Crafty

On a recent episode of Speechless the family spent the day doing things that were not limited to accessibility while the oldest son, JJ, who is wheelchair bound, was out doing things with his aid.   One of the mom's lines went something like, "I do things for myself...I lit a candle a few months ago!"  That episode really hit home in a lot of ways.

This weekend, Joshy has been in short stay.  Yesterday Jerry & I made a Costco run.  Kei, being very teenager-ish, opted to stay home alone and pursue her own interests.  Today, after church, I went shopping.  Nothing big, but I did spend quite a bit of time at the 100 yen shop looking over craft supplies.  I then went home and PLAYED!  I took an idea I found on Pinterest awhile back and ran with it.

There was paint involved...

And glitter glue...

We all need to play sometimes!!

All Hallows Eve

I am not a fan of Halloween...never have been, however, as Colossians 4:5 says, "Be wise in the way you act toward outsiders; make the most of every opportunity."  Halloween is an opportunity to reach out with the Gospel.

Saturday was the ECS Halloween Party.  We ended up with 40 people in attendance.  There were games...

 

 

A costume contest...

 

 

A pinata...

  

Snacks... Popcorn, rice crackers, pretzels, & cupcakes.

And pumpkin carving, with the reminder that pumpkin carving is a lot like becoming a Christian.  God takes us, cleans out all the sin in our lives, and puts His light inside us.

Sunday afternoon, I had another event at the library.  This was the easy event, other than all the planning meetings, that is, because the library staff did all the prep work.  This ended up being a bigger event than originally thought, with 27 children signed up PLUS parents and a few younger siblings who were too young to officially attend.  I didn't get an exact count but I'd say 50+.  We sang a song Knock, Knock, Trick or Treat, read two picture books, make masks, played a game, and went "trick or treating" around the room to practice new vocabulary.

 

 

Happy Halloween!

Speedy

Life is full of growing and changing... I know this.  However sometimes those growth spurts smack me in the face.  Today, on Facebook memories, I saw this video from 6 years ago.

I cannot figure out how to get the actual video clip, but here is the link.  Go ahead, check it out.  I'll wait...

Now here is a video clip from this week.

See the difference?!?

Joshy is also really enjoying his stander.

Along with these changes are also changes in appetite.  Recently he has been eating like a teenage boy, well, in a Joshy sort of way.  He still would be hard pressed to eat as much as a typical toddler, but he is now eating more than a typical infant!

Life changes.  Changes can be good.  Changes can be exciting!

Flower Therapy

There is a national park, Echigo Hillside Park, not far from us.  We go there fairly often.  Although not as often as I would like, we try to at least get there for the bigger events: Tulip Festival, Summer Night Presents, Rose Festivals.

Last year...

Yesterday...

Friends and flowers make even cloudy days brighter.  They also go a long way in grief relief.

 

 

 

And don't forget ice cream!  Each year, each event has a special unique ice cream flavor.  This time it was Red Rose.

 

 Good times!!

Remembering

Five years ago the October calendar was exactly the same as it is this year.  

Today, Monday the 10th, is a holiday just as it was a holiday five years ago.  Yesterday was the Takayanagi Fox Festival, then and now.  One difference, Joshy was in respite five years ago so that we could do the Fox Festival night hike over the mountain.  Another difference, we had no idea our world was about to be turned upside down and forever altered.

Five years ago, Joshy had therapy on Thursdays.  Thursday the 6th, he had a huge, knee to ankle, bruise which I saw at therapy so we stopped to have the doctor check it before heading home.  The doctor ordered an x-ray to make sure he hadn't broken his leg, but with no break and no other symptoms we headed home and continued life as normal.  We had no idea that Joshy was critically ill.

Five years ago today, when we pick Joshy up from respite he had another huge bruise, this time encompassing his whole hand.  I found this odd, but he already had a regular checkup scheduled later in the week, so I figured we would wait until then to have it checked because, other than the bruises, he seemed fine.  I had no idea that, had the LORD not intervened and gotten us to the doctor sooner, Joshy would have very likely been dead by Thursday.

Five years ago tomorrow, 11th, Joshy went to school as usual.  Around noon the teacher called that Joshy had thrown up and wasn't acting right.  By the time I arrive at school he was a floppy, lethargic, rag-doll of a boy.  I drove him straight to the hospital where lab work showed that his blood counts were extremely low.  Joshy was admitted that day and wasn't discharged until November 19th, and then only after a transfusion to boost his counts and so that we could spend the weekend at home before going to the Cancer Center on Monday morning the 21st. where we would end up staying until April.

Five years ago, when ask how long we should expect to be in the hospital, the doctor said we should think weeks not days.  Reality, those weeks turned into months.

Five years ago this week, we learned about blood transfusions, bone marrow aspirations, and heard the word Aplastic Anemia for the first time.

In the five years since starting the hellish roller coaster ride that is Aplastic Anemia, our lives have been forever altered: in good and bad ways.  Today, Joshy's counts are still slightly below normal, but at a safe level nonetheless.  We still have to take extra precautions, especially against germs.  I still cringe every time I see a bruise.  I still haven't been back to the Takayanagi Fox Festival.  I still grieve, but it is getting better.

Blessings From The Storm

Storms come and storm go.  This past week we had a typhoon roar it's way up our side of the island.  While it had pretty much dissipated by the time it made its way this far north there was still quite a lot of wind.  Yesterday I got a text message asking if we wanted apples.  Apples that were still slightly green and quite beat up because of the storm, but apples nonetheless.  Sadly the apple grower cannot sell these pour beat up beauties, but because of a friend, a garbage size bag came to our house.

As I type, the worst of these are now simmering in the crockpot becoming apple sauce.  It took a little more effort to get the job done because they had to be peeled & sliced by hand rather than using my peeler & slicer, but the end result should still taste the same.

 

A couple more become a cake.

I am going to attempt to let the remainder ripen up a little.  They will need to be closely watched because storm ravaged apples can go bad quickly.  It is much the same with people.  Storms come, in nature and in our personal lives.  The wind whips us, bruises us, and knocks us down.  When storms hit we need a little extra care.  Sometimes it seems like it would be easier to simply give up, throw ourselves away, rather than care for the bumps and bruises.  But if we let the LORD pick us up and wash us up, bandage our wounds and take care of us, we can still have an amazing life.  We may not be as beautiful, by the worlds standards, as before, but that doesn't make us any less valuable.

Habitual

Habitual:of the nature of a habit; fixed by or resulting from habit

I used to habitually blog.  I used to be a habitual walker.  The key phrase is both of those sentences is used to be.  I'm sitting here wondering why good habits are so difficult to build, but so easy to break while bad habits are just the opposite...sigh!

This month I am attempting to get back into some good habits.  

Menu planning - check!  

Blogging - well this is my 2nd blog in a week rather than a month, so I might be getting a little better.  Walking - Three days in a row - YAY!

 

Wednesday I stopped at the park near Joshy's school and did a couple of laps.  I also got to see a crane.  So beautiful!  I just wish I could capture the beauty on "film".

Thursday was still rainy after the typhoon.  I almost gave up on walking but decided to stop at Genki Kan, a public service building, and walk on the inside track (80m/87yd).  I generally dislike doing this because I get bored easily.  I much prefer getting out in nature where there are fun things to see. However, this time a lady actually started a conversation with me and we ended up talking until I needed to leave.  This made the walk much more enjoyable.

Today I had errands to run after I dropped the kids off at school.  I had also run out the door in my flip flops.  BUT, somewhere between stops, I decided to park the car at ECS and walk home.  AND I actually followed through!!  This means that I will also have to walk to work this afternoon!

 

I even saw a tanuki near our house!!

I still have a way to go before I am actually back to some of my past habits, but I am a little further along than I was.

Baby Steps!

Thwarted

Therapists, caregivers, teachers, equipment reps are constantly thinking about ways to help individuals overcome handicaps.  More often than not the solutions allow the individual to do things independently, however sometimes the opposite is true...

Joshy LOVES playing with the break lever on his wheelchair.  When we want him to sit still he flips the lever and proceeds to run over anyone in his way.  When we are attempting to walk down the hall, he flips the break lever bringing everything to a halt, hopefully before the person pushing flips over the wheelchair and/or gets run over by anyone following too closely behind.  He is getting MUCH better at doing this, too!  I'm pretty sure that if he were a typically developing boy, he would have been the three year old to drive the car into the house O_o

The teachers and I have been scratching our heads trying to find a way to put a stop to Joshy's shenanigans and save ourselves in the process.  We have tried covering the wheel & break.  Hopeful that "out of sight, out of mind" would work - NOPE, he pulls the cover off.  We've tried wedging something soft into the space between the wheel & his seat... he simply picks at it until it is lose enough to pull out.  Velcro strap around the break lever & wheel.  This actually worked for a few days until he pulled long and hard enough to break the plastic buckle.  The therapist had the idea of turning the lever down rather than up, but wasn't able to get the break lever off.  Today we had an appointment with the wheelchair rep.  He was able to get the lever off, but as we were contemplating the pros & cons of an upside down lever, the wheels were turning in Joshy's head... He all but had it figured out - sigh!

Finally, the rep had a brilliant light bulb moment...

Simply leave the lever out!  When we need to lock the wheel, put the lever in, lock it and remove the lever...

DUH!

 

The lever doesn't need to be screwed in it just needs to be in the hole, and in fact, a pen or chop stick or anything can slipped into the hole and be used to flip the break.  Obviously, using the actual lever is ideal, but in a pinch there are other options.  In light of needing to store the lever in an accessible - to caregivers, not Joshy - spot, I came up with an idea of my own... I recycled Jerry's old cell phone case!  The clip fits perfectly on the handlebars, but will not slip off because it won't go past the hand grips.

So the boy has been thwarted in the break lever mischief department.  However, we do need to make sure sticks, pens, pencils, etc. stay out of his reach!!