Sunday, September 30, 2012

wading, knowing my ground


Sometimes it's a good run, some Mumford and Sons music, or a phonecall that helps me find the ground I've been searching for while treading water.  These past two days, it's been a bit of everything - both Rachel and Janneke seem to be feeling better; I was encouraged by good words off the pulpit this morning from brother-in-law Jim; we had a good visit with the Waterdown Pot family (missed you, Lucas), and over the weekend, Rachel shared her latest big step.

Rachel has learned to respond to the idea of "giving 5"... even if we have to give her lots of time, she still responds with her palm to mine.  It's pretty cool.  Actually, it's downright awesome. 


I loved how she suddenly pulled her hands behind her - as if to tease. 

 



We may have to wait longer than normal for her to respond, but patience is good to learn for all of us.  Patience is something I need to learn in all of this.... When the ocean seems to be roaring, I've got to learn to wait, knowing the ground is there. I just might not always feel it.  But it's there.  He's there.

Peace for your week.
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Wait.

Check out the newest achievement for the Momentum Choir - House of Commons tomorrow morning!

And.... Thank you, Rachel and Gail, for playing this song today during the service.

Hide me now
Under your wings
Cover me 
Within your mighty hand

When the oceans rise and thunders roar
I will soar with you above the storm
Father, you are King over the flood
I will be still and know you are God

Friday, September 28, 2012

sometimes the days are deep



Rachel won an award last week at school - 
for staying awake/adjusting to full days at school... yes, we were proud of our girl!

* * *
These last few weeks have been more challenging for our family.  Rachel and Janneke are fighting a virus and dealing with some other issues related to their disabled development.  They've missed school and their regular routine.  When they are not well, it seems the whole family is affected.  Very frustrating.

Yet, it's almost equally frustrating (embarrassing?) how I can feel so overwhelmed by their illness at the beginning of the virus - and then feel confident and secure as they slowly heal.  Oh, to be even-keeled.

I have been internalizing the stress of these last few weeks, and subsequently hurt my back doing, well, nothing.  No heroic story to even exaggerate.  Sigh.  Normally, I am not the one with back issues in our home, but these past seven days, I was the one wearing the ice belt and standing at the supper table. (Was is the key word - the back is a lot better now.)

It's in these seasons of illness when I become vulnerable to my inadequacies and feel bothered by...

My (dis)ability to become so consumed by the circumstance when Rachel and Janneke are ill; I have difficulty thinking beyond their symptoms and feel helpless that they cannot verbalize their pain.

My (dis)ability to think that I can make logical and rational decisions when sleep deprived - that I can offer sound advice about the Great White Trillium or the spelling list for Lesson 3 (Em and Soph's homework).

My (dis)ability to think that there's a doctor out there who knows exactly what is wrong with the girls and can give me the right medicine or therapy that will help them -and quickly.

My (dis)ability to wish we could choose our problems rather than learn to accept and live with the life we've been given.

My (dis)ability that in being the best advocate for my girls as their mother, I am also sometimes too close that I cannot step back and see the BIG picture.

My (dis)ability to become disconnected from friends or family because I think they don't understand or I'm envious of them.

My (dis)ability to forget that all of us shoulder certain burdens that shadow our choices and circumstances... not always visible but still present.

* * *

Sometimes it's a simple phrase that snaps me out of my frustration and self-pity - when a friend says "I'm sorry the ocean is roaring right now."

I'm a person who thinks in pictures and that mental image of the dark and swelling depths of an ocean surprisingly brought comfort.   It was as if my worries and anxieties were acknowledged - not fixed, just validated.

So, I ride the waves and hope that either God calms me or calms the waters.

* * *

In the meantime, we are preparing to visit a specialist at Mac who asked if he could meet them.  Rumour has it, he likes kids who don't fit into a neat and tidy diagnosis.  Maybe he'll be our new best friend?

Here are a couple of photos from the last bit of time:


Emily helping Ralph with the last bit of painting in the mudroom.



Some great friends from Grade 5 who baked and crafted to raise money for the Niagara Children's Centre - much thanks from Ella, Rachel, and Janneke.



We also had a chance to meet new cousin and nephew Callum - 
from my side of the family with Laura and Rhodes (thankfully before the girls became sick).



Tonight, the girls are resting better than earlier this week.  For that, I am very thankful.

Peace for your weekend.
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Monday, September 17, 2012

preschool!


And she was so excited for her first day of preschool....

* * *

Janneke had her first day of preschool program at the Niagara Children's Centre.  She was sound asleep going into circle time, but with some gentle prodding, she was ready to play.  She took her red walker and promptly made new friends.  

It was one of those days that started with me spilling orange juice all over the kitchen floor before 7 in the morning, but the day is almost over.   Rachel had a better evening than the last few, thanks to the help of the nurse.  We switched up the shifts this week, and now when Rachel gets off the bus, a nurse is home to help Rachel stretch and loosen up.  Her body gets so tight after a full day of school, so having the help of the nurse means Rachel gets the attention she needs.  We are also trying a different probiotic (Bio-K) to see if that helps her with the bowel pain.  It feels like a constant guessing game as we try to help our girls.  

This past weekend, we shared some time and beautiful weather with friends - two families came to visit for the afternoon on Saturday, and great memories were made.  I have high school and grade school memories with Eric, Ang, Brian, and Ellen, so it was a treat to visit after many years and spend time with their kids.  Curtis loved the wheelchair lifts; I love this photo... a future engineer, perhaps?


Both families have been part of our prayer support, and I loved the questions and attention their kids gave Rachel and Janneke.  Their kids had no qualms about hanging out with wheelchairs and drool (and the iPad was a hit, of course), and I loved how Nathan wanted to walk with Janneke.  Even when Janneke was bothered by the carousel music and needed to move away from the merry-go-round, Nathan stayed with her.  A new friend with a big heart.

* * *

We took in the sunshine with the girls on Sunday afternoon.  Janneke loved being able to cruise the driveway, and Rachel was content to listen to stories with me.






Em and Soph made pictures on the driveway - and a hopscotch for Janneke to try.  Go for it, kid.


Peace for your week.  
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Friday, September 14, 2012

finding normal


So, we started the school routine again.  It's been two weeks - and I still feel like we are treading water here.  I know it is busy for many families, but I do long for the day when the day-to-day will seem "normal" and not hectic.

What didn't help matters in the first week was that Rachel (and subsequently Janneke and Emily) developed colds.... bleah.  But, we are on the mend, and so far, no more new coughs.  Rachel is still dealing with some pain, but we are able to relieve her with Tylenol/Advil and massages.

A full day for Rachel means a new bus route and new drivers too.  She was excited to see the little yellow bus come, but when the new driver and rider came out to help her, she gave them both a very serious look - I love it that she can see when things have changed.


Of course, the first day of school was also the day Blue Spruce Homes decided to work on the concrete right in front of our wheelchair lift.  After listening to the guys drill into the old driveway for three minutes, I think Rachel was relieved to get away on the bus.


Ralph hooked up the girls' swings on the deck.  What a treat to have the girls sit outside and enjoy the day without trying to find a way for one person to push two wheelchairs over the dirt into the backyard!  Now we can simply wheel the girls from their beds to the swings.  Often, after supper, all six of us will spend time on the deck, savouring the last bits of daylight before the night routine begins.



* * *

When Rachel started her troubles with the cold and pain with digestion last week, I felt discouraged.  We often refer to our girls as being disabled, but when I am trying to understand a non-verbal daughter who is crying, I feel as though I am the one disabled, limited in my ability to help her.  Not easy at all.  Lack of sleep and trying creating a new routine quickly exhaust me, reminding me that I can't do it all.  Those are the times when I truly feel like I am treading water, trying to swim.



* * *

Thankfully, Emily and Sophia are enjoying their time with friends and teachers at school, and they do relish the time at home - whether it is sleeping in, playing in the mud, reading, or just using their imagination.  


* * *

Here's hoping the feelings of normalcy come soon.  Four mornings a week (starting at 7), Marlene (a family friend) will help me get the girls ready for the day.  Lists are posted to remind us of what Rachel needs for school, what the girls need for meds, etc... and Saturdays and Sundays are certainly treasured when we don't have to race the gang out the door.  We have nursing care lined up for more of our Saturdays which will help us.

Next week, Janneke starts her preschool program.  (I will be going with her and staying nearby in case there is a problem with the feeding pump.)  Janneke will be in the same program Rachel had two years ago at the Niagara Children's Centre (new name - no Peninsula), and we are thrilled to have her work with the same staff.  We look forward to the new experiences Janneke will have with friends and new caregivers.

Peace for your week.
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Monday, September 3, 2012

We camped!


Another 120 bibs story.  We camped at Pinery Provincial Park this past weekend - a first all-six-of-us camping trip!  Thankfully, camping itself was not something to figure out; camping has been a family tradition since I can remember.  Figuring out camping with feeding pumps and wheelchairs was a new challenge... especially because our site was a non-electrical campsite.

But, surrounded by family and friends, we were supported and good memories were made.  Many members of my mom's side of the family camp together here every year, so we had lots of willing hands. We rotated between four feed pumps - two plugged in at the community washroom while the other two were working. We were able to move the chairs along the dirt paths and the beach, and we even took in a wheelchair accessible hike!

There was no shortage of community this weekend.  


(A special thanks to my immediate family for providing our meals.  We ate well!) 




We must also recognize a special family member who also made our trip manageable.  My cousin Annette Lievaart, from Alberta-soon-Kenya, took several days to hang out with Ontario family.  When she stopped in at our house last week, I mentioned to her my anxiety about camping with our girls and without electricity.  She reminded me of her work (she's a respiratory therapist), her familiarity with medical stuff, and her experience of working in a Kenyan hospital (Tenwek) where power outages are common.

She offered to set up her tent on our campsite, and she was always willing to lend a hand: making formula by moonlight...


Or suggesting things like cutting out the screen at the end of our camper, making our lifting and care of the girls virtually trouble-free.  We didn't have to carry the girls through the narrow door or twist to put them on the bed. 

It was a bug-free weekend with amazing weather, so opening the end of our trailer made the weekend all the more accessible.  We zipped the canvas shut when the girls needed to rest or we had them in their chairs.


Annette is returning to her work in Tenwek, Kenya, and she has dreams of sharing her knowledge and experience with staff there for a significant time frame.  Perhaps I am being bold, but we'd love for her to be supported in her work.  Please check out her blog: respiratorykenya.blogspot.ca/

Yes, good memories were made...


Janneke absolutely loved the waves and water.  Her smiles and sounds were contagious, and it was a joy to swim as a family in Lake Huron.


Rachel was not so sure, but we gave her a good introduction to lake swimming.


(Thanks, Rhoda, for the use of your photos here.)



Emily and Sophia can hardly wait to camp again, and we agreed - provided we had good support camping along with us.  Rachel was the only member of the family who wasn't so crazy about being away from home.  She dealt with stomach pain, and she seemed unsettled more often than not. 

Truthfully, her hesitations and anxieties may just be part of her personality - and not her disability.  I sleep better at home too.  I was reminded of how quickly we measure their quirks by their disability when, in fact, she could just be someone who prefers to be home (disability or no disability).


It was a treat to share the Pinery memories with all four of our girls, as I have fond memories of the park since I was a little kid.  Now my girls have their memories, and I have new ones.

Looking ahead, we go from changing diapers and feeding tubes by moonlight to preparing for school.  Rachel starts tomorrow just like Emily and Sophia.  She'll be at the NPCC School again, but this time, she'll be at school all day, every day!  Janneke will begin a preschool program later this month. 

More on all that later this week...

peace.
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