Tuesday, October 25, 2011

Good-bye cold virus, hello wheelchair!

There is joy in a sister's hug.

There is joy when children feel better after several sleepless, tear-filled nights.  Both Rachel and Janneke took on a cold, and Rachel was in significant pain due to a g-tube infection.  They took turns not sleeping at all...  

There is no joy in those kind of all-nighters.  

Thankfully, everyone seems to be mending. Em and Soph did not get much of the virus, and I was able to replace Rachel's g-tube, albeit with heart-breaking cries from her because of the pain involved with removing the old one.  

While we are thankful for recovery, we also wish speedy recovery to the Brand family (yucky flu) and to Ella (surgery on her foot).  

* * *

Managing life with little sleep is a challenge, and I find those days and nights need constant prayer.

There are still those moments when it also helps to yell into a pillow or say one cuss word.  (Sorry, Dad.)

Speaking of sleepless nights, this week, we marked Emily's 10th birthday; ten years ago, we started the parenting journey in Fridley, Minnesota.  I went from teaching 75 middle school students to parenting one tiny baby.  (Why is it that one small baby crying for five minutes can completely unravel you when, pre-baby, you thought nothing of playing Bunko with 75 screaming adolescents for an entire afternoon, three days before Christmas?)

And here is another little one, just born.  This is Asher Hoff, born on Sunday to Aron and Rachel, friends through church. I wanted to not only show off his beautiful face but also his beautiful hat.  

With the helpful the Niagara Midwives, Asher was welcomed into his family.  The Niagara Midwives have also been a part of our family with the pregnancies and births of Sophia, Rachel, and Janneke.  With Rachel, because we knew of her anomalies before birth, there was a transfer of care to McMaster staff, but the midwives continued to see me and support me pre and post labour.

The midwives were also on hand to share the complicated feelings of joy and sorrow when Janneke was born.  We thank God that the team was so quick to act when Janneke went into distress in labour, and we deeply appreciated their quiet comfort when we all realized Janneke was presenting problems just like Rachel. The midwives continued to visit me and support us even though we had a transfer of care with Janneke whisked off to SickKids in TO.  

The support and love from Niagara Midwives continued this summer with the sale of these hats.  These hats were on sale in the clinic - the money raised went to our Appeal for Wheels campaign. We were so moved by their continued support. How thankful we are to have experienced midwifery care with our girls, both in the years past and this summer!

* * *

Here are a few photos taken before the girls became sick.  Janneke really enjoyed being outside for the afternoon, and I loved the way she watched her sleepy big sister Rachel get off the bus.

Janneke has also figured out our spot for her drums.  Sitting on a pile of shirts in the drawer, she can hit the drums, creating sounds and lights.  When we put her in the Pacer, she often zips over to her room and stands there for as long as she can, drumming away.

* * *

Today's fun included Rachel official first wheelchair!  It took three people to adjust and ready the chair for her, but her throne is complete.  It's called a Zippie...  not sure how much she'll zip around in it, but her posture is already better with the new seat.  Mind you, she doesn't look too impressed with the adjustments.

I discovered that the chair is much larger and heavier than her previous chair - and it can't collapse into smaller parts.  We signed the order for the Sprinter van at the dealership yesterday....  it can't come soon enough.  

Now we wait.  When the van arrives from the factory, it will go to Northend Mobility.  We have estimated we will welcome the finished and accessible Sprinter to our driveway in January.

Thank you again for your support with our van.  We could not place this order without His blessings extended through our amazing community.

Peace for your week.

Oh,  Rachel's old chair?  For now, it's a new-to-you chair for Janneke.  Hand-me-downs aren't always exciting, eh?

Monday, October 17, 2011

migration and musings

Over the weekend, we celebrated a couple of birthdays, and to add to the fun, a flock of flamingoes migrated to our lawn.  They rested for two nights and are now on someone else's lawn... 

It's part of a youth group fundraiser - pay for the flock to fly or pay for immunity.  If you are curious, check out this link.  

Sophia shared her birthday with Alex - the two girls had great fun with their friends at Heartland Forest.  We all loved the cupcakes, complete with little people asleep in their candy beds!

Rachel continues to love riding the bus to school.  Her legs wiggle, and she grins as soon as the bus pulls up to the driveway.  By the end of her afternoon, she is usually asleep - or almost asleep.  We are so thankful for her team of teachers, therapists, and assistants.  

Yet, we have been concerned with her muscle soreness, especially in her back and hips.  We wonder if the scoliosis is having an effect on her posture or is aggravating her.  It is tough to figure out what is causing her discomfort at home when she cannot tell us.  She grinds her teeth loudly when she is not comfortable, so we are trying to help with pain meds, massage, and repositioning.

so tired at the end of the day!

This past weekend, I took part in a workshop that discussed how churches can help families affected by disability.  There were some very good conversations, and I found those ideas linking with thoughts I had from the previous week -after reading more of Ian Brown and John Piper.

Funny how two very different men - Brown (columnist for Globe and Mail) and Piper (pastor at Bethlehem Baptist Church in MN) - can have a significant influence on the reflections of my life right now.
Ian Brown writes about the absence of normalcy freeing him to experience his son's life as unique as his son is.  I find the absence of normalcy more frightening than freeing at times....

John Piper preached a sermon earlier this year on the text of John - where Jesus' disciples ask Him about a blind man begging alongside the road.  Jesus doesn't dwell on the cause of the blindness, but He instead points to a purpose within the disability.

To be honest, the sermon is a difficult one to hear.  

Do we spend too much time concerned with the cause of our suffering and not enough time considering the purpose or the good stuff that might come from/with the suffering?

I know, deep question.

I think many of us will spend our entire life trying to find purpose in/with our earthly struggles.  

Yet, I am convinced that we can be robbed of joy and life when we consume ourselves in the futility (Piper's word) of understanding the cause for suffering.  I am not talking about the times or seasons when we have our questions - but there is the risk we can become so consumed with the why and the why not, that we become blinded by our fears. 

When we surrender to this idea of the absence of normalcy, we need to find Freedom midst the fear.  

* * *

Then there were the reflections from Mark Stephenson this weekend, director of Disability Concerns with our church denomination - in caring for a family or a person affected by disability, we must also give them a chance to feel empowered or worthy.  

Sometimes, our intentions to help and care for a person affected by disability can rob them of a feeling of self-worth.  Not only must we support, but we must also allow for that person to feel worthy. It's not just about the disability, the inability - the cause, but there can also be something - a purpose, often very small or insignificant in the world's eyes that creates worth and ability.  

* * *

What purpose do my children have now? That's where that concept of the absence of normalcy comes to mind.  I will trust God's plan will help me feel free to embrace the unexpected and not be so fearful of the unknown. 

Somehow, there must be peace in accepting the life as it is right now, and also choosing to step forward. Somehow, we must reinvent the world's concept of what it means to be to have value. 

*  *  *

I found myself stepping outside the perimeters of normal today when Janneke's therapists suggested a clip-on tray for Janneke's walker.  Though most of us don't read while we walk, we noticed that when Janneke moves in her walker, she is far more engaged in stuff than when she sits in her chair. : )

Into the week we go: More birthdays to celebrate this weekend, a pumpkinfest at Heartland Forest, and my dad's retirement celebration in Guelph.

Sterkte - for tomorrow and the days to come.

Hmm, here's a postscript - because I am absolutely loving the fall colour in my home: Not only did I enjoy driving the Prins Grow Sprinter, I am now really enjoying some Prins Grow amaryllis - shameless advertising, I know.

Tuesday, October 11, 2011

Happy Thanksgiving

Happy Thanksgiving! We had beautiful weather here, and we tried our best to enjoy the outdoors.  The colours in this part of Ontario are amazing!

Last week, Rachel and I took the GO train and the TTC subway to SickKids in Toronto.  Rachel loved the experience, and I became familiar once again with the limitations for people who rely on chairs to go places.  Looking for a working elevator in Union Station because the "accessible" section of the building was closed for construction was a bit of an adventure. I am thankful that I could push Rachel around, but I wondered how someone would make this work if they are operating their chair on their own.  I was also intrigued by the people who helped me (a fancy businessman) and the people who just looked at us and walked on (a group of folks who commented loudly on how frustrating it must be to rely on elevators but oddly enough, they didn't help us).   Consider how you can help out someone in your travels today.

waiting on the GO platform for the train

in the subway - lots of faces and lots of noise

 quick visit with Aunt Rhoda near Queens Park!

On our way home - so much easier to change bibs and operate a feed pump when you are not driving

The result of the appointment?  We were evaluating Rachel's sleep issues related to her respiratory system and her drooling.  We no longer need to see the folks at SickKids for these issues, but we can follow up with our ENT team at Mac.  The doctor at SickKids had a few suggestions for managing her drool, but nothing that will be changed at this time.  

I had some interesting conversations on the GO train.  Many people were kind and asked questions. One woman thought I was giving Rachel oxygen when she was looking at her feed pump and tubing.  I laughed - and then I realized she was serious, so I told her that oxygen is administered through the nose and mouth - not the belly.  I was also asked if Rachel would "grow out of that" - I thought she was referring to the wheelchair stroller, but I realized she was referring to the global developmental delay.  Again, another interesting conversation.  I didn't mind.  I prefer honest words/questions to the furtive or sneaking glances.  Overall, a great day with my girl.

Last week, we also visited with our SK friends at Beacon.  Our first visit a few weeks ago was a quiet one; the students seemed a bit shy to see Rachel again. This time, the students were so excited to see her, wiping her face when she drooled and showing her all the things they were doing.  They especially loved sticking all the magnetic toys to her chair.

Recently, one of the cats from our neighbourhood has been meowing at the door, asking to be let in. I am not really a cat type, but I had to admit the little visit we had on Saturday was cute.  I sat Rachel and Janneke down at the door, and Em and Soph sat with them - preventing the girls from falling back and also making the cat dance on the glass of the door by teasing him with their fingers.

We are still in the planning process with our van, and we borrowed the Prins Grow Sprinter for a test drive the other night.  Ralph specifically wanted me to practice parking it at stores.  Yikes. 

I could handle the roads okay, but parking proved to be challenging.  I think I need cameras and mirrors all over our van - as well as someone with parking pointers like the ones airplane terminal folks use.  

We are determining which size of Sprinter to buy, but, as seen in the photo, either size will be a significant difference from our current situation. (Both vans' front ends are lined up for this photo!)

We finished our test drive with a visit at the Prins home, and Janneke took a liking to their pet hamster in its exercise ball.  She actually leaned forward to touch it and bring it close.  Not sure how the hamster liked it, but we thought it was pretty cool.

We enjoyed this Thanksgiving weekend, although we have to admit, we miss the nursing help when we have three days in a row without extra care.  We were able to spend some time with extended family, and we also took in a hike with our little family of six at Short Hills Provincial Park where there is an accessible trail in the woods!

What better to celebrate Thanksgiving than to climb a tree with your birthday buddy uncle- right, Soph?  (She and Harvey share October 14.)

This weekend, we did spend time talking about our reasons to be thankful.  Sometimes, our current circumstance or mood can cloud our ability to be thankful, but we know that in listing our reasons for thanksgiving (large or small), we begin to see the ways that we have been blessed.  I was particularly thankful for our church community on Sunday.  As the greeters welcomed us to the building, they also greeted our girls, nonchalantly wiping Rachel's drool while chatting with her and with me.  I am very thankful for that level of comfort and care.  

Peace for your week.

living thankfully,

Monday, October 3, 2011

thoughts on faith


Here is our little garden gnome out for some weight-bearing therapy 
on the sidewalk - Janneke meeting her sisters coming home from school.

It's been a decent week.  The excitement with AppealforWheels has morphed into determination to order the van and make our home accessible, make caring for Rachel and Janneke less pain on the back and more joy on the face.  We've been working with a local dealership, and we've been told the van will most likely be ready in January.  Seems like a long time, but we know time passes quickly.  

The van has to be custom-ordered from Mercedes, then sent to Northend Mobility for the wheelchair lift and floor parts, and then we will have it sent to one more place for the finishing touches -electrical outlets, overhead storage, and possibly a fold down table.   


You know, at some point, you wonder if there is another way to say thanks because saying thanks over and over seems to fall short of adequately describing the feelings of thankfulness.  Yet, in some way, this reminds us of the abundance of God's grace.  Though we fall short of perfection in our brokenness, His grace overwhelms us.  So, we give glory to Him for your gifts.  And we live thankfully.

This past week was more ordinary for our family.  The anticipation and celebration of all the fundraising events is now behind us, and we are dealing with the day-to-day stuff.  

Lately, I've experienced a longing to chat with my mom again.  Our family buried her much too early (according to earthly standards) in early July 1997.  She was a nurse at Mac and with VON.  Now Rachel and Janneke receive much of their medical attention at Mac, and we have VON in the home at least 5 days a week.  Oh, the irony...

My experience with grief created a sense of longing.  This longing comes and goes.  It's a longing for a visit with my Mom - she wasn't perfect, but she was familiar to me.  

In the same way, I have, at times, had a longing to return to the days before Rachel and Janneke were born.  I remember in the first years after both girls were born, I longed to return to 2005 - those days weren't perfect, but they were familiar to me. 

I am not a risk-taker.  But... we have to make that conscious decision to step forward and move into what is not familiar. 

Sometimes, the future seems way too uncertain or unfamiliar, and I want to retreat.  

But, there are times like this morning at NPCC with Janneke in her physio session when I am reminded that the unfamiliar and uncertain days can also be quite rewarding.

Janneke is exploring more independent weight-bearing with her feet.  This is great news!  She is strengthening her bones, and she is starting to support her weight when we transfer her from her bed to her chair.

She still tires quickly of this fun, but we are thrilled with her progress.  This may mean her wheelchair will be different from Rachel's - to allow for some sit-to-stand therapy.  We will see what Janneke wants to do!

So, onward we go, into what seems uncertain.  I appreciate Ian Brown's words about the absence of normal freeing us to see what our girls will do... become... be.

Living on faith, we step forward into tomorrow.