Sunday, August 28, 2011

what a weekend!

Wow. What a weekend. We are overwhelmed, humbled, and so very grateful for the outpouring of support, love, and encouragement for our family.

Friday night was the Wine and Cheese Soiree at Club Roma in St. Catharines. Over 200 people came to share wine and cheese (of course), peruse the silent auction and enjoy the music of Doyles Point and Ninth Street Swingers.

Doyles Point (named after the place in P.E.I.) includes two familiar faces - Sandi, on of our first midwives when we moved to Niagara in 2003, and our family doctor, Dr. Brian Kerley. A special thanks to them for their beautiful sound, as well as their time (a late night!) and energy.

Ninth Street Swingers included all familiar faces - members of our church (Jubilee Fellowship Christian Reformed). They too created beautiful music together, and the two bands complemented each other in a way that was not competitive or radically different. Music to our ears.

Equally entertaining were the antics of Floyd and Brenda who announced the evening as well as Special K (Klaas Hoekstra) who provided late night dance music.

We enjoyed being with so many familiar faces, but we also loved meeting some new people. One older gentleman walked in with a donation only because he had read the article in the newspaper and wanted to give.

The entire evening felt a bit like a big party or a wedding reception. In fact, there was a group there from the Ancaster area to celebrate a 30th birthday. Happy Birthday, Krista!

Ralph and I had a chance to speak with everyone at once; I guess this photo was taken while we were talking because everyone looks so very serious. A special thanks to the helping hands that decorated the hall, helped with the reception area and silent auction, worked with the Club Roma staff on managing the food, and helped with the sound system.

Tim and Jess Brand got a peek at the Staal jersey which is being raffled off until the celebration at Agape Valley in September. Click this link for more details.

Saturday was a full day that started with final soccer games for both Sophia and Emily. It was a great time to be with the teams, and we were thankful for nurse Bridget's help with Rachel and Janneke.

By 3:30, we were ready for the Pork Roast. Ashley came along to help us, so the whole family could attend. We were joined by 300 people at the Harvey and Carol Pot family farm in Smithville. It was great to reconnect with family and friends. A special thanks to the many helping hands in roasting two pigs and tons of sausages, preparing salads, desserts, games, organizing a "penny sale" table, running the raffle for the Staal jersey, providing drinks and helping with parking.

The Veldstra train was by far the most popular event for the day for the kids. The train meandered or zipped (depending on who was driving) through the farm, keeping the kids entertained and away from playing in the tall corn.

We love hearing the stories of kids helping kids. Whether it was the deHaan girls selling lemonade for our family or this GEM (photo below) asking for no birthday gifts but money for our family instead, we are encouraged - and we hope those children will lead others into a compassionate way of living.

It is challenging to adequately express thanks over and over when words seem to fall short. We will continue to live thankfully - a lifetime of being thankful. We are moved sometimes to tears with the financial gifts. It is emotional to be the recipient.

Both nights we shared some words - ours and words taken from Jean Vanier (book Becoming Human): We all have a need to belong. In belonging, we become vulnerable and we acknowledge that all of us are disabled. We then let go of the shell of self-preservation and isolation that protects us but also isolates us.

We belong to a common broken humanity.

When we share with each other and carry each other, we demonstrate God's grace - his divine love and protection - and we testify to the faithfulness of God's promises.

We appreciate and are forever grateful for your support. This dream of our van and our home modifications will be realized soon. That is amazing.

As the final numbers are still being calculated, the amount raised over the weekend exceeds $20,000. That brings our total over $100,000. We are absolutely thrilled.

The money that is raised will buy the van and help us with our home modifications. Whatever is not initially used will be stored in the girls' RDSPs for future needs.

* * * *

Looking ahead to September, there are two more events as part of our Appeal for Wheels. There is a celebratory picnic planned at Agape Valley on September 17, and there will be a wonderful evening in Hamilton on September 23 with Southern-style food, story-telling, and bluegrass/jazz music. Click this link for more information.

Today was a day of rest. Both Rachel and Janneke napped in the afternoon, and they were in cheery moods after their rest. Rachel was discovered almost upside down in her bed, and I noticed we were falling behind in laundry - Janneke wore her sister's pants (at least her feet kept warm).

We had the girls outside for a swing in the afternoon. It was good to watch them swing and smile while reflecting on the amazing journey we've experienced these last few months. It is truly overwhelming to receive so much financial support. We ask that you continue to remember our family in your prayers because ultimately your prayers strengthen us in a way that money cannot.

May you image forth His love to others in your week. Thank you. If you don't receive a thank-you card at one of our events or in the mail, please email the appealforwheels address.


P.S. Thank you, Ashley and Christina, for helping us with our girls this weekend. That made our attendance much less stress-filled.

P.P.S. The cupcakes were made by SweetArt by Elizabeth - yummy and beautifully-decorated.

Wednesday, August 24, 2011

cool jumping and cool jersey

There is something about watching your kids face their fears that emboldens us. I loved watching, albeit from afar, Emily and Sophia jump off the Kincardine pier with their dad and cousins. (I am afraid of heights!) Thanks, Mariah, for your photos of the pier jumping.

As said in the previous post, the week away was good. I should mention that Debbie and her friends at Penny's Laundromat in Kincardine were once again helpful with us and our bibs. I was able to pack over 100 bibs, so we did not have to launder every day (three visits in eight days). With the heat and no a/c, the girls did drool more, so I was very thankful for the help with washing and folding.

Janneke also gave us a laugh one afternoon when we put her in the walker outside the cabin. She made a beeline for Ashley's car, and she stood alongside, stroking the side. She paid no attention to the other vehicles; she must have seen her reflection or preferred to only touch a clean car. She is more and more drawn to vinyl and other types of surfaces - the things we learn!

Rachel has always been tactile selective - in fact, in her first few year, she wouldn't touch anything without cringing. Now she loves to feel our hands, and she even explored the sand at the water's edge. She made a constant singsong sound we called her beach song.

Being with cousins of all sizes is always a treat, but I am reminded of Rachel and Janneke's disabilities when I see the little ones jumping, eating, and running around. It doesn't make me so bitter or sad anymore - I guess it's just a quiet reminder in my heart that things will always be different. I love that Em and Soph love their cousins, and they look forward to carrying them, playing with them, and being with them.

This past week, our local city paper featured an article on our family. We had been contacted by a reporter who then took great care and time to spend a morning with our family. We were admittedly a bit nervous about being interviewed because it is a reminder that our life is not so private - and the last thing we want to do is create some kind of image of our family apart from reality.

Much thanks to Cheryl Clock for her story, and if you would like to read it, click this link. There are also about 30 photos alongside the article.

Only a few days until the weekend of fun! We look forward to seeing many of you at Club Roma and the Pork Roast. We are also thankful to Eric Staal for donating a hockey jersey signed by 18 members of his All Star Team 2011. There are raffle tickets available for this great jersey, and you can learn more by clicking this link.

Peace for your week.

Oh - another photo from our holiday - A great way to relax at the cabin: pjs all morning, Calvin and Hobbes, and older cousins who create more fun.

Saturday, August 20, 2011

a holiday

Janneke and her aunt Joanne (Janneke) at the last sunset

We were blessed with a week holiday in Point Clark, and it was good. We were able to divide our time between Sara's side of the family (first 3 days) and Ralph's side of the family (remaining 5 days). Memories were made playing with little cousins and big cousins, organizing a play, s'mores and stories around the campfire, golf games, beach time, sand castles, pier jumping (first time this year for Em and Soph!), ice cream, teeter totters, sleeping under the stars on the trampoline, ladder ball and Kubb tournaments, and so much more.

It was a holiday.

Obviously, most of the busy fun was enjoyed more by Em and Soph, but Rachel and Janneke did well with their week away from home. One of our respite workers, Ashley, came along, and she helped us manage their care and feeds, so we could enjoy the time away too. Both Rachel and Janneke enjoyed being with so many people, but they were equally stimulated by the time outdoors- on the sand, laying under the birch trees, and listening to the birds.

Janneke made more sounds than we've heard in a long time, and we marvelled at her good mood. Rachel was also happy throughout it all, and we loved the sounds she made when she sat at the water's edge. We are thankful they can sit for a bit with assistance or someone behind them, so they can take in the action too.

lots of Pots - saying a special hi to Oma and Opa

Now we are back to the normalcy of home, and we are thankful that our nursing care will resume tomorrow. We are excited and nervous about the upcoming weekend - both the Wine and Cheese event and the Pork Roast are happening. Don't forget to RSVP; this helps those who are planning. You can also email us:

We are so thankful for our family and friends who asked us if they could raise funds for our van and our home modifications. We are amazed and humbled by the outpouring of support, and we look forward to sharing the story with all with you.

Have a great week, and we look forward to seeing many of you this weekend!


Thanks again, Ashley, for helping us make our holiday a holiday. Did you know that part of your work would include participating in the ladder ball and Kubb tournaments? : )

Thursday, August 4, 2011

beetles and buses

formula, diapers, more formula, more diapers...

I sometimes wonder at the difference in parenting (especially with reference to feeding and diapering) in my ten years of being a mom. In the beginning, I was adamant that I use homemade baby food whenever possible and use cloth diapers with equal determination. How times have changed.

So, until more eco-friendly methods are invented of caring for kids with special needs, we will try to off-set our ecological footprint in other ways.

Such as making stilts out of formula cans. Not to mention the 30 pencil holders that Grade 2 made as gifts this year.

We can also introduce our kids to mass transit and spend time learning in the halls of the Faculty of Forestry at U of T. Today's adventures included many forms of transportation - and both Emily and Sophia asked many questions about global warming, effects of pollution, and carbon dioxide. I definitely need to read more to accurately answer their questions.

from a double-decker GO bus to the GO train

I took Emily and Sophia on an adventure today that brought us to Toronto to meet up with my sister Rhoda and our nephew Caleb. We learned all about Rhoda's work with beetles at the university. The kids loved learning how to use a microscope, and Rhoda regretted not bringing an onion to show them what a cell is (the good ole' days of science class). We also learned that our beloved Tree of Heaven is an invasive species, not so angelic as we thought!

And check out the amazing mini-forest created amidst many tall buildings in the courtyard at the university. You would never know that you were literally surrounded by brick and concrete.

We traveled with mass transit in several ways: bus (double-decker!), train, subway, streetcar. Sure, to us, it was a novelty, and for everyone else riding, it was probably a necessity. Still, I hope the idea of sharing a streetcar with a dozen women chattering away in Mandarin will stick in their minds as one great way to travel -and experience community.

On a completely different note, I really want to share an article that came my way this week. I have really enjoyed Ian Brown's writings, and this article is definitely worth sharing and reading. He responds to the comment: "I don't know how you do it." (It refers to raising a child with special needs.) I love his response; here's a taste:

Walker [his son] is 14, looks about 10, and has the mental function of someone who is about two or three. It looks like he always will. He can’t speak, and because he can’t speak, I don’t know how well he sees or hears, or why he hits his head again and again if I let him, or where he’s in pain. He can’t swallow, so he has to be fed with a tube, and he can’t figure out the routine of going to the bathroom, so he has to wear a diaper. But those are easy problems to fix, albeit time consuming and sometimes a little dreary: a diaper is a diaper, and sometimes it is full and needs to be changed.

What I found more upsetting, practically from the day Walker was born, was a bigger and more unknowable question: did he have an inner life? Did he have any intentions, and therefore did his life have any purpose, any meaning?

I couldn’t tell, and so I spent a lot of time looking for some way of justifying his life, lived as it is in semi-darkness. I found proof again and again, if only I remembered to look in the right places. Walker’s life is not a success measured on any conventional scale of human success: he is never going to earn his living, never mind an income big enough to buy a fancy retirement home for his Mum and Dad; he is not going to go to Harvard or anywhere else that will make his parents proud; he is never going to invent a faster, easier way for people to spend money on the internet. The value of his life, if it has a value, will have to reside in his life, per se, in the sheer fact of his existence.

Please check the link for the essay in its entirety. It is worth reading and discussing.

We are thankful for each day with our girls. Rachel continues to make us laugh with her animated facial expressions, and Janneke, though more stoic in personality, makes her little chirping sounds whenever we take her swimming. She loves to move. Our girls remind us that life is not just about improving your ecological footprint; it is also about showcasing God's handprint - in all things and in all ways.

I hope this weekend is a good one for you. Be gentle with this earth and enjoy each other's company. Take some time to trace yourself with sidewalk chalk.