Friday, June 29, 2012

open letter to Rachel's school staff

Dear staff at NPCC School - principal, office staff, therapists, teachers, EAs, busdrivers.... and everyone else,
Thank you.  Thank you for a wonderful year with our daughter Rachel.  We love how you love our Rachel.  She is not hard to love, this is true, but we know that you do genuinely care for her - and we appreciate that sincerity.  We love how you greet her in the hallways, calling her by name and giving her eye contact.  She loves the eye contact, and we believe she knows her name.
Thank you for using respectful phrases such as when you are changing her diaper, you simply tell me that “she is in the washroom at the moment.”  
Thank you for your kindness with our whole family.  You welcome Janneke, even when she comes barreling through the foyer in her walker, intent on exploring every open door.  Thank you for making my older girls feel welcome.  Just because they have two sisters who are severely disabled does not make them instantly comfortable with all disabilities.  You go out of your way to make them feel relaxed.
Most importantly, you have taught me to love Rachel even more so. I now watch her more closely, looking for signs of understanding, and watch for cues that signal to me her desires.  It is difficult to verbalize, but sometimes I find that the sorrow, sleep deprivation, envy and self-pity that comes with parenting a child with significant special needs clouds my own perspective on what Rachel can do and who Rachel is.  
You are able to love and celebrate Rachel without that extra burden.  I envy that freedom in loving her.  I have been reminded over and over by your work with Rachel that she is truly a joy, and though I might want her to remain at NPCC School always, you are just one stage in her life.  Just as a caterpillar-soon-to-be-butterfly does not remain within the cocoon, Rachel too will at some point fly from NPCC School.  In the meantime, we will cherish your time and energy and share with others how thankful we are.
We had a great time at the annual school picnic this week.  Here’s a photo of Janneke running down the path; she also had a great time with all the kids.

Emily and Sophia loved being around the kids from school.  In some ways, it was refreshing for them to see the variety of needs and sense the “new normal” other families have like we do.  Their hearts were also affected by your work this year.  
I hope you have a rest-filled summer.  We look forward to sending Rachel to you this fall, and we can only wonder what she will accomplish and do with you. Yes, we know you are not perfect - no one is.  

But, the joy you share reminds me of the Grace that we have been given to live victoriously, in our brokenness and with our disabilities.
Thanks again, staff at NPCC School.
Peace for your week.

end of the year thoughts

Today was Rachel’s last day of her first year at NPCC School. Tonight, I find myself reflecting on what I witnessed this week.  Yesterday, the NPCC School held their annual send-off ceremony.  Similar to how a typical school has a graduation ceremony, the NPCC School recognizes those students who are leaving.
What makes the send-off ceremony at NPCC School different is related to the fact that many NPCC School students are graduating from just one year - and some students are returning for another year.  All are recognized and celebrated at the annual send-off ceremony.  

The vision of the school is to prepare the children for mainstream classrooms.  In addition to those who attend for one or two years, there are some students who remain for several years and others who go back and forth over the years between mainstream and NPCC. 
Yesterday, the smiles on the students’ faces were awesome and the joy was contagious.
But... I had bittersweet feelings as I stood among the parents and therapists. 
You see, a place like NPCC School feels safe to someone like me with children like Rachel and Janneke.  
As I watched some of the students receive the applause of those gathered yesterday, I wondered how their new schools, their new classmates, and their new teachers would treat them.  
Would the disability cloud their perspective, making it difficult to see the person?
Sometimes, we fool ourselves thinking that we are normal, and people with disabilities are not.
Truthfully, no one is perfect - and, as Ian Brown put it, disability terrifies us.  It reminds us of our own shortcomings, our own (hidden) disabilities, our impending death and lack of control in a control-freaking culture.
I’d like to think there is more acceptance and kindness in our culture today, specifically related to children with special needs.  Sadly, I can recall many inappropriate comments and jokes that floated through the hallways and schools in my childhood, and I would like to think we’ve changed since.  
I suppose that’s why I love a place like NPCC School.  All abilities are embraced and celebrated - verbal, non-verbal, mobile, immobile, drooling, diapers....  The children are embraced and celebrated for who they are, not who they were supposed to be or what they should be. 

For Rachel, she is returning to NPCC School as part of the Total Communication Class - full day, every day.  We were prepared to begin integrating her into Beacon’s program, but if she has the opportunity to spend more time with therapists and staff at the centre school, then we will wait with our Beacon plans.
So, on this evening after all the graduations, I want to share with you an open letter:  see next post


Tuesday, June 26, 2012

sailing - and a new deck!

Another sailing adventure with the Easter Seals Regatta (at the Port Dalhousie Yacht Club) was thoroughly enjoyed by the family.  This time, we asked Christina to join us, to give us an extra set of hands - and not surprisingly, she was eager to help.

John and Margaret were wonderful hosts/captains.  They were joined by their son Simon, and we were treated royally.  They have a heart for helping, and we are thankful for the ways they give in our community.

John allowed Emily and co-captain Rachel to take the wheel (helm?) for a bit.  Nothing like trying to steer a large boat among five huge lake freighters, anchored just outside the Welland Canal.

Having our family contained on the boat with someone else providing treats and Christina lending a hand, we could take turns being with each of the girls.  Makes us want to find a good houseboat holiday!

I am very proud of my two oldest girls. Watching them grow and change again this past school year, I can only wonder what God has planned for them.  People (intending to be kind) tell me that my girls are going to be extra compassionate because they are sisters to children with special needs.  Yes, they have to be flexible and patient with unplanned changes in our family.  But, I suspect kids in families with more than two children also have to be flexible and patient.  

The concern is more that I don't want Rachel and Janneke to define Emily and Sophia - specifically, I don't want the younger girls' disability to supersede the individual identities and gifts of Emily and of Sophia.  As parents, we are cautious with how much we expect of our girls, keeping in mind that we are going to make mistakes.  We love our children, and we continuously ask God to give us the grace and wisdom as we do our best to guide and nurture them. Yep, I love those girls!

We look forward to another sailing adventure next year - a great day for all of us.

* * *

Thanks again, Deb and Nancy, for all the baked treats we can serve the volunteers on Saturday!  This seems to motivate them... until lunch is served at noon... and then beers and other cold drinks mid-afternoon.

We had another group of committed folks show up Saturday morning to build the deck.  It was a quick couple of hours -and we were on the deck for lunch!  (If you want to be involved in any future work with the house, email Wil or our family.)

Here is Janneke, anticipating the first few steps on the deck. She was not sure....

but she came around quickly, chirping and smiling as she cruised the boards. 

Rachel is in her final week of school.  She received the annual photo yearbook from NPCC School, and she loved looking at all the photos of her friends.  It was awesome to see her lean in and recognize faces.  There are some fun things planned by the school for the last week, and we hope to celebrate with her. 

As an afterthought:  We had a chance to hear Ian Brown speak last week in an intimate setting at Holland-Bloorview.  It was awesome.  I wanted to share some of that evening in a post, but I am still gathering my thoughts...  It seems sleep deprivation from the last two weeks has made me forget some other things, so I am working through my list to-do list very slowly.  I suppose that is better than not at all. :)

Peace for your week.

Saturday, June 23, 2012

rites of passage

Rites of passage.  'Tis the season.

Rachel attended the SK graduation at Beacon as the special guest of the class.  She has been their special friend for two years, and our plan has been to include her with the Beacon class for as long as possible.  She has been invited to attend the NPCC School for grade 1 - full day, every day.  This program will emphasize communication, for which we are thrilled.  NPCC School's philosophy works on helping their students transition into mainstream classes as soon as possible.  We are so thankful for the extra time and energy spent on Rachel to prepare for the future idea of attending Beacon.  In the meantime, we will continue to establish friendships with the (now graduated) SK class.

I got a kick out of this photo (above).  Wiping the drool while maintaining composure for the photo.  Too funny.

We had a chance to visit with the JK and SK classes at Happy Rolph's (small animal park).  It was a treat to see all the kids greet Rachel, fight over pushing her in her chair and point out the animals to her.  She is loved.

Yes, I cannot pretend there is no sadness in watching Rachel's peers grow and change so much - when she is progressing at her own speed.  I try not to dwell on those feelings... there is still much joy to behold.

* * *
The renovations continue to progress.  Last Saturday, Janneke watched Henry dig out the holes to prepare for the deck footings.  She loves the front row seating.

Here's view from the back where you can see a spot perfect for the covered deck.  This will also give our girls a chance to sit outside without any awkward lifting or moving around.  The deck will be level with the sliding doors of our existing home and the double doors of their bedroom.

Do you like to paint? Are you able to help with a Saturday meal? We'd love the help.  It is daunting to balance the renovations between contracted labour and volunteer labour, but we've been amazed at the progress so far.  We would love more help.  You can email Wil or contact our family email. (Click his name or the word family.)

* * *
We took the girls to watch the annual Kiwanis Duck Race.  There are approx. 10,000 rubber ducks that race annually at Port Dalhousie, and it is amusing to watch.  

Earlier this month, I found Janneke reading the newspaper comics.  That girl continues to surprise us!

And yes, it is possible to fall asleep at the piano.  Poor kid.  At the time, I had no idea she was fighting the oncomings of a nasty cold.

It's been another longish week of little sleep and lots of time up at night, dealing with the girls' colds.  Rachel's cold descended to her lungs, so she started antibiotics.  Janneke seems to be dealing with all the stuff without needing the extra meds.  She does get quite upset with all congestion and is scared when she can't clear her throat.  Lots of chest physio and inhalers....

Em and Soph finished with school this Friday, and Rachel will finish her schooling next Friday.  We have enjoyed all the end-of-the-year school fun, including Emily's class sleepover at the school!  We started our summer list (things we want to do), recognizing that our big driving adventure originally planned may have to be short local trips until both Rachel and Janneke are comfortable with longer sitting spells in their chairs. 

Have a good weekend.

Sunday, June 10, 2012

a garage door and a gold medal

Janneke has developed a certain liking for mugs.  Not plastic - but real coffee mugs.  The other day, I was holding her on my lap and drinking my coffee.  I know, not a safe practice, but usually Rachel and Janneke don't have that typical curiosity.  Usually.  This time, I felt Janneke's hand slide over my lips and into my mug as I brought it to my mouth.  Now when she is sitting somewhere safe, we give her an empty mug, and she is thrilled.  

Janneke has also become more bold in her walker outside.  On Friday, the nurse watched her move after the neighbourhood cat.  Needless to say, the cat took one look at the walker and bolted.  

More new things...

On Saturday, the garage door was installed.  That's a 10 foot clearance!

Both new roofs are shingled...

and the soon-to-be-accessible washroom and nurse workstation have all the necessary plumbing parts, thanks to neighbour Bill. (That's not Bill in this photo - but another equally dedicated face around here.)

I have no problem admitting that this looks like one complicated puzzle I can't solve.

I was impressed with Bill's agility to work under and on our floors, connecting all the right pieces.

* * *

Rachel and I had a chance to visit with our SK friends.  It was a treat to be with the kids after a couple of weeks away.  They love to be with Rachel.

I love how they love Rachel, wiping her drool without prompting.

While the girls in the class tend to "mother" Rachel, the boys love to share their work with her.  Several boys asked that Rachel come to watch them paint their favourite part of SK.

Later on Friday, we visited with our friend Tanja.  It had also been a few weeks since we stopped in.  Tanja gives Rachel wonderful massages and keeps a close eye on her scoliosis.  Rachel loves her visits!

This weekend, we had a chance to go out for a walk at Niagara-on-the-Lake.  We stared at the USA for a few minutes on our walk.  Here, the girls are across the river from Fort Niagara, NY.  (The area is currently commemorating the War of 1812.)

One of the blessings with continuous tube feedings for our girls is that we can go out for a walk or an outing and not have to stop and find a place to heat and clean up for the next feed so frequently.  With a continuous feed, we are changing the pumps every four hours.  That makes for a nice four hour outing.      

Janneke finished the weekend with a cuddle from a champion.  Our niece Alanna and her soccer team at SDCH won the gold medal at OFSAA (provincial championships) yesterday.  We were thrilled for the whole team, but Janneke seemed somewhat indifferent to the whole business.  Congrats, girls!

Tomorrow is another busy day at Mac.  The girls are going in for a couple of appointments, thankfully arranged on the same day.  We are visiting with a couple of people to discuss how to better manage the girls' blood sugars, and the girls have some bloodwork tests to help further understand the unstable blood sugar levels.  We continue to have trouble keeping the levels stable, and no one is certain on the cause or good long-term management.  Maybe tomorrow will bring some clarity?

Peace for your week.

Sunday, June 3, 2012

new shapes and ideas

I took Janneke to the lake last week.  I wanted to see if she would put weight on her feet while standing in the sand.  She wouldn't.  In fact, she kept her feet on my legs as much as possible.  Funny how her face showed little to no reaction, but her body language spoke loud and clear - "this sand feels weird!"

Thanks to Nellie and Elly in the last few days, I have some flowers, a tomato plant, and a place to grow lettuce - all on my front porch since the rest of our yard is under construction.  And a thank you to the letters and gifts of encouragement with our renovations.  How sweet is the love of our extended community!

Check out the renovations so far:

Here's the door and mudroom entrance from the garage.

These doors lead from the garage to the backyard ramp and the girls' new room.

Um, this is NOT an accessible ramp.  But it works for the rest of us who are working through the mud.

And here is the doorway to the room.  The ramp will extend from the garage to the deck, and these doors will be at the deck height.  This will allow for such fun as Janneke wheeling outdoors in her walker from her room to the backyard.

This was our blue room and small bathroom.  If I took this picture from this angle three months ago, I would be standing on the trampoline in our backyard, looking through the windows of the blue room.   Now you are looking at the framing for the large shower/bathroom on the right and the workstation/kitchenette on the right.

* * *

Rachel is speechless at the demolition of the old bathroom. She is a great supervisor.

Whenever the workers are not in our new space, we let Janneke go free.  She makes a beeline for the windows.  We are thrilled with the low position of the windows; Janneke is so happy to be able to look right outdoors.  Hopefully, the neighbours are okay with this too.

* * *

This past Saturday, our home was crawling with electricians, thanks to JCL Electric.  They started the work for the potlights (ha!) in our new living space and the much needed plugs and switches.

Alongside the electricians, we saw a few familiar faces from past Saturdays.  Did I mention the guys were everywhere in the house?

The wall was cut to allow for the windows to be fitted in the basement section below Rachel and Janneke's room.

Ralph and I noticed Emily and Sophia were nowhere to be seen when the guys showed up Saturday morning.  We soon discovered them in their hideout under the stairs, one place that didn't need extra electrical work.

We had to move Rachel and Janneke out of their room for a bit, partly because Rachel is very sensitive to all the sounds.  With two bed rails and extra pillows, they laid comfortably on our bed.

Late Saturday afternoon, we had a chance to witness the wedding vows of Kirsten and James.  Kirsten started with our family as our respite worker and later continued as one of our VON (nurses). She is no longer with our home because she works at Mac; we miss her!  James was a former student of Ralph's, so it was an honour to attend the ceremony.  As soon as we greeted Kirsten in line, Janneke gave out a loud holler of joy.  It was as if she recognized Kirsten - so awesome for us to hear her response!

Back at home, we continue to adjust to the changes.  There's a lot of dust, noise, extra people, and more dust.  Yet, there are perks: We are currently enjoying an indoor soccer room.  (This will either be a bedroom or storage when everything else is done.)

And we know that when everything is complete, our home will allow us to care for our girls into adulthood safely, enhancing everyone's quality of life.

Life will never be perfect or easy - we live in a broken world.  Yes, we know that life is a gift and our girls (all four of them) are also gifts, but there are days when it is difficult to be thankful.

It encourages the soul, particularly on those darker days, to know we serve God whose arms span beyond our anger, sorrow, and anxiety. 

Cheers to summer and more new experiences.

Peace for your week.