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,