Thursday, March 27, 2014

Willa love


Cute baby moment.

Meet Willa, newest cousin to our girls, daughter to Rhoda and Johan.  She came to wish Janneke a Happy Birthday and bring cheer to Rachel who is dealing with another infection.

 She tried singing.

 And then she did some deep soul-searching gazing.

Janneke tried some physio moves on Willa's feet, legs and hips.

 Willa thought that was great.

 So great that she started kicking Janneke in the chest.  Which is what Janneke does to us when we are massaging her legs.

 Willa's joy was evident.  

 As was Soph's in seeing Willa finally awake.  All her previous visits were with a sleeping Willa.

This won't be a long epistle, partly because I am tired and can't form super sentences.  I am reminded of how much weather, sleep, and the health of my kids can build or tear down the spirit, so I give thanks for the longer days, the bits of sunshine, the quick naps after supper, helping hands in the home, and antibiotics (again).

Peace for your week's end,
spot

Last pic: time to stretch... 
(I didn't dress Janneke that day, so no judging.)



Sunday, March 16, 2014

5 pi parties

 the two Janneke's

Another year for Janneke.  She turned 5 on 3.14... hence, the need for another pi party.

When we celebrate Emily and Sophia's birthdays, there are stories shared - the time they were born, where they were born, who we told first, the fact that Soph came so fast and Em took her time... The girls love hearing those same stories each year.


When we celebrate Rachel and Janneke's birthdays, it becomes complicated.  There are certainly stories with each of their births, but we don't enjoy retelling those.  In fact, the day Rachel was born and the day Janneke was born are days I almost want to forget.

Not that I am regretting their birth or have some hidden angst that I've suppressed.  I don't think I'm a bitter person.

I just find the anniversary of the day they were born difficult.  I don't tell my older girls that their parents cried buckets before finding the right words to tell them about the new baby.  I don't like to relive the shock or the panic that came - instead of the joy and excitement that we had hoped for.  I don't like remembering the sounds of new healthy babies around me in those crowded maternity wards in 2006 and 2009 - or the excitement I could hear from other families of those babies.

This isn't to take away the joy of any healthy baby born.  It's just to say that the actual birth-days for my two younger girls are layered with complicated emotions.

It wasn't intentional, but we celebrated Janneke's birthday with her grandparents on Thursday, and with more family on Saturday - instead of Friday. Friday happened to be the day Ralph and I could arrange extra respite care, so we could spend the day with Emily and Sophia on some snowy hills.  Yes, this x country skier went downhill... and finished with no broken bones.  Rachel and Janneke were loved and cared for at home, and we made some happy memories on the slopes with the four of us. Being on that ski lift together felt so far removed from that hospital room five years ago.  And that was a good feeling.

loved seeing these two master the hills with ease

When we came home, Rachel was happy to see us, as restless as she seemed, and Janneke was fast asleep.  Within minutes of Ralph holding Rachel, she fell asleep - a reminder that she is loved and loves us.

We give thanks for Janneke's five years.  We are thankful for the many ways we have been supported these past five years, and we acknowledge the peace and the grace that God has provided. Grace allows us to see past the brokenness and sorrow of the birth and give thanks for life and glimpses of joy.

finished the March Break with some music therapy
peace to your homes,
spot

Tuesday, March 11, 2014

to go away to come back

No, it's not the planet Hoth... sledding and boarding at night on the shore by Grand Bend, Ontario.

"Why would you go away?"

This past weekend, we took four days and rented a home on Lake Huron.  It was a spacious home set in the woods, within walking distance of Lake Huron and with Pinery Provincial Park for a backyard.  An awesome location.  We shared the house with another family, as has been a tradition to holiday together for the past ten years.

I see two dear... do you?

Before we left, I was asked why we would venture out.  We have a home that is accessible and beds that fit our girls with a height that serves our backs.  We have nursing hours in the home, and we have all the bits and pieces that make our daily routine possible with severely disabled kids.

So, we leave all that and try four days in another home - that hasn't been custom designed for our kids.

It's the same question we ask ourselves each time we try camping in the summer.  Why do we go away?  Who really benefits?  Do Rachel and Janneke even want to get away? Is it fair to Em and Soph - if we take their sisters or if we don't take their sisters?

This past weekend was good and not-so-good.  Thankfully, the good parts smelled, tasted, and felt better than the not-so-good parts.

trying out ear phones so the rest of us don't go wonky listening to Barney

Rachel and Janneke both started a terrible cold the first night away; this cold robbed us of sleep all four nights.  Argh.  We didn't take photos of the sleeplessness, the frustration and emotions felt at 3 AM when both girls were crying, keeping the rest of us awake.  Or the umpteen loads of bibs to be washed.

We did take photos of the good stuff.  And we savoured the support our friends gave, the cups of coffee put in our hands in the morning, the meals made for us, and the laughter that oozed out of our eyes and mouths...yes, we laughed so hard that our eyes were leaking.


We took advantage of the times during the day when the girls were feeling happy and did stuff.  We wrestled the wheelchairs through the snow and found a way to see the sunset and the wild landscape of frozen Lake Huron.

jump photo fail... oops

sledding on the sand, snow, and ice



Maybe we are stupid.  Maybe we are stubborn.  Maybe it's a bit of both that we call determination to find a way to get out past our four walls and do something together.  We want to find a way to make it work.  We know we fail when we don't have help with us.  Trial and error.  Try something, try it again, or find a new holiday plan.


We go away so we can come back.  We come back, grateful for what we have and what we can do.  We have regrets and we have sore backs, and we wonder how long we will try to holiday with all four kids. On our way home from each holiday, we talk through what worked and what didn't. We ask each other if we think it's worth it...this going away idea.

At this point, we will keep trying.

peace for your week,
spot

kids were convinced doing the dishes the old-fashioned way would make them sick





Sunday, March 2, 2014

spinning


The other day, I had a chance to have a coffee with Janneke.  Well, I had a coffee and watched Janneke wander her room.  She would spin in circles - and then pause to look up, as if something significant had caught her attention. I could only guess what she might be thinking as she hardly made any eye contact with me, choosing to stay in her own little world.


Watching her made me think about how I wander through my days as a parent of four very different kids. Finding that balance of doing ordinary parent things with the unique bits that come with parenting Janneke and Rachel is tricky.  I get tired of bridging that gap between normal and not-normal, and I get tired of trying to guess the thoughts or frustrations of Janneke and Rachel.  It still surprises me when I get frustrated with Rachel because she's frustrated with me; we both aren't "getting" each other.  


Both girls are healthy at this writing, and I am grateful this winter has been much easier on the health front than last winter.  Having the extreme cold temps makes for long, indoor days for the girls, but we welcome the sunshine streaming through the big windows.  

This month, decisions will be made about where Janneke and Rachel will attend school in September 2014.  Each year, the Niagara Children's Centre School reviews their students case-by-case, and they decide whether or not the children are ready to try a mainstream school or continue with another year at the Centre school.  Each year, we have wondered what the next year holds for their school plan.  We can only hope that those initial decisions made for us by the Centre teams will empower us to make wise choices for the girls' coming year - whether Rachel and Janneke return to the Centre school or consider a mainstream alternative. Intimidating, to say the least.  We love our girls, and it has been a relief to have them at the Centre school where they (naturally) understand special needs and unique kids.  We know there are many great situations out there for our girls in the big world, but just thinking about communicating with a new school team makes my head spin.  

I'm going back to that coffee with Janneke and join her in that little world of hers.


Peace for your week,
spot

An afterthought:
For all the hype that led into the Olympics a few weeks ago, there remain glimpses of excitement for the Paralympics.  I didn't pay much attention to these games in the past, but now my kids are shaping my thinking and my interests.  When I was younger, I aspired -or at least thought it would be cool- to be a figure skater or a ski jumper in the Olympics, but I missed the chance to desire the incredible resiliency in the athletes set to compete this coming weekend's Paralympics.  Here's a snippet on cbc.ca earlier this week about an athlete from Dundas.