Monday, March 25, 2013

sunshine and patience

Sorry, Dad.... did you want to see the hockey game? I've got it covered already.  Love, Janneke.

Saddled with dolls and stuffed animals (thanks to her sisters), Janneke uses her walker to find the TV.  She follows sports more than any other program.  

* * *

These last two weeks have been filled with more sickness, sunshine, and adjusted expectations.  

It seems Janneke is catching one virus after another, with maybe one day of good health inbetween.  It's frustrating to think of the programs and therapy she is missing by staying home to recover.  "Sick" seems to be the chorus of this winter season.

We did get a chance to catch some sunshine this weekend.  Ralph and I took Em and Soph for a walk along the canal - well, the girls rolled on their scooters and we walked.  Not always, but there are times when we welcome the slower pace of being with the four of us.  

Rachel and Janneke have been in their beds more often again, so I am extra thankful for the big windows and space in their room.  There can be a sense of guilt when they spend more time in bed and less time in their chairs or outside.  Yet, it's as if they go through times when they just want to be in their own space.  So, we honour that.

And we are humoured by it too.  Love Janneke's relaxed sleep position.

Tonight was a cheery night - hopefully, Janneke is on the mend once again.  Em and Soph entertained her on their recorders.  I think she's the only one who truly finds joy in recorder practice. 

I'm liking it, I'm liking it...

 Yep, I'm loving it, I'm loving it...

In this photo above, she is actually trying to sing along.  Make a joyful noise, kiddo.

Another Monday is put to bed, and the week is still ahead of us.  Here's to flexing the muscles of patience with canceled plans and determination to make fun happen however possible.

* * *

This is Sophia's Grace Garden, a piece she made to help us all remember the events of Holy Week and Easter.  The second candle was lit tonight at supper.  

(And then it was quickly extinguished because we realized birthday candles burn quickly. No need for a grass fire in the grace garden.)


Wednesday, March 13, 2013

Happy Birthday, sunny Jannie

The baby has a birthday tomorrow.

Janneke Grace will be four years old -and hopefully a lot healthier- tomorrow.  She is dealing with a stomach virus (again) that threatens our plans to celebrate.  Recognizing that we could have cake any ol' day, we wish for at least good health tomorrow.  Tonight, she showed some promise when she smirked and played with balloons that Sophia blew up for her.

I went back in the blog archives and looked at our posts for this date in 2009, 2010, 2011, and 2012. I am reminded of how we have been cared for and how much has changed.  Our first blog post was Janneke's birth.  Not so sunny then.

Welcoming a child with special needs into the family can be interpreted in different ways.  With Rachel, we had approximately eight weeks to absorb the surface issues of raising a child who would be medically fragile.  For us, Janneke was the second child with significant medical concerns - and her presentation was a complete surprise to everyone.

I can still recall that first day of her life, as I held my moaning baby, purple from all the bruising of birth.  All our visitors told us we would be okay with our beautiful baby.  I didn't believe any of them; no one carried enough validity for me to believe that we could be okay.

Janneke's birth rocked our world.  Knocked us off our feet.  At times, our social graces and rational thinking were (and still can be) buried under sleep deprivation and anxiety.  We've read the Welcome to Holland poem but wonder if it's missing a few cuss words and a stiff drink.  In some ways, we feel that only now in the last year are we learning to stand again.

It is a bit dicey when you share your honesty about parenting special needs.  It is a living grief - but we are not always mournful.  It is a daily sorrow - but no one has died.  Each day has reminders that our life is not a normal pattern, not the dreams we thought we'd live. Sometimes people don't want to hear that, or they get tired of hearing those words and wonder when we will get over it.

Grief (of any kind) shapes you; you are never the same, yet you learn to live with grief.  There is constant fight for joy, a wrestling match with God - who has promised more than once He won't let go.  We are not our own, nor are we on our own.

He has created us wholly, so the emotions of anger, frustration, and bitterness are just as valid as the joy and praise.  He has also created people that have come into our life to help us, encourage us, and pray for us.  A community of grace.

This isn't a perfect life. And it was never promised to be any different.

In this life, we choose to fight for joy.    I appreciate the words from Sanctus Real "Run" -

don't lose heart when you're feeling low
when the road looks long and
you don't know if you have the strength to make it home
you're not on your own

Makes me think of Mumford's "Holland Road" -

but I'll still believe 
though there's cracks you'll see
when I'm on my knees I'll still believe

Our Maker made Janneke.  She has brought us joy, and she has taught us much grace in these first four years of her life.  We move forward, trusting (D.V.).

Happy Birthday, Baby.


Spring shadows of a recent walk

Friday, March 8, 2013

sixteen candles


That's us.  

Today marks sixteen years of marriage.  No, contrary to how the photo looks, we did not get married in the 80s.  It was 1997.

We watched the VHS of our wedding ceremony and reception last night.  At one point, we noted that we were watching a VHS recording of our wedding reception slide show.  Remember slides?  Oh, how times have changed.

Sophia took this photo today to make our image very current

Happy Anniversary, rpot.  Here's to many more years....even if you leave for your evening meetings with the TV remote in your pocket so that I am forced to watch the Leafs.  

Here's a couple of photos from the week:

Janneke has a number of little friends who like to help her at preschool.  

Hannah is diligent in getting Janneke's "toat" (coat) and boots on.  She insists on following through by pushing her to the van and watching her load into place.

It's these little people who help the big people not feel so awkward around our girls.  

This week, Rachel battled some teething issues -new molars?- and a new cold.  She was taken home from school at noon one day because she seemed to be unwell.  Ironically, as I drove her home, she took her hands and banged her tray the whole way home.  I almost felt she was ticked that she was going home early.  
 cuddle time with Emily means lots of staring at the light - what does she see?

She had a chance to spend time with her Beacon friends at Corey's birthday party.  It is always a treat to see these little people run up to Rachel and greet her.  I can only wonder how long they will feel so comfortable around her.

I noticed the shyness and stares of the kids who were at the party but had not met Rachel before.  Funny how open they can be with their questions:

What's wrong with her? When did she get like that? She's almost seven years old!?

But... it is these little people who will grow up into big people who will hopefully remember Rachel and not be intimidated by special needs.

Tonight will be a quiet night: taking care of the kids, planning a special dinner, and hoping whatever cold Rachel and Janneke have will leave quickly.  Next week, we have some appointments, but more importantly, we will be celebrating Janneke's 4th birthday.

Peace to your homes.

Here's a snapshot of Janneke pushing through the adult's legs and the open door, determined to make her way down the hallway at the children's centre.  I am always amazed at her determination to find the open spaces.  

Sunday, March 3, 2013


Sometimes Sunday afternoons can be relaxing with just our family.  This afternoon, all four girls watched a bit of Wizard of Oz on TV.  Emily and Janneke were together on one couch, and Sophia and Rachel were on the other couch - feed pumps creatively tucked behind so the tubing wouldn't interfere with snuggling.

Watching them made me think about the dynamic between our older girls and younger girls - the "siblings of special needs" dynamic.

I remember when Rachel was born, we were told by some people that her needs would bless Em and Soph, making them extra compassionate and kind.  (Kind of like the other comment, "Special children meant for special parents.")

Really?  I know the words were offered with good intentions, but truthfully, those are strange prophesies.  I don't believe we can predict accurately that Em and Soph will be extraordinary in some capacity because they are sibs to sisters with special needs.

If that were the case, wouldn't all soon-to-be parents be hoping for children with special needs - instead of healthy babies?

Time will tell how our family's journey will shape Em and Soph.  God's plan for them will unfold as we see it, one day at a time.  No fortune telling here.

We do know from others' experiences that there are potentially some tough days ahead - as there have already been for us when it comes to understanding the relationships between parents and children and children with significant needs.  We pay attention to the stories and research that talk about the importance of one-on-one time and appropriate communication.

Thanks to a friend Tammy who is also familiar with the journey of being a sib of special needs, we read Views From Our Shoes together with the girls, and we did some journaling together the first year of Janneke's life - when we were all dealing with the shock of having two kids in the family with significant needs.

As a family, we laugh now at some of the thoughts Em and Soph journaled at that time - being so much younger.  And yet, I am glad we were encouraged to give both girls a chance to articulate in their own way. I know we don't have to help Rachel and Janneke wrestle with the fact that they are different and delayed, but Em and Soph continue to process that.

It is not easy.  It's more than just explaining to them that Rachel and Janneke might not get married and have families.  It's also helping them unravel the complicated feelings that come with seeing their friends relate so freely and easily with their own families.

It's helping them verbalize the frustration that comes with acknowledging Pot family time has limitations - or means that we do things with three or four of us instead of all six.

It's explaining to Em and Soph when they overhear the question, "And when are you going to put Rachel and Janneke in a (group)home?"

And then we have to unpack words like retard.  I can naively hope that by the time my kids are on the social network, people will stop using retarded jokes and special needs insults.  It saddens and amazes me how good people can carelessly speak or type their words.

I don't want to worry about when or if Em and Soph will stop snuggling with their little sisters. I don't want to worry about tomorrow, about how resilient or compassionate my kids will be -or if they will resent the family they belong to.

I also want to let Em and Soph learn and process as they are right now.  Both girls wish for peers who can understand their special needs family, but I don't want to throw on them the adult perspective - or my own grief.  Nor do Em and Soph need us to place unnatural expectations on them.

I know that anxiety about tomorrow will only rob us of today's joy.  We will persevere in savouring the moment.  We will be thankful for the moments we can have with our family - with all six watching a movie, or with Em and Soph enjoying a ski day with Dad.

Choosing joy in this journey isn't about following a lovely yellow brick road.  It's a difficult choice at all ages that doesn't necessarily promise an easier future.  But we're committed to that Joy because we know God is faithful.

Peace to your homes.