Monday, March 26, 2012

view halloo!

view halloo indeed.

(If you hadn't heard this before, it's what you say when a fox breaks cover in a fox hunt.)

No fox hunt here - but the cover of our carport has been broken and deposited in the waste bin.

It was a noisy couple of hours, but all is quiet, and the ground is ready to be dug.

First, the bushes and trees were either removed or set aside for replanting.  We decided not to keep the invasive species and weeds.

After the carport had been severed from the house, the scoop was jammed in the roof and with a few tugs, the roof collapsed.

When I shared these photos with my nephews and nieces, I likened the scoop to a dinosaur eating his lunch.

Admittedly, it was a bit intimidating to have the scoop working so closely the window.  Good thing we trust Wil.  

And so, it's quiet again here. The backhoe is parked in the backyard, and we wait to see what happens next.

Speaking of hunting, I feel like tracking down our endocrinologist.  Waiting for a phonecall is not fun.  Rachel's sugars dipped a bit today, but we purposely kept her resting for most of the day.  She had a visit with the chiropractor/massage therapist this morning who gave good guidance for what appears to be some swollen/bruised/inflamed muscles in her shoulders.

Not sure if that is part of the low blood sugar mystery, but I am thankful for her advice.  It was a "wake-up call" for us to review how Rachel is lifted and handled here in the home with so many different people working with her.  The renovations couldn't come any sooner; we need that tracking and space to provide safe care.

I left a message with endocrine specialist earlier this morning.  They said I should get a call this aft.  It's nighttime now, in my book.  No phonecall yet. This is a familiar experience for us - and perhaps for you too if you have chronic medical issues for you or your family member.  There is a fine balance of patiently waiting and aggressively advocating.  I haven't mastered that teeter totter yet.

Peace for your night.

Saturday, March 24, 2012

and the walls came tumblin' down

No, I haven't an axe to grind in this post... 

It's just another sign that things are changing here, and there is much work to be done.  

The other night, Ralph left for his meeting at school, and several minutes later, a red pickup pulled into the driveway with youth spilling out the back and sides. They were armed with crowbars, and they meant business.  

No fear here: It was the combined youth group and their leaders from two local churches here in town - including several others (Deb, Brian, and Drew) .  In less than two hours, they had our carport skinned and ready for its final demise.  

Interesting how many of them were former students of Ralph's.  Were they eager to get back at him?

I took a few pictures, but the crew was busy, and I felt that I needed to stay a safe distance - hence some of the blurry shots.  (See the beam of wood being tossed into the dumpster?)

They had permission take their feet, hands, crowbars, and whatever else to tear down the walls...

and break down whatever they could to make room in the dumpster.

I sensed this was fun - and not just work or a service assignment.

At one point, I witnessed them hanging from the rafters and hoisting their feet through the warped plywood (formerly known as carport walls).  Very dramatic.

Now the dust has settled, the dumpster is gone, and the girls had a chance to survey the changes.

The dumpster will return on Monday, the excavator will show up, and soon there will be two holes in the ground - to prep for the garage and the new bedroom.  Very exciting.

Really, it was a great way to start our week.  Unfortunately, by mid-week, Rachel's blood sugar levels went quite low, and it was difficult to keep them within the normal range.  Rachel also showed signs of discomfort (pain?) and unusual fidgeting and verbal sounds.

We thought Rachel had stabilized by Friday enough to safely return to school, but her blood sugar levels dipped at school too.  Now I feel as though we are heading back to the beginning with what we experienced with Janneke.  We haven't seen the same seizure activity in Rachel, but she presents her symptoms differently from Janneke, so we can't compare the girls in everything.

Thankfully, Janneke has been stable and content these last few days.  She keeps us laughing with her quirky faces and unique spitting sounds.

As for Rachel, I hope to be in touch with the folks at Mac to find out how we can deal with her symptoms.  It has brought me down emotionally, and I am tired of the fear that comes with all the instability and uncertainty.  I realize that my fears are deep-rooted - and not easily chased away.

I love my girls, and as their mom, I think that I should be able to know what's wrong and how to help them.  But, time and time again, I have learned that there is no expert for my girls, and I will only exhaust myself trying to be everything to them.  I need to give them to God - and give my fear to God.

That will take a lifetime, I think.

As I mentioned before, the week started on a great note with the youth and their crowbars.  What a blessing to be reminded of our community support - of all ages.  Both Ralph and I miss those days of working with SERVE teams (SERVE Minneapolis!) and with youth groups.  It is a honour to support and be a recipient of the youth groups now as a family.

Peace for your week. Prayers are cherished for Rachel and Janneke as we do our best to care for them - and for our older two girls as they experience life being the sibling of two kids with special needs.  That  is not easy.


P.S. My sister and her family are also in the middle of some home renovations; check out nephew Caleb's blog.  I particularly appreciate my sister's words at the end of her latest post.

Wednesday, March 14, 2012

the bunny and the blog turn 3

Yep, another year has passed.  Janneke turned three years old today - and the blog will be three years old in a matter of days.

Our little bunny is 3.  I don't like to recall that day of her birth too often.  If you are curious, I did write about it on her first birthday here.  But, we'd rather reflect on and celebrate the living that has happened since that first weak breath in the labour room.

Now there's so much hair, so much personality.... still very stoic and solemn, but so inquisitive.

These last few days leading up to Janneke's birthday have been filled with demolition and preparation for our home renovations.  Ralph had Sophia alongside him, learning the art of using the hammer, and tearing out nails.  Just a few bandaids later, there was more wood piled next to the deck than on the footings.  Success - and sore muscles.

Certainly, there were plenty of sister breaks.  Janneke and Rachel watched from the windows and cheered on the progress.  We can hardly wait for an accessible deck that allows the girls to simply wheel out and join the rest of the family.

We would love help with our renovations.  If you are interested in being a part of this project, you can email Wil Bootsma.  The next number of months should be chaotic but exciting.

The weather this week has been amazing!  Though Emily has been fighting a cold, all four girls have been outside - either helping Ralph or taking in some sunshine therapy.

Sophia worked hard to make a cake for Janneke and successfully baked a Greek lemon cake, complete with buttercream icing.  Very tasty!  Rachel was a great spectator but did not care for the sound of the blender.

Tonight we celebrated with some of our family.  It was a time to be thankful for the past three years and to dream a bit about what the next year holds.  We are so thankful for the love and support our families, friends, and the greater community give to us.  We cannot journey alone; we thank God for His faithfulness and for His love shown through so many.

Peace for your week.

Tuesday, March 6, 2012

big plans

Puddleglum once said, "Life isn't all fricasseed frogs and eel pie." 

There may be dreams beyond our reach and circumstances that continue to wear us down.  Yet, the truth remains: we are not consumed by all this.  Each day still holds the opportunity to let the light shine through our brokenness or to remain in pieces on the floor.  What will we choose?

Today's sunshine certainly permeated the old soul today.  Rachel had a chance to return to school.  We had to keep her home until her sugars stabilized, and we had to formulate a new plan with the nursing agency for her continuous feeds and blood sugar issues.  She was thrilled to return after almost a month away!

I had a chance to spend some time with Janneke while Rachel went to school in the afternoon.  I thoroughly enjoyed watching Janneke play with the glass on the sliding doors.  Was she seeing her reflection?

And then she saw the camera, so she got a little goofy.  For whatever cognitive delay is present, Janneke certainly knew something about the camera.  It was great to see her act silly.

This is her "I love Robert Munsch" face.  She loves to hear him yell and holler out his infamous stories.

* * *

It's official.  Big plans are on the move....  Wil Bootsma of Blue Spruce Homes has designed changes for our home that will significantly improve the quality of care for Rachel and Janneke.  Wil has spent a number of Saturdays with us, talking through ideas, watching us and the nurses work with the girls, measuring, and dreaming about a better design for our home.  We want to continue to care for Rachel and Janneke in our home, but we need to improve the space in our home, particularly if we continue to rely on the help of nurses and personal support workers.

So, the digging will start at the end of March.

We'll be adding a room (where you see Emily and Sophia standing) that will accommodate Rachel and Janneke's beds, the tracking, their equipment -leaving space that keeps everyone safe.  We also hope to add an accessible washroom that allows the girls to be bathed safely.

In addition to the room, we will be changing the carport into a garage that will accommodate the height of the Sprinter (see the problem?), as well as allowing us to load Rachel and Janneke into the van within the garage.  Everyone will appreciate this on the colder days.

We are open to your help.  Do you feel like demolishing something in the next month?  We have to tear down the carport and the back deck.  Do you want to help with the renovations?  You are welcome to join the fun.  Contact Wil; he is more than happy to chat with you about the plans and coordinate any help you might have to offer.  We'll keep you posted as it all happens.  Let the chaos begin.

* * *

Later this afternoon, Janneke moved from the window to the couch - no reflection there, kid.

And a very tired Rachel returned from school.

She woke up later so very happy and joined Sophia for some colouring therapy.

Peace for your week.  Thank you so much for your encouragement and prayers.
We look forward to sharing the reno plans with you as they unfold.


Sunday, March 4, 2012

an update

And the music goes on and on....

At our last music therapy session, Mendelt was allowing Rachel to sense the motion with playing the notes.  Rachel was squeezing his arms and taking great delight, as evidenced with her voice and her facial expressions.  

In a break between songs, Janneke came slowly up to the piano in her walker, crossed her arms over her chest and with a stoic expression, stared down Mendelt.  The nurse, Mendelt, and I watched to see what she would do next.  She then let out a yelling sound, walked over to the piano and began to touch a key, as if to say, "Oh, you just watch what I can do!"

After a brief duet (or trio?), she walked solemnly away.  

My only regret was that I did not get a good set of photos or video.

* * *

I haven't added to our blog lately.  Honestly, there are a lot of emotions that have surfaced again in dealing with our family's circumstance.  I prefer to sort through my feelings before I blog.  That's just me.  

A few things are affecting my perspective lately.  

Every so often, the reality of what we can't do in/with our family supersedes my determination to see what we can do.  The bittersweet becomes bitter.

The other day I saw a online sign that said something like live out your dreams; follow your passions; if you don't like something, change it.  I've decided signs like that don't bring cheer when you are keenly aware of your limitations.  Signs like that almost make me bitter.

Sometimes instead of pursuing our dreams, we might need to let go of what we want and accept the new direction we are given, where the passion requires hard work and tears.  

It is hard not to be envious of what lies beyond my reach when I am parenting four children, two with complex needs - and the details of that admittance are a private sorrow.  

I am trying to see the purpose - the beauty that can be achieved - through the struggles and the tears and not get stuck on waiting for the answer to "why?".

And then when I hear of others' struggles and recently the deaths of two little ones with complex needs, I am reminded of what it means to be grounded in and living for the Creator.  He did not mean for his creation to be distracted by what is beyond reach; He created us to find joy in the simple things within our reach.  

More importantly, He sees us when we think we are unseen by others or alone (picked that up from a recent devo on Hagar).

* * *

Speaking of perspective...

I had a chance to take Emily and Sophia with Carolyn and her boys, Clay and Gavin to the Artist's Project in Toronto this past weekend.  Ralph and I have had many opportunities to tag along with Floyd and Carolyn at different art shows, but this time, it was the girls' turn.  And they were thrilled!

It was awesome to watch both Emily and Sophia's eyes go wide with excitement and surprise as we walked through the booths at the AP.  There were so many different styles and mediums; I don't think my girls quite knew what to do with all the possibilities.  They went home inspired!  They also went home with a business card from almost every booth- about 200 in total.  (I told the amused artists that perhaps my girls will be future customers, so be thankful they are collecting the cards.)

It is so hard to get kids to stand decently at a fancy art show, particularly if they are best of friends and feel comfortable around the artist in whose booth they are posing - Floyd Elzinga.

* * *

And the perspective on Rachel and Janneke's health?  Hopeful.

We continue to monitor their blood sugars as well as their behaviour while still being continuously fed. We hope for some answers eventually, but we are learning quickly that this may take longer than we thought.  We are thankful for our dietician; she's been very encouraging, finding out as much as she can from her connections within the medical world.

It has been said to us a number of times in the last few weeks that because our children do not have a known or familiar diagnosis, we fall into a gap - between resources and medical teams.  In my recent experience, it seems that a doctor or related staff person is comfortable within their own tidy box of specialty; when children like mine come their way, they would rather pass the file onto another person.

Within the context of my hospital visits, I have been told my girls' patient history and needs make them (the staff) anxious.  I have been told that I will have to keep the appointment brief because there are other patients to be seen.  I have been told that this would all be easier if our children had a diagnosis.  I have been told that I am not privy to the resources and training available regarding blood sugars because my children are not officially diabetic.  

Oh, what I would like to tell them!

This week, we are off to visit our genetics team at SickKids.  We shall see what they have to say.  Visiting with the genetics team has actually been one of our favourite hospital visits because they usually surrender two hours or more to give the whole family complete attention.  They seem to be one of the few teams that sees the importance of family-centred practice and a holistic perspective of the patient (instead of tidy little boxes of specialities).

For now, the girls are sleeping.  Soon this feed will finish and another four hour feed will start.  We are thankful for the sleep that comes intermittently - we know that God will give strength for the next day.  

May there be peace for your day - and your week.