Monday, January 30, 2012

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.


Heather said...

Checking in on you and trying to keep "caught up" here.
You are covered, dear, precious hero of mine... covered in prayer.

Love, Heather

Anonymous said...

You are covered with prayers that perhaps you did not know we're being made....lbk

Meinema said...

Your family is loved and held before the Lord. I pray that you will find peace in this and I pray that you will also receive rest! When momemts of blessings give you a smile or something to laugh about, cherish those moments too! be blessed, and get some sleep! Love, the Meinema family.

Jacquie said...

"Covering" you from here. Thanks for your honest vulnerability, Sara.

Nancy said...

Hi Sara. I know how you feel i have been at the end of my rope many a times, yet it always gets better just trust in the LORD. The snow from the sprinter is hard but you should have gotten a device which will warm up your car that always helps me. It doesn't actually start the car but it does something to warm up the sprinter. You know where to reach me if you have any questions. Otherwise I hope to see you driving the sprinter around town. At least I am not the only one that gets noticed. Welcome to the club.

Heather Baarda said...

You are the bravest couple I know. I'm sure this is a very frustrating/scary experience. When we're scared, we often feel alone and tierd. The prayer you quoted was beautiful. I am glad that you find it comforting. Sometimes we feel God is far away, but never doubt, he is right there beside you, and protecting you, because he loves you.
I am so glad that you got the new van! This will hopefully make transporting alot easier!
Thanks for's nice for us to be able to pray for specific things....
Take care,

Anonymous said...

sarah you are under gods wing im sure he will give you the courage to carry on . both you and ralph are in our hearts. take baby steps if you believe in the lord he will give you stength to carry on .the children are lucky to have parents like you both . may god always bless you . hugs gerry & jessie .

Anonymous said...

Love. So much Love!

Runny Ron said...

I love reading your honesty. It is so refreshing. Sometimes, we try so hard to make things good when they suck. And your honesty is so well balanced with a bigger perspective of life. Thanks.

Anonymous said...

praying for strength...and sleep.

Anonymous said...

HI Everyone;

I have never been in your situation, however I do know that you are all strong, in many, many ways.
Thinking of you.