Thursday, July 29, 2010

what we miss and what we have

This week, we had the chance to spend some time with two of our nieces, my sister Jessica's two daughters. We made some neat memories with Nella (3) and Aleah (1), and we also experienced a catharsis of sorts.

It's as if we caught a glimpse of what we miss. These little munchkins are close in age to our Rachel and Janneke. Watching them hop, jump, yell, laugh, sing, and eat reminded us of what Rachel and Janneke don't do.

And I am not saying this in a sorrowful moment or in an attempt to draw pity. It's almost factual. For myself, I had a time to grieve again -and that was a good thing. For Emily and Sophia, they had a chance to do the things they wish they could do with their sisters. Not that they don't love spending time with Rachel and Janneke, but there was something special this week about loving and hugging little girls who love and hug back.

Yet, the best part? We love Rachel and Janneke all the more. And we learned that love and fun come in different ways. It isn't just about what we miss, but it's also about what we have.

Emily took this one of Mom and Rachel

Emily took this one of Mom and Janneke

Emily and Janneke

God knows the journey. And He blesses us even in our sorrow.

Another photo from Emily.



Wednesday, July 21, 2010

rolling along

So, you been movin' long?

It's a beautiful July night. The humidity is not so bad, and you can even sit out without getting bit by the bugs! Ralph is back from Bowmanville; we survived his absence - but one poor mouse did not (six traps vs. one mouse). As an extra treat, we celebrated a wedding this past weekend with two wonderful people (and all the great guests!); it was so fun to step away from our home and share their joy.

Rachel and Janneke have had a vacation of sorts from appointments. That is appreciated! We are still concerned with the reflux problems for both of them. Their inability to swallow consistently makes things complicated, and both girls often deal with formula coming up the throat and onto the bibs. This distresses Janneke more than Rachel. She is often upset at night, so we are exploring ideas on how to help her. The most obvious is to adjust her meds, but that will take time before we see much change. I wish we could do more.

As Rachel transitions into her preschool program this fall, we will be saying good-bye to our physiotherapist, Nancy. She has been wonderful with Rachel, and she will continue to work with Janneke. She and I have swapped running stories, and she has patiently listened umpteen times to me babble while Rachel stretches. Nancy always talked directly to Rachel, and, as time passed, it was as if Rachel began to understand the conversation. Thanks so much, Nancy.

What is summer all about? Losing your teeth, ice cream cones, sleepovers, and chillaxin' in your pajamas all morning. At least, that's what the kids say.

Another cardboard box gem: A submarine! Thanks, Alanna.

What is so nice to receive? A hand scrunching hug from your sister who used to shake and pull away from touching things.

As parents, we too can share our kids' joy for the summer fun. Even though there are still the adult responsibilities - the kids need to eat and Ralph works on school stuff - we can appreciate the extra spark of energy we all seem to have. We can tube-feed outside because it's not too cold, and we love watching our four girls interact (without school and appointments crowding them out). So we give thanks for a couple of good weeks, and we look forward to more.


Monday, July 12, 2010

It's been almost two weeks since the last post. We managed to slip away for a family holiday at my parents' cabin in Point Clark for 8 days. We spent part of our time with friends, managed to convince Ashley (caregiver) to stay with us, and we finished our week with some of my extended family joining us.

On our last day, we drove our van as furiously as we could while pulling a camping trailer that had three bikes and two IV poles on top to Niagara to catch the final World Cup game. The Dutch defeat did not crowd out our joy for a good week away, but a win would have been a great way to finish our holiday.

Here are a few snapshots of the week away:

Hooray, Hooray, we got away!

She crossed her feet all on her own on the ball. Such a natural.

Hooray for Holland! (Tuesday's match)

A walk in the rain to cool off from the oppressive humidity

Big sister Emily giving Janneke a flush while we drive - to avoid extra stops.

A glimpse of Sunday's game -
the little conquistador (Matthew) scores on the Dutchie.

Chillaxin' with Ashley in the hammock.

What vacation isn't complete without several trips to the local laundromat? The dear ladies at Penny's Laundromat in Kincardine noticed that I was washing only bibs (finishing the drying on the line at the cottage), so when I returned for the second washing later in the week, they took the load, washed, dried, and folded for a special price. Love that! Crazy fact: We used more than 150 bibs in 8 days.

Now we are back at it again. Ralph's in Bowmanville for the week (work-related), Janneke had another hearing test today, and Rachel's dealing with some pain related to her g-tube. Nothing too serious, but I hope she mends soon. Thanks to nurse Betty and Kirsten, the pile of laundry are much smaller tonight. Em and Soph are busy with soccer and sunshine, but they miss the cottage already. To brighten their day, tomorrow cousin Alanna is coming over to make another submarine out of a new cardboard box.

Peace. Have a good week.

And healing to you, our favourite Caleb Brand.