10
Nov

No crying he makes

We’ve seen some fun and interesting places as of late, food tours (like Herr’s Potato Chips, Sturgis Pretzels and Wilbur’s Chocolates), theme tours (like the hershey World of Chocolate – twice!) and educational places (like DC and Gettysburg).  We’ve celebrated birthdays and had a visit from one set of grandparents.  We’ve schooled (the middle four) and tested (James).  Work has happened and advocacy.  We’ve even made it to the many appointments we have each week.  Today tops everything we’ve had happen so far.

Isaiah managed to complete a full 9 hour day at the hospital with only one bout of tears.

Sound harsh?  Actually it’s really exciting!

He made it through his OT appointment where his arm splints were refitted.  It’s really warm on his skin as the OT presses the hot plastic against his little arms in order to hold it.  It also stretches his arms into new and aggressive stretches that cause him some discomfort.  No crying today though!

He made it through his upper extremities team visit.  His arms were pried on and his parents kept the team talking for far.too.long.  No crying today though!

We waited for many, many hours in a very crowded waiting room with a bajillion other families in order to see his lower extremities doctor.  No food or drink allowed there and we made him eat super quickly in the cafeteria before dashing back to wait some more.  No crying today though!

His name was called when we were the third last in line in order to have his leg casts removed.  He usually bursts into tears at the mention of his name.  No crying today though!

His Physician Assistant spoke gently to him and removed his casts.  Isaiah called out over the saw noise, “Good job, Mr. B____!”  Wow!  He even sat up to watch it happen and smiled at me at one point.  Let’s just say that the grownups in the room were stunned.  No crying today though!

He greeted his care coordinator by name and smiled for her.  Everyone was enfolded in warm grins and happy moments of glee.  No crying today though!

Finally, finally, he dozed off on my shoulder. They ushered us into the cast room.  And he woke up.  No crying yet.

UNTIL…..

The lower extremities doctor walks in ahhhhhhnd….

There were sounds of wailing and gnashing of teeth (like, literally, gnashing).

Ah well.  It was about time.  😉

 

28
Sep

Testing… Testing…

Pardon the weird formatting. I will fix it once the computer is set up. )

We drove into Philly today on a test run. We hit heavy traffic and so we’ll have to make sure to allow extra time for commutes to appointments. We also picked up a bunchimage image imageof supplies for the next bit, bought a couple things for Garnet’s birthday (“Did you know my birthday is in THREE days, Mom?”) and finished up the paperwork for the appointments we have this week. We also had a few moments that varied from trying to squeeze our behemoth into a very low parking garage.  We juuuuuust fit. 🙂  It’s also been interesting snooping in stores. It takes us 3 times as long as usual to shop because the packaging is different and while everything is labelled in English, the selection is super abundant for some items and non-existent for others. And the highways?  They curl in and out of each other like a ball of string. We have our van gps map on, Stephen’s phone on Google maps, a thick map book and then use my phone to ask Siri for help on top of it all. A few moments of frustration and a few wry laughs and we get the job done!

 

26
Sep

Coal Miner’s Daughter

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(Don’t mind the upside down photos, I’ll fix them later.)

Peoria, Illinois to Steubenville, Ohio

So technically we have been driving through a lot of urban sprawl but for some reason all day long I’ve had “Coal Miner’s Daughter” in my head. (Wasn’t Loretta Lynn from Kentucky??)  Anyway, in the irony that is my life, what did we pass on our way here tonight?  A HUGE coal refinery. It was awe inspiring to drive past it’s huge lights and towering smelter (?).  Actuallseasy a little frightening because on first appearance it seemed to appear out of no where.  Kind of freaky cool.

Lots of hours in the van again. We met some really interesting people at each of our pit stops. Real characters.

I like chatting with people in settings totally foreign to me (odd but true). This trip has proven that most people just want to share a bit about themselves and hear a bit in return.  We’re all pretty curious and when you get right down to it most people are more than willing to share a smile or share a moment. I think it’s one of my favourite things about travelling.  Now when I think of South Dakota or Illinois I have that cast of characters to hang memories on.

The kids played a number of rounds of Bingo. Faith avoids all games like the plague and Isaiah is content to hold a card. The other four duke it out pretty fiercely. So far the wins are:

James – 11

Garnet – 8

Grace – 5

Samuel – 3

Prizes are received at stops along the way. Mostly junk food which Faith does not generally care for and Isaiah begs for until some passing sibling shares a piece of their winnings. Truth. It passes the time nicely.

We are getting close to our temporary residence now. Stephen and I are becoming more snappish and feeling more ages and pains. The reality of the next week has hit. The treatment plan or the decision to not treat Isaiah will be worked out by Monday evening.

It’s always such a mixed bag when you are raising kids with complex physical, emotional or cognitive needs. First and foremost they are your child. You cheer them, correct them, lead them and basically do life in the same way as every other family you know. But, when you are faced with a new medical procedure, a new treatment or therapy, that’s when it hits you that something big is looming.  Be it for good or bad, it looms. And I takes it’s toll on each of us in the family herd.

No matter what the outcome of the hospital visit on Monday, we’ll all be okay. We’ve done hard before and each of us has found ways to not only survive but thrive.  I guess at the bottom of it all we just wish in these moments that it wasn’t our kid facing it too. But I’d say that probably that makes us fairly normal. Average even.

So, onward we go!

As an aside, we are staying at a hotel within the grounds of a Franciscan University. It is really quite nice but between the style of the hotel and the goosebumps the coal plant gave me, I couldn’t help but think of a character out of the classic Scooby Doo characters when we met one of the staff here down the long subterranean hallway. Okay, maybe not entirely subterranean, but definitely out of the way. Stephen just shakes his head at me. Remember what I said about a cast of characters though?  It looks like I have a new one for Ohio!  😉

 

 

 

 

 

24
Sep

Small towns have the nicest people

Keystone, South Dakota to Omaha, Nebraska

A pretty long, low key day.  Drove from South Dakota, to Iowa, to Nebraska.  The highlight, not pictured, was stopping at a small town diner where the waitress fussed over us (Isaiah especially) and where a who was heading out the door after her meal ran back to the kitchen to grab me a towel when I spilled my coke all over my lap.  Apparently her boyfriend works there and so it was no big deal.  Somehow, in the process of it all I laughingly said that it only happens when the clean clothes are limited on a trip.  She agreed and said that she finds the same thing when she is travelling to take her son to Cincinnati Shriners!  Well, we had a nice camaraderie after that!

The only other tidbit was during the first hour of the day.  I brought out the Interstate Bingo cards that Stephen had bought early in the summer.  Boy did we suddenly see Grace’s head pop up out of her screen!  She was on it!  It was a rather loud and exuberant hour, and in the end, Garnet won once and James, yes, our dear eldest, won six times!  I think we need to rig it tomorrow for better odds!  Haha!

 

Good morning, Isaiah!  He LOVED the rocking chairs out front of the hotel.

Good morning, Isaiah! He LOVED the rocking chairs out front of the hotel.

How I travel.  Map book and camera.

How I travel. Map book and camera.

An Iowa sunset through the bug-kill.

An Iowa sunset.

Samuel has become very focused on colouring today.  I don't think he's coloured this much in all his prior 6 years!  He even tucks his crayon behind his ear to hold it while he adjusts his clipboard and colouring page.  VERY cute!

Samuel has become very focused on colouring today. I don’t think he’s coloured this much in all his prior 6 years! He even tucks his crayon behind his ear to hold it while he adjusts his clipboard and colouring page. VERY cute!

South Dakota.  Very flat and Saskatchewan like in the south east.

South Dakota. Very flat and Saskatchewan like in the south east.

Isaiah was pretending to nap.  All of a sudden he burst into song along with the music that was playing... with his eyes squished shut, of course.  We burst out laughing!

Isaiah was pretending to nap. All of a sudden he burst into song along with the music that was playing… with his eyes squished shut, of course. We burst out laughing!

Early pilgrimage to the van.

Early pilgrimage to the van.

Stephen reloading the van - again.

Stephen reloading the van – again.

She's a cutie.  Curious about what's in Faith's backpack?  A sketchbook and novels, naturally.

She’s a cutie. Curious about what’s in Faith’s backpack? A sketchbook and novels, naturally.

19
Sep

I call it…

Eight People in a Photo Booth.

 

We visited OMSI today (it was rainy) prior to waiting for Samuel’s check socket visit. That just means he had the chance to test out the working model of the new prosthesis.  It looks amazing. Well actually it’s unfinished but HE looks amazing. Nice balance.  He’s getting a bit of a stride down. Again, much stress relieved. We drove over the bridge to Vancouver, WA and ate at a Red Robins. Yum. Balloons. Followed by a visit to Target. The little boys are buddies. That means they love, they squabble, they love some more. The bigs and middles are also buddies. I always forget how they all seem to fall into their pecking order when we travel. It feels really good.

 

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30
Aug

Halifax

IMG_1524 IMG_1534 IMG_1545 IMG_1547 DSC_3155 DSC_3148 DSC_3157 DSC_3160 DSC_3162 DSC_3164 IMG_3028We drove like crazy people yesterday, stopping in New Brunswick for an amazing and carbohydrate filled lunch at Potato World.  Honestly, we needed those spuds more than they needed us.

We’ve come to the conclusion at this point in the trip that Canada is truly astonishing.  It is more rural than we could’ve imagined.  More spread out and in need of good communication than we could have dreamed.  I mean, we know these things.  In many ways, it’s what makes us Canadian.  Perhaps that friendly spirit we are famous for is because of the desolation and loneliness?  I don’t know.  Okay, maybe not ALL of Canada is quite like that, but it seems like we drive and drive and then all of a sudden, oh look!  there is another pocket of civilization.  Quite a contrast form our recent trip to China!

We’ve found friendly people everywhere.  So many are openly encouraging of our little jaunt east and the fact that we’d bring our kids large and small on a trip like this.  Just when it feels like we might really have bitten off more than we should have, we get a little bright ray of sunshine from a fellow Canadian and it brings it all back into focus.

Today was a day like that.  It started with a trip to the walk in to have Faith checked out (it appears that her lymph nodes are swollen and not to worry), followed my some monkey business from a couple of the herd.  We recouped and headed to Timmy’s for a bite before our visit to the Harbour.  We all felt a bit wiped out.  We headed to the Maritime Museum first.  Took in the exhibits about the Halifax Explosion, shipwrecks and sailors lost at sea, a dying way of life, followed by an exhibit on the Titanic.  Honestly, it wasn’t the cheeriest time we’ve had.  We were doubly tired and I had wanted to head over to one more place, Pier 21.  Doggedly  we drove down the harbour front and walked into the Canadian Museum of Immigration at Pier 21.  What we didn’t know, was that our day was about to change.

We paid a small admission and headed upstairs to the exhibit.  We were greeted by a young woman with a heavy eastern european accent.  She brought out legos for the kids to build with and got us ready for a tour starting in a few minutes.  We gathered as a group with others and  were unprepared for the amazing tales ahead.

Over 1,000,000 immigrants were processed through Pier 21.  Ships from all over the world with people hoping to be admitted as Landed Immigrants.  Initially Canada had a policy of allowing only those that could be easily assimilated into Canadian society (read, white, western europeans, folks from Newfoundland  during pre-confederation (!) and Americans).  Over time, others were welcomed and the policies changed.  Tragedies occurred in the meantime.  While we had heard of the Chinese Head Tax and the ship filled with hopeful refugees from India that were held at bay in Vancouver’s harbour, we hadn’t heard of Mackenzie King’s denial of some 900+ Jewish refugees just prior to World War 2.  They were sent back to Europe.  There are records that 254 were killed in concentration camps and the other roughly 700 suffered horrible atrocities.  This formed a bit of a wake up call to the immigration policies in Canada.  There was a protectionist feeling during the depression, but post WW2, the feeling of a global connectedness formed.

Another aspect that changed the face of immigration in Canada were the War Brides and Grooms (yes – grooms, who knew?). Of the 500,000 Canadians who were involved in active service in WW2, 1 in 10 married a foreign spouse.  48,000 wife of servicemen entered Canada in the years following the war and brought with them 22,000 children.  These new immigrants brought with them a new surge of immigration in their wake.  My maternal grandparents and my Mom entered Canada around that time.

We found out that 1951 was a huge spike of immigration from the Netherlands and while it was a popular thing at that time, it was not a guarantee of entry nor was it stress free upon arrival.  I found it fascinating as we have heard stories the hardships that they faced once here, but what their first days in Canada would have been like really filled in a puzzle piece for me.  While they would have been well cared for, the confusion and simply the chaotic mess of it all would have been overwhelming and utterly exhausting after an already stressful goodbye to loved ones at home and a long steam ship ride to Canada.  No matter the provisions offered, it would have been a lot to take in.  No Google or Skype.  No guarantee of a friendly face once being given that highly prized ‘Landed Immigrant’ stamp on their passports.  A long, gruelling, expensive train trip west to major cities (in my Mom’s case, Winnipeg).

We left that tour and headed to a meeting hall filled with flags from many countries around the world and a large Canadian flag, made of puzzle pieces ,hanging as the centrepiece.  The young woman from earlier joined us.  Her name was Natalya and she, too, was newly immigrated (2.5 years ago).  She is a teacher by profession, but was given the job at Pier 21 for 6 months as a training period to gain work experience in Canada. She loves her job there and the kids really enjoyed meeting her.  Grace in particular commented how she was also a new immigrant and drew the connection to herself.

A number of people in our tour group had immigrated through Pier 21 and the guides told other stories of people who had found relatives, or even belongings, on display that belonged to themselves or a family member, while visiting the museum.  This led us to heading to the research room.  A number of guides were there to lead individuals through the process of finding information (landing records) for themselves or a relative.  I was unable to look for my family’s records.  Somehow another guide allowed Stephen to find his Oma’s.  I am not sure how!  Perhaps he made a personal plea, but my guide had told me that due to privacy laws, we would need certain proofs of family  connection.  Interesting.  I had a wonderful time looking through their bookcases of material and huge collection of fiction and non-fiction works on immigration in Canada.  So many fascinating stories.  I may or may not have added to our van’s weight today.  Books are hard to pass up.

The kids spent at least an hour on building Boxopolis.  A city of their own creation out of boxes.  A dream exhibit for a kid!

We wrapped up our day on a bright note.  After stuffing ourselves silly (no really, Isaiah has a hollow leg), we were driving along out of the Harbour district and I grabbed Stephen’s arm, “You’ve got to stop!”  What was it I saw?  A game/comic book store (Monster Lounge Comics – highly recommend it!).  There just may or may not be a couple new additions to our family’s game hoarding collection when we get home.

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Bookend vignettes from today:

Samuel loudly and with gusto told the tour guide at the beginning of our tour, “My family drove a LONG way to get here and we all hate it!”

A young docent at the end of our Boxopolis time let me know that all the staff in the museum were whispering about our family.  Apparently we were the highlight of their whole summer because working in a museum can be boring at times and the kids were so enthusiastic.

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A few more tidbits:

One of the couple’s in our group had an interesting mix.  The wife had come into Canada in the 1960’s through Pier 21, and the husband?  His family was one of the original French settlers in the 1600’s!  They live in Nanaimo, BC now.

A couple of our guides were exceptionally fascinating.  An ex-olympic figure skater (not sure which one, sorry!) was there and brought in a pairs outfit to show another guide.  One of our tour guides was a young man in wheelchair who is affected by Cerebral Palsy – he asked the best questions and was extremely knowledgable about the material.  Our guide Natalya?  She’s been in Canada 2.5 years, said goodbye to her 65 year old Mom to come here. Her Mom is sick back in the Ukraine and Natalya does not think she will be able to get back to see her before she passes.  Her Mom told her to stay.  Canada is the land of her dreams.

It still is folks.  Let’s not forget it.

 

 

27
Aug

Still truckin’

While Steve covers the quips, the daily homeschool journals cover the facts (and more – too cute sometimes!), it seems this blog is covering my emotional state. 🙂

Doing much, much better. Had some sleep, did some laundry, made some reservations and have unabashedly been sneaking bites of chocolate every hundred kilometres of so (was going to say hundred miles, but lets be realistic here).

We’ve had some shocks (nearly crossing into the US without passports), realizing we need those passports for our ferry to Newfounland (thank you, Mom, for having them couriered to us!), and then there are those roadside bathrooms (I don’t think I need to elaborate).

There have also been those moments when all we could do was laugh like when we had to try out five different restaurants in Sault Ste. Marie before heading to Timmy’s because none of said restaurants had room for us nor kid friendly tablecloths (wuuuuuuhite!).

Over all we are ready to get to the vacation part if this trip. Most days there is quiet in the van, chaos over our picnic lunch and then a mad scramble to settle into our rooms for sleep. I am loving the changes in scenery. The kids are absolutely amazing me with how the are following along on the map of the landscape of Canada. Total pay-off,right there.

Please pray for Faith. The last couple days she has developed first one painful bump on the back if her head followed by a different feeling one behind her ear. No obvious sign of entry from a tick or other insect, but the fact that spot number two has shown up is concerning. No other symptoms though. Thank you!

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28
Oct

Ahhh the chatter…

While driving away from Fall sleepover camp:

Garnet: We carved pumpkins! We made one if ours stab the other one and the other one was throwing up!

Grace: we carved some too! It had a cross and on the other side had a beautiful flower….

Steve and I just about died laughing. LOL

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16
Jun

Is it really THAT noisy around here?

I mean, I know we like to get a tad lively now and again.

Really and truly though, I feel this may be a bit much!

Okay.  So maybe he was just cleaning out the gutters, but it made me laugh so hard when I came outside to put something in the shed and caught sight of him a way up there!

To all the Dads and those who love them,

HAPPY FATHER’S DAY!

8
Jan

Ahhh the memories

Just now as I was walking past Grace’s room on my way to bed, I had a sudden urge to check in on her.  You see, she hasn’t been sleeping well for the past couple weeks and normally we hear from her every so often in the couple hours between her bedtime and ours.  So, walking past I suddenly wondered if she was actually asleep.

I opened the door and saw a quick movement of the blanket, followed by a very still and motionless form lying there.  Hmmmm this looks familiar.  🙂

I quickly threw off her blanket only to find her buried underneath with her new Leap Pad from Christmas.

I hear her intake a deep breath, “Okay.  I was doing this.”

Good for you, I think to myself.  You admitted you did wrong.  (Little proud moment there.  Trust me, if you lived in this house, you’d understand.)

I took the Leap Pad.  Told her I’d be keeping it for tonight, that I loved her and good night.  And down the hall to my bedroom I go.

Once there, I explained to Stephen what had happened.  Then I followed it up with a chuckle and asked him to reminisce.

“Sooo I remember reading under the covers and hiding books, what did you do secretly in your room after bedtime?  Did you ever get caught?”

He shakes his head no and then breaks into a blush and a grin…

“Actually, my parents bought an old used black and white tv one time.  I carted it into my room and put it in the closet  where I could see it from my bed.  That night I rigged a couple of skipping ropes that I could pull from my bed in order to shut my closet doors in a hurry if they suddenly came in after it was lights out time.

Sure enough, long after bedtime, my folks came in – my room was across from theirs.  I quickly shut the closet doors and suddenly I saw the flaw in my plan.  There was a bright glow emitted from the TV screen in the closet.  The volume didn’t hurt either!”

We had a good laugh over that!  Sometimes it’s so nice when our kids just plain old behave like, well, kids!