musing and missing sleep

We're still vertical.

It's been a long couple of days.  Both Ralph and I were saying the other day that bringing Janneke home from the hospital this time feels like bringing a newborn home - the first born, when you had no clue what to do with this flailing infant.

(So, she's not exactly flailing here; maybe it's me whose arms are flailing.)

Janneke is still Janneke.  She has her quirky moments, but she is also dealing with a nasty virus from the hospital, the continuous feeds, and the new medication.  There are many children who function quite well on continuous feeds, but often it is for digestion.  To keep her continuously fed simply to avoid her sugars dropping is a bit intimidating.

She is still not being fed the complete amount of calories that her body needs because she can't seem to tolerate that much right now.  Her feeds are essentially very watered down, to keep her hydrated.  Hopefully, this will change.

In the last few days, I have struggled with frustration and anger, not helped by the fact that we are not sleeping much at night.  Janneke has kept us up for various issues, and sleep deprivation is a prickly companion.

I am frustrated with the reality that my children are undiagnosed -unfamiliar- to specialists.  I am frustrated that this peculiar low-blood-sugar-after-feeds is rare and not normally found in kids Janneke's age.  I am frustrated that Janneke has been prescribed a med that is not normally dispensed in Canada, making me concerned about side effects and confidence in staff who prescribe such a drug. I am frustrated that there is no guarantee that the med will actually work.  I am frustrated that my world seems pretty small right now; my girls' care is number one priority.

The anger comes because I am unable to change things the way I want.  The anger comes because I have to wait this situation out and be patient with doctors who are human like me and don't have all the answers.  The anger comes because the frustration can't resolve itself in a cup of coffee.


Yet...  I read something again today that I wrote last year at this time - a prayer that was inspired by some words I had been reading.  In the times when we are at the end of our strength, remind us that Your strength is infinite.  You are up all night, every night. When we feel as if we cannot handle it and we are brought to our knees, stretch your hands and cover us.  

I need to be covered - like the psalmist writes in Psalm 91, under His wings.  Sometimes the darkness - which is often perceived as unfriendly and lonely - can be the warm comfort of the shadow of His protection, His wing.  Like a grace disguised.

So... we're going one day at a time, trying to appreciate the moments in the day when everyone is content and there is laughter heard.  Looking for grace, disguised in ordinary moments.

Like a "first" snowfall...

I am thankful for the nursing care in our home; having the extra set of hands to reassure me and take over the primary care is a gift.  I am thankful for the good humour we can find in tense moments.  I am thankful for good friends who email and call to check in.  I am thankful for the new friend who came to clean my house today.  I am thankful that it is getting easier to drive the Sprinter (although the snowfall made me wonder how I am supposed to clean the snow off the top?). I am thankful for Rachel's enthusiasm with Emily's piano lesson - and her music therapy which we have resumed with Mendelt.

One day at a time.

Peace for your week.