Sunday, December 21, 2014

Merry Christmas

Tis the season.

When our kids are sick, we step into a coping mode that is, well, familiar.  We tell each other to rally because, "It's just a season." Yet when the co-captains are sick (as in Ralph or I), it's a game changer. It's been a long month - made especially long by Ralph's diagnosis of shingles - but we are stepping back into some normalcy again and getting our Christmas on.





With the introduction of Christmas stuff in the stores November 1, it would seem that our culture is creating a longer longing. Two months of decorations, Pinterest fails, and constant Christmas carols is enough to tire some of us out. It cannot be denied that this time of year, the concept of longing is heightened.  And like the kid that is waiting forever for the Advent calendar countdown, I long for a countdown to the end of difficult seasons and the beginning of awesomeness.



I long for more clarity and less uncertainty with my little family's future. I long for Rachel and Janneke to tell me with their words what they are feeling.  I long for joy to permeate my older girls' lives, that the anxieties Ralph and I carry won't seep into their own plans for the future.  I long for peace in relationships around me, that fractured friendships would heal.  I long for an end to cancer, that when parents bring their sick kid to the doctor, they'd be able to go home with a prescription for rest and vitamins - instead of a diagnosis and chemotherapy.  I long for... well, the list could go on.

I know there are things that happen that turn our lives upside down, and to say that it is just a season sometimes seems trite.  We might use the word season to describe a puppy's obsession with eating ping pong balls, but that word doesn't seem to completely fit with the bigger stuff.

And so, in this season of Advent, I hang onto the hope that some day things will be made whole and right again. Here, in this house, we have our longings, but in the meantime, our hope gives us gifts, glimpses of good that is happening while we wait.  And waiting doesn't mean wasting. Whatever is going on is forever shaping us, teaching us and others that good still can supersede the yuck.


So, 'tis the season.  Merry Christmas.  May your heart be encouraged by good stuff going on, and may the Peace that surpasses understanding ground your hope in what is to come.  Immanuel.

peace, joy, hope and love,
spot


Friday, November 28, 2014

not giving up

Luna the muppet has developed a fondness for a frisbee as of late.  What is most humourous is watching her try to pick up the frisbee off the floor - almost impossible for her paws to grasp the plastic and flip the frisbee.  She will spend an incredible amount of time trying to flip the frisbee.



At least, I found it humourous at first.

After these last seven days, I can empathize with the frustration of wanting to flip over to the other side of the toy.  I'd like to flip over to a smoother side of living.

It's been a Rachel's-sick-Ralph-has-shingles-Sara-pulls-a-hip-muscle-Rachel-has-a-UTI-Sara-has-an-allergic-reaction-to-the-flu-vaxxine kind of week.

Rachel's mending and is back at school, and I am feeling much better this afternoon.  (Ironically, the meds I was given to deal with the allergic reaction cleared up the remainder of the pulled muscle pain.) I am thankful for antibiotics and our essential oils that help, but admittedly, the meds and oils don't take away the worry we have over Ralph's bout with shingles.  They are on his face, which is troublesome to the eye - never mind the pain and numbness on the head.

This is not a pity post, but sometimes, writing it out gives us a chance to unpack our feelings.  And we can't pretend we don't need warm fuzzies and encouragement from our community of support. Hey, we're all supposed to make this world awesome for each other (Kid President).


an awesome get-well card from niece Aleah - with good advice

I shared some of my discouragement with my dad earlier this week, and he reminded me to farm for climate - not the current weather.  I'm biased, but I think my dad's a great preacher; he's also been incredibly encouraging with my own faith life.  He has this sermon with the illustration of farming that reminds us to remember the big picture, the big story.  The current weather we are experiencing isn't the way it always goes; if farmers based their success on one harvest, many of them would throw in the trowel and give up.  But a good farmer believes that if this year's harvest is crap, next year's harvest will be better.  Okay, so my dad probably didn't say crap.  But you get the idea.

Kind of like the Churchill "never, never, never give up."

Kind of like Lamentations 3:19-23 - these sorrows, these frustrations won't consume us.  HOPE remains in a faithful God who says we aren't alone.

So, we aren't giving up.  We are making jokes when we can, and we earnestly hope that Ralph feels amazing soon.  Shingles are physically painful, but the time of waiting it all out is also painful on the soul.

Flip, frisbee.

peace for your weekend,
spot

This weekend, we remember Dad Pot who passed away in the early morning hours of November 29, 2013.  We love you, Opa.  An 85 year old testimony of never, never, never giving up.




Sunday, November 16, 2014

first snow


First snowfall.  First of many days spent more indoors than out.  First time with the big blankets on the swing.  First snow for Luna the Muppet.


First of many races with the Wii and friends.


Happy early start of winter to all of you.  Here's to being creative with our imagination. Just a little bit of Lego, and our little friend had long stories to tell about the boat and the men and their battles.



peace for your week,
spot

Wednesday, November 5, 2014

inspired...now what?


...and the day is done.

The girls usually come home this tired after their day at school.  I take that as good signs they've been stimulated and exercised.  Their bodies and their brains are tired -for good reasons.

I felt a little like that last night, returning home from the annual OACRS (Ontario Association of Children's Rehabilitation Services) conference.  From Sunday to Tuesday, therapists (PT, OT, SLP, RT, etc.), administrative staff, families, educators, researchers, and many others all affiliated with children's treatment centres in Ontario gathered together to share best practices, ask questions, and learn from each other.

My experience in 129 words or less? Arrive Sunday after one hour of driving, meet family reps from across Ontario, confess that I iron during our important once-a-month teleconference, discuss matters we want to address in the coming year with OACRS, have a lovely long dinner with two moms - Anchel who is a great writer and Sarah-Leigh who also drives a Sprinter, meet Minister Tracy MacCharles and Deputy Minister Alex Bezzina of Children and Youth Services, be inspired by sports psychologist Dr.Jensen, attend amazing sessions that emphasize the need for family engagement and preparedness for the future, have another lovely long dinner with people from KidsAbility (Kitchener CTC), have more wonderful conversations late into the night, and finish Tuesday with attending a panel of speakers who are moms to adult children with special needs.

Phew.

And then I drove four hours in the rain last night to find our house again.

The temptation to walk away from a conference like this is to think poorly of myself or feel overwhelmed by the conversations.  There are some amazing parents at this conference who have changed their career, created new business, motivated change in their community or local gov't - and there are amazing staff that have done so much for children with special needs.  I look at all of it, and wonder where I fit.

I don't like admitting that two kids with special needs (along with the other two kids and a furry almost-kid) are a lot of work because that evokes the pity or sympathy that doesn't motivate me or encourage me.  Yet, I know I have to admit it to myself, so that my expectations for a day's work are realistic. I have lots of ideas, but the reality of my responsibilities threatens to squash my desire, and I end up sticking it all in a (figurative) box and shoving it under my desk the day after such a conference.

On Monday morning, when Dr. Peter Jensen stood up to speak, I wondered if I'd be struggling to pay attention. He's a sports psychologist, and I'm not really into sports - and I'm often skeptical of the self-help/motivator stuff.  But, the minute he started talking, I was all ears.  Sure, he used stories of working with athletes, but his message caught my attention- the girl who still can't shoot a puck.  In short, he talked about igniting the emotion and imagination to persevere.  What propels you to be the best you can be? He challenged the notion that adversity and failure are negative influences.  His experience has taught him that the journey of trying to reach our goal is often richer and more rewarding than achieving the actual goal.  And if we never reach our goal, it is twice the loss if we ignore the growth and change that has come as a result of trying.

Not new words -but wise words. He may not have intended to preach the Word, but he was speaking words that rang familiar to my faith.  I might never learn how to dribble a basketball, but I'd listen this sports guy again.  So maybe I need to work a little harder and pull out that box.  Maybe some of those ideas I have are worth the emotion and imagination that I forget I have.  I'm still wondering where I fit.

Prof. Susan Cadell also presented at OACRS, and she shared her research on post-traumatic growth.  Her work echoed Peter Jensen's - without her intending so.  The idea of post-traumatic growth resonates with the resiliency of someone who is trying to reach a goal, in spite of/with the failures, trauma, and sorrow.

Grace in disguise.

I'm living to embrace that and use it as I find my fit.  I believe it - and I also like hearing it come from different places and different people.  See the mess and find the message.

peace for your week,
spot

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,
spot

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.
spot 


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. 


peace,
spot

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.  

peace,
spot

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

Friday, September 19, 2014

post

s

Such a cheeky little girl... resting her feet on the busdriver while he unhooks the tie downs.

We finished the week with all girls back in school.  Both Rachel and Janneke kick their feet and grin when that bus pulls up.  I can't say the same for Em and Soph when they pick up their backpacks and march out the door, but I do know their feet aren't dragging.


We are very thankful for classrooms and teachers and support staff that make the day a joy for our girls.  And we are very thankful for home care nurses who help me greet Rachel and Janneke at the end of the day, so I can spend time with the older two girls in the late afternoon/early evening hours.

Support comes in many forms - but it is all so necessary.  If you are from Ontario, I'd like you to check out the provincial advocate initiative which is a stage for stories and submissions related to youth and children with special needs.  Here's the facebook link.  The aim of the project is to put the voices of children and youth in the centre of the discussion on respecting and supporting children with special needs.  If it relates to you, submit your story.  Go for it.  We need your story.

* * *
Here's a pic worth sharing: 

I took Janneke, Soph and Em to African Lion Safari not long ago.  Kudos to the park for improving their accessible spaces, including a large washroom with an adult-sized pull-down surface for diapering and personal care.  They added a playground that accommodated Janneke's wheelchair, and the staff was very helpful when I asked for assistance.  That's a big deal.

The most memorable part of that day? Sitting next to a young man who lives with short term memory loss due to brain cancer.  He was incredibly sweet, asking my name and story and Janneke's name and Janneke's name and my name and story...  It was one of those times when I didn't care if I had to repeat myself over and over. His character spoke of resiliency and determination.  I only wish I could remember the gentle giant's name now.  


Hope you have a good weekend.  I'm hoping for continued healing of Rachel's incision sites and for good health for all of us.  And hoping Ralph finds his way home from the administrator's conference by Sunday. It is good (and important) for both of us to take time to step away, but I am reminded once again that it is that much sweeter when we have the full team playing here at home. 

peace, 
spot



Friday, September 12, 2014

to sum up


The week has ended.  To sum up:

...one tired girl who grinned from ear to ear when she was placed in her own bed at home late last night.  She has been dealing with typical post-surgery pain, but she seems to be improving each day.



...one happy girl who was constantly making happy sounds all week, thrilled to be at school and thrilled to be dancing with Aunt Grace who came for a visit tonight.



...two happy big sisters who loved seeing Rachel in the hospital but are thankful that the whole family is now at home.

...and two tired but thankful parents who look forward to some ordinary days.

peace for your weekend,
spot

Thursday, September 11, 2014

Update

Just a short update: The surgery went well, and the sedation procedure went better than expected. There were a lot of people in the OR room, ready to assist and support. We give thanks for our community of support and for the many prayers. We were certainly resting on that support while we waited, knowing that God was and is faithful in His mercy and love- no matter the outcome. Now we wait some more as Rachel recovers and transitions from IV fluids to regular g-tube feeds. Hoping to sleep in our own beds soon...

As  I sit and wait with her, I catch glimpses of other families whose stories include long difficult chapters where they must call the hospital their second home as they deal with illness and disease. Those chapters are not familiar to me, but with our short hospital stays, I am reminded that each day presents different challenges for all of us- big and small. May we never take for granted the days of good health, conversations and emails and texts, good jokes, and shared smiles. We can't lose sight of what it means to search for joy, to show grace to prickly people or have patience in frustrating situations. And we can't forget to extend that offer to help, to listen, and to support those who find the search for daily joy to be near impossible. Living in community can be messy at times, but it is so necessary.

with a thankful heart here at Mac, I wish peace for your day,
spot

Tuesday, September 9, 2014

another surgery


Tomorrow, Rachel will have surgery to re-site her g-tube.  In 2006, her g-tube was originally sited higher than normal, and it is now sitting in and around the ribs. Though it is a minor surgery on the spectrum of surgeries, it is still intimidating to consider.  We know the surgeon, and we know there will be familiar faces greeting us and taking care of Rachel tomorrow.

Still, there is anxiety.

Having Rachel and Janneke has forever changed my parenting from what I thought was normal with Em and Soph.  Most days, I don't give any thought to Em and Soph getting sick or breaking limbs, yet, often, I have to fight that feeling of wondering how long Rachel and Janneke will be with us. This is not to say that Rachel and Janneke are so sick -though they are documented as medically fragile, nor am I wasting away in my worry.  To see them with all their cheery chubbiness, the word "fragile" isn't quick to come to mind.

Still, it's a feeling of uncertainty with regards to our girls' life.  When no one can tell you what or why or how about your kid, you wonder the tough questions.  When the girls get a cold, I wonder if they can fight it.  And they have, so far.

Four years ago, Rachel was to have an MRI.  She was to be sedated for the test - typical procedure.  I was very clear with the staff that Rachel's throat structure was unique, and they ought to be prepared for an atypical experience.

Four hours later, Rachel was fighting to live, fighting the bronchial spasms that came from multiple (unsuccessful) attempts to intubate her for sedation.  I wondered if the staff didn't take me seriously when I told them about Rachel. The mother bear in me wanted to ROAR... but I cried.

Needless to say, it's been four years of growth and development for both Rachel and for the field of paediatric intubation.  At last week's pre-op, I was pretty clear on my sentiments regarding the previous experience.  Tomorrow morning, I will be just as clear.

Am I anxious? Yes.  I feel as if the anticipation of tomorrow's experience is like the teacher's red pen, circling the anxiety that I try to tuck away and hide.

Still... Yes, I need to still this anxious heart and trust that Rachel's story and our family's story is not in my hands.  This particular part of our story, like all the other parts, are in the hands of the Great Author, God, who is faithful.  And tomorrow is not the end of the story.

peace,
spot

Thursday, September 4, 2014

schoolin'


In the sweltering heat of this week in September, Rachel and Janneke tried school today.  They will officially start on Monday, September 8, but today was a trial run.


We were thrilled to see our busdriver and rider from last year.  They take such good care of our girls, even thinking to find soft padded seatbelt covers to prevent rub marks under the girls' chins. It's the little things that show big hearts.


Earlier this week, I had a chance to sit down and meet with the teams that will be working with Rachel and Janneke at the Niagara Children's Centre School.  We discussed the girls' care plans and issues with their feed pumps, health and abilities.  I was asked to write down one goal for each girl on a cut-out yellow star; these stars will decorate the school hall.  

Here are the goals:

Rachel - "I want to learn how to better communicate my choices and preference to others."

Janneke - "I want to learn how to walk with my head up."

I've decided these are good goals for me too - learn to be a better communicator and to quit staring at the ground when I walk.

As for the older two.... well, they are past that stage of "I'm-so-excited-for-school-please-take-my-picture," so I caught them on their way out the door.  


enjoy the week's end.
peace,
spot

Monday, September 1, 2014

ten for summer's end

Janneke's preferred posture at the beach.

Rachel's preferred posture at the beach.

* * *

We've been campin'...


when a leisure game of Kubb turns into a full-scale tournament...


 when it's lovely to be sitting and talking and not doing too much more....


when feet become black from the sooty sand but they still get tucked into a sleeping bag...


when you are chased down and dunked for not jumping in...


when sharing the hammock is better than swinging alone...


we call it camping and this summer, we can finally call it fun, after many try-and-try-agains with wheelchairs and feed pumps and sand.


It was a treat to share these recent camping experiences with family made up of cousins and cousins-in-law and friends who loved to visit the campsite for coffee, play tug-of-war, take bike rides and hikes.  We can't say enough how grateful we are for the respite help provided by Christina Teeuwsen and Katelyn Pot.

And it was a treat to see Rachel finally relax on our last day at the beach.  She was comfortable enough to sit at the sandy edge with her dad and go into the water with her mom.  This was a huge step for her since she prefers her bed and home to anything else.  


Have a super week - especially to all beginning a new chapter with schooling, teaching or life.

peace,
spot