questions.  We might wrestle with deep issues that we would prefer to ignore - but can't.

It's okay to wrestle with darkness. 

There is no pit so deep, that God's love is not deeper still.  Corrie Ten Boom

If we know and believe that our Story is not finished, that sorrow of any kind is not the last word, then we learn to breathe, live, and dance again.  The grief is always there, but it is threaded into the fabric of our life.

The music of God's promises begins to be heard - it's an act of faith.  Faith believes there is a music to the spheres that the heart can hear, if it is stilled.  Hope is the decision to dance again to that music.  Hope is a decision, a decision of the heart to live, to dance to God's promises of life in the face of grievous sorrow....We may dance haltingly, with a limp, unsure of our step, but we've begun to live again and joy will return.  Rev. Bernard DeJonge, my dad

Just as the sun rises after the night, there will be joy in the mourning.   It may take longer than we think or choose, but there will be joy again. Lamentations 3:19-23

Peace to your homes.  May we all work to promote peace in our corners.

A Grace Disguised - J. Sittser
Lament for a Son - N. Wolterstorff
A Grief Observed - C.S. Lewis

Friday, May 3, 2013

Happy Birthday, Rachel!


This 7 year old will be the star tomorrow.

Someone pointed out that we have a Pi girl and a Star Wars girl: Janneke was born on March 14 (3.14),  and Rachel was born on May 4 (may the fourth be with you).

However you want to put it, all of us are unique, and tomorrow we celebrate our Rachel.  Made in His image, she brings us joy, and we give thanks for her seven years of life.

As hard as it is for us in our hearts to plan her party, knowing she can't tell us if she likes the balloons or what kind of cake topping is her favourite, we know it is a day to celebrate.  We are so thankful for big sisters who like planning parties and want to make her day special.

Happy Birthday, kiddo.


bedtime stories with Dad, circa 2006