Monday, December 24, 2012

Merry Christmas

The flu has flown.

And in good time.

From our backyard to yours, Merry Christmas and Happy New Year.


Thursday, December 13, 2012

flee, flu, fly

I wish this flu would fly.

Rachel and Janneke have been dealing with a nasty flu bug this past week.  I thought we had turned a corner Monday... but nope.  Then thought we turned a corner again on Wednesday... try again.  I'm too old for this.

It's a bit of a guessing game as to how to help them.  When they cannot tolerate their formula, we have to create new recipes that usually include Pedialyte and whatever else to prevent dehydration. A g-tube makes life so much easier in these moments.  Chest physio and taking them outside for a few minutes on the covered deck also helps too.

Mendelt's music therapy sessions (recorded on the iPad) bring much comfort to Rachel.  These last few days, she has been laying in bed, content to be still and listen.  Medicine for her soul.

Over the past week, there's been more laundry than sleep - and lots of worry.  I am always surprised by my higher levels of anxiety that accompany Rachel and Janneke's illnesses.

It's not as if I am not concerned when Emily and Soph are sick.

It's more because of all the unknowns with Rachel and Janneke, I wonder if their bodies are strong enough to fight.  Anxiety creeps in and consumes me.  Each time they get sick, I wonder and worry. When they return to good health, I breathe deeply again.

Anxiety is a thief that steals time, energy, and joy.

* * *

I remember a different kind of anxiety when my first daughter was placed in my arms.

That was an experience of terror and love rolled into one moment.  I realized I was more confident of leading a gym full of kids from Kindergarten to Grade 8 than assuming the care of this single (albeit beautiful) 8 lb infant.

And I had thought I was all set to be a parent.

Funny how you have these expectations for your child - their name, where they will sleep, the sweater knitted by Oma they will wear, complete with booties... all these great future activities and goals.

During the first weeks of Em's life,  I thought I was soothing my anxiety by reading various parenting books and asking others for advice.  But all that work only served to further befuddle me.

I remember Ralph saying to me in a sleep-deprived, exasperated moment, "Throw all the books and advice out the window!"

Try as we may, we cannot orchestrate the perfect kid.  Makes me think about this article on genetic testing.

That child you are anticipating maybe so very different from your expectations.

All four daughters continue to surprise me.  Though Em and Soph seem to fit some of the "normal girl" patterns, they are still so very different from what I first expected when they were placed in my arms.

Obviously, Rachel and Janneke are not all what I anticipated - and there was a sorrow when we celebrated their births.  Yet, they have also surprised us as they develop, and I can testify to the stubborn joy that pervades even these flu-ridden days.

Now if only that flu would fly.

* * *

Despite the sick stuff, it is starting to look like Christmas here.  Thanks to some good friends, there are decorations outside and inside.

The tree is up, and Em and Soph painted the windows on their own this year.  I am humbled by the way they "step up" when I am consumed with their sisters' care and can't help them.

We recognize this season of anticipation for Christmas in our family with a couple of traditions - the Advent candles, a story (this year, it's Jotham's Journey by Arnold Ytreeide), songs, and other remembrances.

All of this points to a Baby who both shattered and exceeded human expectation, a story that I wrestle with daily.  A story that reconciles a loving God with a broken world - a story that isn't easily understood or accepted but carries amazing grace.


Friday, December 7, 2012

reflections from today's drive home

Another week, another birthday.

I had my birthday this week.  Thinking it would pass quietly, as many do now that I am almost "growed up," I  focused on the tasks of the day - Janneke's preschool program, Rachel's third serial casting of her feet, and groceries, etc.  Yet, that night when I went to the computer, I was overwhelmed with countless virtual messages of love and congrats, thanks to Facebook and Ralph's bold request to ask for such messages.

Considering what feels like a fight these days for stubborn joy, the notes on our FB wall were beautiful reminders of being surrounded by community.

Feelin' the love.  Thanks.

Today, I took the girls to Mac to visit with our paediatrician.  Em and Soph jumped at the chance to hang with their little cousin Aleah, and my sister Rhoda willingly hitched a ride somewhere along Dundurn St. in Hamilton and helped me out at the appointment.  Actually, Rhoda has come along so often that she and the paediatrician exchanged pleasantries first (how are you? good to see you again).

I am very thankful for a doctor who demonstrates family-centred practice.  Someday, when I can carve more time and energy, I want to devote it to working with med. students on cultivating a strong family-centred practice in all disciplines.

Our paediatrician sits down and gives direct eye-contact.  No checking the pager, phone, or watch - or reading the chart while listening to me prattle on.  No repetitive questions or me regurgitating the same info over and over. He asks questions about how the family is functioning, what support systems are in place. His definition of good health and care for Rachel and Janneke includes a whole family check-up.  Our appointment is at least one hour of his time.

I call that proactive and progressive.  We need more of that.

Today's appointment included some concerns that I have with the girls' development, so we will have a few investigative tests in the future.  Yet, overall, the girls continue to shine - with so few expectations placed on them at birth, they continue to amaze all of us in their abilities.

* * *

Part of the appointment included a conversation about soothing and stimming behaviours. For parents, this can be a challenging topic, yet the reality is, we all have our methods and vices.  How do you deal with sensory overload?

Related to sensory processing issues, examples of soothing or stimming behaviours for many children include banging ears, banging head on floor or wall, spinning in circles, finger flapping or finger flicking, fixation, obsession with order, and teeth grinding.

It is a tough topic because many stimming/soothing behaviours highlight the difference between what society says is normal and abnormal.  In fact, there are behaviours not listed which are part of the private challenges parents and caregivers deal with - ones not easy to blog or talk about.

Rachel and Janneke's stimming and soothing behaviours are fairly mild.  Yet, some of their behaviours drive me a bit nutty, and I wrestle with my desire -yet inability- to control their actions.  It's complicated: we have these daughters who come with many questions and issues beyond our understanding - and then they develop behaviours that are also hard to understand or tolerate.

Funny how we celebrate such accomplishments of standing in the pool or giving "five" with the hand, but we are not so keen on these other abilities.  But, when I step back and really think about it, I have give some allowance.  We do control so much of Rachel and Janneke day-to-day routine; they must want something to claim as their own - their own way and their own space.

I was reminded of Rachel's desire to control her space when I put her on Sinter Klaas's lap last week for a photo op.  She tried her darnedest to get away by rearing her back.

Not so abnormal.

As I was driving home from Mac this afternoon, I felt reflective; birthdays inspire contemplation. I am amazed at what we've learned these six short years - and I wonder what the coming year will bring.

I hope for open eyes, open ears, and an accepting heart - even when I feel bewildered over the changes or overwhelmed with what is the "right" way to do this or that.

Setting aside the deeper reflections, for the rest of December, we will focus on Rachel's feet, concluding the serial casting and forming new splints that may enable her to bear weight consistently. Time will tell.

I'll sign off now, ready to be soothed by the music of Sarah McLachlan's Wintersong album.

peace for your week,

Tuesday, November 27, 2012

Another bittersweet goodbye

Wool sweaters, cheese puffs ("cheesies"), pink wafer cookies, jelly beans, and afghan (blankets).

Yep, that's a bit of what comes to mind when I think about my Oma DeJonge.  She made beautiful sweaters and blankets and almost always served her grandkids (and great grandkids) jelly beans, wafer cookies, and stale cheesies.

Oma DeJonge died this past Sunday. On Thursday, I will join my brother Dave and other cousins as pallbearers.  She was 91 years old and ready for her heavenly home.  She was not afraid to admit that she was tired and worn out.

And rightly so.  At first glance, parts of her life seem almost romantic.  As a young woman living in The Netherlands, she met and married a handsome Dutch boy who had to hide on her father's farm along with her brother and a Jewish friend.  The three boys were hoping to escape the German army - work camps for two of them and the death camp for the other.  All three boys survived the war - and Opa married Oma.  The same three boys emigrated to Canada and lived long lives.

A novel could be written with that as a plot line.

But the true story lies in my Oma's memories.  It was a difficult life, moving to a strange cold country, raising babies in a culture that was different from home and a language that was not familiar.  As grandkids, we learned that good experiences came from the challenges.  But I don't think Oma would describe her life as romantic.

She and I wrote letters because I was unable to visit her as often as I wanted.  In fact, I received a letter from her a few days before she died.  I'll be keeping that letter close.

She often asked how I was able to cope with my kids and their needs.  I reminded her that I was not boiling my diapers on the stove to clean them!  We always had a good laugh about that.

My Oma was honest about her life and how she felt, kind thoughts or not-so-kind thoughts.  A difficult life makes the emotional side of living complicated, and she knew that.

In recent weeks, I've had a number of conversations and experiences related to suffering and death.  I have been reminded how quickly we jump to platitudes and cliches - either in trying to gloss over our troubles or in trying to bring comfort.

Those tidy phrases may have their place, but when we are sitting in the shadow of suffering, those words fall short.

I think my one of my favourite verses in the Bible is from Job when his friends come to visit:

Then they sat on the ground with him for seven days and seven nights.  
No one said a word to him [Job] because they saw how great his suffering was.

They sat on the ground with him. No one said a word.

Sometimes the silent company of a good friend is far more comforting than a handy phrase or expression of concern. Gives a person time to think - and find honest words.

Oma was not afraid to be honest with her troubles, yet she knew her difficulties wouldn't consume her. She showed a quiet resiliency and strong faith that carried her over many challenges, giving her glimpses of joy in her knitting, grandkids, books, and adventures in that small blue (VW?) van she and Opa would take over the country.

I want to learn how to balance the honesty of living with the promise that God will provide the strength to live and the grace to accept what doesn't always measure up to my expectations.

* * *

Before I put on a sweater, throw an afghan over my legs, and snack on stale cheesies, jelly beans and wafer cookies, here are a few photos from the week:

Rachel actually slept through her casting procedure last week.  These will be on for two weeks, hopefully helping to strengthen her legs and gain more flexibility in her feet and ankles.  We started two weeks ago, and already she is doing some supported active weight-bearing on her feet!

Janneke took time to explore the back hallway of Beacon while I watched Em and Soph sing at chapel.

The garage has shown purpose for more than just storage.  It's handy for kids who are learning to play band instruments.  Enough said.

And we had a great visit with Christina who was back from Calvin College for American Thanksgiving.  Poor Christina had to listen to Ralph and I pull out our college memories, not wanting to admit it has been quite some time since we were on campus...

Peace for your week.

Monday, November 19, 2012

balancing sorrow and joy

We said our earthly farewell to a dear friend last week. The two photos above show just a glimpse of the love given to Rachel (and to the rest of our family) from Miss Ruth.  Ruth Maher was our first nurse, assigned to our home when Rachel was discharged from the NICU in June 2006.  She worked in our home until the end of 2010 when she had to leave for health reasons. 

Ruth and I shared many cups of coffee, conversations, recipes, and stories.  She brought us into her life by way of stories of her husband and children, and we quickly counted her as part of our family.  At a time in my own life when I especially missed the presence of my mom, Ruth stepped into our home and added a beautiful piece to our puzzle of a family.  We give thanks for her life and the fact that she is no longer in pain, but we acknowledge her absence will be felt by her family forever.  We will always remember the gift of love she so easily gave.  I cannot help but wonder if part of Emily's inspiration to play piano comes from those early days when Ruth would play for us.

* * *

I had a wonderful walk with a friend on Friday.  We shared a lot of laughs, some good stories, a few dreams, and some private heartache.  Good for the soul.  And I let her drive the Sprinter.  That brought more laughter - and will probably become exaggerated into a story or one of her plays someday.

In one of our more serious moments, we talked about trying to reconcile the sorrow and the joy that comes with living this journey of faith.  It isn't about first grieving and then being happy... it's about balancing the sorrow and the joy that is ever present.  The challenge lies in remembering that our sorrow ought not shadow someone's joy - or our joy to diminish someone's sorrow.  

From my kids' perspective that means even when they are sad about someone they love dying, they can still make a fort with a friend and tell jokes by flashlight.

That's probably something many of us can relate to... the idea of balancing the ups and downs, knowing the future can be uncertain.

For me, Friday night had some tough moments when Janneke's blood sugar level kept dropping with no cause.  Though within a span of 90 minutes her levels resolved and stabilized again, I am not a fan of these critical "down" moments.

Savouring the joy is preferred: sharing jokes under a canopy of blankets, a walk along the water with a friend, a impromptu family dance (CBC Radio 2 Drive is a favourite) , having chili and soup with dear friends... just a few moments from the past week.

* * *

We took seriously #6 from a previous post and enjoyed a walk in the quarry with friends: 6. I shall open my eyes and ears. Once every day I shall simply stare at a tree, a flower, a cloud, or a person [or cows]. I shall not then be concerned at all to ask what they are but simply be glad that they are. I shall joyfully allow them the mystery of what Lewis calls their "divine, magical, terrifying and ecstatic" existence.

And I am thoroughly enjoying Janneke's wonderment with her swimming class (part of the preschool program at the children's centre): 7. I shall sometimes look back at the freshness of vision I had in childhood and try, at least for a little while, to be, in the words of Lewis Carroll, the "child of the pure unclouded brow, and dreaming eyes of wonder."

Behold those dreaming eyes of wonder.  Eyes that want to go under the water - but can't for Mom's legitimate fear of aspiration.  So, I let her put her nose and chin in for now.

And look at this little standing queen in the water. Such poise.  She is free-standing and loving it.  Yep, there was joy in the morning swim today.

I am thankful that God's arms span beyond our doubts, tears, angst, and questions.  He can handle it.

Peace for your week.

Tuesday, November 13, 2012

a cousin's speech and our Sprinter shuttle

We found some fish.  The aquarium channel provides low-maintenance pets - friends for Janneke to holler at as she moves around in her walker.  Here she is, eyeing her blue and yellow buddy, complete with a whale spout ponytail on her own head.

Makes us think about getting a high-definition TV someday just so we can see the anemones clearer.  That, and maybe the occasional hockey game.

These past few weeks have been filled with stuff.  It seems these last few months have been busier than I anticipated.  It's been challenging to find time to journal and blog.

Not long ago, our family had a chance to hear cousin Chantal Huinink speak and the Momentum Choir sing.  The event celebrated Christian Horizons, an organization that serves adults with exceptional needs.  For my mom's family, CH provided a place in a home in Woodstock for my uncle John when the Oxford Regional Centre closed.  When I attended my uncle's funeral, I was overwhelmed by the love John's CH family gave to him.  It was a beautiful extension of family and community that my oma, opa, aunts and uncles desired.

I loved listening to Chantal articulate living with disability.  She was serious and funny - reminding all of us of our own inadequacies and encouraging us to live in community with each other.  During my high school and university years, my parents used be caregivers for Chantal (respite), and I couldn't help but think my mom would have been mighty proud to hear Chantal speak.  Chantal continues to study, having already accomplished a Master's Degree.  The three letters of "dis" fade when she talks - showing us her ability to do so much more...

And the choir? It is always a treat to hear Momentum Choir sing.  You can see Janneke's ponytails in the foreground here, but when the choir started with "Born This Way" - yes, that's Lady Gaga music, Janneke was spinning around and around in her walker, anxious to move right in front of the choir.  I had to pull her to the side to prevent her from stealing the show.

Talking to Mendelt (choir director) later, we agreed that high compliments of the night were found in both the tears of a woman listening to Cohen's "Hallelujah" and the jubilant swaying/clapping of a young man sitting cross-legged on the floor right behind Mendelt as he directed through the songs.  A choir of exceptional needs singing for an audience of exceptional needs is a rare and beautiful moment.

Yep, Rachel loved the music too, while also battling some muscle spasms -poor kid.  By the way, if you want to hear the choir, come November 20 to their fundraising gala... click here.

This past weekend, I had a chance to catch my breath and take three days away... two in Minneapolis and one day flying.  A chance to sleep through the night uninterrupted and a chance to do some reflecting.  More on that later.

Tonight, it is the kids, laundry, and typical night stuff.  Rachel and Janneke are both dealing with colds - and Rachel is still bothered by muscle pain.  They have both missed school and are spending more time in their beds.  It is never easy trying to decipher what helps a kid feel better, but tonight, Rachel was rubbing my hand and arm while I read to the two of them.  For a kid who isn't able to verbalize her feelings, I will take that as an indication of comfort.  Very sweet.

Janneke seems to be feeling a bit better - evidenced in more hollering at the fish; today's nurse concluded there were clear chest sounds when she examined the girls with the stethoscope. (Did I mention before how much I appreciate the help of nurses each day?)  Here's hoping they can both be back in the saddle by Thursday.

For the next couple of weeks, we are going to try serial casting with Rachel's feet. She's been casted before, and she's had surgery before - all to correct her club feet.  We are going to try one more time with the casting, and we hope to straighten her feet enough to encourage her to bear weight on her feet. The expectations are low, but we are still optimistic she has the desire to stand.  Time will tell.

Though I am still mulling over the days I spent away from home, I can at the very least say that returning from a respite can be overwhelming.  When you have the time to step away, coming back reminds you that the busy routine hasn't changed.  Ordinarily, I am consumed by my daily routine; stepping away is emotional because I see beyond my little life for a brief moment - and realize that there may not be a choice in the life I have, but there is a choice in how I live it.  Lots of thinking to do...

Wait.  Funny moment to share: Ralph came to pick me up from the airport with the girls in the Sprinter. As I prepared to step into the van, a man and his daughter also proceeded to come along.  They mistook our family Sprinter for an airport shuttle.  He was very apologetic when we said there wasn't any more room in the family.

Hmmm, maybe we could visit the airport more often and make a little cash on the side....

Peace for your days.

Sunday, October 28, 2012

open eyes and ears

Yep.  Took a few photos this week.

So, there was a fuss created, mostly south of the border, with Ann Coulter's careless use of the word retard.  Yeah, I said it.  And I don't care for the word at all.  In fact, it bothers us a great deal when we hear it.  Unfortunately, the word is still used to describe our girls in both professional and casual conversation... and it hurts when we hear someone use it as an insult or when they are frustrated with their stapler.  I think you get it.

There were some creative responses to Ann Coulter's comments, most moving was this one.

I know we can't change everything.  We can only hope that a media stir as such was created will remind us to show grace, create understanding and promote awareness.

For now, we'll keep on doing what we're doing.  Hopefully, the sale of thesauruses will increase as people search for new describing words.

* * *

The other day, Janneke took to exploring the garage, making sure the Sprinter fit.  Pretty nice bat cave, eh, kid?

The birthday parties were a lot of fun for all.  Soph wanted hers at home, all organized by her - games that had prizes and dressing up.  Em asked Uncle Harvey and Aunt Carol for another farm party, complete with an obstacle course, hayride, and hot dogs over a fire .  Lots of good memories...

Today, Ralph showed me a great list of 10 resolutions for mental health (via this link with John Piper).  Here they are for you:

1. At least once every day I shall look steadily up at the sky and remember that I, a consciousness with a conscience, am on a planet traveling in space with wonderfully mysterious things above and about me.


2. Instead of the accustomed idea of a mindless and endless evolutionary change to which we can neither add nor subtract, I shall suppose the universe guided by an Intelligencewhich, as Aristotle said of Greek drama, requires a beginning, a middle, and an end.
I think this will save me from the cynicism expressed by Bertrand Russell before his death when he said: "There is darkness without, and when I die there will be darkness within. There is no splendor, no vastness anywhere, only triviality for a moment, and then nothing."
3. I shall not fall into the falsehood that this day, or any day, is merely another ambiguous and plodding twenty-four hours, but rather a unique event, filled, if I so wish, with worthy potentialities.
I shall not be fool enough to suppose that trouble and pain are wholly evil parentheses in my existence, but just as likely ladders to be climbed toward moral and spiritual manhood.
4. I shall not turn my life into a thin, straight line which prefers abstractions to reality. I shall know what I am doing when I abstract, which of course I shall often have to do.
5. I shall not demean my own uniqueness by envy of others. I shall stop boring into myself to discover what psychological or social categories I might belong to. Mostly I shall simply forget about myself and do my work.

6. I shall open my eyes and ears. Once every day I shall simply stare at a tree, a flower, a cloud, or a person [or cows]. I shall not then be concerned at all to ask what they are but simply be glad that they are. I shall joyfully allow them the mystery of what Lewis calls their "divine, magical, terrifying and ecstatic" existence.
7. I shall sometimes look back at the freshness of vision I had in childhood and try, at least for a little while, to be, in the words of Lewis Carroll, the "child of the pure unclouded brow, and dreaming eyes of wonder."

8. I shall follow Darwin's advice and turn frequently to imaginative things such as good literature and good music, preferably, as Lewis suggests, an old book and timeless music.
9. I shall not allow the devilish onrush of this century to usurp all my energies but will instead, as Charles Williams suggested, "fulfill the moment as the moment." I shall try to live well just now because the only time that exists is now.

10. Even if I turn out to be wrong, I shall bet my life on the assumption that this world is not idiotic, neither run by an absentee landlord, but that today, this very day, some stroke is being added to the cosmic canvas that in due course I shall understand with joy as a stroke made by the architect who calls himself Alpha and Omega.

I think I'll print that list out and stick it on the fridge.

Peace for your week.

Oh, a lesson learned: Don't serve cake on a hayride.

And a special thanks to Nancy and Doug Roorda for raking our leaves each year.  Such a treat - and such a huge help.

Monday, October 22, 2012

birthdays and more

Today, we celebrated Emily's birthday - and last week, we celebrated Sophia and Ralph's birthdays.  Sophia hosted a party on Saturday, complete with gummy worm ice cubes, Ralph ate cake with a school of kids, and Em's got some mysterious plans for later this week.  I'm about birthdayed-out, but we are so thankful to mark another year.  And here's to many more birthdays, D.V.

In some ways, it feels like the last few weeks have been a bit blurry.  I experienced more back trouble again -which leads to more reflection and more frustration.  Probably both are good for my character over time, but I am not a patient patient.  Thankfully, I am able again to lift and manage the girls without extra help.  Here's hoping the back doesn't bail again.

I was distracted from my back issues by helping coach Sophia in cross country running.  Although I was no longer able to run with the team, I loved the chance to forget about my pain and watch the kids improve at their ability to run.  We finished with a cross country meet this past Friday, and I was so proud of those kids for finishing!  It was an amazing feeling to watch Sophia cross that finish line, knowing she completed her first race.  Check out the story here.

Rachel and Janneke are doing well these past few days.  A few weeks ago, we met with a specialist that is known to be a "puzzle solver."  He was a great person to meet who knew we didn't want to waste time with unnecessary questions or tests.  We learned that he was unable to offer any new advice or tests; so far, our girls continue to be undiagnosed.  I was impressed by his follow-up through email, and he made himself accessible to questions we had after the appointment.  Specialists like him are great to work with - I can hope that we meet more doctors like him in the future.  

Admittedly, it is a bit discouraging when we hear that there are no tests known that could help us better understand our girls.  I know that any new label or diagnosis wouldn't necessarily change our daily care for the girls, but when there is a diagnosis, many of the concerns and worries are validated - or named. Some parents talk about feeling a sense of peace when they can name the syndrome, instead of constantly listing all the anomalies.  As my friend Fraser put it - you "regurgitate" the list at every appointment.  That is tiresome.

There are weeks when we feel extra sensitive to the looks, questions, or comments made about our girls.  Funny how some days you can just brush that off - and other days, you can't shake the look someone gave you or the strange thing someone said.  Such is life.

I haven't taken as many photos in the last few weeks, yet I can recall the determination on Rachel's face last week as Aunt Jean, Aunt Alida, cousin Marg, and I toured Rachel's school and watched Rachel figure out a cause-and-effect music program with her teacher.

I can recall the joy on Janneke's face as she experimented with putting her nose in the water during her water therapy class.

I can also recall the tenderness in soon-to-be-six-years-old Kalan's eyes as he walked alongside Rachel in her chair during a hike yesterday.  He gently put his hand on hers and talked about how he'd like to see Rachel visit Grade 1 at Beacon sometime soon.

I love the chirps Janneke makes as we get closer to the children's centre for her preschool program.  She is learning to anticipate the time she has with new friends.

I love the songs Rachel sings as she sits alongside Emily at the piano after supper.  Emily plays a great Canon in D, and Rachel makes up her own words.  It's pretty cool.

I know that all of us have stuff to deal with - whether it's physical pain, job loss, a sudden change in health, an unexpected diagnosis, people who can disappoint you.....  and yet, it's still a daily decision to choose to find the joy in the moment.

That's what I'm trying to do.  Choose joy.


And as an afterthought: an interesting video.  It's 14:07 minutes of time not wasted:  ESPN (yes, the sports network) - Down's Syndrome - a father's honesty - and the same running stroller I used for Rachel's five years of running....