the Pot family

home again

2012-01-26T18:54:00.000-05:00

out for a stroll with Dad

Janneke is home from the hospital. Yes, there are feelings of relief in being home, but they are coupled with feelings of trepidation because there is no conclusive diagnosis as to what is causing Janneke's blood sugar level to drop after her feeds. For now, the doctors are calling it hyperinsulinism. Apparently, it's something found in new babies or other people post-surgery, yet no one is certain why it is happening in Janneke - and why now.

To create stability and time for all of us to learn more, Janneke is on continuous feed, and we are monitoring her blood sugar levels at home. She is on a rare med called Diazoxide that should regulate the insulin (preventing it from overworking), but we are waiting to see if it is actually effective.

We are equipped with the right meds should there be another seizure or problem, but we hope that with the continuous feeds and being at home, Janneke's body will rest and respond to the med. Unfortunately, Janneke picked up a virus at the hospital (cold? flu?), so she is not so cheery right now.

It was encouraging to see the love both Em and Soph had for Janneke this afternoon and evening, and Rachel was all smiles for me when she came home from school. Being together as family is good.

Pray for wisdom, for patience, and for peace - so quickly can anxiety warp our perspective, preventing us from seeing His hand.

Stertke.

spot

a story for you

2012-01-21T22:45:00.000-05:00

Scene 1: Tuesday night, earlier this week

It was a dark and stormy night when two girls and their mom drove into a back parking lot of a local Mercedes dealership. They were in search of what their dad had seen hours ago on the highway, carried on a flat bed into the city. The excitement heightened after a phone message confirmed what was already suspected...

Could it be?

Is it?

Yes, it was true.

Everyone's Van had arrived.

Scene 2: Saturday morning, today

It was a bright snowy morning when those two girls watched their mom offer a coffee to dear Mr. John Thompson and sign some papers. Before they knew it, those two girls were riding around in Everyone's Van with their mom, calling out "curb" every time she turned right.

And there was much rejoicing.

The story is far from over.

Next week, we take the van to Northend Mobility for its wheelchair accommodations. The modifications should take a few days, and then we will be available for tours and travels. We would love to share the wheel with you. We would not have this van without you. On a side note, though, I have quickly realized that we can no longer remain anonymous on the road.

* * *

Meanwhile, back at Mac....

Janneke continues to remain stable, and we were able to cap off her port - taking her off IV fluid. She is now taking a new, somewhat rare drug that is meant to stabilize her insulin levels, hopefully preventing more low-blood sugar issues (including seizures). Not everything is understood with why this happened and its cause, but the endocrinologists believe this drug may help. And then we can all be home again together. This weekend, Ralph is taking care of her at Mac, and I will resume hospital duties tomorrow afternoon. We are optimistic she will be home within the week.

Janneke and cousin Aleah watching a video together

There are trying moments when a child is in the hospital for any length of time, but God gives the grace and the strength to rally for each day. Receiving the van in the midst of this reminds us of His love, His community, and His good humour.

Soli Deo Gloria.

Peace,
spot

photos from Janneke

2012-01-17T22:13:00.001-05:00

out and about the halls of Mac...

My big sisters came to visit.

I think Emily and Sophia look like doctors giving Rachel my updates.

My uncle Jim came to visit. We played a touch-finger game.

I felt well enough to go for more than just a stroll today. Mom asked Child Life to unlock the piano. I was pretty happy to tickle the ivories.

Thanks for praying for me. My dad is staying with me tonight, and tomorrow he gets to meet the doctors while my mom gets a good sleep at home and catches up on stuff. (She misses my sisters alot!) I am getting more and more energetic with each day, and I can hardly wait to move around in my walker again.

Peace.
Janneke

curious...

2012-01-17T11:42:00.004-05:00

So, we are curious as to what Janneke's body is up to. She is slowly being weaned off the IV dextrose, with her sugar being monitored every two hours. Within the last 24 hours, there has been no real significant change in her sugar levels. I appreciate the stability, but this is a different story from what was happening while at the General in St.Catharines just three days ago.

Did Janneke just want to visit Mac? Why now so stable? Don't get me wrong; I am thankful for the stability, but I would feel better determining the cause before we take her home. Endocrinology has assured me that this does happen with low-blood sugar issues with relation to a low growth hormone, and we have a number of tests ahead (not too invasive) that will possibly help with understanding Janneke.

Ralph jokingly said to me, "Sara, there are easier ways of getting away from the house for a few days." But, we both acknowledge gratitude with having a good team of people helping us at Mac as well as having help with managing things at home. We continue to be optimistic about this peculiar circumstance.

Yesterday, some of the emotions, sleep deprivation, and frustrations caught up with me, so I made myself go for a long walk. I was able to explore some parts of the woods (Royal Botannical Gardens) as well as watch a number of deer feed on the Mac university soccer fields. Something about watching deer and being in the woods reminded me of God's grace - as disguised as it maybe in the circumstances we do not choose, He is always present, always in control. Only by His strength.

Peace.
spot

At Mac

2012-01-16T12:55:00.002-05:00

Yes, we are at McMaster Children's Hospital. This is a short update because I am using the computer in the Ronald McDonald Room. Janneke is sleeping better today, and her blood sugars have been stable in the last 24 hours. We are waiting to connect with endocrinology, and we are hopeful the problem of her sugars will be solved. (She is still hooked up to IV and her feed pump, so the sugars are stable, but we haven't really solved anything.) Thanks for your prayers, emails, and notes of encouragement. I am also thakful for a cell phone that allows me to connect with Ralph, family, friends, the nurse at home (with Rachel) and all the other members of our care team and community!

We are especially thankful that Emily, Sophia, and Rachel could visit with Janneke. They were not allowed in the General (St.Catharines), so last night's supper together in her hosptial room was extra special.

Peace for your day.
spot

update on Janneke

2012-01-14T23:38:00.001-05:00

Thank you for your prayers, comments, and notes of support. We truly appreciate the encouragement. Janneke remains at our local hospital while waiting for a bed to be available at McMaster Children's Hospital in Hamilton.

She spends most of her time resting, but there are moments when she is alert and ready for her drums. These moments pass quickly as her sugar levels change.

We acknowledge that many children and adults live with seizure disorders, but what is frustrating to us is that very little is understood about Janneke's seizures. No one is certain why her blood sugars are not stable, and it is particularly intriguing that her sugars drop after she is fed. To help create some stability, she is on an IV and is fed almost continuously throughout the day. Being fed slowly all day and into the evening seems to prevent the sugars from dropping dramatically, but it still isn't solving the problem.

We are thankful she is stable, and with the testing of her levels every hour or every two hours, we are able to anticipate a seizure before it actually happens. We are thankful for the doctors and nurses caring for Janneke at the local hospital, and we are thankful for the help we are receiving from our community to make it possible for one of us to always be with Janneke.

Once she is admitted to Mac, we will consult with our endocrinologist, who specializes in understanding chemical and hormonal imbalances. We hope our visit to Mac will be short and helpful.

We are thankful for God's provision of strength, good humour, and community support.

Peace.
spot

Here is a photo of Rachel with a prayer shawl someone made for our family. How fitting to have received it just last week. It is soft and brings warmth - physically and emotionally. Rachel is particularly drawn to its soft appeal. We are reminded once again of how important prayer is.

prayers for Janneke

2012-01-12T13:04:00.000-05:00

We ask for your prayers with our little Janneke. She has been in the local hospital since yesterday afternoon due to a seizure. The last seizure Janneke had was Easter Sunday 2010, and yesterday's seizure was unusual in presentation and length of time. Sara was home with Janneke at the time, but we had to enlist in the help of paramedics to bring her to the hospital where she could finally stabilize. We were hopeful last night that all had settled, and we would be able to go home today. However, she started again with a seizure this morning, so she is remaining in hospital.

We are thankful for the medical care she is receiving. We had lots of blood drawn to determine the cause of the seizures, and at this point, it looks possibly related to her growth hormones. Her blood sugars are not stabilizing, which adds to the mystery. We will wait and see. Thank you for your support and encouragement. We are very thankful for the help of Ashley and Christina who have helped us manage Rachel's care - and Em and Soph. We are tired and bit worried, but we know she is in good hands, and we are optimistic all will be sorted out soon.

Peace.

resolve

2012-01-06T18:00:00.000-05:00

Hey, everyone, I am feeling better!

It's been a good week so far. Everyone is feeling better, and we have done a few things outside the home. Janneke continues to explore surfaces in our home and has recently fit into Rachel's old jeans, making her seem so much older. Funny how denim adds the years.

We had another successful portacath flush, and we also did some routine bloodwork. We hear stories about portacaths getting blocked or how quickly a clot can form in the vein, but we have had no trouble with the girls'. I am so thankful we could work out for the bloodwork to be drawn in the home instead of the hospital.

* * *

We had a chance to go visiting with Emily and Sophia on Thursday. We have a long list of family and friends that we want to see, but for Thursday, it was Aunt Alida and the Lammers family. It was great to step away from the routine at home, but we miss being with all four girls. Rachel and Janneke spent the first half of their day with nurse Roxanne, and then Ashley kept them company until we returned. Everyone had a good day.

Realistically, it is very difficult to take our whole family visiting. It's not just the transportation, but it is also all the supplies we have to pack, the accessibility of the home we are visiting, and, in the end, we are too busy with the girls' care plans to enjoy the company.

We wanted to see my Oma DeJonge, but her retirement place is in "lockdown" because of a flu virus. Oma can't even leave her room to go into the hall or the common areas. She has to stay in her room, and her meals are brought to her. Needless to say, visitors are not permitted. So, we called her on our cell phone and waved to her through the window. Can you see the phone cord and her hand, Aunt Linda?

Secretly, the reason we traveled towards southern Ontario's snowbelt was for... well, snow. We have not seen snow yet in St. Catharines - and as great as that is for traveling, our kids have missed the winter fun. Nothing like a set of wooden stairs with some snow to function as a backyard toboggan hill.

* * *

Today, it was actually quite warm out for January, so our PSW (personal support worker) and I took the girls for a walk to Lake Ontario. While we were gone, I opened the windows in our house to chase away any existing germs. Both Rachel and Janneke were all smiles for the walk; they love being outside. Emily and Sophia collected photos and nature items for their art projects. I love their creativity!

This week, I've been thinking about the idea of resolutions. When I google the meaning of resolution, the word determination shows up.

These past three weeks haven't really made me feel determined or motivated. Once in a while, that's what happens - life catches up with me. And I feel unmotivated and, well, not really determined or resolved to do more than necessary. I find these weeks filled with reflections on the past six of fifteen years as parents and as a family. It's as though I need to grieve every so often.

I know this bit of time passes, and as much as I wish I could ignore the emotions and feelings that come with this life, the more I acknowledge how I feel, the easier it is to deal with the day and move onward. Some of Sarah McLachlan's words come to mind:

if I feel a tear, I won't cage it,

I won't fear love.

if I feel a rage, I won't deny it

I won't fear love.

I also have thought about Simeon's words to Mary and Joseph when they brought the infant Jesus to the temple. Most people get excited when they see a new baby and fill the parents' ears with all kinds of lovely things. When Simeon saw the Christ, he Knew the significance of that new baby. After sharing his joy, his last words to Mary were "and a sword will pierce your heart."

We weren't there to know all of Mary's story, but I am guessing her life was not easy. Yet, Christ came for that very fact - to tell us that as difficult as this life might be, there is a promise of hope. Our sorrows will not consume us, and grace will be given daily.

So, if I really try to resolve anything for the year, it's to not give up when there's not much to give. I resolve to lean on Him when I am no longer able to handle my day. I resolve to find the joy in each day and allow that joy to supersede whatever frustration or sadness is in my heart.

I can do all things through Him who gives me Strength.

Peace.
spot

Happy New Year!

2011-12-31T23:00:00.000-05:00

What does 2012 hold?

Time to say farewell to 2011. It's been an eventful year, full of good memories and surprises. Thankfully, it held no hospital stays! It is almost impossible to write down in this post everything that happened over the course of the year, but we thought we'd highlight a few reflections.

The year 2011 saw more friendships formed,

intense physio for Janneke in response to her new ability to bear weight on her feet,

and interest and intention from Rachel with her music therapy.

This summer, we were able to visit my parents' cottage in Point Clark with extended family, but the process of taking our girls places seemed to be even more challenging.

Thanks to some gifted money, we were able to afford another Jenn Swing for our backyard, making for some sweet swinging time after supper on summer nights.

We were also able to afford two floating fish that enabled our family to enjoy pool time without worrying about how to manage everyone in the water at once.

We learned that Janneke prefers to touch surfaces and textures instead of toys. She became stronger in her walker, and we still find her moving to places in the house where she can stroke the wall, a chair, or the edge of an open door.

We still try different things with Rachel, but she is reluctant to touch or engage with toys. She loves to have people play with toys for her on her tray. At school, she is showing signs of interest in touching various textures, and we are thankful for the one-on-one time she receives to develop this ability.

Admittedly, we were disappointed despite all the effort and time used to help Rachel's feet find more range. We did casting for several weeks, and we tried various AFOs. We were able to see some movement on her feet in the walker, but the success was short-lived. Perhaps 2012 holds new treatment or new ideas to encourage weight bearing for Rachel.

Certainly, this fall brought a big step for our family as Rachel started SK at the Niagara Peninsula Children's Centre - and began her afternoon bus rides.

We also found a new favourite place, Heartland Forest (in Niagara Falls) where we can take our whole family for a hike, a visit to the accessible treehouse, and some playtime on the playground. It has also been a great place to take friends and celebrate birthdays.

We continue to marvel at the changes Emily and Sophia make - a new fondness for dogs, a strong interest in art and music, and more energy on the soccer field. They continue to show so much love for their sisters, and we give thanks for the gifts they are to us.

Looking back over the last six months, we think particularly of all the effort, generosity, kindness and encouragement with our fundraising efforts for our new van. We have been overwhelmed and amazed with the money raised - and we anticipate the new van to arrive in January or early February. We are also moving forward to renovate our house; these new plans will allow us to care for Rachel and Janneke into adulthood.

Given this past week of recuperation from the cold and flu, I hope that the beginning of 2012 brings good health. It has been very quiet here these past number of days, as we have waited for energy and sleep to return. Rachel has started antibiotics, and Janneke seems to be healing without needing the additional meds. We hope next week holds excitement and energy for more than going to the grocery store for milk and Tylenol.

Happy New Year to all. May you feel encouraged and may there be joy. May the days of laughter supersede the days of uncertainty or anxiety.

Peace for your week, for your year. Soli Deo Gloria.

spot

Merry Christmas

2011-12-23T13:00:00.000-05:00

One of my favourite moments is watching Janneke (almost) run over to the piano in her walker when anyone is playing the piano. Usually, she makes the best harmony with big sister Emily or Ashley (respite worker).

* * *

Since the last post, we entertained my side of the family for our annual Christmas gathering, enjoyed a Christmas program at church, visited Mac for an assessment on both Rachel and Janneke's orthopaedic issues, and..... tolerated the stomach flu and new colds.

Visiting with our family in our home is always a treat. We rarely take Rachel and Janneke to other homes because of accessibility, so it means so much to have our extended family spend time with our whole family. (We schedule the fun while a nurse or respite worker is here.)

These last few days have been tiring but decent. Most of us are mending from the various flus, but I am still waiting for Rachel to feel better. She seems to have taken the brunt of the cold flu with lots of pain for her in managing her mucous and coughs. She has good moments while the Advil is working, but she was unable to attend school all week.

There have been some sweet moments this week too - watching Rachel lay alongside Emily and watching Sophia bake for her classmates. Emily would break from her math to do a quick cuddle with Rachel. Meanwhile, Sophia was determined to make cookies for her friends at school for the last day before the Christmas holidays.

* * *

Each year, we have a new Christmas book for our family. This year, we used the theme The Twelve Days of Christmas - Canadian style with the story A Porcupine in a Pine Tree. It is a great picture book - for all ages. Check out the clever illustrations with the "ten Leafs-a-leaping" ever-reaching for the Stanley Cup. The illustrator obviously understood the tremendous tenacity of the NHL team while not quite grasping the Cup.

* * *

Most of the time, this week, Rachel has been sleeping. I hope the sleep brings healing. Admittedly, when the girls have colds, we worry - too much. I often say that worrying is one of my strengths. A strength I would rather not have.

After the last visit to Mac, we have some thinking to do about Rachel's scoliosis. We were presented with the option of a brace - not to heal the curvature in the spine but to prevent further curving. We'll be looking for literature and advice about this over the next couple of weeks. While we x-rayed and discussed Rachel's bone structure, our orthopaedic surgeon also observed Janneke's willingness to bear weight on her feet. Our doc was thrilled with Janneke's progress, and we can only wonder what progress she will continue to make in 2012.

Now it is the day before Christmas (Eve) and all through our house.... Nurse Bridget is looking after Janneke and Rachel, and Emily and Sophia are enjoying candy-cane induced giggles downstairs. We are making plans to host Ralph's side of the family next week. Right now, the sun is shining, and there is no snow to be seen. We're okay with no snow - we would rather face the inclement weather with our new van in the new year (hurray!).

Thanks to all who ordered Christmas arrangements from Sara V. We were overwhelmed with the response, and the money raised will support our family with the home renovations and van expenses. We look forward to sharing with you the home renovations.... in a future blog post.

In the midst of the illnesses and busyness, I was gifted with the chance to hear Handel's Messiah at Roy Thompson Hall with Toronto Symphony Orchestra. An incredible facility with an incredible group of musicians. It was beautiful.

What struck me about the recent TSO performance was the strength of one note. You would think you'd be blown away by the choir or the instruments (and both were amazing). Yet, I was most affected by one point in the performance when the soprano soloist had to reach an incredibly high note.... and it was if the whole audience leaned in, and we heard that one note as distinctly as if she sang face-to-face in a small room.

I thought about when Elijah was waiting to hear God's voice (I Kings 19).... and after the strength and might of the wind, the earthquake, and a fire, God's power is found in a whisper.

Expect the unexpected.

Peace to you all and Merry Christmas.

spot

P.S. No Christmas cards this year - still catching up on the thank-yous from our family fundraising. Look for a Happy Van card in February.

yep, it's Wednesday

2011-12-14T19:00:00.000-05:00

To celebrate what appears to be a green Christmas for many of us, a friend has offered to make arrangements similar to this one (varying in size and presentation) as another way to add to our AppealforWheels fund - to keep the van running, to add a new bedroom to the house for Rachel and Janneke, and to add to the girls' RDSPs.

Sara (Faber) Vahrmeyer will create these beautiful pieces for you - prices start at $15 for indoor or outdoor arrangements. Check out her website with this link.

(Funny - sixteen (or more?) years ago, I was in the bleachers at Calvin College's old fieldhouse, cheering for this feisty point guard on the varsity girls basketball team who is now making Christmas centrepieces for my family.)

This past weekend, Rachel's friend Epeus had a birthday party, and he invited the SK class to celebrate. It was a party to be sure, complete with lots of singing, dancing, and laughter. We even got to feed the chickens leftover birthday cake with Epeus's Pakke (grandfather).

Epeus and the SK friends made a beautiful coloured globe for Rachel, and all the kids gave money for Rachel's van and new bedroom. It was a beautiful time together. A special thanks to the Hoekstra and Doris families for their kindness and love.

Rachel has recently developed a love for this little bee... maybe it's the contrasts between yellow and black? Nevertheless, she loves to touch him and watch him.

Janneke often walks into the blue room and stares at this small section of wall when the sun is shining. She plays with the shadows created by her hands and the blinds.

But, then there are days when she is just plain tired of walking. I have found her going in a circle, round and round by the piano.

And so, I pick her up, snuggle her, and put her in bed for a rest.

This week has brought more rest for all of us, despite a few days of me losing my voice. We are enjoying the days together, and we are looking forward to celebrating Christmas with family.

Hope the next few days bring peace and rest for you.
spot

and another week passes...

2011-12-09T22:30:00.000-05:00

Well, Sinter Klaas came and went. Thankfully, no straw or sticks were found in the klompen, and everyone is enjoying new slippers on their feet. We are experiencing some snow today - but it doesn't seem to want to stay. Will it be a green Christmas?

The week has been good for girls - but the nights have been short. Not sure - lots of chest physio and massages for both Rachel and Janneke around 3 in the morning.

Rachel visited her friends in SK at Beacon this week. It had been a few weeks since our last visit. Mrs. Bootsma (teacher) told me when she announced that Rachel was visiting, the whole class erupted in a cheer. When we walked into the room, I heard, "Rachel's here!" from all corners of the classroom.

It is awesome to see how excited these kids are for Rachel. I hope to continue a friendship with the kids and Rachel for as long as possible. When those SK kids can grow up accepting Rachel for who she is, I think everyone wins.

There is much love here. Riley and Zekijah loved building things on Rachel's tray.

Epeus and Rachel made gingerbread cookies, and Rachel presented Dad with her cookie afterwards. She was happy to be a part of the experience making it - and Ralph was happy to eat it.

* * *

It's that time of year when the stores seem too full of people -good for business, but it makes for some very crowded spaces. This week, Ralph and I were looking at washers and dryers, planning ahead for when our current ones decide it's one bib too many. We ran into a lovely neighbour, and we had very deep conversation in the household appliance section.

We talked about living with grief - without compromising privacy, I'll simply say she is familiar with earthly illness that leads to death. I asked her how her days were going. She said, "My emotions are slowly thawing out."

For some of us, dealing with a crisis or a slow death forces our emotions to freeze. We run on adrenaline, coping with the issues at hand. It is only after the crisis passes or the loved one dies, that our emotions slowly thaw. Sometimes that means we fall apart and cry a few days after the event. Other times, it may be years before we finally "thaw out."

I love that imagery. It's as though there is permission granted to slowly deal with sorrow, all the while knowing God's grace and love can prevent permafrost.

Who would have thought a visit to an appliance section would encourage me in such a profound way? Then again, who would have thought to celebrate the Light of Christ at a time when there are more dark hours than light in our days?

* * *

Speaking of light, I took advantage of some free light therapy for Janneke the other day. Janneke and I went to Canadian Tire for a quick errand- thankfully, she still fits in the carts! She was mesmerized by all the Christmas lights and loved all the blinking.

Our experimenting with walkers for Janneke prompted a friend to pass along the larger size of Pacer. As much as we like the Miniwalk, the Pacer allows her to touch and feel all the surfaces in our home. The first thing she did when I set up the new-to-her Pacer was to zip over to the piano and play.

Janneke also loves to sit in her chair and "play" alongside Emily.

The week ahead holds our visit to the paediatrician at Mac and more holiday fun. Hopefully, it also holds more sleep.

Peace to you.

spot

new beds and a haircut

2011-12-01T13:26:00.001-05:00

December 1. December again. Time flies.

So, the tree is up, decorated and lit - yep, it's real. It's only fallen once in the last week, so here's hoping it lasts the month. The homemade decorations remind us of holiday memories and former students (ornaments given as teacher gifts). As I wrote last year, the tree and its memories remind us of God's grace through the years. I love that.

I am not loving the possibility of Janneke running into the tree with her walker, but so far the prickles of the branches have kept her away. Both Rachel and Janneke were initially intrigued by the lights and the colours, but they have since moved their attention elsewhere.

Emily and Sophia worked with me on the front window with our annual Christmas painting. Last year, we painted the back window, but with Janneke spitting and touching the window, we figured our picture might stay in better shape on the front. With the old-style double pane, it is a bit hard to see from the road, but I am proud of the girls and their work.

* * *

With the painting done and the tree up, Em and Soph are now enjoying the extra jumping surfaces in our livingroom.... Our bed is temporarily in the livingroom, making for a great performance of vaulting over the couch and onto the bed.

So, why the bed in the livingroom?

Well, some might say Janneke and Rachel have received an early gift for Christmas. President's Choice Charity has purchased new beds for our girls. We are very thankful for this wonderful gesture. The beds are designed to last a lifetime, adapting to the girls as they grow.

To make a spot for the beds, Ralph and I had to move our bedroom out into the livingroom. This created an empty space for the construction of the beds. Now this weekend's job is to move what we can from the girls' former room into the new-beds bedroom, so Ralph and I can gain a bedroom back for our stuff.

With this generous gift, we can now save the additional money fundraised this summer for home renovations and the girls' RDSPs - we don't have to set aside the cost of the beds.

If you are curious about the beds, click this link (bedsforspecialneeds.com). We have two IDA beds.

The reality now facing us: We will need to make some significant changes to the home soon to better accommodate the equipment our girls need and to help us provide better care for them. We are currently dreaming about those changes.

* * *

Not only did the girls get new beds, Rachel had her first hair cut! Shannon came over and used her experience with hair care to give Rachel a beautiful new 'do.... perfect for someone whose hair was constantly getting stuck in the bib buttons. Now we hope her hair will also get thicker and stronger.

* * *

I've got Handel's Messiah playing just about every day - that and the Trans-Siberian Orchestra. I am considering waiting with holiday cards until the van arrives - a belated greeting in January or February.

But, for the Christmas cards I do send out, I hope to use the ones Niagara Peninsula Children's Centre is currently selling. Are you interested? Every year, a student from the NPCC school designs the card, using whatever abilities and programs they can. Here is a photo of this year's card. If you ever visit NPCC, you can see a framed copy of all the cards made over the years. Very cool.

And if you are interested, I can pick some up for you - $9 for a dozen cards.

In the midst of the busyness, we remember the reason for the season - that Christ came to make all things new. He came to bring hope, the promise that our sorrows, our burdens, our circumstance will not consume us (Lamentations 3:19-23). He brings hope.... I know that my Redeemer Liveth.

Peace.
spot

As for Janneke, she's too busy exploring on her bare feet to post this week.

from Janneke

2011-11-24T20:51:00.001-05:00

Hi, it's me, Janneke.

I've decided to write the post tonight for my mom. I've had a decent week. Two of my big sisters are at an Ice Dogs game with Dad (they got to sing the national anthem with their school!), my other big sister (Ray-Ray) is sleeping soundly, and my mom is hanging out with me. I love being on the computer; Mom is hoping I will figure out enough cause-and-effect to learn things like communicating Hello and Mom with some kind of computer program. I've been thinking an iPad is lot cheaper than those augmentative communicative devices....

About my week:

I am trying out a new walker. Mom thinks the weather isn't so warm anymore for long walks, so I had a chance to spin the wheels and feet at a store. Mom chose Michaels because the aisles are wide and there are lots of fake flowers and pine trees to touch at my hand level!

I still have my cold, but the chest physio helps. Here's an older photo of me getting the physio. Even when I don't have a cold, I get the compressions a couple times a day with my puffers. Helps me get all the gunk out of my throat. It used to scare Mom when I would cough up old blood, but now we know that's normal for me.

I had a hearing test this week (again). I am not amused by these hearing tests. The audiologists try to make me smile and respond, but I can't say I have much to give. The ladies are cheery and nice, but a soundproof room with no windows and noisy pink stuffed toys is just a little out of my league. Mom says I have to go back in May again, but she is not worried about my hearing and neither am I.

I am worried though, about this poor stuffed elephant.

I much prefer the outdoors. Today was warm enough for me to meet my sisters coming home from school. I love being outside, and my Mom is hoping I can withstand colder weather this winter, so I can be outside more. The more I can stretch my legs, the stronger my bones will be. I also like the change from being in the wheelchair stroller. Mom thinks my wheelchair (when I am bigger) will be a bit different from Rachel's because I can do some exercise with my feet.

To remind you of the last post, here's a shot of me going vertical. On our outside lift, that is. Emily is taking me up, so I can go right to the front door without having to be carried.

How's Rachel? Well, she loves school, but she comes home so tired! Here's a photo of her admiring the sunlight on the mirror ball. She likes to push her feet on the floor to move the chair a bit, but she is no match for me in my walker.

Mom also takes Rachel to a chiropractor in our neighbourhood. Rachel loves the massage, and it is helping her with her muscle pain and teeth grinding. She comes home from her weekly sessions so loose and relaxed... I am a bit jealous!

Have a good night, everyone. I'm off to relax in my bed while being fed. Mom says there's more to write in another post about our new beds to come.

Peace.

Janneke

still vertical

2011-11-18T20:13:00.001-05:00

This afternoon, I watched yet another car speed through the crosswalk by my kids' school. I yelled a warning with my greeting to Gerry, our crossing guard. As I walked over to him, he said to me, "Don't worry. I'm still vertical."

I love that phrase, Gerry. I'm still vertical.

I need to remember that.

This week, I had one of "those nights" where I felt like stomping my feet, laying on the ground and having an explosive temper tantrum, the kind two-year-olds try to get away with. Nothing major happened -usually it's something very little that triggers the meltdown.

I was tired of the drool. Tired of the diapers. Tired of colds and flus. Tired of the laundry. Tired of the fact that none of this may change for my kids' lifetime...

Tired, well, of everything.

That phrase, "I'm still vertical" encourages me. To know that in those temper tantrums, His grace is extended to me. God went vertical for me on the cross.

The irony is that often when I am sitting on the floor, leaning against the wall, exhausted, it is then I am reminded to be vertical.

Those feelings of frustration will pass. There will be something to laugh about -and the anger will dissolve.

What often dissolves my anger is the fact that both Rachel and Janneke love the sounds of yelling and crying. They grin at me and think the sound stimulation is so amazing. It's kind of funny, really.

* * *

Janneke has been alternating between fighting a drippy cold and exploring more cause/effect stimulation. She loves to make the screen change with the kneebouncers website, and we hung a string of lights from our curtain rod that she likes to touch when she is in her walker.

Rachel is also dealing with the leftovers of a cold, but she seems to tolerate all the congestion better than Janneke. She seemed well enough after the weekend to attend school this week. Today, we had our second visit to the chiropractor. She loves the massage and adjustment, and she is so relaxed after our session.

In fact, today, she was so relaxed that she was able to take her school day very seriously. NPCC School had a pajama day today, and apparently, she slept most of her school day in her chair. Isn't that what you are supposed to do in your pjs?

The week is ending on a quieter note than with which it started. The girls are getting better each day, sleeping and feeding as I type right now; our weekend looks pretty quiet. (Well, not for all of us, I suppose. Ralph is in a not-so-quiet gym out of town for a grades 7 and 8 volleyball tournament.)

Speaking of going vertical, Emily, Sophia, and I had a chance to watch two people set up for para surfing on the beach this week. It was a super cold and windy day, perfect to hitch yourself to a kite and surf, I guess. It was a beautiful sight to witness, masking the not-so-pretty guts and bravery necessary for the two people to actually take flight.

Peace,

spot

Monday, monday...

2011-11-15T20:49:00.001-05:00

Well, the week started with a new friend, the CAA. After a pulling out our battery that literally fell apart within its casings, the service guy said, "Boy, that rarely happens."

I said he ought to meet our family. In fact, he did see Janneke who demonstrated her talent for sleeping and eating (the convenience of tube feeding) at the same time. She was tired out from her physio session at NPCC - really, the whole event could have been worse (side of a highway, no meds or feed pump). Thankfully, we had just finished our physio session, and we were sitting in the parking lot of NPCC. Rachel was home with the nurse, and we eventually made it home with a working battery.

The battery -with warranty- will probably outlast the van.

* * *

The past week has been decent. We enjoyed a visit with Caleb, Nella, Aleah and Aunt Jess; the kids certainly enjoy each other's company.

watching a ship go through Lock 3

Caleb and Janneke playing Itsy Bitsy Spider

* * *

more from our week: Rachel have a heart-to-heart with Carolyn

Emily has started piano lessons with Julie. We can't decide who is enjoying it more: Rachel and Janneke who provide an attentive audience, or Emily, who thrives on the challenge to learn.

* * *

Today started out a bit like a Monday all over again.... a significant sized puddle in the kitchen due to a leaky water tank, a slug on the floor, and garbage strewn outside the side door from some inquisitive neighbourhood animal...

But, aside from sliminess of the slug, I thought the silvery trail he left was kinda cool. (Here's the shot of our front mat that shows the trail it took to get from the door to the floor.)

It actually made me think of the kind of trail we leave behind in our journey of Life. Bit of a deep thought for a Tuesday morning, I know.

* * *

Now we are back into dealing with colds again. Janneke was up most of last night, and Rachel had her share of the sniffles over the weekend. Our care plan includes keeping their fluid levels up (extra water), adding Pedialyte to their feeds, lots of acetaminophen, ibuprofen, and Benadryl as well as sleeping upright as much as possible... sleep... Yes, sleep is a bit expensive right now. But, everyone will mend -and sleep- in time.

Today, Rachel had her AFOs adjusted, and next week, Janneke's hearing will be tested once again. In the next few weeks, we will be making several trips to Mac for follow up with our paediatrician, orthopaedic surgeon, and several others.

Good thing we have a new car battery.

Peace.
spot

Post-reflection:

Some lives that seem to end too soon on this earth still leave a powerful legacy. Our thoughts have been on the Van Zumeren family this week and their extended community as they celebrate Glenn's life yet grieve his earthly absence.

We hardly knew him -aside from one very amazing conversation this spring- yet to us, his life was an amazing testimony...

a race, a hike, and a playdate

2011-11-06T14:42:00.001-05:00

Yesterday was a great day for anything outside - including a race. Emily, Sophia, and Rachel (with her dad's help) did the 1K alongside scores of other kids. We were proud of Em and Soph for their effort, and Rachel gave us huge smiles with her ride. Thanks for cheering with us, Aunt Rhoda!

Janneke and I did the 10K together - and yes, she finished ahead of me. But I almost went ahead of her at one point. At the 5K mark, the front wheel rolled off, and I stumbled over the top of the stroller. Thankfully, the wheel was easy to pop on, and I was thankful for the help of a bystander that came to assist me.

While the wheel falling off has happened before when I have gone along the canal, it has never happened during a race. The race was enjoyable, and I loved seeing Janneke take in the sights, but I think it will be one of our last for a time. I will continue to run with the girls, but I am not feeling safe about racing while pushing. In yesterday's race, I sensed the risks with my fellow runners; too many ran too close to me without realizing the potential for tripping or falling. Until I have a better gut feeling about this, I will keep our shared runs to the canal -and trying racing on my own. That will feel strange!

What better to finish the race than to visit with Opa and Oma? All four girls enjoyed seeing their grandparents; we loved the tenderness shared between Dad Pot and Rachel. Interestingly enough, Janneke wouldn't stop making sounds during the whole visit.

She hasn't made sounds for that length of time ever (other than crying), but for an hour yesterday, she made a sound from the throat accompanied with a grin. It was priceless!

* * *

Earlier this week, Rachel went along with the SK (Beacon) class to visit Heartland Forest. This park has become so familiar to our family in the last six months; any chance we have to visit is worth it. I loved the excitement on the kids' faces as they greeted Rachel in the parking lot, and I appreciated all the help with pushing Rachel through the forest.

When we spent time in the treehouse, listening to Amy talk about the different animals, it was very important to the class that Rachel have a chance to touch and feel every skin or fur that was displayed. I loved how they insisted Rachel be a part of the whole experience. Before leaving HF, I had a chance to talk with the founder, Dan, and we were once again awed by his determination to make the park accessible and memorable for all who visit.

* * *

I also had a five year old friend visit me for an afternoon last week. Zekijah is a companion for Rachel. Born within a few days of each other, Z has attached herself to Rachel for the last two years. Z walks with Rachel whenever she sees her, wipes her drool, takes her in the lift at church to Sunday School, and asks to see her every day.

Having Z around reminded me of the days with Em and Soph at that inquisitive stage. Z's questions and comments kept me laughing for the afternoon:

She insisted I wear my seatbelt the second I sat down in the van.
I must drive the speed limit because that was very important.
I should consider having another baby because we need more kids in the house.
She really actually hated (her words) the Fred Penner music I was playing.

Oh, to be five and share exactly what you think.....

After Rachel went to school, Z chased Janneke around in her walker, and peppered our nurse Kirsten with lots of questions. We finished off the playdate with a visit to the library. A good visit for all of us.

Peace for your week.
spot

running the race set before us...

2011-11-01T23:22:00.001-04:00

Last Saturday, we buried the earthly body of my Uncle Richard Poort, a bricklayer by trade and an outdoorsman at heart.

Honestly, pardon the pun, but he was a real brick, a salt-of-the-earth kind of guy.

The body we buried was worn out and weak, but his personality and our memories of him were anything but that. Almost all of the memorial photos chosen showed Uncle Richard outside, enjoying fishing (all year round!), canoeing, and camping. He was loved by his immediate and extended family, as well as the community of Woodstock.

Bittersweet is the company of family who know what it means to live with sorrow.

* * *

Uncle Richard and Aunt Alida (my bib-making aunt) not only had a heart for their family and community, but they also had a heart for the children in Haiti.

So, it only seems fitting to run this Saturday's race in Hamilton in memory of Uncle Richard. The race? It's called Road2Hope - together, both Citykidz and Edu Deo ministries are raising money and awareness for children around the world, especially in Haiti.

I had intended to run this race with both Rachel and Janneke, but as of late, Rachel does not sit comfortably in the double-jogger for the duration of the run. That makes me sad - but also determined to find a different type of adult jogger stroller. She loves the movement while we run, so I hope to sign her up (last-minute!) for the 1K to be run in her wheelchair. Janneke and I will do the 10K together.

I suspect Janneke will finish ahead of me.

* * *

I am not a TV person - I don't have time to watch TV, but that doesn't bother me. Yet, I find that I have used TV in parenting Rachel and Janneke. Up until recently, I had been using Baby Einstein DVDs, and I thought that was sufficient brain stimulation.

But, the other day, Rachel and Janneke shared some screen time with their sister, and I was in the kitchen. I heard both Rachel and Janneke laughing.... and making all kinds of strange sounds. Turns out, they were responding vocally to "big kid" cartoons. They now love Dinosaur Train, Peep, Sesame Street.....

I guess they were bored with the baby videos. I even got a funny look from Rachel that I swear said, "I've been trying to tell you this, Mom. I've watched Baby Mozart heaps of times; I'm ready to move on!"

* * *

It's evening now, and the last feed of the day is almost done. Both Rachel and Janneke are wide awake; I don't think I'll ever figure out their sleep patterns.

We are slowing leaving the colds behind, and the last few nights have been a little less interrupted. We had a chance to celebrate Emily's birthday last weekend, and it was great to see how loving her friends were with Rachel and Janneke. There are times when Em and Soph wish they had friends who had sibs like Rachel and Janneke - so we are thankful for the love and interest shown during playdates and parties.

* * *

I had to laugh a little at a neighbour boy the other night: He came to my door dressed as a nasty pirate. He saw Rachel sitting in her wheelchair and with mouth agape, just stood there. I wanted to tell him that having a pirate at my door was actually more shocking than seeing a child in a wheelchair.... but I allowed him the time to quietly soak it in. He closed his mouth, shouted out a cheerful thanks and went on his way. Rachel glanced at me with her quizzical look as if to say, "What was his problem?"

Peace for your week.

spot

And speaking of peace... what better to come home and read the funnies with no interruptions.

Good-bye cold virus, hello wheelchair!

2011-10-25T22:56:00.001-04:00

There is joy in a sister's hug.

There is joy when children feel better after several sleepless, tear-filled nights. Both Rachel and Janneke took on a cold, and Rachel was in significant pain due to a g-tube infection. They took turns not sleeping at all...

There is no joy in those kind of all-nighters.

Thankfully, everyone seems to be mending. Em and Soph did not get much of the virus, and I was able to replace Rachel's g-tube, albeit with heart-breaking cries from her because of the pain involved with removing the old one.

While we are thankful for recovery, we also wish speedy recovery to the Brand family (yucky flu) and to Ella (surgery on her foot).

* * *

Managing life with little sleep is a challenge, and I find those days and nights need constant prayer.

There are still those moments when it also helps to yell into a pillow or say one cuss word. (Sorry, Dad.)

Speaking of sleepless nights, this week, we marked Emily's 10th birthday; ten years ago, we started the parenting journey in Fridley, Minnesota. I went from teaching 75 middle school students to parenting one tiny baby. (Why is it that one small baby crying for five minutes can completely unravel you when, pre-baby, you thought nothing of playing Bunko with 75 screaming adolescents for an entire afternoon, three days before Christmas?)

And here is another little one, just born. This is Asher Hoff, born on Sunday to Aron and Rachel, friends through church. I wanted to not only show off his beautiful face but also his beautiful hat.

With the helpful the Niagara Midwives, Asher was welcomed into his family. The Niagara Midwives have also been a part of our family with the pregnancies and births of Sophia, Rachel, and Janneke. With Rachel, because we knew of her anomalies before birth, there was a transfer of care to McMaster staff, but the midwives continued to see me and support me pre and post labour.

The midwives were also on hand to share the complicated feelings of joy and sorrow when Janneke was born. We thank God that the team was so quick to act when Janneke went into distress in labour, and we deeply appreciated their quiet comfort when we all realized Janneke was presenting problems just like Rachel. The midwives continued to visit me and support us even though we had a transfer of care with Janneke whisked off to SickKids in TO.

The support and love from Niagara Midwives continued this summer with the sale of these hats. These hats were on sale in the clinic - the money raised went to our Appeal for Wheels campaign. We were so moved by their continued support. How thankful we are to have experienced midwifery care with our girls, both in the years past and this summer!

* * *

Here are a few photos taken before the girls became sick. Janneke really enjoyed being outside for the afternoon, and I loved the way she watched her sleepy big sister Rachel get off the bus.

Janneke has also figured out our spot for her drums. Sitting on a pile of shirts in the drawer, she can hit the drums, creating sounds and lights. When we put her in the Pacer, she often zips over to her room and stands there for as long as she can, drumming away.

* * *

Today's fun included Rachel official first wheelchair! It took three people to adjust and ready the chair for her, but her throne is complete. It's called a Zippie... not sure how much she'll zip around in it, but her posture is already better with the new seat. Mind you, she doesn't look too impressed with the adjustments.

I discovered that the chair is much larger and heavier than her previous chair - and it can't collapse into smaller parts. We signed the order for the Sprinter van at the dealership yesterday.... it can't come soon enough.

Now we wait. When the van arrives from the factory, it will go to Northend Mobility. We have estimated we will welcome the finished and accessible Sprinter to our driveway in January.

Thank you again for your support with our van. We could not place this order without His blessings extended through our amazing community.

Peace for your week.

spot

Oh, Rachel's old chair? For now, it's a new-to-you chair for Janneke. Hand-me-downs aren't always exciting, eh?

migration and musings

2011-10-17T23:36:00.001-04:00

Over the weekend, we celebrated a couple of birthdays, and to add to the fun, a flock of flamingoes migrated to our lawn. They rested for two nights and are now on someone else's lawn...

It's part of a youth group fundraiser - pay for the flock to fly or pay for immunity. If you are curious, check out this link.

Sophia shared her birthday with Alex - the two girls had great fun with their friends at Heartland Forest. We all loved the cupcakes, complete with little people asleep in their candy beds!

Rachel continues to love riding the bus to school. Her legs wiggle, and she grins as soon as the bus pulls up to the driveway. By the end of her afternoon, she is usually asleep - or almost asleep. We are so thankful for her team of teachers, therapists, and assistants.

Yet, we have been concerned with her muscle soreness, especially in her back and hips. We wonder if the scoliosis is having an effect on her posture or is aggravating her. It is tough to figure out what is causing her discomfort at home when she cannot tell us. She grinds her teeth loudly when she is not comfortable, so we are trying to help with pain meds, massage, and repositioning.

so tired at the end of the day!

This past weekend, I took part in a workshop that discussed how churches can help families affected by disability. There were some very good conversations, and I found those ideas linking with thoughts I had from the previous week -after reading more of Ian Brown and John Piper.

Funny how two very different men - Brown (columnist for Globe and Mail) and Piper (pastor at Bethlehem Baptist Church in MN) - can have a significant influence on the reflections of my life right now.

Ian Brown writes about the absence of normalcy freeing him to experience his son's life as unique as his son is. I find the absence of normalcy more frightening than freeing at times....

John Piper preached a sermon earlier this year on the text of John - where Jesus' disciples ask Him about a blind man begging alongside the road. Jesus doesn't dwell on the cause of the blindness, but He instead points to a purpose within the disability.

To be honest, the sermon is a difficult one to hear.

Do we spend too much time concerned with the cause of our suffering and not enough time considering the purpose or the good stuff that might come from/with the suffering?

I know, deep question.

I think many of us will spend our entire life trying to find purpose in/with our earthly struggles.

Yet, I am convinced that we can be robbed of joy and life when we consume ourselves in the futility (Piper's word) of understanding the cause for suffering. I am not talking about the times or seasons when we have our questions - but there is the risk we can become so consumed with the why and the why not, that we become blinded by our fears.

When we surrender to this idea of the absence of normalcy, we need to find Freedom midst the fear.

* * *

Then there were the reflections from Mark Stephenson this weekend, director of Disability Concerns with our church denomination - in caring for a family or a person affected by disability, we must also give them a chance to feel empowered or worthy.

Sometimes, our intentions to help and care for a person affected by disability can rob them of a feeling of self-worth. Not only must we support, but we must also allow for that person to feel worthy. It's not just about the disability, the inability - the cause, but there can also be something - a purpose, often very small or insignificant in the world's eyes that creates worth and ability.

* * *

What purpose do my children have now? That's where that concept of the absence of normalcy comes to mind. I will trust God's plan will help me feel free to embrace the unexpected and not be so fearful of the unknown.

Somehow, there must be peace in accepting the life as it is right now, and also choosing to step forward. Somehow, we must reinvent the world's concept of what it means to be to have value.

* * *

I found myself stepping outside the perimeters of normal today when Janneke's therapists suggested a clip-on tray for Janneke's walker. Though most of us don't read while we walk, we noticed that when Janneke moves in her walker, she is far more engaged in stuff than when she sits in her chair. : )

Into the week we go: More birthdays to celebrate this weekend, a pumpkinfest at Heartland Forest, and my dad's retirement celebration in Guelph.

Sterkte - for tomorrow and the days to come.

spot

Hmm, here's a postscript - because I am absolutely loving the fall colour in my home: Not only did I enjoy driving the Prins Grow Sprinter, I am now really enjoying some Prins Grow amaryllis - shameless advertising, I know.

Happy Thanksgiving

2011-10-11T12:37:00.003-04:00

Happy Thanksgiving! We had beautiful weather here, and we tried our best to enjoy the outdoors. The colours in this part of Ontario are amazing!

Last week, Rachel and I took the GO train and the TTC subway to SickKids in Toronto. Rachel loved the experience, and I became familiar once again with the limitations for people who rely on chairs to go places. Looking for a working elevator in Union Station because the "accessible" section of the building was closed for construction was a bit of an adventure. I am thankful that I could push Rachel around, but I wondered how someone would make this work if they are operating their chair on their own. I was also intrigued by the people who helped me (a fancy businessman) and the people who just looked at us and walked on (a group of folks who commented loudly on how frustrating it must be to rely on elevators but oddly enough, they didn't help us). Consider how you can help out someone in your travels today.

waiting on the GO platform for the train

in the subway - lots of faces and lots of noise

quick visit with Aunt Rhoda near Queens Park!

On our way home - so much easier to change bibs and operate a feed pump when you are not driving

The result of the appointment? We were evaluating Rachel's sleep issues related to her respiratory system and her drooling. We no longer need to see the folks at SickKids for these issues, but we can follow up with our ENT team at Mac. The doctor at SickKids had a few suggestions for managing her drool, but nothing that will be changed at this time.

I had some interesting conversations on the GO train. Many people were kind and asked questions. One woman thought I was giving Rachel oxygen when she was looking at her feed pump and tubing. I laughed - and then I realized she was serious, so I told her that oxygen is administered through the nose and mouth - not the belly. I was also asked if Rachel would "grow out of that" - I thought she was referring to the wheelchair stroller, but I realized she was referring to the global developmental delay. Again, another interesting conversation. I didn't mind. I prefer honest words/questions to the furtive or sneaking glances. Overall, a great day with my girl.

Last week, we also visited with our SK friends at Beacon. Our first visit a few weeks ago was a quiet one; the students seemed a bit shy to see Rachel again. This time, the students were so excited to see her, wiping her face when she drooled and showing her all the things they were doing. They especially loved sticking all the magnetic toys to her chair.

Recently, one of the cats from our neighbourhood has been meowing at the door, asking to be let in. I am not really a cat type, but I had to admit the little visit we had on Saturday was cute. I sat Rachel and Janneke down at the door, and Em and Soph sat with them - preventing the girls from falling back and also making the cat dance on the glass of the door by teasing him with their fingers.

We are still in the planning process with our van, and we borrowed the Prins Grow Sprinter for a test drive the other night. Ralph specifically wanted me to practice parking it at stores. Yikes.

I could handle the roads okay, but parking proved to be challenging. I think I need cameras and mirrors all over our van - as well as someone with parking pointers like the ones airplane terminal folks use.

We are determining which size of Sprinter to buy, but, as seen in the photo, either size will be a significant difference from our current situation. (Both vans' front ends are lined up for this photo!)

We finished our test drive with a visit at the Prins home, and Janneke took a liking to their pet hamster in its exercise ball. She actually leaned forward to touch it and bring it close. Not sure how the hamster liked it, but we thought it was pretty cool.

We enjoyed this Thanksgiving weekend, although we have to admit, we miss the nursing help when we have three days in a row without extra care. We were able to spend some time with extended family, and we also took in a hike with our little family of six at Short Hills Provincial Park where there is an accessible trail in the woods!

What better to celebrate Thanksgiving than to climb a tree with your birthday buddy uncle- right, Soph? (She and Harvey share October 14.)

This weekend, we did spend time talking about our reasons to be thankful. Sometimes, our current circumstance or mood can cloud our ability to be thankful, but we know that in listing our reasons for thanksgiving (large or small), we begin to see the ways that we have been blessed. I was particularly thankful for our church community on Sunday. As the greeters welcomed us to the building, they also greeted our girls, nonchalantly wiping Rachel's drool while chatting with her and with me. I am very thankful for that level of comfort and care.

Peace for your week.

living thankfully,

spot

thoughts on faith

2011-10-03T22:41:00.000-04:00

Here is our little garden gnome out for some weight-bearing therapy

on the sidewalk - Janneke meeting her sisters coming home from school.

It's been a decent week. The excitement with AppealforWheels has morphed into determination to order the van and make our home accessible, make caring for Rachel and Janneke less pain on the back and more joy on the face. We've been working with a local dealership, and we've been told the van will most likely be ready in January. Seems like a long time, but we know time passes quickly.

The van has to be custom-ordered from Mercedes, then sent to Northend Mobility for the wheelchair lift and floor parts, and then we will have it sent to one more place for the finishing touches -electrical outlets, overhead storage, and possibly a fold down table.

Whew.

You know, at some point, you wonder if there is another way to say thanks because saying thanks over and over seems to fall short of adequately describing the feelings of thankfulness. Yet, in some way, this reminds us of the abundance of God's grace. Though we fall short of perfection in our brokenness, His grace overwhelms us. So, we give glory to Him for your gifts. And we live thankfully.

This past week was more ordinary for our family. The anticipation and celebration of all the fundraising events is now behind us, and we are dealing with the day-to-day stuff.

Lately, I've experienced a longing to chat with my mom again. Our family buried her much too early (according to earthly standards) in early July 1997. She was a nurse at Mac and with VON. Now Rachel and Janneke receive much of their medical attention at Mac, and we have VON in the home at least 5 days a week. Oh, the irony...

My experience with grief created a sense of longing. This longing comes and goes. It's a longing for a visit with my Mom - she wasn't perfect, but she was familiar to me.

In the same way, I have, at times, had a longing to return to the days before Rachel and Janneke were born. I remember in the first years after both girls were born, I longed to return to 2005 - those days weren't perfect, but they were familiar to me.

I am not a risk-taker. But... we have to make that conscious decision to step forward and move into what is not familiar.

Sometimes, the future seems way too uncertain or unfamiliar, and I want to retreat.

But, there are times like this morning at NPCC with Janneke in her physio session when I am reminded that the unfamiliar and uncertain days can also be quite rewarding.

Janneke is exploring more independent weight-bearing with her feet. This is great news! She is strengthening her bones, and she is starting to support her weight when we transfer her from her bed to her chair.

She still tires quickly of this fun, but we are thrilled with her progress. This may mean her wheelchair will be different from Rachel's - to allow for some sit-to-stand therapy. We will see what Janneke wants to do!

So, onward we go, into what seems uncertain. I appreciate Ian Brown's words about the absence of normal freeing us to see what our girls will do... become... be.

Living on faith, we step forward into tomorrow.

Peace.
spot

a picture post

2011-09-25T15:20:00.000-04:00

So, it's been awhile... Some time ago, we enjoyed a hike at Heartland Forest in Niagara Falls. Christina and I took the girls for the afternoon, and everyone had a lot of fun. The folks at HF have worked hard to make this park accessible for all abilities, and we hope their vision is supported in the years to come.

Everyone stopped for a drink along the trail.

An accessible tree house in the woods!

Turtle watching - with a slot for kids on their feet and kids on wheels.

A swing that is rigged up for chairs.

Looks a bit intimidating, but everyone loved sharing the ride.

* * * *

Our physiotherapist suggested Janneke start with a pair of shoes, so that she will do weight-bearing on various surfaces. We have not been able to find a pair of shoes to fit Rachel's feet, but Janneke and I found a decent pair that have since been scuffed! (Thanks to cousin Monica, we were appropriately decked out for our shoe-shopping expedition.)

* * * *

Last Saturday, we had a big party at Agape Valley - hay rides, face painting, games, bouncy castles... It was a great time, and we loved all the kids and friends sharing our thankfulness for the support raised with Appeal for Wheels.

My niece Mia came to the party to share with me the news of her party - her birthday party where she asked for support for Appeal for Wheels instead of gifts. Such a treat - a humble gift.

Both Em and Soph helped pick the winning raffle ticket for the Staal jersey.

And the winner: Yvonne Rauwerda!

* * * *

Last Sunday, I picked Rachel up from Sunday School, and found her covered in glitter! I love it that she gets into her work. (Well, let's be honest: Zekijah and friends love to help Rachel get into her work.)

The recorder lessons are back. And now Janneke accompanies on the piano.

* * * *

This past Friday, we enjoyed the Banter and Bluegrass event - what fun! Sara Weber, the Golden Horseshoe Revival, and the rest of the Bluegrass team threw a great party, complete with amazing food and fun atmosphere at The Pearl Company. We were humbled once again with the outpouring of support from our extended community. It was an honour to share our story again - and we hope that this excitement generates care and support for others. (Anyone have pictures from Friday? I forgot my camera!)

Looking ahead: I will be joining Mark Stephenson and several others on the Day of Encouragement to share ideas of supporting families deal with disablities (A4). Here's the link.

I started this past week feeling overwhelmed with the care of my girls; both girls were not sleeping well and sleep deprivation does not help you feel rational or reasonable. Yet, each time my girls seem distressed, I learn something about improving their care. For Rachel, we suspect she is dealing with stressed muscles from all the activity of home and school. For Janneke, we know that she needs more chest phsyio during the day and evening to help her cope with the mucous at night. So, I leave the week feeling less anxious and more hopeful about providing better care for our girls.

Today is a sunny, unusually warm day. Rachel and Janneke have just finished their feeds, and Em and Soph are playing outside with the neighbour girls. We appreciate this day of rest, and we look forward to what the week ahead holds.

Peace for your week.

spot

two parties!

2011-09-09T20:40:00.000-04:00

So, I opened the mail this morning to find our tickets for the upcoming Banter and Bluegrass evening fundraiser.

And then I checked my inbox to find a reminder via Facebook about the Agape Valley Family Celebration planned for September 17.

Two more parties!

We are looking forward to the family celebration at Agape Valley where we can celebrate God's faithfulness through His people with raising funds and awareness for Rachel and Janneke. Check this link for more information. We hope you can come. It is a bit different from a fundraiser - it's also being planned as a celebration of all the excitement generated from Appeal for Wheels. Bring on the hayrides!

We are also excited about the Banter and Bluegrass evening planned at The Pearl Company. Some wonderful people connected with Ralph's days at Redeemer have prepared a special night of Southern style food, story-telling and music. Hope to see you there! Check this link for more info.

Yes, we've received much support for our wheelchair accessible van, but Rachel and Janneke's needs extend beyond the van. Almost all of what is raised will help us afford the van and related expenses. The funds raised beyond the cost of the vehicle will help with modifying our home and backyard. This includes ceiling tracking, new doors/thresholds that accommodate wheelchairs, and making our backyard accessible for the chairs. The amazing outpouring of support has allowed us to plan how we might improve Rachel and Janneke's quality of life - in the daily routine, as well as enhance our time together as family. Check this link for more thoughts.

We appreciate and love all the plans that have been made and are being made for the various fundraising events. We are so incredibly blessed by the gifts and prayers. We also hope our story will encourage you to walk alongside others who need the support. We belong together.

Peace for your days. Looking forward to the September parties!
spot

family video

2011-09-09T10:56:00.000-04:00

Here is the video that we have created with Elma to help tell our story. It includes images Elma took when she shadowed our family in the spring.

May God continue to guide our steps, and we will try to lay our anxieties in His hands. Admittedly, with all the excitement generated in raising funds, it has also reminded us of how uncertain the future is for our girls with their needs. We want to do our best to take care of them, but there are days when we worry about what next year - or five years from now - looks like. We have to push ourselves return to that old adage "one day at a time," no matter the challenge.

peace.
spot

first day adventure

2011-09-06T21:29:00.000-04:00

It was the first day of school for Ralph, Emily, Sophia, and Rachel. Everyone was in good spirits in the morning although I wasn't sure Rachel had any idea of what the day held for her. It was busy for our nurse as she helped our family with the morning routine; there is now extra work each day to prepare for Rachel's afternoon adventure. (Rachel is in the afternoon SK.)

The bus arrived, and Rachel seemed somewhat critical of the whole business. It seemed she was taking it all in from a very serious perspective. What on earth was all this about?

By the end of the day, her big sisters were excited to see her arrive, and she actually turned her head toward us when we called her name. That was pretty cool. It is strange to have her come home and not know really what she all did for the afternoon. I suppose that's like asking some kids - "What did you learn at school today?" and hearing a three or four word response like "Oh, we did stuff."

Being the only two not having a school day, Janneke and I went for a run by the canal this afternoon. I loved listening to her coo and spit and make her unique sounds. She enjoyed the movement and loved being outside.

We have a few minor health issues to still figure out with Rachel, but we are thankful the first day went well. So onward into the week we go.

Peace.

spot

good-bye summer

2011-09-05T23:00:00.000-04:00

Well, we said good-bye to summer. This past weekend, Emily and Sophia camped with some of their cousins, some of my cousins, some of my cousins' kids, and some of my cousin's kids' kids. Lots of extended family. It was time for the annual deWit jaunt to the Pinery (a provincial park). Ralph and I were thankful that our older two girls could take in the fun under the watchful eyes of my sisters, my brother, and their spouses. One of Emily's friends joined the girls on Sunday.

Going to the Pinery for Labour Day has been something I remember doing since being a little kid. The visits became less frequent when we lived in Minnesota, and now camping with Rachel and Janneke doesn't work well. Yet, no matter how long it's been since the last visit, the place seems so familiar. Even the steps to Burley Beach seem like the same steps I climbed as a kid, willing myself to say good-bye to Lake Huron on the last weekend of camping.

While Ralph took care of Rachel and Janneke at home, I traveled to the park to pick up the girls. We had a day of rain and sun with great family traditions, and as I packed them up, the girls said, "Mom, we need to say good-bye to the beach." Daughters of their mother.

Wouldn't you know it, as we climbed those stairs, we could hear the waves calling -and there was not a soul on the beach. The darker clouds were slowing passing over us and the sky was light over the water.

In time, the wading turned into a full-out swim with all their clothes on.

It only seemed natural to catch them literally dancing in the waves. Sophia yelled out above the sound of the waves, "Now this is making a memory!"

Tonight's exceptionally cool weather seems appropriate as we mentally shift into autumn mode -though the official day of fall is a few weeks away. The girls packed their lunches, and the house is gearing up for a return to school.

Rachel begins her first day of Kindergarten at the Niagara Peninsula Children's Centre School, housed in the same building as NPCC. We are thankful for the familiarity of NPCC, and we are also looking forward to meeting new faces with the school team.

The newest aspect to this adventure: Rachel will take a bus to school each day. The NPCC School has a fleet of short buses for transportation, and the school team tells parents that the ride is often the most favourite part of the day for the kids. (Yep, I am reminded of the words "riding the short bus" used as an insult to someone's intelligence. Well, that's my beautiful girl on the short bus. Drive and joke carefully.)

I have to prepare her backpack yet, but Aunt Alida sent along a new stack of bibs. I think this is the perfect back-to-school gift for Rachel. She'll be in a class of five students with a team of therapists, EA's and a teacher. We hope Rachel enjoys being with her new class just as she loved being in the preschool program last year.

Admittedly, I am looking forward to the routine. Last week was busy with an appointment every day for Rachel. We had seating clinic on Monday (measured for future wheelchair), hearing test on Tuesday (her big sisters got to help the audiologist!), a visit to Mac for neuro muscular issues, two meetings with new nurses on Thursday, and a visit to her new classroom -also on Thursday.

Now it is time to sort through the paperwork, return phonecalls, and write thank-yous. It will be a different year for our nursing schedule (hours will be in the first part of the day), and we will be welcoming new nurses to replace others no longer in our home. I will also be on my own with Janneke a bit; I am looking forward to that special time. By late afternoon, it will be a full house again, but thankfully, both Em and Soph are able to do more around the house. I was told that supper tomorrow night will be cheesy tortillas with chocolate sprinkles on top. Yum.

Peace for your week. May you be given the strength needed, one day at at time.

spot

what a weekend!

2011-08-28T23:00:00.000-04:00

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.

Peace.

spot

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.

cool jumping and cool jersey

2011-08-24T10:31:00.006-04:00

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.

spot

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.

a holiday

2011-08-20T23:24:00.012-04:00

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: thepotfamily@gmail.com

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!

Peace.

spot

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? : )

beetles and buses

2011-08-04T22:13:00.019-04:00

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.

Peace.

spot

in His shade

2011-07-30T20:30:00.011-04:00

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!

spot

I often find Rachel sleeping in this relaxed pose.

summer days

2011-07-25T16:29:00.008-04:00

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.

spot

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.

sterkte

2011-07-16T22:04:00.008-04:00

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.

spot

cracked pots, U2 and more lemons

2011-07-14T21:50:00.006-04:00

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.

spot

sister time, swimming, and lemonade

2011-07-08T21:55:00.009-04:00

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.

spot

making lemonade outta the lemons in life ....

Happy Canada Day!

2011-07-02T10:19:00.001-04:00

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.

spot

to hear the sea-maid's music

2011-06-26T19:21:00.023-04:00

Though appearing precarious, Janneke was in good hands today as she boarded a boat. Today was the Easter Seals Regatta at the Port Dalhousie Yacht Club. Firemen came to help the families with boarding, and we enjoyed a fabulous ride- thanks so much, T and C. We were so thankful for the great weather: no rain, sunshine and a cool breeze.

Janneke sounded the horn as we passed by the Yacht Club

There was plenty of room for the chairs on the boat.

The girls rotated between their chairs and our laps.

For our American friends, the girls are looking towards Fort Niagara (USA) along the Niagara River. I like this photo with the American fort in the background and the Canadian flag in the foreground. We were intrigued by the American cannons pointed at the British flag and Fort George.

Janneke loved the stripes on the boat pillows.

Earlier this week, nurse Bridget and I took Rachel and Janneke to join the JK and SK students from Beacon for their annual visit to Happy Rolph's, a local park with animals. The last time we took our girls there, Rachel had been petrified. This time around, she seemed to enjoy all the action. Janneke loved the goats, and she put out her foot and hand to test their tongues.

Rachel loved having her friends nearby, and Abby took time to show Rachel how to throw bread to the ducks. (Much thanks to Kelly VandenAkker-Teeuwsen for the photos!)

I wondered how both girls would react to the animal sounds, particularly the braying of the donkey, but they took it in stride, partly due to the fact that all the JK and SK kids were also loud in their excitement. We look forward to continuing our friendship with the Beacon kids this fall.

Speaking of donkeys, if you enjoy Shakespeare, vineyards, wine, and A Midsummer's Night Dream, you can enjoy all of it at the annual Shakespeare in the Vineyard, held July 7-9 and 14-16. A Midsummer's Night Dream will be performed at Henry of Pelham Winery with all proceeds going to the Niagara Peninsula Children's Centre. We're going again this year, and we look forward to seeing Ron VandenBurg as Snug the Joiner! A special thanks to all the donations and sponsors for making this event happen, particularly Thorold Lumber. Click this link for details.

A Midsummer's Night Dream is one of my favourites of Shakespeare.... and NPCC is currently a favourite place, so the night is sure to be enjoyable. The lines from the play are some of the funnier ones from the Bard - "Nay, faith, let me not play a woman; I have a beard coming."

Recently, Rachel had her hearing tested to prepare for school in the fall. As with Janneke's hearing tests, the evaluation is done in a sound-proof room - no windows either -and so an exposition of sleep comes upon me (Act 4, Scene 1).

The results? I am tired of pink bunnies that play drums. (This is the stuffed animal that the audiologists use to draw Rachel's attention by first using hearing.)

I am a bit concerned with the hearing in Rachel's right ear since there seemed to be difficulty for her with that ear. I hope to bring her to the doctor this week to see if she is dealing with a middle ear infection. That might explain her tears in the night. The audiologist will retest her hearing before September.

Tomorrow, both girls are due to see the low-vision specialist at the U of Waterloo. We love visiting with Dr. Wiggins; he has a heart for kids like Rachel and Janneke. I appreciate his advice for their vision and for the bigger issues of special needs.

Emily and Sophia are officially on summer break, and they have already enjoyed camping, boating, and swimming! While Ralph and I took some time to complete gov't paperwork and other related responsibilities, the girls spent a night and day with their aunts and uncles at the Pinery to celebrate cousin Caleb's health. I am sure my sister will blog a bit of that weekend soon. We love it when our kids come home happy.

Peace for your Monday.

spot

getting by

2011-06-21T22:17:00.010-04:00

Sometimes, you just need to go for walk - no matter the mess at home and the unanswered phonecalls, emails, and paperwork. Yesterday was that time. I had a short window of time, so I took Rachel and Janneke to Port Dalhousie for a jaunt. We walked among the beach people, young and old, and the highlight for both girls was watching the seagulls.

Yes, those annoying birds are great for Rachel and Janneke. They have no fear, so they stand in front of the stroller and then at the last second, fly away slowly. A great scenario for children with delayed cognition! Two seagulls were therefore redeemed in my mind yesterday.

We are recovering from the pink eye and strep throat business, and yesterday, we all felt well enough to go to school, keep appointments, and carry on with daily stuff.

Yet, when you've been sick for a number of days, the piles of things to complete have multiplied, and, instead of feeling sick in the throat, you feel sick in the head. I know I have to take things one day at a time, but lately, those brave emotions have lost their stamina. My mind goes all over - how will we take care of these girls at home for the rest of their lives? How will we balance our time with the two youngest and the two older? What should we have for dinner tonight? (My menu planning ability has been zapped lately.)

I watch Janneke and Rachel as they finish their last feed now, and I pray that they will sleep through the night. They've been up so much, for different reasons - pain, needing more chest physio, or general upset-edness. Lack of sleep in the mom equals lack of healthy perspective. I am thankful I can call upon a few dear friends to pray for me when I don't feel strong.

I realize that in all of this, I must persevere... we must persevere. Ralph works hard to balance his work at school and his role at home, so we save his night shifts for the weekend. : ) Though I purposely avoid writing about his work because that is not why we started the blog, his job is a part of our juggling act as a family -keeping everything and everyone moving without losing our sanity.

Going back to God and asking Him to carry us through the daily stuff is key. I was reminded of God's sovereignty the other night listening to a great John Piper sermon while ironing. (Yes, I realize that sounds very quirky - it's either sermons or NPR podcasts. Gotta feed the mind and soul.)

Anyways, Piper reminded me that when Christ walked this earth, he didn't spend his time explaining all the "whys" or causes for suffering to his people and his disciples. Rather, he indicated God's purpose - that God has a purpose with everything, in all things. We might need a very long time (years) to accept that God's purpose is evident in suffering as well as in the good stuff, but the point remains. God is always present. We just might not have great vision.

Piper referred to the story in John when Christ's disciples ask why a certain man was born blind. I considered his reflections with our family and also with people we know who are dealing with difficult times. It was good food for the mind and soul.

Well, now the rain is falling and the thunder is rumbling. The formula is yet to be made and the girls' feed pumps just went off. Time to go back to work.

I realize some of us have had too much rain this spring for the fields, but I am hoping tonight's rainfall helps our little garden. Both Em and Soph have planted tomatoes and peppers (both of which they despise on the table) and cucumbers (garden cookies!). We picked up the plants from a lovely lady at the local market, so we hope for success - and no twisted carrots (like last year).

Peace for your week. We are always thankful for your prayers.

spot

pink eye, strep throat, and some salty chips

2011-06-16T21:18:00.002-04:00

As I prepare the girls for bed tonight, I laugh because Rachel and Janneke are still awake. Seems whenever I choose the cd "Romancing the Screen" -classical dollar store music which I think still sounds like lullabies, they stay awake. All other classical stuff they sleep right through.

They also make me laugh when they randomly touch each other on the hand or foot.

Looking back on the last ten days, sometimes my words get ahead of me, and I have to swallow them several times. The part about surrendering my plans and my ideas for how things should go. Even in the daily stuff.

It seems all four girls have been fighting something in this house. Both Rachel and Janneke had pink eye and some strange high fever. We thought Rachel's pink eye had cleared, but it reappeared, so we are on to different drops. Janneke is doing well, but now Em and Soph are battling strep throat- along with their mom. I don't like setting aside my plans to be sick and take care of sick kids.

I am thankful the nurses have still been coming to the home to help me out. (They do have the option of not coming when there is something contagious in the home.) The PSW cannot come until we are germ-free, so that makes for more work in the afternoons.

But, really, in the grand scheme of things, this too shall pass. So I will drink cold coffee for a few days to avoid the feeling of swallowing anything hot. And I do get to spend quiet time (reading Gordon Korman to them now) with my four girls. I just hope this virus or bacteria only affects females - I don't want Ralph to get sick.

Being sick on the couch is gets old quickly.

I splurged for two puzzle books while picking up meds.

In the middle of all of this, Rachel finished her preschool therapy program. She was not able to attend any of the program this week, so we unofficially finished last week, I guess. I wondered how I would explain this to my cognitively-delayed daughter, but she seems quite content to have more mom and big-sister time.

Her pink eye makes her glance look almost sneaky in this photo!

Look who is sitting without falling right away.

Rachel was well enough today to spend some time with her dad at the Holland-Bloorview Kids Rehabilitation Hospital, where they met with the saliva management team. Sounds impressive, but the summary: a lot of driving for a short conference. Though they raised their eyebrows at the amount of bibs we launder daily, they had the same three options McMaster had for us:

*Botox treatments that last three months and require general anesthetic

(of which she did not handle well the last time -see June 2010 posts)

*Surgery - for which she is too young yet

*Medications - with multiple side effects, given her condition

So, we'll sit on the decision for a while... and keep washing bibs. We are noticing more difficulty with their saliva management, so our paediatrician recommended Atrivent (a different puffer). We'll try the new ideas one at a time.

I guess we are learning that no one has really great answers to our questions regarding Rachel and Janneke's health. We have moved on into a chronic phase, as our GI doc says, where we will see doctors maybe every six months to once a year. The girls' care plan won't be quite so dramatic as the first three years of their life.

That sounds okay to me.

But, I also know that just when I think I've got things figured out or planned, life takes a turn.

So, I'll try to be patient as God shows us His plan.

In the meantime, I've got some salt and vinegar chips to share with Ralph tonight.

Peace for your week.

spot

living thankfully

2011-06-13T17:38:00.025-04:00

This past week was busy and eventful. Elma Regnerus followed me around for part of the day on Tuesday. She came along to NPCC, and took photos of Janneke in her physiotherapy session and Rachel in her preschool program. We hope to compile the photos into a story that can be seen on the web, but I have not yet made the time.

I did get a little side-tracked in the last seven days because both Rachel and Janneke contracted a fever, a virus, and a double eye-infection. They were not contagious for our first official AppealforWheels event on Saturday, but the day itself was only a brief reprieve from the fevers, pain, and sleepless nights. Poor girls! They are slowly mending as of this afternoon.

Last week, we had a technician visit our house from a local vendor specializing in medical/ accessibility equipment for the home, particularly ceiling tracking. To apply (or re-apply) for funding, you need several quotes from various vendors. (I am adding his quote to the others as I re-apply for funding.) Check this link for an illustration of ceiling tracking.

For my Star Wars friends out there, doesn't this photo look a little Senator Palpatine-ish? The specialized bath seat standing behind him gives the impression of a robe, or so I thought. If only we and our care team had Jedi powers to lift Rachel and Janneke, then the tracking wouldn't be necessary.

This past Saturday (June 11) was definitely the fun part of fundraising for our van. The afternoon was spent on the waters of Hamilton Bay, with maybe five drops of rain at most. It was exciting to see so many friends and family come together to celebrate with us and support us with our van fund.

The day included a jumping castle, face painting, awesome treats (thanks Van Houte Coffee and Spring Water Ice among many), games for all ages, amazing music, and a great place to explore. A huge thanks to our friends and family for organizing and leading this event.

Check out the first draft of our van - thanks to Jim Koorneef, Rhoda, Bernie and Donna. As soon as it was set up, Emily, Aleah, and Sophia were eager to try it out.

One of our VON nurses came along and did her share of explaining the girls and our situation to anyone interested. We had a number of families stop in who did not know us but saw the bouncy castle; curiosity brought them in further.

Matthew DeZoete and bandmates added to the festive atmosphere. Check out this link for info on him. (Yes, that's brother-in-law Johan DeZoete on vocals and drums.) We have listened to them perform at various venues in Niagara and Hamilton... so this was a treat.

And soon to be added to Matthew's bandmate list, our nephew Caleb. He certainly brought emotions to the surface for many of us as he very sweetly sang "You Are My Sunshine" to Rachel - though she slept through it. Caleb, his parents, and friends provided music after Matthew's set. Also a treat for all.

The not-always fun part of fundraising is the emotional journey we find ourselves taking, now that we have opened up our life and hands to our greater community. When people give, it is both humbling and amazing. We will try to thank those we can, and for those who give anonymously, we promise to LIVE thankfully, giving God the glory and paying it forward when we can.

We are not begging, but sometimes those feelings of being vulnerable in the appeal seem nearly as humbling. In the last few days, we have received some very significant gifts of money for our family. This huge jump in the amount of money raised has challenged and blessed our family. It has been an emotional couple of days; though life has often felt beyond our control, God has promised to be faithful, providing for us when we least expect it. Yep, that makes us cry.

At the same time, we were recently turned down by March of Dimes for funding for ceiling tracking. Apparently our family does not have significant need for tracking - as their letter states. We were puzzled by this, especially because we have been advised by our NPCC team and CCAC case manager to put this in the home, but after chatting with our doctors at Mac, we learned that many funding sources will come to your rescue often only when you are at a crisis point. I don't think I want to know what that crisis point looks like.

We will continue to seek other sources of funding, but at the same time, we are well aware of how our community desires to support us. This brings relief.

We are blessed and encouraged by the letters and gifts of support from our extended community. In addition to the official events from the website, there have been other informal but equally appreciated opportunities of care: Jim and Joyce Koorneef's anniversary celebration (in lieu of gifts, our family was the recipient of well-wishes), and Bernice (Ella's mom) is donating her portion of all her Norwex sales for the month of June to us, to name just two.

We look forward to using the amount raised to provide better care for our family - a wheelchair-accessible van, and if there is money available, home modifications as well.

In the meantime, Rachel finishes her preschool program this week. She was not well enough to attend the program today, but I hope to bring her for her last day on Wednesday. The program has been amazing for her, and many new connections for both Rachel and for me have also been created.

Janneke will continue with physiotherapy through the last week of June. For July and August, we will take a break from NPCC - or they will take a break from us!

Emily and Sophia (and Ralph!) are counting down these last two weeks of school. Yes, MN friends, we are still in school. Crazy, eh?

At the end of the month, Rachel and Janneke signed up to run the 10K for the Grimsby Peachbud. They will need a push, so I will go along with them - and coach Fraser. Who else is running?

Peace for your week.

spot

limitations vs potential

2011-06-06T09:00:00.005-04:00

This past weekend, I had a chance to visit with some of my dad's extended family. I reconnected with Chantal, the daughter of my dad's cousin Esther. It had been a long time since we last saw each other, and I was so encouraged by her.

When Chantal was quite small, she would spend a lot of time at our house with my parents and siblings, to give her mom a bit of respite. I remember watching her and interacting with her, mindful of her limitations. I remember thinking about all the things she was not able to do.

Time passed. I left for university, married life, Minnesota, and family life. How amazing it was to talk together now and learn about all the things Chantal had accomplished. I learned about all the opportunities God had blessed her with - and the tremendous potential she has. (Check out her brief interview with Joni E. Tada.)

I reflected on how I used to view Chantal through the lens of limitation, but now I know that I was seeing so dimly. Reminds me of a verse in scripture.... someday we will learn how dim our perspectives are in all areas of life.

Chantal gave me much encouragement. I knew she wasn't going to mince words - she was going to be very genuine because she knows this journey from a very unique perspective. Thanks, Chantal. You were so good for my heart.

Surrendering what we think are limitations and asking God to show us the opportunities is not easy. His opportunities usually take us in a completely new direction... trusting Him with my life is a conscious daily choice.

Em and Soph came along with me, and though they enjoyed the day, they were thrilled to see their little sisters again.

Both Em and Soph have already scored goals in their soccer games, so they are more than excited for the rest of the season. It has worked to take the whole family to see a few of Sophia's games because she plays within walking distance of the house. Each time we go, Emily talks to me about when Janneke can play soccer in the Pacer. Talk about reminding me to look beyond Janneke's limitations!

We are excited to attend the first official event of the Appeal for Wheels in Hamilton this Saturday afternoon. Click this link to learn more. We are more than humbled and grateful for the outpouring of support so far for our van. Our extended community of family, friends, and friends-and-family-of-friends is amazing.

Peace for your week. See some of you on Saturday!

spot

P.S. Thanks for the bibs, Aunt Alida. Your timing is perfect - and the bibs fit well. Yes, I love the new material, and if there is a moisture barrier with that new stuff, I think you might have discovered the superbib. Patent to follow, right? And thanks, great-cousin Corrie, for your machine.

soft feet

2011-05-31T22:06:00.009-04:00

I call her "Velvet Feet" sometimes. Other times, it's Ray-Ray or Ray of Sunshine. Tonight, Rachel and I chilled on the front deck after supper - me with my coffee and Rachel with her feed pump. (Janneke was napping, and Ralph was with Em and Soph.) Rachel's feet are truly soft and velvet-smooth. A bit bittersweet: Her feet are so soft because she doesn't bear weight.

Her AFOs (UFOs? see a previous post) are not the right fit, so we are back to the drawing board with casting and new footwear. Unfortunately, that means any foot range we gained with the serial casting has probably gone away. We hope she will regain more flexibility and range with the new plan.

It was a hot day today over here in Niagara. Wow. Hard to believe it was so cold not too long ago. These seasons keep life interesting, eh?

Tonight, the four girls enjoyed some time together on the swings. It was one of those 30 minute blocks of time that I wish would last so much longer. Em and Soph filled my ear with stories from school and questions about the plants in our flower beds (I'm clueless!). Rachel and Janneke loved the swinging movement while listening to their sisters' chatter.

Soph wanted to climb the "banana" tree. I have no idea what this tree is called. I'll have to ask Paul DeVries the next time he stops in. The flowers look like little bananas before they completely open. That's the extent of my horticultural expertise.

This week includes a meeting with the dietician and a visit to the paediatrician at Mac. So far, all of our appointments have been continued assessment and follow-up, nothing of great concern. I have noticed that Janneke has more reflux in the morning, but that might be solved with a simple med adjustment.

Soon, there will be a photo story on the AppealforWheels website; the photos that Elma took (and a few more yet to be taken) will be compiled into a video that will tell our story.

Here is another shot from our session. Janneke typically falls asleep in this fashion, with her hands grasped tightly together and high in the air.

We are thankful that things continue to go well here at home this week. I wouldn't mind a bit more sleep and less laundry, but there is so much to be thankful for that the little issues stay little. I feel as though we are slowly entering a chronic care routine, a normalcy that includes predictable behaviours and schedules. I only dare myself to consider the future once in awhile. Sometimes, those moments come when I am answering questions about the need for a wheelchair accessible van when our girls are so little.

But, we trust that we will continue to be cared for - come chronic or acute circumstance. He holds us in the palm of His hand.

Have a good couple of days. Tomorrow is June!

Peace.

spot

new photos

2011-05-29T22:02:00.015-04:00

Last week, we were blessed by Elma's gift of photography. We set up two sessions where she could come and observe our "normal" daily routine. Hopefully her collection of photos will help tell our story. Elma, thanks again. So much.

When I had a chance to review the photos, I did a lot of reflecting. My wish with the photos was that we would remain real and true to who we are. I don't want to become a masochist parent (check out Ian Brown link on the side bar) where our two kids with special needs become everything we are. I don't want to sacrifice their dignity or our family's privacy for the sake of gaining more attention.

Rachel and Janneke are part of our family, yet our blog does focus on them. But, each time I consider resigning the blog, I am told by more than one person how our experience gives them a glimpse of what they would otherwise not know or consider.

I guess it's about balance: We want to share our story to stay connected with our extended global community, yet we don't want to create a sob story or paint a pity picture.

We ain't looking for pity.

I guess it's about sharing the determination to find joy in the daily living. The whole make-lemonade-out-of-lemons idea.

But, it's more than just a cold drink. It's a way of life built on the hope that God will be faithful each step of this journey.

(Hooray for nurses who don't mind photos while on the job.)

I hope to compile the photos into some type of story format. Our hope is that these pictures will also help our community understand our needs. We are thrilled and humbled and thankful for all the support raised so far for our accessible van. We look forward to meeting and seeing many of you on June 11 in Hamilton. Check the website for details as they unfold. We have been touched by the notes that have been sent to us via family and friends. Thank you.

So, another week is here. This week, I will wade through paperwork for the second attempt to obtain ceiling tracking and adjustable beds for Rachel and Janneke. Emily got her bike, so I look forward to a ride with her sometime this week. Both Em and Soph started soccer, and we are enjoying the excitement at their games.

Can you believe it will be June this week?! Though it has been raining a lot (too much?), we are so thankful for the warmer weather. This means time outside for the whole family, the 4 o'clock feed on the front porch, and fewer steps in taking the girls to NPCC (no coats and hats!).

Peace for your week.

spot

our holiday weekend

2011-05-24T22:11:00.024-04:00

So, I took Princess Janneke for a walk this morning before her physio appointment. Next to NPCC is the Glenridge Quarry, a nice, quiet place to walk instead of alongside the busy roads. Sure, it used to be the dump, but it's been redeemed. Now it's a sanctuary for birds and other small wild lives.

Not that it's safe for all animals. This was a lucky snail; around this time of year, there is a constant crunch sound of snail shells being, well, crunched by feet and wheelchairs. I try not to think about Franklin's friend, Snail.

I encouraged Janneke to touch different things, but she was content to look only. She loved the sound of the birds, and she made her own chirpy sounds - rare for her and music to my ears.

Speaking of the nature of things, the nest outside our back door grew from three eggs to four... and then, the next day, the nest was no more. Some squirrel pillaged and stormed the nest. A sad day for my Sophia who was hoping to see the baby birds.

This past weekend, we enjoyed the holiday (Victoria Day) and warm weather in the hills of North Effingham, here in Niagara. A busy place in the summer, complete with water park and trailer park, in the off-season weeks like last weekend, it is a nice, quiet spot close to home.

Ralph had Emily and Sophia for two nights with six other families in cosy rustic cabins. Both Emily and Sophia loved playing with the all the kids (I lost count after 20), making Narnia-esque forts, playing Capture the Flag, and staying up late to watch fireworks. I took Rachel and Janneke for an afternoon visit, and Ashley (respite worker) stayed with Rachel and Janneke at our home for one night, so I could enjoy a night in the cabin too.

Photo from the weekend: Rachel is more apt to give her serious look these days.

Doing the split-family holiday thing is not preferred, but it works. Taking the entire family away from the house is a big deal, no matter how far or close we travel. Feed pumps, chairs, meds, and everything else take up space and energy. So, a visit for a couple of hours is manageable.

When we are away with just the four of us - Ralph and I with Emily and Sophia, there are complicated feelings that surface. This past weekend, I was caught off-guard by my emotions as we were eating supper (without Rachel and Janneke). I found myself emotional because I was enjoying my time - instead of watching the time. It's not as if I don't get a break from our home and the girls on a regular basis, but when we physically step away with the four of us, it is remarkable how relaxed we can be when we are not hung by the care plan.

We are also aware of the differences between our kids and other kids. This is where I know our older girls miss having friends who have siblings with special needs. Thankfully, the children of our friends are aware of Rachel and Janneke, and they don't hesitate to talk to them - or ask me blunt questions.

I prefer that to ignorance. I loved watching our friends' kids randomly wipe Rachel and Janneke's spit. I loved watching the kids talk to Rachel and Janneke, causing smiles.

Yes, I secretly complained a bit about all the work involved with packing the girls up to visit the cabins, but I knew it would be worth it in the end. If I were to take the easy way out and keep Rachel and Janneke at home all the time, our friends would not have a chance to interact with and remember our girls.

We gotta keep showing up.

It's part of persevering in this life. Giving thanks and choosing joy in the circumstance, even when we feel like complaining about the work involved - or how envious we might be of families whose kids all walk and eat.

Now we are into another week here. Track and Field Day is tomorrow at school, and the weather looks promising.

Oh - something that was missed: Rachel has been accepted for SK in the fall at the Niagara Peninsula Children's Centre School! She will be part of the afternoon ELP program, and, as crazy as this seems to me, a bus will pick her up and bring her home. Gulp.

We are very thankful for this news. We were really hoping she would attend NPCC School, for that seems to be the best option, given her strengths and abilities. As much as I am nervous about the bus, apparently, that is the favourite part of the students' day.

Hope your week goes well. We keep on striving, knowing that God has the future in His hands.

spot

time management

2011-05-18T22:06:00.027-04:00

Check out our new nest! Another spring, another nest of eggs to watch.

So the song goes: It's raining again... (Supertramp). I am not complaining though. Reading stories from Quebec and Slave Lake, Alberta reminds me that a bit of rain is not worth the whine.

Today was a day when I wish I could sit down with Pa Gilbreth. Allow me to explain.

I took Rachel to see our orthotist, Mike. He has worked with Rachel's feet in the past years, and he fashioned new AFOs for her feet. These appointments are ultimately helpful because Rachel is sent home with splints for her feet (AFOs) that help her with weight-bearing.

(Actually, Sophia says it sounds cooler to say Rachel gets her own UFOs.)

I am thankful for the splints, but the appointment today was approximately 85 minutes long. Don't misunderstand me - Mike does well. He has to fit them very specifically to Rachel's feet. And Rachel's feet are not easy to fit.

My desire to sit with Pa Gilbreth comes from the intention to make the most of my time. I go "squirrely" sitting in a room, watching Rachel sleep, chatting with Mike as he pops in and out of the room, making the necessary adjustments... There is a fan humming in the room, and as I try to read through the local newspaper, I find myself dozing!

Waiting is a skill/task/job that seems to be a part of my life, whether I like it or not. Pa Gilbreth, a pioneer of time and motion projects, would give anyone good advice on how to best spend their minutes. (Read the book Cheaper By the Dozen.) I feel like my time is too precious to be wasted sleeping in the office for prosethics and orthotics. I wonder what timesaving measures he would have suggested - bring the laundry? learn German?

Here are a couple of photos:

This is Rachel's grimace. It appears to be a smile, and she often laughs too, but she is actually in pain or extreme discomfort while Mike manipulates the splint for her foot.

Success! We have a new set of AFOs.

And we have one very sleepy five year old.

Yesterday included a similar waiting game as Janneke's physiotherapist (I tried to help) spent an hour readjusting her walker, so that Janneke would have better posture while walking. In this first photo, she is standing so well, but seems to be missing something...

Oh, yes. Her drums. Now she drums and dances throughout the house.

With the rain, Em and Soph are inside again. They decided to fight the rainy blues by entering their little sisters on the Wii. This was entertaining, to say the least. To register as a Mii (the Wii characters for the games), you have know your height and weight. Em and Soph did their best to measure the height of both Rachel and Janneke, and the Wii program (with the Wii board) weighed them in. Apparently, Janneke is too young to play the games. But, her little Mii crawls! Em and Soph thought that was great.

Back on the topic of time management... In the next few weeks, there will be more appointments, so I better make the most of my waiting games.

I am actually looking forward to our visit with the Drool Doctor (the saliva clinic at Bloorview in TO). Though our appointment is for Rachel, we hope to bring Janneke along as well. We have spent more time each day doing chest physio with Janneke to help her manage her mucous. She gets quite distressed, and we alternate with suctioning and puffers to help her manage her airways. Rachel is going for obvious reasons, but we do feel that Janneke's needs are also worth mentioning.

On a different strand of thought, the fundraising fun is contagious! Please check out the link on our blog, and if you go to the "key" link, you will see that a significant amount of money has already been raised! That is humbling and wonderful all at once.

We hope to post updates soon about the fundraising, including a story about a former student of mine, Kelly, who has her own ideas to add to all the plans. How amazing is our extended circle of care for our girls!

Peace for your week.

spot

a few photos

2011-05-14T16:32:00.015-04:00

Hope things are going well for you. This morning, I took Em and Soph for a little time away, and one of our stops included the New Hope Bike Co-op (part of a community church in Hamilton) where we found a purple bike for Emily that matches her new purple eye glasses. Once Brad updates and fixes it, she'll be riding all summer long!

Here's a couple of photos from the week:

We were at Ella's fundraising garage sale last week, and we found this lamp. It has captured Janneke's attention ever since, and it soothes her restlessness in the evening. Nice that all three girls (Ella, R and J) benefit from one lamp.

With the warmer weather this week, I had the girls on the front porch, watching neighbour Austin play. I also had some fun blowing bubbles for them; their anticipation was encouraging.

Recently, Janneke figured out how to shut the doors of her little toy. We call it her job. Not sure if Rachel is impressed with Janneke's new skill.

And what to do on a rainy afternoon? Make faces with your sister....

Or just crawl into a fort (aka a large box) and hang out.

Peace.

spot

a reflection and some lost ducks

2011-05-11T22:00:00.001-04:00

Soccer practice - and a lovely chat with Nadia while sitting on green grass.

It's a been a few days of quiet since the busyness of last week. We are so thankful for the support raised at our first fundraiser; this is a great start to our plans for the van. We are humbled by the generosity and encouraged by the enthusiasm. Please click on the link to the right (appealforwheels logo) to find out more info.

Admittedly, these last few days have also been a bit heavier to carry. I think part of the weight comes with recuperating from all the excitement of last week (radiothon, van fundraising stuff).

I've been thinking about this idea a lot these last few days: The truth sometimes hurts.

We talked with Emily and Sophia about the radiothon, and they both commented on how it was hard to hear me talk about their sisters - about what Rachel and Janneke can't do, about their mysterious syndrome, and about our daily routine.

I guess, when you are living in your "normal," you don't notice how difficult things might be until you have to share it with those who don't know the story or don't understand the story. Maybe that's why I feel more reflective these last few days.

The truth can hurt.

These last few nights have been challenging with Janneke as she seems to be dealing with so much saliva again. It is hard to sleep when you worry about your baby managing their mucous. We do sleep -but not enough. We are thankful for Benadryl, puffers (Salbutamol and Flovent), a suctioning machine, and bed pillows that provide proper positioning. She also has less trouble with all the mucous when she is upright in her walker.

(looking through the screen) I think she is quietly calculating how she can pop over the lip of the sliding doors and bust outside.

When I sit with Janneke in the night, helping her cough out whatever is stuck in her throat, and I watch Rachel (sleeping or grinning through her drool), I feel the heaviness. It is hard to capture the heaviness in words.

Yet, the truth brings a certain freedom, beyond the hurt. It's as though I need to acknowledge that there are crappy days, crappy moments, and then I more deeply appreciate the sunny afternoons, the stories of Emily and Sophia's school days, and the excessive amount of geraniums we potted yesterday for the porch (because that's the only flowering plant that I can keep alive).

Taking it one day a time is a phrase that marches through my head. It is hard to get out bed on some of these days. But, we do. We believe God gives us the grace and the joy when we least expect it.

Peace. Sterkte.

spot

P.S. These ducks have been wandering through our neighbourhood, looking for a place to call home. Reminds me of Make Way for Ducklings, a favourite storybook in our family.