Wednesday, May 23, 2012

weekend -and a wall- away

We followed through on a promise to Emily and Sophia this past weekend.  Our first overnight or far-away trip (in the Sprinter) with the family was to Dave (my brother) and Jodi and their kids in the woods outside Detroit.  It was refreshingly simple to pack the Sprinter with our necessities, and we appreciated the space for accessing the girls in their chairs en route.  Rachel was not comfortable with all the sitting, but she did reasonably well considering it was five hours of sitting in the chair.  We gave her a quick stretch break outside of London and that helped.

The weekend weather was a gift - and we made the most of it.  

The kids enjoyed the newly built "carwash"

Janneke loved the up-close-and-personal greeting from Mats

Rhoda and Johan were also along for the weekend, providing extra help since we did not travel with a caregiver.

Both Rachel and Janneke loved the warm water of the hot tub

And of course, Janneke had to take in a hockey game.  She gets quite involved.

It was great to watch the cousins interact.  Yes, there were mixed feelings as I watched the kids run and jump and play while Rachel and Janneke were less mobile. Yet, we tried to give them the opportunity to sit in the sandbox, play in the kiddie pool, and be in the middle of the excitement.

Once again, Rachel could share her iPad learning with cousins.  Sometimes the wheelchairs deter little friends from playing and interacting with our girls, so we do what we can with the tray or at the table to bring the kids together.

There was also time for laying around and enjoying the sounds and breezes.  In this photo, the girls are laying on a blanket that my siblings and I had as a baby.  It has since faded but still provides a soft spot for much needed relaxing.

Here's a snapshot of a much newer version of that blanket - me and Oma's chickens (1974?).

We were surprised by Rachel's fascination with Jodi's hands as she crocheted slippers for the girls.  I had Rachel sit next to Jodi, and I noticed that Rachel could not stop watching Jodi's fingers and crochet needles move.  What kept her so intrigued?

We told Rachel that she was Aunt Jodi's helper, and I am almost certain she understood.  

(And because I can be proud of family, check out Jodi's finished product.  She made slippers for Sophia and Emily in a matter of hours.  Want a pair?)

After two days of fun outside, a campfire at night, games, and good food, it was time to go home.  (Thanks again, Dave and Jodi for the weekend away.)  We took the ferry over the border at Marine City/Sombra.

After crossing with the ferry, we had a quick pit stop to switch feeds, change diapers, stretch and prepare for the homeward leg of our journey.

A good adventure, to be certain.

As for the wall away, well, last night, more youth showed up with sledgehammers and other destructive tools...   to take down the wall between our existing home and the new room.  

Now, the floors are swept and we await the next step, getting us closer to moving into the room.  For now, the nursing staff are working in cramped quarters, but we know that soon, the girls' room will be anything but cramped!  

A huge thanks to the youth from Jubilee who came to destroy our home.  We appreciate you for your good humour and time to come over and rip apart the wall.  

As with any adventurous weekend, the day that follows finds us all tired.  I find for me, planning to go away and be out of our normal routine is exhausting.  We don't follow the normal schedule as when we are home with nurses, and after three days, I miss the schedule.  In some ways, giving birth to Rachel and Janneke crushed my confidence in parenting and I found new confidence (empowerment?) when we developed a routine.  Therefore, when we go away from home, it is hard to completely relax.  

I wish I could be more impulsive or laid back.  Somehow, we try to find a balance between being flexible and uptight, partly for Emily and Sophia's sake.  Yesterday, as I was musing over this while out for a run, I got a phonecall from the nurse that Janneke's blood sugar was quite low and asked for which plan of action I wanted her to follow.  So I stopped running, consulted over the phone and then ran home.  Janneke settled later that morning, but I was reminded that sometimes the unpredictable is just part of our new normal.  Such is life - and when life is unpredictable, I am reminded that He is faithful.  

Peace for your week.

Tuesday, May 15, 2012

loving the weather!

Why hello, there.  Thanks for the cinnamon rolls, Nancy.  The volunteers (especially Mr. Wil) love them.

Now, ahem... outta my way.

* * *

Look!  The van fits! And with room to spare for hay bales or chickens, should we build a loft.

It was another beautiful Saturday for the willing hands who once again, gave generously of their time and talent.  Not only do we have a roof on the garage, we also have windows. It truly looks like a summer home or a farm.  The neighbours are waiting for our barn party.

It has been a treat to share these changes with those of you who have stopped by.  In the next few weeks, the walls will come down within the new room and old room, creating the next phase of interior design.  The reality of this new home for our girls is more and more evident - long-term, safe care for both girls. (You are always welcome to lend a hand with building or bringing food.  Email Wil for details.)

* * *

This weekend, several of us on my side of the family had a chance to celebrate our niece Nella's fifth birthday.  We were able to gather in a community centre in downtown Hamilton where Janneke was thrilled to walk around while we ate and celebrated.

We are learning more about her personality each day; she would rather walk around on her own and touch the various surfaces than be near all the people and the festivities.  This has also been the case for church as I shared in the last post.

The iPad continues to be a great learning tool for both Rachel and Janneke, and it is an opportunity for cousins to interact when otherwise they might not.  Caleb was able to share a story and a game with Rachel, and Grandma also got a chance to work with Rachel on the iPad.  We are working with Rachel on turning pages in the virtual storybooks, and she is showing progress with understanding and doing this.  Very exciting.

Music therapy continues to be a highlight in our home every two weeks.  This past session, Rachel was very verbal during the songs, singing along in her own way with Mendelt.  We recorded this session again, and the girls love the replays each day.

So..  our yard is quite different from last year at this time.  The trampoline is being jumped on in the Kok backyard, and the Teeuwsen family is using our basketball net.  That leaves the swings in the far corner of the yard where there is still a bit of grass.

 And, well...  if there are scraps of wood, then there is a fort to build - even if it is miniature in size.

Janneke has reveled in the warm weather, and we were able to have everyone outside on the driveway Sunday afternoon.  Janneke explored the driveway and sidewalk in her walker, Rachel took in the view from her stander and her wheelchair, and we all enjoyed the company of our neighbours and the sunshine. 

Lest I doubt Janneke's ability to understand new concepts, she demonstrated a new ability on Monday.  

She must have really enjoyed being outside because as soon as Monday's nurse put her in the walker, she made a beeline for the front door - and just stood there, waiting.

We pulled her away from the doorway, but she simply returned to her spot.  It was as if she was adamant that we take her outside.

Awesome ability. I love being surprised by things like that.

She took in more sunshine Monday afternoon, watching cars drive by and then seeing Rachel come off the bus.  She focused her eyes on all of this - another new ability for her.

What will the next few months hold for her in her development? We look forward to more surprises.

Rachel also shows more awareness in her facial expressions, especially when she returns from school.  There are days when something special has happened at school, and the look on her face suggests a desire to tell us in some fashion.  

After she had a field trip to the sheep farm, we found the sheep on our farm animal app on the iPad.  She saw the picture, and together, we pushed the picture to make the sound.  She scrunched up her face as if to say she knew that sound.  We now have the reaction with baby chicks too - perhaps because she saw baby chicks at school?  I love this ability of hers!

* * *

There will always be days when I catch myself saddened by the things my girls are not.  Sunday was one of those days.  Every so often, particularly when Rachel and Janneke are around a group of kids who don't have special needs or wheelchairs, I am reminded of how different they can appear.  I forget their differences are noticeable - as also evidenced when I took the girls to the grocery store last week.  No one was staring to be rude, but people sure were curious with their steady stares.  

I am thankful those days end, and there is usually something to lift my spirits.  I know that God will continue to guide us through those ups and downs, and, this week, I am thankful for the chance to take the girls outside to chase the blues away.  

Peace for your week.

Wednesday, May 9, 2012

cool kids and a choir

Even when you are sick for your birthday, you can still have some fun.  Now these kids are cool.

Both Rachel and Janneke are mending from a cold virus, and we hope they are back to their usual quirky selves soon.  Rachel was well enough for an hour visit with the SK class at Beacon yesterday.  We shared some songs, a story, and each child went home with a cool pair of shades in honour of our Ray of sunshine.

There are more picture books being published in recent years that highlight the new normal many families deal with: Leo the Late Bloomer (Robert Kraus), Giraffes Can't Dance (Giles Andreae), and Igor, The Bird Who Couldn't Sing (Satoshi Kitamura) -the story we shared with SK.  

The parallels are obvious, and children learn through the subtleties that being a friend is a great gift and celebrating uniqueness is important.  

Here's a couple of photos and thought from the last few days:

Rachel was well enough for a brief moment to appreciate her giant birthday card from SK and enjoy some present-opening, courtesy of her big sisters.

Though family far away means we don't see each other often, singing phonecalls are very special.

Though she spent a great deal of time in bed resting, we got her up for a few minutes to appreciate the cake and a rousing chorus of Happy Birthday from some of her aunts and uncles.

Saturday was a beautiful sunny day, just ripe for renos...  this time, trusses.

This particular Saturday, we had brothers-in-law working side-by-side....

and brothers too.  In fact, the whole John and Marlene Teeuswen family has put sweat (and blood) or food or respite relief into our renovations.

As always, a few jokes and stories are shared.

And now there are windows.  It looks like a real room!  


In time, the wall will come down, connecting the new room with the rest of the house.  From that point, changes will be made indoors to make a large accessible bedroom and bathroom for the girls.  Stop in and check it out.

You are also welcome to help on a Saturday.  Those who have come speak of the good food and drinks that are readily available.  Eat, eat, work, eat, eat, work....

Janneke thrives on the sounds of the hammering and sawing.  Saturday morning, she made us all laugh as she imitated the sounds of the day.

Rachel prefers the more musical sounds.  We recorded a music therapy session with Mendelt on the iPad.  We often play the session for her while placing her in front of the piano.  She loves listening to the music, and she tries to play the piano too.

Speaking of music and Mendelt, there is an amazing concert coming up May 23, 2012 in St. Catharines.  It's the concert for Momentum, a choir comprised of artists of all abilities.  Mendelt is the director, and he will attest to the therapy your soul will experience when you hear the choir perform.  

When we see the purpose and power of such a choir, it reminds us that supporting families with children who have special needs isn't just about the early years, it's also about walking alongside adults of all abilities, nurturing and empowering them.  Come to the concert!  Click here for ticket info.

You won't want to miss it.

As a side note: Obviously, I don't take photos of the more difficult moments of our week. When there is little sleep and lots of stress due to illness or anxiety, I respect the privacy of our family and keep some distance between the home and the blog.  I won't pretend that we don't have moments of ugliness. Yet, it is a fact those moments are fleeting.  

Truthfully, I have times when I am (almost) angry in the middle of the night, dealing with a feed or an ill child, and I find it frustrating that anger is the first emotion to surface when things don't go the way we planned.  There is resolution when we admit those emotions, and it's a reminder to let go of the controlling nature, to ask for help, and ask God for peace in the storm.

Peace for your week.  Treasure the day and give thanks for the little things - I say without trying to be trite.  And when the day is not going so well, trust that God will carry you through it.  He will provide the strength needed for one day at a time.