Saturday, December 31, 2011

Happy New Year!

What does 2012 hold?


Time to say farewell to 2011.  It's been an eventful year, full of good memories and surprises.  Thankfully, it held no hospital stays!  It is almost impossible to write down in this post everything that happened over the course of the year, but we thought we'd highlight a few reflections.

The year 2011 saw more friendships formed,




intense physio for Janneke in response to her new ability to bear weight on her feet, 



and interest and intention from Rachel with her music therapy.


This summer, we were able to visit my parents' cottage in Point Clark with extended family, but the process of taking our girls places seemed to be even more challenging.


Thanks to some gifted money, we were able to afford another Jenn Swing for our backyard, making for some sweet swinging time after supper on summer nights.


We were also able to afford two floating fish that enabled our family to enjoy pool time without worrying about how to manage everyone in the water at once.



We learned that Janneke prefers to touch surfaces and textures instead of toys. She became stronger in her walker, and we still find her moving to places in the house where she can stroke the wall, a chair, or the edge of an open door.


We still try different things with Rachel, but she is reluctant to touch or engage with toys.  She loves to have people play with toys for her on her tray.  At school, she is showing signs of interest in touching various textures, and we are thankful for the one-on-one time she receives to develop this ability.




Admittedly, we were disappointed despite all the effort and time used to help Rachel's feet find more range.  We did casting for several weeks, and we tried various AFOs.  We were able to see some movement on her feet in the walker, but the success was short-lived.  Perhaps 2012 holds new treatment or new ideas to encourage weight bearing for Rachel.



Certainly, this fall brought a big step for our family as Rachel started SK at the Niagara Peninsula Children's Centre - and began her afternoon bus rides.


We also found a new favourite place, Heartland Forest (in Niagara Falls) where we can take our whole family for a hike, a visit to the accessible treehouse, and some playtime on the playground.  It has also been a great place to take friends and celebrate birthdays.




We continue to marvel at the changes Emily and Sophia make - a new fondness for dogs, a strong interest in art and music, and more energy on the soccer field.  They continue to show so much love for their sisters, and we give thanks for the gifts they are to us.


Looking back over the last six months, we think particularly of all the effort, generosity, kindness and encouragement with our fundraising efforts for our new van.  We have been overwhelmed and amazed with the money raised - and we anticipate the new van to arrive in January or early February.  We are also moving forward to renovate our house; these new plans will allow us to care for Rachel and Janneke into adulthood.  

Given this past week of recuperation from the cold and flu, I hope that the beginning of 2012 brings good health.  It has been very quiet here these past number of days, as we have waited for energy and sleep to return.  Rachel has started antibiotics, and Janneke seems to be healing without needing the additional meds.  We hope next week holds excitement and energy for more than going to the grocery store for milk and Tylenol.

Happy New Year to all.  May you feel encouraged and may there be joy.  May the days of laughter supersede the days of uncertainty or anxiety.  

Peace for your week, for your year.  Soli Deo Gloria.
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Friday, December 23, 2011

Merry Christmas


One of my favourite moments is watching Janneke (almost) run over to the piano in her walker when anyone is playing the piano.  Usually, she makes the best harmony with big sister Emily or Ashley (respite worker).

* * *

Since the last post, we entertained my side of the family for our annual Christmas gathering, enjoyed a Christmas program at church, visited Mac for an assessment on both Rachel and Janneke's orthopaedic issues, and..... tolerated the stomach flu and new colds.  




Visiting with our family in our home is always a treat.  We rarely take Rachel and Janneke to other homes because of accessibility, so it means so much to have our extended family spend time with our whole family.  (We schedule the fun while a nurse or respite worker is here.)

These last few days have been tiring but decent.  Most of us are mending from the various flus, but I am still waiting for Rachel to feel better.  She seems to have taken the brunt of the cold flu with lots of pain for her in managing her mucous and coughs.  She has good moments while the Advil is working, but she was unable to attend school all week.

There have been some sweet moments this week too - watching Rachel lay alongside Emily and watching Sophia bake for her classmates.  Emily would break from her math to do a quick cuddle with Rachel.  Meanwhile, Sophia was determined to make cookies for her friends at school for the last day before the Christmas holidays.



* * *

Each year, we have a new Christmas book for our family.  This year, we used the theme The Twelve Days of Christmas - Canadian style with the story A Porcupine in a Pine Tree.  It is a great picture book - for all ages.  Check out the clever illustrations with the "ten Leafs-a-leaping" ever-reaching for the Stanley Cup.  The illustrator obviously understood the tremendous tenacity of the NHL team while not quite grasping the Cup.



* * *

Most of the time, this week, Rachel has been sleeping.  I hope the sleep brings healing.  Admittedly, when the girls have colds, we worry - too much.  I often say that worrying is one of my strengths.  A strength I would rather not have.

After the last visit to Mac, we have some thinking to do about Rachel's scoliosis.  We were presented with the option of a brace - not to heal the curvature in the spine but to prevent further curving.  We'll be looking for literature and advice about this over the next couple of weeks.  While we x-rayed and discussed Rachel's bone structure, our orthopaedic surgeon also observed Janneke's willingness to bear weight on her feet.  Our doc was thrilled with Janneke's progress, and we can only wonder what progress she will continue to make in 2012.


Now it is the day before Christmas (Eve) and all through our house....   Nurse Bridget is looking after Janneke and Rachel, and Emily and Sophia are enjoying candy-cane induced giggles downstairs.  We are making plans to host Ralph's side of the family next week.  Right now, the sun is shining, and there is no snow to be seen.  We're okay with no snow - we would rather face the inclement weather with our new van in the new year (hurray!).  

Thanks to all who ordered Christmas arrangements from Sara V.  We were overwhelmed with the response, and the money raised will support our family with the home renovations and van expenses.  We look forward to sharing with you the home renovations.... in a future blog post.

In the midst of the illnesses and busyness, I was gifted with the chance to hear Handel's Messiah at Roy Thompson Hall with Toronto Symphony Orchestra.  An incredible facility with an incredible group of musicians.  It was beautiful.  

What struck me about the recent TSO performance was the strength of one note.  You would think you'd be blown away by the choir or the instruments (and both were amazing).  Yet, I was most affected by one point in the performance when the soprano soloist had to reach an incredibly high note.... and it was if the whole audience leaned in, and we heard that one note as distinctly as if she sang face-to-face in a small room.  

I thought about when Elijah was waiting to hear God's voice (I Kings 19)....  and after the strength and might of the wind, the earthquake, and a fire, God's power is found in a whisper.  

Expect the unexpected. 

Peace to you all and Merry Christmas.
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P.S. No Christmas cards this year - still catching up on the thank-yous from our family fundraising.  Look for a Happy Van card in February.



Wednesday, December 14, 2011

yep, it's Wednesday


To celebrate what appears to be a green Christmas for many of us, a friend has offered to make arrangements similar to this one (varying in size and presentation) as another way to add to our AppealforWheels fund - to keep the van running, to add a new bedroom to the house for Rachel and Janneke, and to add to the girls' RDSPs.

Sara (Faber) Vahrmeyer will create these beautiful pieces for you - prices start at $15 for indoor or outdoor arrangements.  Check out her website with this link.

(Funny - sixteen (or more?) years ago, I was in the bleachers at Calvin College's old fieldhouse, cheering for this feisty point guard on the varsity girls basketball team who is now making Christmas centrepieces for my family.)

This past weekend, Rachel's friend Epeus had a birthday party, and he invited the SK class to celebrate.    It was a party to be sure, complete with lots of singing, dancing, and laughter.  We even got to feed the chickens leftover birthday cake with Epeus's Pakke (grandfather).

Epeus and the SK friends made a beautiful coloured globe for Rachel, and all the kids gave money for Rachel's van and new bedroom.  It was a beautiful time together.  A special thanks to the Hoekstra and Doris families for their kindness and love.





Rachel has recently developed a love for this little bee...  maybe it's the contrasts between yellow and black? Nevertheless, she loves to touch him and watch him.


Janneke often walks into the blue room and stares at this small section of wall when the sun is shining.  She plays with the shadows created by her hands and the blinds.


But, then there are days when she is just plain tired of walking.  I have found her going in a circle, round and round by the piano.



And so, I pick her up, snuggle her, and put her in bed for a rest.

This week has brought more rest for all of us, despite a few days of me losing my voice.  We are enjoying the days together, and we are looking forward to celebrating Christmas with family.

Hope the next few days bring peace and rest for you.
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Friday, December 9, 2011

and another week passes...


Well, Sinter Klaas came and went.  Thankfully, no straw or sticks were found in the klompen, and everyone is enjoying new slippers on their feet.  We are experiencing some snow today - but it doesn't seem to want to stay.  Will it be a green Christmas? 

The week has been good for girls - but the nights have been short.  Not sure - lots of chest physio and massages for both Rachel and Janneke around 3 in the morning.

Rachel visited her friends in SK at Beacon this week.  It had been a few weeks since our last visit.  Mrs. Bootsma (teacher) told me when she announced that Rachel was visiting, the whole class erupted in a cheer.  When we walked into the room, I heard, "Rachel's here!" from all corners of the classroom.  

It is awesome to see how excited these kids are for Rachel.  I hope to continue a friendship with the kids and Rachel for as long as possible.  When those SK kids can grow up accepting Rachel for who she is, I think everyone wins.  

There is much love here.  Riley and Zekijah loved building things on Rachel's tray.


Epeus and Rachel made gingerbread cookies, and Rachel presented Dad with her cookie afterwards.  She was happy to be a part of the experience making it - and Ralph was happy to eat it.



* * *

It's that time of year when the stores seem too full of people -good for business, but it makes for some very crowded spaces.  This week, Ralph and I were looking at washers and dryers, planning ahead for when our current ones decide it's one bib too many. We ran into a lovely neighbour, and we had very deep conversation in the household appliance section.

We talked about living with grief - without compromising privacy, I'll simply say she is familiar with earthly illness that leads to death.   I asked her how her days were going.  She said, "My emotions are slowly thawing out."

For some of us, dealing with a crisis or a slow death forces our emotions to freeze.  We run on adrenaline, coping with the issues at hand.  It is only after the crisis passes or the loved one dies, that our emotions slowly thaw.  Sometimes that means we fall apart and cry a few days after the event.  Other times, it may be years before we finally "thaw out."

I love that imagery.  It's as though there is permission granted to slowly deal with sorrow, all the while knowing God's grace and love can prevent permafrost.

Who would have thought a visit to an appliance section would encourage me in such a profound way?  Then again, who would have thought to celebrate the Light of Christ at a time when there are more dark hours than light in our days?

* * *

Speaking of light, I took advantage of some free light therapy for Janneke the other day. Janneke and I went to Canadian Tire for a quick errand- thankfully, she still fits in the carts!  She was mesmerized by all the Christmas lights and loved all the blinking.


Our experimenting with walkers for Janneke prompted a friend to pass along the larger size of Pacer.  As much as we like the Miniwalk, the Pacer allows her to touch and feel all the surfaces in our home.  The first thing she did when I set up the new-to-her Pacer was to zip over to the piano and play.


Janneke also loves to sit in her chair and "play" alongside Emily. 


The week ahead holds our visit to the paediatrician at Mac and more holiday fun.  Hopefully, it also holds more sleep.

Peace to you.
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Thursday, December 1, 2011

new beds and a haircut

December 1.  December again.  Time flies.


So, the tree is up, decorated and lit - yep, it's real.  It's only fallen once in the last week, so here's hoping it lasts the month.  The homemade decorations remind us of holiday memories and former students (ornaments given as teacher gifts).  As I wrote last year, the tree and its memories remind us of God's grace through the years.  I love that.

I am not loving the possibility of Janneke running into the tree with her walker, but so far the prickles of the branches have kept her away.  Both Rachel and Janneke were initially intrigued by the lights and the colours, but they have since moved their attention elsewhere.




Emily and Sophia worked with me on the front window with our annual Christmas painting.  Last year, we painted the back window, but with Janneke spitting and touching the window, we figured our picture might stay in better shape on the front.  With the old-style double pane, it is a bit hard to see from the road, but I am proud of the girls and their work.






* * *

With the painting done and the tree up, Em and Soph are now enjoying the extra jumping surfaces in our livingroom....  Our bed is temporarily in the livingroom, making for a great performance of vaulting over the couch and onto the bed.


So, why the bed in the livingroom?

Well, some might say Janneke and Rachel have received an early gift for Christmas.  President's Choice Charity has purchased new beds for our girls.  We are very thankful for this wonderful gesture.  The beds are designed to last a lifetime, adapting to the girls as they grow.

To make a spot for the beds, Ralph and I had to move our bedroom out into the livingroom.  This created an empty space for the construction of the beds. Now this weekend's job is to move what we can from the girls' former room into the new-beds bedroom, so Ralph and I can gain a bedroom back for our stuff.

With this generous gift, we can now save the additional money fundraised this summer for home renovations and the girls' RDSPs - we don't have to set aside the cost of the beds.






If you are curious about the beds, click this link (bedsforspecialneeds.com).  We have two IDA beds.

The reality now facing us: We will need to make some significant changes to the home soon to better accommodate the equipment our girls need and to help us provide better care for them.  We are currently dreaming about those changes.

* * *

Not only did the girls get new beds, Rachel had her first hair cut!  Shannon came over and used her experience with hair care to give Rachel a beautiful new 'do.... perfect for someone whose hair was constantly getting stuck in the bib buttons.  Now we hope her hair will also get thicker and stronger.




* * *

I've got Handel's Messiah playing just about every day - that and the Trans-Siberian Orchestra.  I am considering waiting with holiday cards until the van arrives - a belated greeting in January or February.

But, for the Christmas cards I do send out, I hope to use the ones Niagara Peninsula Children's Centre is currently selling.  Are you interested?  Every year, a student from the NPCC school designs the card, using whatever abilities and programs they can.  Here is a photo of this year's card.  If you ever visit NPCC, you can see a framed copy of all the cards made over the years.  Very cool.

And if you are interested, I can pick some up for you - $9 for a dozen cards.



In the midst of the busyness, we remember the reason for the season - that Christ came to make all things new.  He came to bring hope, the promise that our sorrows, our burdens, our circumstance will not consume us (Lamentations 3:19-23).  He brings hope.... I know that my Redeemer Liveth.

Peace.
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As for Janneke, she's too busy exploring on her bare feet to post this week.