Monday, April 25, 2011


We had cousin Caleb over the other day, and he was singing and swinging with the girls. I couldn't help but notice the beautiful crop of hair on his head (growing back in after losing it during treatment), and I couldn't help hearing his song - about miracles.

He was singing about God making miracles. I couldn't recall the song, but the word miracle is still in my head today.

Yes, miracles still happen. Miracles might not always be sensational, and I need to be reminded of that. Miracles remind us to be thankful.

We are thankful that Rachel is showing interest in weight-bearing and movement. Sure, she doesn't move more than a step in twenty minutes, but she is happy and showing interest.

We are thankful to witness Janneke zipping around the room in her Pacer, chasing her current favourite toy, a set of drums. Her recent skill of going to the door, as if to get outside on the driveway, is evidence of a personality that won't be limited to her disability.

We are thankful we did not spend time in the hospital this Easter. For the last two Easters, we've been in the hospital with Janneke - 2009 for the aftermath of her birth and 2010 for her seizures.

This photo appears clinical, but we are so thankful for homecare and medical advancements for kids like ours. This was taken when our homecare nurse was flushing Janneke's portacath - while she was being fed through her g-tube. We are so thankful so much can be done at home.

We are thankful for our church family, for their willingness to learn alongside us, for the love and concern they show. Last week, an older couple came to us and said, "Your children, all the children here, are so important to us."

In this photo, Mendelt is directing the children as they sang on Easter morning. He had a little help from Rachel who supervised the whole business. It took some help (thanks, Boks family) to get the equipment to church, but there's something special about having Rachel stand with her peers.

And above all, we are thankful for grace and joy. It's no accident that Rachel and Janneke carry those as middle names. We are given joy for our journey through His grace, evident on the cross and alive in the resurrection.

So, we might not always get it right. And there will be crappy days.


We know how this Story ends.

Peace for your week.

Sunday, April 17, 2011

More tales

A pigtail kind of day...

Do butterflies have tails? Well, whatever the case, our visit to the Butterfly Conservatory in the Falls was quite exciting for Rachel. We joined our JK friends from Beacon for a morning adventure on Friday.

How do you feel about a flutterby on your head, Rachel?

Looks like an arms-length away is preferred.

A butterfly kiss!

And there was so much to see! The whole group was excited to have Rachel join them, and I noticed how accustomed they have grown to Rachel. The girls were forever wiping her drool, changing her bibs, and coming over to kiss her. Our friend Thomas would run back to check on Rachel if we were lagging behind the group.

I didn't think too much of this until we passed another school group of little munchkins who simply stared at Rachel. I decided not to interpret this as rude but mere curiousity. I think it is easier to handle the stares of small children than the stares of grownups - who are trying not to stare.

I love being with kids who are used to Rachel and Janneke. I take for granted that our NPCC friends, our school community, and our church family love our girls and are used to them. I am reminded of how great this is when I take the girls somewhere new. The stares, pointed fingers, whispers are not always easy to tolerate.

I much prefer the little boy at the Conservatory who walked out at the same time we did and turned to me to ask, "Why she so grumpy?!" And then I told because she didn't know who he was. A short conversation continued.

Yet, the mom was in a hurry to go. I kind of wish she had the time to stop and use the opportunity to share.

Something else I thought about today, thanks to Pastor J's message this morning. We talked about being content. I thought about the many times when I almost holler at God for peace. It's those moments when I wish He would change my circumstance, but I know that He will provide peace and strength instead.

Yet, it's not just a gift, it's also a discipline.

The author writes: "I have learned to be content in the circumstance" (Philippians 4). This discipline is not crafted of our own ability, but, as written further in the same passage, we can do this through His strength.

No matter how much I think I can "make it work" with friends, family, resources, the reality is: I need His strength. My own wits won't last.

Not always an easy journey, this life, eh?

Speaking of other things that won't last.... this fort had to be taken down or supper would not be served. I know, I'm mean.

As an aside: My cousin Brenda is running the Boston Marathon to celebrate her 40th birthday. Now, that's discipline! Run and enjoy, Brenda!

Peace for your week.

Thanks, Kelly VT, for your photos!

Monday, April 11, 2011

spring fun

Yesterday was another spring teaser with summer-like temperatures and beautiful sunshine. Time to pull out the trampoline!

Neighbour Alexa wandered over to give Rachel and Janneke some stepping help in their Pacers. How refreshing to be spending time outside again - basketball, the trampoline, Pacer time, and Vitamin D therapy.

Love this love.

And you think Rachel was a little happy to be in her swing again? I'd say she was ecstatic.

The funny part? Janneke sitting in her too-small swing next to Rachel, watching Rachel swing. I almost felt as if she was sending jealous looks.

And we had a happy almost-five year old tonight whose casts came off (thanks to neighbour Dennis's tin snips). She had a bath, a massage, and lots of smiles right before bed.

Mind you, she's been very tolerant of the casts so far. Tomorrow is a new cast day; Kirsten is coming along to support Rachel while I take Janneke to physio. Another busy day at NPCC.


Saturday, April 9, 2011

hair tails, heroes, and a run

A couple of firsts this week.

Pigtails - thanks to Nurse Betty.

It was Abby's turn to sit beside Rachel in JK. They both happened to have tails.

Superheros - thanks to our neighbours, Alexis and Austin.

Within days of posting the Change Crusader info, we received the first jar of change for NPCC. Rachel has her "I dare you" look.

A run.

Rachel made motor sounds with her lips the entire run. It went well, and once I deal with some stress in the left shin, we are good to go for races this summer. More kms for NPCC!

And though we had lots of fun signing Rachel's casts the first year of her life, it was extra special to have new friends sign her legs. Each week, there will be new casts, so the signing novelty will probably wear off. So far, she is tolerating her new boots, and we hope the whole process will help her with weight-bearing. She is much heavier to lift, but I am thankful she shows no signs of stress.

Thomas took this job very seriously as he spelled his full name on her boot. He was so patient afterwards with Rachel; as he talked with her, she kept spitting on him. He kept wiping his arm and face without complaining. The kids are learning that Rachel communicates with spit and sounds from her lips.

Enjoy your weekend. Need a cup for that loose change?


Tuesday, April 5, 2011

A cup, a new pair of boots, and a disco ball

So, I've got this idea....

This month is Change Crusader month, a time when you collect your loose change to help change a child's life at Niagara Peninsula Children's Centre. It ends on May 5 with the annual radiothon lead by Astral Media.

If you want to collect your loose change, you are encouraged to visit one of a number of locations to sign up and pick up your change bag.

But, I got to thinking. What about all those well-meaning people who don't have the time to pick up the change bag, or they simply forget?

That would be me if circumstances were different.

So... I made this ultimate coffee cup. The lid is sealed on it, and there is a coin slot on top. And it's compostable! Go green.

I will make you one of these cups. If you want my kids' photo on it, I'll do that too. Set it in your office workroom, your desk, your house, or somewhere else visible. I'll bring the cup to you. I'll pick it up the first week of May. Contact me. I would love to hear from you.

At a time when our lawn signs divide us and we consider casting our votes (another election in Canada!), we can do something together.

And speaking of casting.... okay, that was a terrible transition:

Rachel started serial casting today. For the next number of weeks, she will have her legs casted to help manipulate the foot into a "normal" position. This was done before, but we are trying again. Her feet prefer the clubbed foot position, but that does not help her bear weight. Each week, the casts will come off and then be immediately replaced with new ones. All this is done at the NPCC.

And no, she did not show signs of pain with this procedure. The casts are made with careful consideration to her threshold of tolerance and pain.

These boots are made for walking....

After our morning at NPCC, the girls napped, and later, we had another wonderful music session with Mendelt. Rachel is positively joy-filled when he plays and sings with her.

In the meantime, Janneke figured out how to grasp a hanging disco ball. Good times, good memories.

Hope to hear from you.


Monday, April 4, 2011

ferry and fun

Sombra Ferry - to Marine City, MI

Some time away is a good thing... Emily, Sophia, and I went with my sister Rhoda to see family in the Detroit area - for one night! My brother Dave and his wife Jodi had their youngest, Julia, dedicated in church on Sunday morning. My parents were also able to be there, so it was a nice little family retreat. Ralph had Rachel and Janneke at home, and we were thankful that both Ashley and Christina could help out at home too.

A half-family holiday brings complicated feelings for me and for Em and Soph. We appreciate the break from the feed/med schedule. Actually, it is amazingly freeing, but we all miss the other half of the family.

Both Emily and Sophia spent a lot of time playing with their 7 month old cousin - such a happy little one! I can't ignore the obvious differences between my niece and my youngest two, but it is comforting to see Emily and Sophia being equally doting with Rachel and Janneke as well as Julia. I had to laugh at myself when Grandma first handed Julia to me to hold: I automatically reached in to protect her g-tube and portacath.... which she doesn't have. I am just too used to that with my girls!

And when we return in the middle of the snowstorm (!), I was greeted with cheery smiles from Rachel and Janneke. Love that.

Janneke usually shows just a glimmer of a smile, and the photo of Rachel was taken just as I peered into her bed.

So, another week begins. We've polished off the chocolate Goldfish crackers already (only in America, eh?).

How to have fun with Janneke: Wedge a balloon in her Pacer and watch her try to alternately kick it out and push it out.

Rachel's latest trick: Biting her bib and grinning at the same time.

Don't forget to set aside your small change and be a Change Crusader for NPCC this month!