Sunday, April 27, 2014

three bits of joy for the week ahead

Three exciting things happening this week.  

1.  The Niagara Children's Centre is being showcased with the 10th annual Have a Heart Radiothon through 610 CKTB, 97.7 HTZ FM, and 105.7 EZ Rock.  Listen to any or all three radio stations on Thursday, May 1 to hear stories of how the children's centre is a source of support and encouragement for families like ours.  Check out their website and watch their promo video.  The kids featured are known to our family - and their stories are great!

2.  The VanDriel family has their first big fundraiser to support their son Dylan this Saturday, May 3.  Check out the market that will feature handmade artisans, baked goods, plants, Dylan's cookbook, a kid zone (for while you shop!) and much more.  It's at Bethany Christian Reformed Church, 1040 Balfour Rd in Fenwick. Check out their website for more events, including a pork roast!  

3.  For us, another milestone approaches as we celebrate Rachel's 8th birthday on Sunday, May 4.  It is hard to believe it's been 8 years since our normal changed forever, but we give thanks for the support and encouragement we have received over the years.  We trust God will take us into the year ahead just as He walks with us now.  That trust is fragile at times but it is there.

Last week ended up congested as Janneke stayed home from school with a new cold (!), and she shared it with her family. We look forward to a return to good health and a chance to celebrate the children's centre, the VanDriels, and Rachel!

funny moment this week:  I took Janneke for a coffee this week to a Tim Horton's in Welland.  Sonya VanDriel will attest to this truth:  Almost all the men in the coffee shop had to turn their heads and watch me operate the lift as I unloaded Janneke from the van.  It was funny to see all these faces staring at us through the window - as if I didn't notice 10 men watching every step in the transfer from van to ground. Mind you, they were probably not so excited about my looks or Janneke's unique presentation as they were about the hydraulics of the lift and the size of the van.

Peace for your week,

Sunday, April 20, 2014

a bit worn

So there's an expression I borrowed from Ralph. He picked it up while sauntering past the home ec sewing class in his highschool days.  "Keep it threaded."

There's a story there, but I'll leave that for Ralph.  Suffice to say, I've adopted the expression as a mantra of encouragement, most often when I'm talking to myself.  Don't go getting unraveled, girl.  Keep it threaded.

It's been over two weeks since Rachel was in school (argh), but thankfully, Janneke has been back to entertaining her teacher and therapists.  I've been spending a lot of time with Rachel; the photo above was taken by Soph.  I think I can read Blueberries for Sal from memory now.  

In this latest season of continuous illness/discomfort for Rachel and Janneke, the fabric of my being feels worn and my soul ragged.  I don't like admitting it for fear dear ones will to want to fix things for me -when often, I just need a listening ear.  Or a kick in the pants.

In these last few weeks, I can also see how the lower energy levels tempt me to envy the lives of friends or family around me, craving what looks to me like an easier way to live and laugh.  I know, not helpful.

There are good things happening - the weather is warming up, I've been able to run again, and we've tried to step away from the house for date with either the two of us or with Em and Soph.  That is helpful.

It's Easter weekend, and I find myself thinking about the people living at the time of Christ who were convinced He would make everything right and good in that moment, overthrow the Romans, etc..  But those people didn't see the bigger picture.  They were caught up in what they defined to be powerful, important, and significant.  And I can't help but see myself in a parallel circumstance, eagerly desiring what I think should be restored and how things could be made better.  But, I must trust the bigger picture and know that there is power in weak moments and seasons of sickness.

Keep it threaded. Yep, caught myself saying it aloud while grocery shopping the other day.  Soon, this season will pass; it will either return to "normal" or we will adjust to a new normal once again.

A couple of snapshots from the last two weeks:

Rachel loves the read-aloud stories on iBooks.  Janneke turns her whole body away from the iPad if we show them to her, but when we show them to Rachel, Janneke shows interest.  

Rachel started Botox treatments in her legs as a trial to see if her legs will relax for her AFOs and weight-bearing therapy. (Go ahead and google that if you are curious.) The spasticity clinic has a bead program similar to the cancer care clinics.  These are Rachel's beads: her beads tell others that she has had surgery, serial casting, OT and PT involvement, and, of course, of her upcoming birthday.

I have the girls outside more often now that the weather has become warmer.  Even as both girls were not well, I put them outside - either for walks, swings, or sit-in-the-sun time.  

The Brand family came over, and Rachel supervised the work of shoveling soil from the trailer to the flower beds.

Janneke was content to explore her ball handling skills.  She pulls away from toys (and the iPad), but she loves to touch texture - and the basketball is perfect. 

We've had a few appointments at Mac and the doc - some planned and some last minute. There are a few more to come in the next month that will hopefully help us understand the pain issues for Rachel and the saliva management for Janneke at night.  Gotta keep it interesting.

Gotta keep it threaded.

peace to you,

Sunday, April 6, 2014

random Sunday thoughts

How to cheer up your little sister: Make animal sounds while cuddling in the hammock.  She loves the sound of a duck and a cow.

Sisters collaborating: "How do you make your duck calls?"

The baby turned 5: She may be cute, but she hasn't been sleeping much since Thursday night.  Poor kid has a spring cold that won't leave her alone. 

more spot thoughts: It's as though my previous post about watching them sleep and be healthy should have been whispered instead of blogged.  Now our night sleep seems more like night naps as we help Rachel cope with intermittent pain issues and Janneke cope with her cold.  argh.

Last thought: Being thankful for big sisters and sunshine today.

Peace - and seeking good health for everyone this week,

Tuesday, April 1, 2014

spot thought

After the nurse left yesterday, I checked on the girls.  I found both Rachel and Janneke sleeping in their own beds but in identical positions.  Both had one hand reaching out through the side.

I stood for a bit, watching them sleep.  I was thankful for the extra sunshine now that the days are longer.  I was thankful that both girls were healthy and sleeping because they were tired - not because they were sick.  I was reminded of how much they are alike, and how much geneticists are puzzled by their similarities.

It's in those moments of reflection that I want to stop - suspend time.  More often, I am reminded that we are moving beyond those baby years with Rachel and Janneke.  Obviously that is the case with Emily and Sophia, but changes with them seem familiar and normal.  We joke with Em and Soph that their brains are slowly becoming mushy as they approach the stage of adolescence.  We warn them of the extreme highs and lows, and we find ways to laugh with the four of us over the changes that are happening.

Moving into "older-kid season" with Rachel and Janneke is intimidating.  I crave a routine for them that I know.  I want the familiar.  I don't want to move forward into what I don't know, what is unfamiliar. It's harder to laugh about their changes; changing diapers on a growing girl is a reality check.

Next year, both Rachel and Janneke have been invited to attend the Niagara Children's Centre School again.  We have enrolled them, and we are excited to have them in an environment that specifically focuses on their needs and abilities within the context of their limitations.  Yet, I will be honest and say that enrolling them back at NCC School is also a relief because it is familiar.

Moving slowly past the cute-baby-with-special-needs into the big-kid-that-isn't-always-cute-with-special-needs is part of life.  It's the natural progression.  It's also kind of scary.  There are many stories out there, circulating the challenges of parenting older kids and adults with special needs.  The experiences of cut funding, lack of respite help, and hospital hurdles are ones I'd rather not read.

I suppose that there are many of us in predicaments or situations not of our choosing that crave the familiar.  We reluctantly step forward, looking for something we can recognize.

I do trust that God has all things in His hands, and I am trying to glean what is helpful for the journey ahead.  But, there are those moments when I'd rather suspend time and pretend nothing is going to change.

peace for your week,

The best thing about the future is that it comes one day at a time.  
Maybe Abraham Lincoln said this?  In any case, the words ring true.