Thursday, November 24, 2011

from Janneke

Hi, it's me, Janneke.  

I've decided to write the post tonight for my mom.  I've had a decent week.  Two of my big sisters are at an Ice Dogs game with Dad (they got to sing the national anthem with their school!), my other big sister (Ray-Ray) is sleeping soundly, and my mom is hanging out with me.  I love being on the computer; Mom is hoping I will figure out enough cause-and-effect to learn things like communicating Hello and Mom with some kind of computer program.  I've been thinking an iPad is lot cheaper than those augmentative communicative devices....

About my week:

I am trying out a new walker.  Mom thinks the weather isn't so warm anymore for long walks, so I had a chance to spin the wheels and feet at a store.  Mom chose Michaels because the aisles are wide and there are lots of fake flowers and pine trees to touch at my hand level!

I still have my cold, but the chest physio helps.  Here's an older photo of me getting the physio.  Even when I don't have a cold, I get the compressions a couple times a day with my puffers.  Helps me get all the gunk out of my throat.  It used to scare Mom when I would cough up old blood, but now we know that's normal for me.

I had a hearing test this week (again).  I am not amused by these hearing tests. The audiologists try to make me smile and respond, but I can't say I have much to give. The ladies are cheery and nice, but a soundproof room with no windows and noisy pink stuffed toys is just a little out of my league. Mom says I have to go back in May again, but she is not worried about my hearing and neither am I.

I am worried though, about this poor stuffed elephant.

I much prefer the outdoors.  Today was warm enough for me to meet my sisters coming home from school.  I love being outside, and my Mom is hoping I can withstand colder weather this winter, so I can be outside more. The more I can stretch my legs, the stronger my bones will be.  I also like the change from being in the wheelchair stroller.  Mom thinks my wheelchair (when I am bigger) will be a bit different from Rachel's because I can do some exercise with my feet.

To remind you of the last post, here's a shot of me going vertical. On our outside lift, that is. Emily is taking me up, so I can go right to the front door without having to be carried.

How's Rachel?  Well, she loves school, but she comes home so tired!  Here's a photo of her admiring the sunlight on the mirror ball.  She likes to push her feet on the floor to move the chair a bit, but she is no match for me in my walker.

Mom also takes Rachel to a chiropractor in our neighbourhood.  Rachel loves the massage, and it is helping her with her muscle pain and teeth grinding.  She comes home from her weekly sessions so loose and relaxed...  I am a bit jealous!

Have a good night, everyone.  I'm off to relax in my bed while being fed.  Mom says there's more to write in another post about our new beds to come.  


Friday, November 18, 2011

still vertical

This afternoon, I watched yet another car speed through the crosswalk by my kids' school.  I yelled a warning with my greeting to Gerry, our crossing guard.  As I walked over to him, he said to me, "Don't worry.  I'm still vertical."

I love that phrase, Gerry.  I'm still vertical.

I need to remember that.

This week, I had one of "those nights" where I felt like stomping my feet, laying on the ground and having an explosive temper tantrum, the kind two-year-olds try to get away with.  Nothing major happened -usually it's something very little that triggers the meltdown.

I was tired of the drool.  Tired of the diapers. Tired of colds and flus. Tired of the laundry.  Tired of the fact that none of this may change for my kids' lifetime...

Tired, well, of everything.

That phrase, "I'm still vertical" encourages me. To know that in those temper tantrums, His grace is extended to me.  God went vertical for me on the cross. 

The irony is that often when I am sitting on the floor, leaning against the wall, exhausted, it is then I am reminded to be vertical.

Those feelings of frustration will pass.  There will be something to laugh about -and the anger will dissolve.  

What often dissolves my anger is the fact that both Rachel and Janneke love the sounds of yelling and crying.  They grin at me and think the sound stimulation is so amazing.  It's kind of funny, really.

* * *

Janneke has been alternating between fighting a drippy cold and exploring more cause/effect stimulation.  She loves to make the screen change with the kneebouncers website, and we hung a string of lights from our curtain rod that she likes to touch when she is in her walker.

Rachel is also dealing with the leftovers of a cold, but she seems to tolerate all the congestion better than Janneke.  She seemed well enough after the weekend to attend school this week.  Today, we had our second visit to the chiropractor.  She loves the massage and adjustment, and she is so relaxed after our session.

In fact, today, she was so relaxed that she was able to take her school day very seriously.  NPCC School had a pajama day today, and apparently, she slept most of her school day in her chair.  Isn't that what you are supposed to do in your pjs?

The week is ending on a quieter note than with which it started.  The girls are getting better each day, sleeping and feeding as I type right now; our weekend looks pretty quiet. (Well, not for all of us, I suppose.  Ralph is in a not-so-quiet gym out of town for a grades 7 and 8 volleyball tournament.)

Speaking of going vertical, Emily, Sophia, and I had a chance to watch two people set up for para surfing on the beach this week.  It was a super cold and windy day, perfect to hitch yourself to a kite and surf, I guess.  It was a beautiful sight to witness, masking the not-so-pretty guts and bravery necessary for the two people to actually take flight.


Tuesday, November 15, 2011

Monday, monday...

Well, the week started with a new friend, the CAA.  After a pulling out our battery that literally fell apart within its casings, the service guy said, "Boy, that rarely happens."

I said he ought to meet our family.  In fact, he did see Janneke who demonstrated her talent for sleeping and eating (the convenience of tube feeding) at the same time. She was tired out from her physio session at NPCC - really, the whole event could have been worse (side of a highway, no meds or feed pump).  Thankfully, we had just finished our physio session, and we were sitting in the parking lot of NPCC.  Rachel was home with the nurse, and we eventually made it home with a working battery.

The battery -with warranty- will probably outlast the van.

* * *

The past week has been decent.  We enjoyed a visit with Caleb, Nella, Aleah and Aunt Jess; the kids certainly enjoy each other's company.

watching a ship go through Lock 3

Caleb and Janneke playing Itsy Bitsy Spider

* * *

more from our week: Rachel have a heart-to-heart with Carolyn

Emily has started piano lessons with Julie.  We can't decide who is enjoying it more: Rachel and Janneke who provide an attentive audience, or Emily, who thrives on the challenge to learn.

* * *

Today started out a bit like a Monday all over again.... a significant sized puddle in the kitchen due to a leaky water tank, a slug on the floor, and garbage strewn outside the side door from some inquisitive neighbourhood animal...

But, aside from sliminess of the slug, I thought the silvery trail he left was kinda cool. (Here's the shot of our front mat that shows the trail it took to get from the door to the floor.)

It actually made me think of the kind of trail we leave behind in our journey of Life. Bit of a deep thought for a Tuesday morning, I know.
* * *

Now we are back into dealing with colds again.  Janneke was up most of last night, and Rachel had her share of the sniffles over the weekend.  Our care plan includes keeping their fluid levels up (extra water), adding Pedialyte to their feeds, lots of acetaminophen, ibuprofen, and Benadryl as well as sleeping upright as much as possible...  sleep...  Yes, sleep is a bit expensive right now.  But, everyone will mend -and sleep- in time.

Today, Rachel had her AFOs adjusted, and next week, Janneke's hearing will be tested once again.  In the next few weeks, we will be making several trips to Mac for follow up with our paediatrician, orthopaedic surgeon, and several others.

Good thing we have a new car battery.



Some lives that seem to end too soon on this earth still leave a powerful legacy.  Our thoughts have been on the Van Zumeren family this week and their extended community as they celebrate Glenn's life yet grieve his earthly absence.  

We hardly knew him -aside from one very amazing conversation this spring- yet to us, his life was an amazing testimony...

Sunday, November 6, 2011

a race, a hike, and a playdate

Yesterday was a great day for anything outside - including a race.  Emily, Sophia, and Rachel (with her dad's help) did the 1K alongside scores of other kids.  We were proud of Em and Soph for their effort, and Rachel gave us huge smiles with her ride. Thanks for cheering with us, Aunt Rhoda!

Janneke and I did the 10K together - and yes, she finished ahead of me.  But I almost went ahead of her at one point.  At the 5K mark, the front wheel rolled off, and I stumbled over the top of the stroller.  Thankfully, the wheel was easy to pop on, and I was thankful for the help of a bystander that came to assist me.  

While the wheel falling off has happened before when I have gone along the canal, it has never happened during a race.  The race was enjoyable, and I loved seeing Janneke take in the sights, but I think it will be one of our last for a time.  I will continue to run with the girls, but I am not feeling safe about racing while pushing.  In yesterday's race, I sensed the risks with my fellow runners; too many ran too close to me without realizing the potential for tripping or falling.  Until I have a better gut feeling about this, I will keep our shared runs to the canal -and trying racing on my own.  That will feel strange!

What better to finish the race than to visit with Opa and Oma?  All four girls enjoyed seeing their grandparents; we loved the tenderness shared between Dad Pot and Rachel. Interestingly enough, Janneke wouldn't stop making sounds during the whole visit.  

She hasn't made sounds for that length of time ever (other than crying), but for an hour yesterday, she made a sound from the throat accompanied with a grin.  It was priceless!

* * *
Earlier this week, Rachel went along with the SK (Beacon) class to visit Heartland Forest.  This park has become so familiar to our family in the last six months; any chance we have to visit is worth it.  I loved the excitement on the kids' faces as they greeted Rachel in the parking lot, and I appreciated all the help with pushing Rachel through the forest.

When we spent time in the treehouse, listening to Amy talk about the different animals, it was very important to the class that Rachel have a chance to touch and feel every skin or fur that was displayed.  I loved how they insisted Rachel be a part of the whole experience.  Before leaving HF, I had a chance to talk with the founder, Dan, and we were once again awed by his determination to make the park accessible and memorable for all who visit.

* * *

I also had a five year old friend visit me for an afternoon last week.  Zekijah is a companion for Rachel. Born within a few days of each other, Z has attached herself to Rachel for the last two years.  Z walks with Rachel whenever she sees her, wipes her drool, takes her in the lift at church to Sunday School, and asks to see her every day.

Having Z around reminded me of the days with Em and Soph at that inquisitive stage.  Z's questions and comments kept me laughing for the afternoon:

She insisted I wear my seatbelt the second I sat down in the van.
I must drive the speed limit because that was very important.
I should consider having another baby because we need more kids in the house.
She really actually hated (her words) the Fred Penner music I was playing.

Oh, to be five and share exactly what you think.....

After Rachel went to school, Z chased Janneke around in her walker, and peppered our nurse Kirsten with lots of questions. We finished off the playdate with a visit to the library.  A good visit for all of us.

Peace for your week.

Tuesday, November 1, 2011

running the race set before us...

Last Saturday, we buried the earthly body of my Uncle Richard Poort, a bricklayer by trade and an outdoorsman at heart.

Honestly, pardon the pun, but he was a real brick, a salt-of-the-earth kind of guy.

The body we buried was worn out and weak, but his personality and our memories of him were anything but that.  Almost all of the memorial photos chosen showed Uncle Richard outside, enjoying fishing (all year round!), canoeing, and camping. He was loved by his immediate and extended family, as well as the community of Woodstock.

Bittersweet is the company of family who know what it means to live with sorrow.

* * *

Uncle Richard and Aunt Alida (my bib-making aunt) not only had a heart for their family and community, but they also had a heart for the children in Haiti.

So, it only seems fitting to run this Saturday's race in Hamilton in memory of Uncle Richard.  The race? It's called Road2Hope - together, both Citykidz and Edu Deo ministries are raising money and awareness for children around the world, especially in Haiti.

I had intended to run this race with both Rachel and Janneke, but as of late, Rachel does not sit comfortably in the double-jogger for the duration of the run. That makes me sad - but also determined to find a different type of adult jogger stroller.  She loves the movement while we run, so I hope to sign her up (last-minute!) for the 1K to be run in her wheelchair.  Janneke and I will do the 10K together.  

I suspect Janneke will finish ahead of me.

* * *

I am not a TV person - I don't have time to watch TV, but that doesn't bother me. Yet, I find that I have used TV in parenting Rachel and Janneke.  Up until recently, I had been using Baby Einstein DVDs, and I thought that was sufficient brain stimulation.

But, the other day, Rachel and Janneke shared some screen time with their sister, and I was in the kitchen.  I heard both Rachel and Janneke laughing....  and making all kinds of strange sounds.  Turns out, they were responding vocally to "big kid" cartoons.  They now love Dinosaur Train, Peep, Sesame Street.....

I guess they were bored with the baby videos.  I even got a funny look from Rachel that I swear said, "I've been trying to tell you this, Mom. I've watched Baby Mozart heaps of times; I'm ready to move on!"

* * *

It's evening now, and the last feed of the day is almost done.  Both Rachel and Janneke are wide awake; I don't think I'll ever figure out their sleep patterns. 

We are slowing leaving the colds behind, and the last few nights have been a little less interrupted.  We had a chance to celebrate Emily's birthday last weekend, and it was great to see how loving her friends were with Rachel and Janneke. There are times when Em and Soph wish they had friends who had sibs like Rachel and Janneke - so we are thankful for the love and interest shown during playdates and parties.

* * *

I had to laugh a little at a neighbour boy the other night: He came to my door dressed as a nasty pirate.  He saw Rachel sitting in her wheelchair and with mouth agape, just stood there.  I wanted to tell him that having a pirate at my door was actually more shocking than seeing a child in a wheelchair.... but I allowed him the time to quietly soak it in.  He closed his mouth, shouted out a cheerful thanks and went on his way.  Rachel glanced at me with her quizzical look as if to say, "What was his problem?"

Peace for your week.

And speaking of peace... what better to come home and read the funnies with no interruptions.