Saturday, October 25, 2014

Ah, the token pumpkin-fall pics.  Yep, we got them. Janneke's class visited a local farm this week, and Rachel's class had in-class fall fun this week.  The school staff hooked Rachel's switch to the mixer in their cooking session.  She loved being a part of the action! Rachel brought home pumpkin pie tarts that we devoured.

Em and Soph had the day off on Friday, so they came along on Janneke's class trip.  Janneke gave us all a big smile, and she preferred to lay her head on her sister's lap instead of sit up for the wagon ride. Watching the sister interaction is always a treat.

Sometimes I am asked what I do with my time.  At this point, I am not working outside the home due to family circumstance, and there are times when I mourn the gap between my BA and almost-MA with my typical day....  I didn't think my university education would be preparing me for this.  

Yet, the days are filled with such a variety of experiences, it's like a liberal arts life.  There is no set routine, and a day (when the kids are healthy) might include anything from volunteering at the kids' schools/centre to phonecalls with a doctor about a prescription and upcoming appointment to parent advocacy meetings to staring out the window at nothing in particular (due to consistent wonky sleep schedule ) to visiting with a friend - and then there's the laundry, the family needs supper (again?), and looking after Luna (the dog).  Who ate glitter again. 

This week, I co-led a parent presentation with a social worker friend of mine.  From time to time, Ralph and I are asked to share our story, and I find each session to be memorable.  We don't share our story to draw extra attention to ourselves; we share our story because we wish for more parents to tell their stories. Each time we gather together, someone mentions how the words that were shared have helped them articulate their own feelings. It's the "I'm-not-alone" realization that brings tears and laughter among strangers. 

The group of parents I met this week all have different stories from mine, but we share a common bond in our kids being unique from "normal" - and we are all on a journey of creating a new normal.  One mom shared that for a time, she thought she was looking for balance, yet, more recently, she has changed her quest - not for balance but for harmony.  Her life and the complexities of it were teaching her that there might never be a balance of good and not-so-good or a balance in time, sleep, activity, stress.... Instead, she was learning all of the bits and pieces in her life could create a kind of harmony.  

I think many of us, no matter the circumstance, are anxious to create meaning from what unexpectedly happens to us.  We seek to draw lines around the story, so we can find balance and something familiar.  Maybe it's fear of the unknown and of the future that drives us to desperately find the meaning and purpose.  In trying to find balance, we become more frustrated. There may never be clear meaning in this earthly life; trust and hope become big words to swallow.    

So harmony it is.  Learning to let all the stuff -good and not-so-good- create a new song, a new normal that isn't always familiar, isn't always what we want, and isn't nicely balanced.  But, there's still good in it.    

I loved these two photos sent to me this week.  They show Rachel reaching new steps in her life - being willing to experience autumn with her feet and hands.  Pumpkin seeds and leaves.  So cool.

I want to hang on to these good bits, so when the not-so-good creeps in again, I am encouraged to hope and trust.  This week, I read an article about a mom who wished her son's life hadn't been.  Her adult son with special needs cost her much joy in their family's life, and you could feel the enormous heartache through her story.  My heart hurt so much -for me and for her- when I read her words. Though her journey and decisions are different from ours, some of her anger and sorrow is familiar.

We give thanks for the lives of our girls, and we give thanks for the support that comes from family, friends, and parent presentations that turn strangers into friends.  Life isn't meant to be lived independently.  Sometimes, when it's a tough moment here in our house, Ralph and I will say to each other, "Remember, we're in this together." Not alone.

wishing for peace,

Saturday, October 18, 2014

week's end

She's officially a Scout.  

Yesterday, Rachel was welcomed into the troop at her school.  Each year, the troop works with a few of the older kids at the Niagara Children's Centre School.  Last year, the troop leaders went along on a zoo trip to ensure kids like Rachel had an accessible (and respectable) change station. 

In the past,  Rachel participated in some of their events - and won the Kub Car Race. Now, she's officially in the troop.  And already two badges on the scarf!

Friday was a full day - Rachel became a Scout, Soph ran in a cross country race, and we finished the day with a birthday party for Soph.  It was the kind of busy that encourages post-party thankfulness: come home from a busy day of working and coaching/cheering, welcome a new nurse, get the birthday party gang started on an activity, clean Rachel's wheelchair (accidents happen from time to time), go back to the party, check in with the nurse, bandage a cut finger from a partygoer, and listen to the girls sing songs as their way of measuring time in taking turns on the trampoline.

What we mean is that when all the party dust has settled, the kids are delivered safely home, and our kids are tucked in, we give thanks for a Scout troop that sees value and worth in welcoming kids like Rachel into the troop, cross-country races that teach our kids more about themselves and allow for new friendships to start, great school chums for Em and Soph, loving nursing care for Rachel and Janneke, good humour that reminds us to laugh when the pizza dough is on the floor instead of the oven, and great memories to savour.

peace for your weekend.

Sunday, October 12, 2014

Happy Thanksgiving

Happy Thanksgiving from our turkeys to yours.  

Looking back on the past week, I am thankful for days when everyone is healthy, for days when I can see my girls in school events...

And thankful for the moments when our new "caregiver" - aka Luna - listens.

There is much to be thankful for.  And we are learning to trust that when things are going well or when things are not, there is still good to be found.

Today, October 12, is a day when we also remember fondly Opa - Ralph's dad. It's been almost a year since he passed away, but today would have been his 86th birthday. We cherish the years we had with him. 


Monday, October 6, 2014

and the award goes to...

Last week, Rachel won an award at school.  The award? Transition.  As in Rachel won an award for transitioning smoothly from the previous school year to this school year - different classroom and different team of teachers within the same school.

It's been almost 9 years since I learned I was going to be a parent of a child with complex needs... I am still transitioning.  

As I watched her receive the award - and watched Janneke move around her classmates in her walker, I was reminded of a phrase I read earlier in September: redefining hope.  Tim Keller uses the phrase in his book The Prodigal God.  I like the phrase because it can be cut and pasted on a lot of situations.

There's a scene in the Disney movie The Odd Life of Timothy Green that sticks with me: After being told they are unable to conceive a child, the husband and wife are at a loss with how to reconcile a dream that is beyond their reach.  They sit down on the couch in the evening with a bottle of wine and decide to write down on pieces of paper all the things they had hoped their child would do.  They wrote things like "scores the winning goal in the championship game" and "has the humour of Uncle Bob"... and after writing those hopes on paper, they bury the papers in a box in the garden, covering them with tears and soil.

The scene sticks with me because there is power in naming what you hoped for - and what now is beyond your reach.  Like learning to name your grief so you can live with it instead of it haunting you, pinning you down when you'd like to hope again.

Birthing two kids with complex needs means I have to bury two boxes, so I can be free to redefine what I hope for the girls.  Admittedly, when I see the girls with their typically developed peers, I see the stark difference between what I had hoped for and what I now am learning to redefine.  I prefer to see the girls among other children with special needs because the difference isn't so painful.

So... I am still transitioning.  My kid wins the award, but I am still working on it.

My hope? It's in the promise that God says one day all things will be made new.  So, I hang on, knowing that there is still good in each day.  And there are great things to hope for.  


P.S.  That movie? It ends with a not-so-subtle plug for adoption.  Preach that possibility.