Tuesday, May 31, 2011

soft feet

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!


Sunday, May 29, 2011

new photos

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.

Tuesday, May 24, 2011

our holiday weekend

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.


Wednesday, May 18, 2011

time management

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.

Saturday, May 14, 2011

a few photos

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.



Wednesday, May 11, 2011

a reflection and some lost ducks

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.


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.

Friday, May 6, 2011

every little bit counts

How sweet is the sound of cousins singing Happy Birthday over the phone! This was taken while cousins Luke and Kyle Gibbons chirped their congratulations - met with obvious joy.

Yesterday was the NPCC radiothon, and we are thankful with the NPCC community to share the final amount raised exceeded $160,000. It was exciting to be a small part of this event, and the $1,300 many of you contributed was greatly appreciated. With the cupcake sales and Smudge Fundaes concert at Beacon Christian School, the cups of loose change collected at various businesses, homes, and schools, including the three Schouten children selling plants in their neighbourhood, we hope more awareness of and commitment to the NPCC is generated. Niagara needs NPCC, and NPCC needs Niagara.

God is doing amazing things through the NPCC. No denying that.

We enjoyed hearing the stories from other families, and I had a chance to share our story over the three stations. Hopefully, these stories create awareness and commitment.

Here's a couple photos from Janneke recently:

We either have to consider another stander or work on manipulating Rachel's stander, so that both girls will have "standing" therapy each day here at home. Janneke continues to surprise us with her weight-bearing skills!

The fact of bringing that loose change reminds us all that if everyone helps - in big or small ways - all those little bits create one significant contribution. Every little bit counts.

And here's where those little bits start for our family:

Tomorrow is our first fundraiser for our family van - a garage sale in Manheim (Kitchener, Ontario). Every little bit counts here. I just spoke with Michelle (sister-in-law), and she shared many people have helped to bring items for sale, two classes at Laurentian Hills Christian School that have contributed with baking and other items, and generous neighbours who even don't know our family have also helped. Awesome. Humbling.

I've set up a link next to our post that will take you to our van fundraiser website. It is in its infancy stages, but in time, we will have posted the various fundraising events to take place here in Niagara but also in Hamilton. There is a lot of fun planned!

The details for our need for this van will be shared over time, but the reality remains: Our family needs a wheelchair accessible van - a van that can accommodate two wheelchairs, two caregivers, two parents, and two awesome big sisters. The van companies we have talked with all point us to a Sprinter.

So, here's a photo from a service truck in our driveway. While our chair lift on the deck was being repaired, I took a photo to help visualize the possibility. I think it helps you get the idea.

Allow me to clarify, this is not Ralph and I planning - we have a very special team of family and friends who are coordinating all the work. If you have questions or wish to help in some way, you can connect with us, or you can connect with our team (info@appealforwheels.com). Sometimes, a healthy distance makes things a bit simpler.

We are humbled by all the excitement, but we are so thankful for the support. We look forward to sharing this new part of our journey with you.

In the meantime, we are still taking life one day at a time.

Peace for your weekend.

two someones who can't wait for warmer weather...