Tuesday, May 27, 2014

and the play goes on

It's hammock season again.  Time to put the feet up.

Though all four kids have been well these past two weeks, my body decided to give in to a ugly cold that set up camp without permission.  It left a nasty cough that has finally checked out, thanks to an inhaler and lots of essential oils.

We continue with appointments for Rachel and Janneke at Mac and soon Chedoke to monitor the girls ins and outs.  The most pressing one as of late is the concern with Rachel's feet.  Because she can't tell us everything and because her feet are so uniquely formed, we have to take care to watch how her feet handle the standing frame and her AFOs. We know her feet will never been "normal" but we want to protect her feet from as much discomfort as possible.

Yesterday, we had a chance to celebrate Em and Soph's physical abilities with their school's track and field day.  It is a challenge, helping your kids understand their strengths and weaknesses, but we had good conversations over supper about the day's events - and how attitude is an enormous part of all of it.  It is good for me to listen to the girls because sometimes I am too quick to think, "I am just thrilled that you are so independent and can jump, never mind achieve a first or second standard." I need to understand that Em and Soph have their own personal goals too.

As we celebrate Em and Soph's achievements and talk through their struggles, we are keenly aware of the mini milestones Rachel and Janneke make - and those can feel worlds apart from track and field achievements.

Janneke spent some time cheering me on while I edged the flower weed bed last night.  She spent most of her time listening to the sounds of the lawn mower, birds, and squirrels - and finding the lumpy ground under Aunt Jean's quilt.

Earlier this month, Em took this photo of Janneke and me as we practiced walking outside.  She now wears her feed pump on her back, and she is becoming quite confident in her steps.  She is not independently walking, and she doesn't have the spatial awareness with falling.  But... this is an exciting achievement for our little Janny.

And now we look ahead to more hammock time, time to enjoy the warmer weather and fend off the mosquitoes.  We also look ahead with interest to the upcoming provincial elections, particularly as it relates to the care we need for Rachel and Janneke.  It has been said often that our character as a province and as a country is determined by how we care for the most vulnerable of our population.  A balance of support for the vulnerable and empowerment for those needing work and already working can't be easy to manage and find.  We hope the political parties are listening to the needs of the people and worrying less about knocking down the rivals.  Become an informed voter. What does your contribution (and this is not about money) to your community, to your province, look like? If you are interested, there is a great elections tool kit created by the Children's Treatment Network in Richmond Hill as it pertains to families living with special needs.

peace for your week,

Wednesday, May 21, 2014

they ain't heavy

As I watched the caring hands load my girls onto the school bus this morning, a couple of things came to mind:

I am so thankful for the days when my kids are well enough to attend their day school.  The interaction and therapy they receive each day at the school is more than I can give them at home on my own.  I also crave that quiet spot at 8:30 A.M. when I can catch my breath and a coffee before taking on the rest of the day. Caring for kids with special needs means your days and nights are almost never routine, so when there is a bit of a pattern - like an 8:30 moment of stillness, you savour it.

I am saddened by the story that has gone viral regarding comments and concerns over a group home in the city of Etobicoke.  The hurtful comments are hard to read, but I am also sad that we spend so much time shaming.  It's easier to pop a response on Twitter than it is to ask how you can tangibly help.  Once again, the social network and media outlets are excited to pick up their pitchforks and chase the Ford family.  Once again, a high profile position highlights an ignorance - that needs more education and less finger-pointing.

The beauty in this viral mayhem is that people are talking.  Perhaps this messy story can change the ignorance of the greater masses - and help solve legitimate problems that exist.  My friend Louise wrote a response to this muddle that is worth reading.  There are stories out there.  Each of the kids involved has a story. Their families have stories.  Those neighbours have stories.  And Mr. Ford has a story.  Are we listening?  Do we care?

I hope this latest local drama sparks a renewed sense of energy for awareness and support for our more vulnerable population and for those who work to provide their care (parents, families, nurses, PSWs, etc.).  There are parents who feel completely lost and helpless to care for their children, and they take to drastic measures.

I hope these stories of ignorance and stories of helplessness are heard by the politicians who want to win the upcoming election.  When that politician knocks on your door or phones you, ask them their perspective.

Who will carry my kids when I can't?  More than ever, there is a need for support - for those who need care and those who provide the care.  And when ignorance raises its ugly head like a braying donkey, we've got to turn that into a call for compassion and education.  Stepping out of our comfort zones, letting go of the not-in-my-backyard attitude, learning from our mistakes... all of this builds our village.

peace... really, I mean it.  peace to you today.  May your words, deeds, and thoughts today reflect a love and restorative justice that gains momentum for tomorrow.


Saturday, May 17, 2014

another Happy Birthday

Nothing says Saturday like a fort in the living room.  You are never too old to fort.  Yes, I made a new verb. 

Rachel and Janneke took turns hanging out in the fort while the other went for a walk with the nurse.  That's a Saturday morning well spent.  I can only hope Em and Soph will continue to pull their sisters into their fun when they can.  My favourite question this morning was, "Mom, can we put Janneke and Rachel in the fort?"  

I am thankful I was raised to appreciate forts - both in the living room and in the snow.  Speaking of the champion of snowfort building, meet my dad.   He's known as Pastor Bernie, Rev. DeJonge, Dominie, Uncle Hank, Hank, Bernie, Grandpa - and to me, Dad.  On Sunday, May 18, he will celebrate 65 years!

Happy Birthday, Dad.  Lots of years, lots of memories.

Thanks for being a grandpa who loves to be with his grandkids, no matter the space or time.

Dad, you have a lot of grandkids to make memories with, so we are thankful for the times when we get to be with you.  One recent memory of appreciation comes from December of last year: Thank you for knowing how much Em and Soph needed to be hugged by you when Opa died, and thank you for coming over to learn how to play Opa's favourite game with the girls.

* * * * * * * 
It's a quiet night on a long weekend. (Canadians have lots of holiday weekends, eh?)  I hope Dad has a super day - and I hope you all have an enjoyable weekend.


As a side note, I think that May 18, 1996 was also a decent birthday for my dad, one that he may have sighed with relief.  I graduated from university (Calvin College) that day and wore a note to him on my mortar board hat.

Sunday, May 11, 2014

birthday greetings

This lady turned 8 years old last Sunday!  We think she enjoyed her day? We are never quite sure what she would prefer.  Janneke's birthday passed quietly again in March, with some family dropping in, but, we've often sensed for Rachel's birthday, she wants the company of other kids. This year, we weren't so sure that's the case, so we intentionally invited just a few familiar faces for her and kept our fun limited to a few hours.  (Yes, that is face paint on Emily and Rachel.)  I created a video from Rachel's day that I will post later; I have to remind myself about how to post on YouTube.

She was quite serious with everyone singing to her and giving her greetings.  It seemed Rachel was most comfortable laying in her bed with Zekijah, Leah, or her cousins while watching Sesame Street and other funny videos.

This past weekend, we slipped away for a short visit to a cottage in Grey County with my side of the family.  We gathered together to celebrate my dad's upcoming 65th birthday.  It was a great time of play, eating, conversation, and laughter.  There wasn't a ton of sleep since Rachel and Janneke do not adjust well when they have to sleep in a new spot, but we expected as much. We were thankful that niece Katelyn Pot was able to join us to help out with the girls; I think some of my nieces assume she is just another aunt.

Em and Soph were not happy to leave.  They loved exploring the Styx River, climbing trees, and enjoying time with their cousins. Janneke seemed pretty happy with the whole business, sitting on the swingset with the other 5 year olds, and laughing at the kids playing.  We wonder if Janneke's the one who will want a busy birthday party next year.  Rachel did not mind being with family, but she preferred to be in her bed, quietly resting.  We are watching with interest this change in both girls.  



We are thankful for the gift of Rachel and her 8 years, and we are thankful for our family and friends.  Good things with which to close a Sunday night.

peace for your week,

Friday, May 2, 2014

art and musings by Janneke

Janneke here.  Mom calls this my Mona Lisa moment - that half smile with my art.  Today was the open art gallery for our school.  My featured piece, a fusion of fall colours, was inspired by the jaunts along the spit at Port Weller.

I also thought the blue flowers were pretty cool.  Our friends at Northland Floral donated potted flowers for the Radiothon and for our art gallery.  I had a lot of fun showing off my steps last night at the Radiothon for the Children's Centre.

Mom snuck a peek at Rachel's work.  Rachel's sick again. Mom's tired of us getting sick so much. It's been five weeks of one or both of us dealing with something. Now she's trying doTerra oils, and we all smell like cloves and licorice.  Our teachers think that's pretty cool.

My friend Parker came to see my art.  I wasn't sure what to say - so tongue-tied even though we've been friends for almost two years.

The best I could offer was my leg.  He decided to give me a little love by touching my foot.  
He's pretty cool.

I love art.

Have a good day... soon Rachel has her birthday!  Mom's hoping everyone is healthy by Sunday.

lil' jpot and spot