Sunday, June 26, 2011

to hear the sea-maid's music

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.

Tuesday, June 21, 2011

getting by

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.

Thursday, June 16, 2011

pink eye, strep throat, and some salty chips

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.

Monday, June 13, 2011

living thankfully

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.


Monday, June 6, 2011

limitations vs potential

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!

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.