August 16, 2014

A chance to rest; evidence of love

 Hi its Joni writing here today.  Its been a while since there has been a post so we thought we would update those of you who continue to hold us in your thoughts and prayers.

Many people ask us if our Mom gets a chance to rest and get away.  She has help 5 or 6 nights a week so she can sleep, and twice a week she gets away for 4 hours to run errands and attend events.  This weekend she is gone up north for 3 three days with Gerrit, Sarah and the kids.  Sarah and I are taking care of things at home while she is gone.  We are hoping she has a wonderful weekend even though its cool, and that she can be refreshed and relaxed for a few days.  She works so hard and so faithfully taking care of Dad.  The next two weeks will mark 2 milestones for the family.  On August 20th, Mom and Dad share their 38th wedding anniversary, and on August 28th Mom will celebrate her 60th birthday!

     As I look around the house I see so much evidence of the continued love and support of my parents' friends, family and church community.  There is a casserole on the stove from a niece who faitfhullly brings meals and comes weekly to do physio exercises on Dad.

There is a book and a printed email on a table that a retired Pastor and his wife dropped off to encourage my parents.  Every week several people drop by for a coffee and a chat.  Since Dad can not talk any more, the house can be very quiet and Mom really enjoys these visits.

 There is a beautiful card propped up on the dining table with a sweet reminder that they are not alone on this journey...

I found Mom's notes of what her regular visitors take in their coffee so she doesnt have to ask every time how they take it :) 

Some leftover pulled pork and buns from a pig roast that Mom couldn't attend.  She was not forgotten though...

 Delicious muffins taken out of the freezer from a friend who prepares healthy, incredibly delicious meals regularly for Mom.

McDonalds coffee cards, from all the coffees a brother-in-law and sister drop off!

 Some new plants to brighten up an area, that faithful friends maintain every week when they come for a visit.
 The ramp which is was donated and used every day to take the wheelchair out to the back yard for some fresh air.

 The shower installed by a loving team, is used every day and so convienient.
 The cleaning tools that Karen from "A Breath of Fresh Air" uses every week to help take care of Dads' teeth in the comfort of his own home.

 A comfy sheep skin, given by someone who also had a loved one with ALS and found this helpful.

The bird feeder, hung and maintained by my uncle... provides something to look at;  life on display right by Dads chair.  The grandkids love it too!  The middle one often has gold finches on it.
 An orchid, re-blooming months after its initial bloom.  There are usually flowers or plants given as gifts brightening the living room.
     This is how we communicate with Dad now that he can no longer use his head controlled computer.  We point to the row (yellow) first , he blinks if the letter is in that row, then we go across the blue and he blinks when he wants to select that letter.  We spell out each word letter by letter - it works, but its slow and frustrating.  Conversations with Dad are now usually 1-3 words long.  This is the hardest part of the disease without question.

  This is the feeding system used for Dad.  He gets 2 cans of meal replacement in the clear bag, followed by a bag of water, twice a day.  Its takes 1-2 hours to complete a feed.   The food goes directly into a port in his stomach, as well as his meds which can be injected with a large plastic syringe into that port.
 As Ed Dobson (a pastor with ALS in Grand Rapids Michigan) says.... each bird we see reminds us that if God cares for the sparrows, He also will care for us...
 Art from a grandaughter
 A very large box of cards received since Dad got sick...
I think Mom said there are over 700 cards received already!  What an encouragement!  Thank you all for your continued love and support, both tangibly (with meals and yard work, coffee visits and cards) and for your prayers.  The journey can often feel so overwhelming, but when we take it one day at a time, and we take stock of all the evidence of love and continued support that surround our family, we know that God is holding us all in His hand, and He will continue to hold us through to the end.

Have a wonderful weekend,
love Joni and family

June 27, 2014

The Last Post

This is the title of a military trumpet song played when the flag goes down in the evening. It is a sad, mournful sound. Posting entries on my blog is getting too difficult for me. I have enjoyed writing in my own simple way, but others in my family will have to take over now. Thanks to the many followers of my blog for your comments and encouraging emails. God bless you and keep you, and make His face to shine upon you.


June 1, 2014

God's Face

One of my favourite Psalms is Psalm 34. There David ascribes to God many human character traits: eyes, ears, taste, and a face. God looks, listens, sees, hears, and His face shines upon us. Anthropomorphic speaking theologians call it. Comforting words I call it. He hears my prayers and cries, He knows my situation perfectly, He never slumbers nor sleeps. What a comfort this is.


May 28, 2014

Happy 60th Birthday

Happy 60th Birthday Jack! Another milestone that we never imagined you would reach; but once again we see that God's ways are mysterious and He is sovereign and He is good.
l love you Jack and hope that you have a good day today.

A friend of ours, who lost her husband to ALS a few years ago, heard this song which was sung at a memorial hymn sing and it meant so much to her that she emailed it to us. Indeed, the words are beautiful and very meaningful and Jack wanted to share it with you all on the blog.


When my plans have fallen through and I don’t know what to do.
I just look unto the hills, whence comes my help.
And when the dreams I’ve dreamed have died
And I need a place to hide.
I just look unto the hills whence comes my help.

And I cry Father, Holy Father.
I need to rest a while close to You.
Give me water, living water.
For it’s in these hills I feel my strength renewed.

When there’s pain on every side, I simply close my eyes.
And I look unto the hills, whence comes my help.
And when my valleys will all turn into another yesterday.
I just look unto the hills, whence comes my help.


 So when things all go wrong, and you feel all hope is gone.
Just look unto the hills, whence comes your help.
So go to your knees in prayer, cause the Lord is always there.
When you look unto the hills, whence comes your help.

Here's a version of it found on you tube.