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


  1. Thank you Joni for the update and pictures. I continue to keep your dad and mom in my thoughts and prayers.

  2. I've been thinking a lot about your method of communication with your dad. Could you make colour coded recipe cards. Pink for care needs, blue for feelings ( I'm hungry, thirsty , tired, I love you) , green for wants ( read to me, scratch my nose) etc... you get the idea :) then have a main sheet like your letter one and he can blink for the colour he wants and then show him the coloured cards relating to that topic and he can blink for the right one in the topic. He could "talk " to you in sentences once again. I'm sure he's going to keep blinking for the blue "I love you" card to all of you.

  3. Thank you for the update and for sharing how God is carrying you all through this journey. He'll sthrengten you all day by day. 'In the fear of the LORD is strong confidence: and His children shall have a place of refuge.' (Spr.14:26) Praying for you all.

  4. Hi Joni,

    I really don't know where to start. I'm sure you've heard of and seen the ALS ice bucket challenge on social media. Well, until last week I didn't even know what ALS was, so obviously it has worked to bring awareness to the disease. I was challenged by a friend of mine. However, I didn't feel quite right about randomly donating to an organization just because of peer pressure, even though it is positive peer pressure. So I began to look for a family with whom we could bless financially and with our prayers as well. I stumbled upon your father's story and am extremely moved. I love the picture of your mom and dad. Such love. Would you be willing to email with me about our family coming along side yours? I apologize at the randomness of this.