Saturday, December 28, 2013

twelve pics from Christmas

Of our last few days of Christmas, my camera will share with thee...


...only six hours without power.  Even Soph's homemade minions were cold.  Given that some homes in the greater Toronto area are still without power, we have nothing to complain about.  It was another reminder to consider an alternative power source should this happen again; the batteries on the feed pumps don't last more than a day.


... a great story told by Grandma.  It is fun (and entertaining) to witness the display of talents - instruments, art, video, and, of course, great Christmas jokes from the nephews at the annual DeJonge/Fluit Christmas concert.


 ...hockey in the garage.  Of course.


... the opening of presents.  My favourite is the expression on the two nephews in the foreground.

... a Facetime visit from Victoria, B.C. with Laura, Rhodes, and Callum.



... sisterly love..  Rachel had more not-so-good days, but she rallied and enjoyed Christmas Eve on a bed we made next to the tree.  We aren't certain what is causing the on-again-off-again pain issues.  Guessing isn't fun.



.... Janneke's wonder at the busyness of Christmas.  She seemed more aware this year of the lights, the music, and the family.  She was one of the loudest singers in church on Christmas morning, hollering out when Ted said it was time for the altos to sing.


 ... family, family, and more family.


 ... cousins that don't plan to - but they come matching in their stripes. 



... space to play cards and eat in Rachel and Janneke's bedroom.  The bedroom became a dining hall and games room all the while allowing Rachel and Janneke the necessary space.


 ... games with Oma on the iPad.  She was pretty much the champ at Opa's button game.

And lest I forget, Christina and Kaitlyn were great support with Janneke and Rachel so that we could host our families.


It is another good week of thanksgiving.  Merry Christmas... may the story of Grace in disguise stay with you through the new year.

peace,
spot

Sunday, December 15, 2013

Sunday's sentiments


Still feel crummy, eh?  Well, stay in bed then. Nothing to get excited about out here.  Mom decided not to send out Christmas cards this year.  

Yes, no Christmas cards in the mail this year from our family.  Sorry for those who decorate the fridge with photos like I do.  After this week, it jumped off the to-do list - and will hop back on for 2014.

Rachel is fighting another cold/flu.  Interesting note: she's the only one in the house who didn't get the flu shot this year.  She was on antibiotics at the time we had the shots, so she still needs hers.  Poor kid.

I was home with the girls today while Ralph had Em and Soph out in the snow.  Spending time with just Rachel and Janneke is both good and overwhelming.  It's not as if the girls require so much intense care.  The pace is fine, but it is daunting to consider what they might want -in addition to what they need.  They need their diapers changed, water flushes, feeds running, bibs changed, meds given, and chest physio.

But what do they want?  Do they want me to talk to them? Do they want to be left alone? Do they want to watch TV or would they rather stare at the snow? Do they want to be in the livingroom, the kitchen, or their room?  Do they want me to read countless stories or do they want to just listen to music?  The guilt comes when you wonder if they are trying to tell you but you aren't understanding them... and you find yourself almost weary of guessing.  You don't want to miss something and you don't want to neglect them.  Rachel and Janneke are the kind of kids that could easily be neglected because they don't cry for attention.  

Sometimes that makes me weary - and sad.

But, then there are the times when I follow Janneke and try to figure out what she wants.  She has the ability to move from place to place, so I have a glimpse of her preferences.


She loves the doorway to her room and the transition piece from hallway to her room.  She could stand there for a long time.  Funny.  She also loves to visit her sister in bed. I love that.


And then she might just stop and stare. At what? I have no idea.  Maybe she's pondering some amazing concept that we haven't grasped yet.


Last week, we suspect Rachel choked on? swallowed? her loose tooth.  We can't be certain, but we are almost sure. When I tucked her in a couple of nights ago, I talked to her about the loose tooth.  Her eyes widened, and she hit my arms with her arms as if to share some of the emotion (fear?) of losing the tooth.  She is using her arms more and more to indicate cues.  The school is working this with her, and we are thrilled to see how seriously the staff take her nonverbals.

Mind you, all the signing and cueing has to wait.  She started her cold this week, so the kid is down for a bit.  Cute she is.


peace for your week,
spot


Sunday, December 8, 2013

sunday's 10

Janneke loves anticipating the tickling fingers of her dad

10 photos from the last 10 days.

It was a quieter weekend.  Time to catch up on the loose threads and ends.

My last conversation with Dad Pot was the afternoon of November 28.  Earlier that morning, I spoke at a chapel at Rockway Mennonite Collegiate, and I shared our family's story.  I tried to be transparent in talking about the difficult choice to choose to live joyfully, particularly when the the cup of joy is not overflowing.  After the chapel, I stopped in at the hospital to see Dad and Mom Pot.  I wanted to believe this would not be my last time with Dad.  Yet, to see him dealing with the pain and discomfort, who was I to wish him more earthly time?  

As sore and pained as he may have felt that afternoon, he had a twinkle in his eye and a smile when I showed photos on my phone of the girls.  He laughed at Sophia's mismatched socks and Janneke's mischievous grin.  He loved his grandchildren deeply.  They brought him distraction and joy.

And that is it.  Joy. When death or darkness comes, that joy might be disguised, but there is still joy.  

Peace to your homes,
spot


 Catching a movie with a cousin

 Snuggling with Liam, baby son to Soph's cousin Melodie.

 setting up the tree with Grandpa

Posing nicely for Mom

 Reading Christmas stories during Joy Morning at the girls' school

 Spending time with good friends...ones they've known since infancy

 Introducing Janneke and Rachel to the tree

Playing Opa Pot's button game on the iPad "negensticken"

 Teaching Oma how to use her new stylus pen that she immediately named Harry.  
Harry will work for her when her fingers are sore.  

Tuesday, December 3, 2013

with love for Opa





This morning, we laid to rest the earthly body of Gerrit Pot, Ralph's dad. We celebrated his life with family and friends this afternoon, and we give thanks for that.  It's a bittersweet feeling.  We know he is no longer suffering, but we now suffer his absence.

He had a special connection with his grandchildren, and we loved his love for Rachel and Janneke.  I've posted these photos before, but they still speak to the care and attention he gave them.

I struggled with how to involve Rachel and Janneke these last few days of family time, visitation and the funeral.  Do they even understand death?  Last night, both Rachel and I were restless, and I got this sense that she knew something was different.  This morning, Ralph and I decided she would join us at the funeral - if anything, to be a part of the family for Oma's sake.  Following the procession into the church, I sat down beside Sophia and took Rachel out of her wheelchair to sit on my lap.  As soon as she sat on my legs, she tilted her head to lean on Sophia's shoulder.  I moved Rachel to sit on the pew between Soph and me, and she leaned on Soph most of the service.  It was obvious there was a shared emotion.  I can't prove that Rachel was grieving, but I do believe she knew Sophia was sad - and knew we were sad as a family.  It was a powerful moment.

We give thanks for Dad's life, and we give thanks for the gift of family.  These past few days have been filled with reflections, and we are reminded of the grace God extends to us and the grace we ought to extend to each other - through the thick and thin moments of life.  We have appreciated the meals and various forms of support from our extended community; the fellowship of the saints rocks.

Death is real, but Life prevails.  

peace,
spot

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. 


peace,
spot

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.

peace,
spot

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.


Peace,
spot

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.

Peace,
spot