Saturday, July 30, 2011

in His shade



This was the scene on our back deck the other day. Em and Soph are aspiring artists - their handiwork covers their bedroom walls, and their little sisters love to be wherever they are. It is a pain to carry all the equipment down the steps to the deck from the house, but to see all of them together, busy in the sunshine, is great.



All this happened in the shade of our favourite tree - Tree of Heaven - which has grown each year to cover more and more of the deck. Aptly named, it reminds of us of the shade of our Father's hand.


Today was a great day. One of those days where all good things happen. Christina came to watch Rachel and Janneke, so Ralph and I could take Em and Soph for a hike in the Short Hills Provincial Park. Sometimes, when we are with the four of us, I feel as if we are caught between two families - with two daughters or with four daughters. I am so thankful that Em and Soph miss their sisters when we are apart. They love being able to do "normal" things - so they say, but they also reflect in passing with comments such as, "I don't think Rachel's chair would fit on this trail" or "Janneke would love to touch the moss and flowers."

Some time ago, I came across a number of documentaries that came from people just a bit older than me who discovered in their adulthood that they actually had a sibling they never knew. A disabled sibling who had been sent away - because that is what you did back then. Fascinating stories that evoke a range of emotions. Check out this website: The Teachings of Jon.

I am so thankful for the ability and means to care for all four girls in our home. Even if we take a few hours away from Rachel and Janneke, everyone is excited to go home and see them again. We are also blessed with loving respite workers and nurses who love them a lot.


Speaking of being loved and cared for, we continue to be humbled by the efforts with fundraising for our wheelchair-accessible van. This past week, Sarah V made cookies and sold them to people who stopped in to buy Norwex cleaning supplies from her mom Lisa. The other day, my neighbour Tracy told me her kids are collecting their loose change for our van. We are so loved.

Rachel is not impressed by something?


Soon, we will enjoy a pork roast in St. Anns and a wine/cheese evening at Club Roma. The excitement is building! Please check out the Appeals for Wheels website. I overheard Carolyn saying that tickets must be purchased in advance for the Club Roma event, so they know how many to plan for. Harv and Carol would also like to hear from those who are coming to the pork roast for the same reasons. Their RSVP is via Facebook.

If you can't reach either, you can always connect with Ralph or with me.

Hope your weekend goes well. Enjoy the long Canadian holiday weekend!
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I often find Rachel sleeping in this relaxed pose.


Monday, July 25, 2011

summer days

A tender moment between Opa (Ralph's dad) and Janneke


We are thankful the humidity has subsided somewhat this week. I suppose we shouldn't complain about it being so hot because in a few months we'll be feeling so cold...life in a land of extreme temperatures! We did try to fry an egg on the sidewalk - wasn't hot enough. We considered baking cookies in the van; Carla's family (friends in MN) was successful with their windshield. Instead of complaining, be creative!

With the temp dropping a few degrees in these last few days, we took the girls to visit Ralph's parents. Emily and Sophia had a great time with two of their older cousins, Shannon and Abigail. How we love the attention and care Shannon and Abigail give to our girls - kind of like big sisters giving Em and Soph a break away from our home.



As we anticipate the next few weeks, we are excited about all the fundraising efforts for our van. Please visit the AppealforWheels website for more info. This week, Ralph has been meeting with different individuals to choose the van and then create a blueprint for the modifications. We can either purchase a passenger van or a cargo van, and we would then work with a specific company to modify the insides and develop a lift system (side lift, back lift, arm lift... lots of choices). It will take time to purchase and order, so it is important to have the details determined in advance. We continue to be amazed at how God has provided for us through you.

Thank you so much for your generosity and kindness.

Here are a few shots from the last few (more tolerable) days with the girls outside:

a special moment with Brenda


Swim time is always a good time!



It has been a decent summer season so far for our family. We are thankful for the invitations to swim, and we have noticed that both Rachel and Janneke are not so stiff in their limbs with all the hydrotherapy (swimming). Obviously, Emily and Sophia are also thrilled with being in the water, and it is especially rewarding to see Em and Soph hold their little sisters in the NPCC pool (Tuesday family swims). The pool is shallow enough for the older girls to stand, so we give them a chance to "carry" their sisters. Both Rachel and Janneke show a distinct, happy, change on their face, so I know it is a treat for all.

I arranged our nursing and respite care so that we have help six days a week for July and August. The extra set of hands each day gives us a chance to spend time doing normal things. I sometimes feel a bit frustrated that I can't just pack up and go for a playdate spontaneously; everything still needs to be planned ahead around feeding schedules. We do take Em and Soph on their own, but they prefer to be with the whole family too.


Here's a photo from my kitchen the other day. One of our nurses likes to make me laugh by creating fun out of the mundane. These are some of the syringes drying - at attention.


Peace for your week.
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Postscript: I had a chance to visit with my Oma last week. I am thankful for those hours I could spend with her, and I grieve the effects of aging - when the body no longer does what it's supposed to do and one feels confused with the events of the day. I pray that God will bring Peace soon.


Saturday, July 16, 2011

sterkte


This is one of my favourite photos from Elma's last visit. Elma had some ideas for lemons and pots (and cracked pots), and then I asked if I could write words on the lemons.

The word sterkte is Dutch for strength. It's one of those words that is part of a unique vernacular surpassing time. Amongst Dutchies, when you don't know how else to express comfort or encouragement, you say sterkte.

And the word comes to mind tonight as I reflect on my Oma DeJonge, my dad's mom. Her 90th birthday was this week, and many members of the extended family were going to celebrate today together. But, last night, she had a fall, and her party was replaced with quiet recuperation in her room.

She is a tough cookie. Her life has not been easy. She lived through war in Holland, fell in love with a brave young man whom she met when he hid on her farm from the Nazis. She visited him when he was eventually captured, married him, moved to Canada with him, raised four great kids, and buried him eleven years ago. The details are worth writing into a book.

She often writes me letters because her hearing is not strong for phonecalls. She has always encouraged me, especially in these last five years when our family changed with Rachel and Janneke. She says she doesn't know how we manage with raising two disabled daughters, and I remind her of how she apparently managed with all the incredible stresses in her life.

Sterkte. Lean on the Lord. Put one foot forward. You just do it.

To you, Oma, sterkte.



These last few days have been busy with different things. This week's visit to Mac was quick and simple - I like that. Rachel visited her nephrologist (kidney doc) who seems less concerned about her kidneys now than six months ago. That means we need to visit him once a year instead of twice a year. I like that too.

Here are a couple of photos for fun:

We finally received our second JennSwing! Janneke is thrilled. Really, she is.


Apparently, Advil is now so potent, the factory insists on wrapping the entire bottle with safety wrap (?). (We go through a lot of ibuprofen in this home.)


And sometimes, our suppertime turns into an impromptu soccer clinic: Tonight was the offside rule, brought to you by red peppers, cucs, and carrots.


Peace for your weekend.
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Thursday, July 14, 2011

cracked pots, U2 and more lemons

So, can you guess what is in front of the lens for this picture?

On Sunday, Ralph and I were able to take two nights away - first time since 2008 -and enjoy space from tube feeds, routines, and paperwork. We left for Toronto in the late afternoon, and our entire visit was enjoyable. A huge thanks to Ashley, Amanda, our nurses -and Wilma Harris (who stepped in to cover 45 minutes when our schedule of care briefly came undone Monday afternoon). Nothing like arranging care for your kids while walking along Yonge St.

We caught up with Floyd and Carolyn as they were packing up from the Toronto Outdoor Art Exhibition, toured the downtown sights, shared dinner with Dwayne, Tracy, Phil, and Carla, and took in a concert at the Rogers Centre (formerly the Sky Dome).

Okay, so not just any concert. Friends of ours were unable to use their U2 tickets, so we kindly offered to go in their place. Thanks again, Jake and Liesje. Wow. What a concert. And so many familiar faces also in attendance!

Mind you, the faces are difficult to see given our view, but really, even seats next to the moon would still have been exciting. (We were about that high up.)


And I couldn't resist a quick coffee from SPot Coffee. No, not endorsing them -just excited to see my name next to coffee.


This photo is for my dear friend Renee who lives in China. Walking through Spadina and surrounding streets made us feel as if we were not just one hour away but an entire country away. So thankful for the experience of many cultures in one city!


Here are a few more shots from our session with Elma. Check this link for more - here, here, and here.

We wanted to include the chairs in our photos this year because the chairs are more present this year than last. As the girls grow, we know that we will become more and more dependent on equipment to help us safely transfer and transport our family. We'd like to think the chairs are just merely extensions of our home - not ugly frames and cushions.

Making lemonade outta lemons.






And thank you, thank you, thank you. It is incredibly humbling to receive your gifts of support. Finances can become a stress in any relationship. It is strange to see money as a gift when often it is a burden. Yet, we see your financial support for our family's van (and other items) as extensions of His promise to provide. May you be blessed as you have blessed us.


Peace for your week.
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Friday, July 8, 2011

sister time, swimming, and lemonade




I think Rachel would tell you one of her favourite times of the day is when her big sisters pop into her bed and read to her while the nurse is getting Janneke ready for the day. I am so thankful Emily and Sophia love to meet Rachel where she is - even if it means crawling into her bed, tolerating drool on the leg and reading without a lot of verbal affirmation. Therein lies a love that I love.

These last few days, we have been enjoying all this warm weather and friends' pools. This year, we were gifted with two fish rafts, one for Rachel and one for Janneke. This floats are designed to be unsinkable and tip-proof. It has been awesome to see Rachel and Janneke float in in the middle of the fun. They are too small for many of the other special needs resources for pools, so this rafts have been a pleasant surprise. I love seeing their legs kick and their smiles as the kids swim around them.



This week, we had another appointment with Niagara Prosethics/Orthotics to try yet another style of boot that can assist Rachel in bearing weight with her feet. These new boots look like, well, moon boots. I call them Princess Leia boots (from Star Wars). We will give these a try. They are almost impossible to put on, but we will see if the boots can help.



In the meantime, Rachel also has been exploring the ground with her bare feet in the walker. I love this look on her face. It's either telling me she got a secret or she's thinking of mischief.


Janneke has taken to exploring with her walker again. For some time, she did not move much in her walker, but she is back at finding the piano, and moving towards us when we call her. It is still amazing each time she moves. I am not taking those steps for granted. Each foot firmly on the floor tells me her bones are getting stronger.


We were gifted with a family photo session with Elma this week. She has been a lovely new friend for our family - and not just because she has a great camera. She has been encouraging and supportive, and we appreciate her honest and sincere conversations.


If you read in previous posts, you would know Elma has followed our family around for a couple of days. In her photography blog, she shares a few of those photos. Click here for part 1 and here for part 2.

Admittedly when I perused through her photos, I struggled with two different thoughts:

one:I don't want to be a masochist parent who uses her children to seek unnecessary attention.

two: I see the photos as normal, but others have remarked on the abnormalcy of our routine.

There are parents who would understand our routine; we know there are many families who quietly live with similar needs and issues that don't blog or photograph each week. Hopefully, our story and our photos won't suggest story-topping, but instead, help those who see the photos to know that this is another way families live.

Sharing in the journey means dividing the sorrows and multiplying the joys.

We also believe that God's purpose prevails. In sharing with community, we also cling to the promise that He is faithful. When we wrestle with our doubts and fears, we can lean on the prayers of our community and the words of Hope (Lamentations 3:19-23). When we are thrilled with little and big achievements, we can celebrate with our community as we tell and retell the story.

Peace for your weekend.

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making lemonade outta the lemons in life ....


Saturday, July 2, 2011

Happy Canada Day!

Very yummy Canada cupcakes -part of a fundraiser for our friend Makayla, thanks to Sweet Art by Elizabeth.

Happy Canada Day to you! We enjoyed the beautiful weather by picking strawberries in the morning (thanks, Tigchelaars) and visiting with Uncle Harvey, Aunt Carol, and Katelyn in the afternoon. It was a great day to be outside, and I took Rachel along. She can sit for a bit without falling back, so we laid a towel in the straw row, and she held all the berries. If anything, it was another unique sensory experience for someone prefers to watch and not touch. (I didn't have to worry about her eating the berries!)


Later in the day, we picked up our Makayla cupcakes and visited with family. Harv and Carol will be hosting a pork roast in the end of August as part of our van fundraising, so it was a practice run for taking the whole family over. We enjoyed our day: Rachel and Janneke took in all the sights and sounds while Em and Soph played soccer with Ralph, steered the pickup through the field, checked on the chickens, and swam in the pool. At dusk, all four girls had a chance to see or dance with sparklers - a great ending to a great day.



Earlier this week, Rachel and Janneke visited with Dr. Wiggins, our low-vision specialist. He is often accompanied by several students or visiting doctors, but he never fails to give us his full attention and very kind care to the girls. When he approached Rachel to say hi, she immediately put her hand on his and rubbed her palm back and forth - as if to show her trust.

The girls are showing signs of double vision. Rachel's eyes do not follow together, but she alternates between the two. You are not always certain which is her dominant eye. Janneke's eyes have lately changed; her eyes used to work together, but they are now following the same path as Rachel's. He did not prescribe any intervention for the girls, but he encouraged us to work on visual stimulation, following lights, patterns, toys... etc. To be brief: Keep playing with the girls. We can follow that advice!

Tuesday night, Rachel and Janneke ran the PeachBud race in Grimsby. It was a windy 10K! I was excited to share this race with some new friends from NPCC. Dana and Bernice ran the 5K - their first! Fraser ran along with me in the 10K, and it was great to have their encouragement. Races, in general, are quite festive, and there is a contagious sense of excitement as everyone lines up to go.

Yet, not everyone caught that excitement. I failed to read the fine print in a race memo that said no strollers allowed. I figured that out pretty quickly when, after the start gun sounded, a group of experienced runners passed me and called me a number of (less-than) descriptive names, the kindest being moron.

It was a bit unsettling to start the race with the words f-ing moron echoing through my head, but I chose to keep running. From what I determined later when I scanned the fine print, strollers are now deemed safety hazards. I am disappointed that somehow strollers are now prohibited. My girls in their stroller are the reason I run. To enable the unable.

To avoid any more verbal trash at the end of the race, Katelyn and Alanna (who were there to help me with the girls and the tube-feeds) exercised a successful hand-off just before the race finished, at 9.5K. The stroller rolled safely off the track, and I crossed the finish line without the extra wheels.



It was still great to share the race with friends, and Rachel and Janneke kicked their legs the whole way. Fraser helped me push through the tough spots, and everyone went home with some exciting to talk about. Em and Soph loved all the people-watching, and they told me about the races they hope to do in the near future.

Today, we are working around the house. I can hear Ralph working outside, Em and Soph debating something behind me, nurse Bridget giving Janneke chest-physio, and Rachel spitting and making her buzzing lip sounds. In the busyness and in the mundane, we are thankful for family, for our community, and for your prayers. Each day is a gift from Him.

Hope you get a chance to savour a fresh strawberry.

Peace for your week.
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