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.

1 comment:

anya genevieve said...

how cool the picture of your ducks!! here at my building in waterloo we have a threesome of ducks as well, year after year, that make a garden and lay eggs and every year its the same three ducks - two males, one female... i'd say she's a lucky duck but that's just too corny...

anyways, i can totally relate to the one day at a time, the days where things seem so blue and so rough and then the good days and how despite how crappy it is to feel such pain and sorrow it really does allow us to see the good, the small beautiful things and appreciate them much more than i think we would if life were not such a struggle. a quote came to mind, one that i have used as a support for many years and hadn't thought of in quite some time and then had it pop back into my head a few weeks back and now have it up in my kitchen on my blue board.

"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying 'I'll try again tomorrow'"

You are close to my heart and in my prayers... anya