Progress Report

As you know, ALS is an incurable disease with no known successful treatments. Some people experience periods where the disease plateaus for periods of time, but I have only known a steady decline. We are approaching a date two years ago when I started feeling tired, and we decided to sell our home where we lived for 27 years, 22 of them with my parents in the in-law suite. It was time to downsize to a smaller property, with less maintenance, and no stairs. It was a stressful time for us, and for my parents. I didn't know that I had ALS at the time, but God knew, and He directed us to a very suitable bungalow with all the living space on one level.

I am beginning to have problems with eating and drinking, with the risk of choking and aspirating. I like eating and tasting food, especially meat, so that is going to be another big loss for me.

I am still able to bear weight on my legs when my care givers stand me up. But my legs are beginning to buckle under in the morning and after taking my evening medications. That will be another loss.

I use my thumb to click a button which works as a mouse for my computer. By the end of the day, my thumb is fatigued, and I can hardly use it. The day is approaching when we need to use another way of clicking, called the hover method, which is much slower.

The good news is that I was privileged to hold our 11th grandchild today, Lucas George. I cried when my daughter told me she was expecting, because I didn't expect to live long enough to see him. Today I cried again, that God has been so good to allow me to hold Lucas in my arms.

Another name to add to my prayer list. Another covenant child privileged to have a Christian upbringing and a Christian education.

Leave This World A Better Place- J.C. Ryle

I charge you never to neglect the duty of brotherly love, and practical, active, sympathetic kindness towards every one around you, whether high or low, or rich or poor. Try daily to do some good upon earth, and to leave the world a better world than it was when you were born. If you are really a child of God, strive to be like your Father and your great elder Brother in heaven. For Christ's sake, do not be content to have religion for yourself alone. Love, charity, kindness, and sympathy are the truest proofs that we are real members of Christ, genuine children of God, and rightful heirs of the kingdom of heaven. ~ J.C. Ryle

The Emperor Moth

About five years ago Lena and I were checking out a used book store near our trailer up north, when we came across this old copy of a devotional that we found to be quite a gem. It is a collation of devotions and tracts written by Spurgeon, Ryle, and many other authors not as well known. The theme of most of the devotions is how to deal with suffering and disappointments. Chas. E. Cowan was a missionary sent to Japan and Korea, but due to failing health he was compelled to return home where for six years "a battle was waged between life and death". This unexpected providence of God was difficult for them to process. They collected tracts, meditations and poems that were encouraging to them and shared them with others who were suffering. Here is one of them that was helpful to me.

Streams in the Desert
by Mrs. Chas. E. Cowan
Twenty - Second Edition, 1943

January 9
"For I reckon that the sufferings of this present time are not worthy to be compared with the glory that shall be revealed in us." (Romans 8:18)

I kept for nearly a year the flask-shaped cocoon of an emperor moth. It is very peculiar in its construction. A narrow opening is left in the neck of the flask, through which the perfect insect forces its way, so that a forsaken cocoon is as entire as one still tenanted, no rupture of the interlacing fibers having taken place. The great disproportion between the means of egress and the size of the imprisoned insect makes one wonder how the exit is ever accomplished at all - and it never is without great labour and difficulty. It is supposed that the pressure to which the moth's body is subjected in passing through such a narrow opening is a provision of nature for forcing the juices into the vessels of the wings, these being less developed at the period of emerging from the chrysalis than they are in other insects.

I happened to witness the first efforts of my prisoned moth to escape from its long confinement. During a whole forenoon, from time to time, I watched it patiently striving and struggling to get out. It never seemed able to get beyond a certain point, and at last my patience was exhausted. Very probably the confining fibers were drier and less elastic than if the cocoon had been left all winter on its native heather, as nature meant it to be. At all events I thought I was wiser and more compassionate than its Maker, and I resolved to give it a helping hand. With the point of my scissors I snipped the confining threads to make the exit a little easier, and lo! Immediately, and with perfect ease, out crawled my moth dragging a large swollen body and little shrivelled wings. In vain I watched to see that marvellous process of expansion in which these silently and swiftly develop before one's eyes; and as I traced the exquisite spots and markings of divers colours which were all there in miniature, I longed to see these assume their due proportions and the creature to appear in all its perfect beauty, as it is, in truth, one of the
loveliest of its kind. But I looked in vain. My false tenderness had proved its ruin. It never was anything but a stunted abortion, crawling painfully through that brief life which it should have spent flying through the air on rainbow wings.

Source: http://www.marslandmoths.co.uk/Latest/?p=3030

Source: http://www.marslandmoths.co.uk/Latest/?p=3030

Source: http://www.marslandmoths.co.uk/Latest/?p=3030

I have thought of it often, often, when watching with pitiful eyes those who were struggling with sorrow, suffering, and distress; and I would fain cut short the discipline and give deliverance. Short-sighted man! How know I that one of these pangs or groans could be spared? The far-sighted, perfect love that seeks the perfection of its object does not weakly shrink from present, transient suffering. Our Father's love is too true to be weak. Because He loves His children, He chastises them that they may be partakers of His holiness. With this glorious end in view, He spares not for their crying. Made perfect through sufferings, as the Elder Brother was, the sons of God are trained up to obedience and brought to glory through much tribulation. - Tract

Thanksgiving Day

Last week we were privileged to celebrate Thanksgiving Day together as a family. Looking back at pictures from Thanksgiving 2011 I remember the strong feeling we had that this would probably be our last celebration together as a complete family. It was an emotional time for us as we
listed the things we were thankful for, and as we all thought about a future without Dad in it.

Here is a picture from last year, as we sat out on the patio watching Gerrit deep fry the turkey.

One year later we gathered again at Sarah and Goran's house, around a table loaded with food, friends and family. And Dad. What a blessing!

Last year Dad came with his walker, this year he was in his wheelchair. Last year he could still talk, this year his computer did the talking for him. Last year he could still eat well, this year he still could eat - its just a lot longer, slower process. Food has to be cut very small, he has to chew for a
long time, and as his friend Ryk said, "He is getting used to eating cold food" because it takes so long to finish a plate. Dad could be fed exclusively through his G tube if he chooses, but he has so few pleasures left - and Mom's pies are worth the effort it takes Dad to eat!

My Mom was able to produce 4 spectacular homemade pies, as well as bringing the turkey and ham! God has given her an extra measure of strength to be able to get through these hard times. It never ceases to amaze me how she is able to carry on, day after day, and long night after long night.  I know my Mom would agree that it's truly a testament, not to the power of the human spirit, but to the power of the Spirit of God in us, giving us the grace and energy to continue.

My parents have been so supported and loved by their friends, their family and their church community. We were privileged to share our Thanksgiving celebration this year with Ryk, Anke and Dirk Naves as well. Ryk and Anke have been faithful friends of my parents for decades. I can't remember a time in my life when they weren't there! Dirk is like a brother to us.  Through the years these friends of our family have walked life's highs and lows together with us. This Thanksgiving as our two families joined together, I think we all really appreciated just how much we value each other. Seeing Ryk feeding my Dad was a visual symbol to me of what a true friend really is.

Dad was able to open the meal with a prayer which he laboriously typed out on the computer the day before our dinner. We all bowed our heads and then the computerized voice we have come to know as "Dad" began. I have included the prayer here:

We praise Thee our God and Creator for Thy majesty, 

mercy and grace. You have given us Your Son as a sacrifice for our sin and to reconcile us to a holy God. Send us Your Holy Spirit to apply the words and works of Christ Jesus to our hearts and be our Comforter.

We confess our sin against Thy holy law and that we don't obey, serve and live for You as we should. Give us a heart that is renewed by Your power and made willing to submit to Your way and providence in our lives. Give us the desire to use our time, our talents and resources to extend Your kingdom here on earth.

We thank Thee for this day and for the abundance of delicious food prepared by loving hands. Bless and strengthen us with it. We thankyou for your Word and for your Son Who gave His life as a ransom for our sins.

Please forgive us our sins and keep us from sin. Bless our dear children and grandchildren. Bless and protect our marriages. Bless our work so that we can meet our obligations to church, home and school. Bless all 

Christian education at home, church and school.

Bless our consistories, our pastors and give us our own Pastor and teacher soon.

Give us patience and a submissive heart to Thy way in our lives. Remember Sarah and baby Beric in the days and weeks ahead, and make all things well. Remember our brother Dirk and make Your way forward clear to him. Remember us all, and do not forsake us O Lord we 

pray, for Jesus sake, Amen.

The weather was cold and windy and so we didn't spend a lot of time outside this year, or do our traditional family hike after dinner as Dad wouldn't be able to participate. Instead we set up the projector on the wall in the living room and looked through old family photos.  This has become a truly precious pastime - the kids love it! We go through old fishing pictures, trips to the cottage, birthday celebrations, baby pictures and laugh at funny outdated haircuts and clothing styles (love the ruffled shirt and huge bow tie on your wedding day Dad!!)  

Dad had two girls perched on his knees in the wheelchair for the show :)

We ended with one of the most precious parts of our celebration. We went around the room and said what we were particularly thankful for that year. Dad shared that he was thankful for:
I am thankful for my family and friends. You all do so much to help and care for me. I love you all very much.  I pray for you all by name, for your marriages, your businesses, for your church and pastor every day. My hope and desire is that you would all be faithful in your love and service to the Lord.
Everyone had something to share. There are so many things to be thankful for - its hard to pick just one! This year what I was most thankful for is God's Sovereignty. I have been so comforted with knowing that our God is all powerful. That he controls everything from the rain and the stars and the sunset and the seasons, to the smallest detail of our everyday lives. ALS is not out of his control.  Our heavenly Father is in complete control of this situation too - and we can know, as believers, that he is working even this horrible disease for our good! Dad and Mom and I have been reading a book by Joni Erickson Tada on Sunday nights, about Suffering and Gods Sovereignty. There is a pendulum of ideas about suffering and God. Some people think God sits on the side, sad about these bad things that happen to us and it seems that He wishes they didn't happen to us. Our God is so much stronger than that! Other people believe in faith healing, as though if we just prayed hard enough or believed hard enough we would be cured. That puts such a terrible burden on people that God never intended. I am so thankful that we can just rest, knowing He is in control of everything. He is able to heal, and will if He
thinks it's for our best, and if He doesn't heal, then even though it may be hard to know why, that too is for our best!

R.C. Sproul Jr. , who has lost his wife to cancer, and now his young daughter also, was able to reflect on this in a way that resonated with me. He said that he felt he had been groomed his whole life for such a time as this. From a young age, the knowledge and confidence of God's sovereignty was impressed on Him, and when things got really rough, he was able to turn to that solid foundation of knowing that His (our!) God is good - all the time, and controls all things, working them out for benefit. I feel so privileged to be
raised with the same sure confidence. That our God is good. All the time. That our God is able. All the time. And that our times are in His hand - not one of us, who believe on Him, will be snatched from His hand.

When Dad was first diagnosed and our family was still in quite a state of shock at the idea of Dad dying, Rev. Procee reminded me that God will KEEP us… and He has!

We have so much to be thankful for, but most of all, we have our God. When those around us say "Why?" and have no hope and no answers to life's hard questions, we do! I am so thankful for that!
Joni

He Shall Sustain You

A few weeks ago, I received a card in the mail with a little slip of paper tucked in it containing the following simple, but powerful truth about suffering in the life of Christians. It has been my experience that God has provided sustaining grace 'sufficient' for each day of my journey. I have had my share of fears and anxieties, but the Lord has been faithful to His promises, despite my doubts and unfaithfulness to Him.

Intimate Letters on Personal Problems J. R. Miller, 1914

'An old scripture promise reads, "Cast your burden upon the Lord - and He shall sustain you." (Psalm 55:22) Every burden you have, you may cast on the Lord; that is, you may lay it on Him in prayer and by faith. But notice that God does not promise to lift the burden away - all He promises is to sustain you, that is, to give you strength to do the work, to bear the burden, to meet the difficulty, to master the hindrance or the obstacle.'

Learning Humility

The following meditation was sent to me in a card several months ago. I can really identify with the feelings and frustrations of the author, so I decided to share it with you.


"He guides the humble in what is right and teaches them his way." (Psalm 25:9)

My friend Carole Danzig was a Phi Beta Kappa from Stanford University, the wife of a doctor and mother of four gifted children. Carole was also given the "thorn in the flesh" of Lou Gehrig's disease. She became a quadriplegic and endured the slow deterioration and loss of all her muscles. She typed the following words on a computer by clicking a sensor with her teeth...

"When I want something, frequently no one understands. When I know how to do something better, it doesn't matter. When I don't want to do something, I'm overruled. I cry and then I remember our Lord's words to Peter - that when he was old someone would lead him where he did not want to go.  When I enter a roomful of people - Sunday services, for example - I always send up an arrow prayer: 'Please, Lord, don't let me drool.' But the answer is always the same. I drool. Finally this morning I could not stand it anymore. 'Lord, people will think I have lost my mind as well as my body. They will pat me on the head and talk to me as if I'm two years old.'  'And Jesus answered, 'And how do they talk to a two year old? With love, with joy, with concern. Not so bad.' But I replied, 'They will talk to me in words of one or two syllables and short sentences.' Once again Jesus replied, 'You mean like "Blessed are the poor in spirit for theirs is the kingdom of heaven."  'O Lord, thank You for the reminder. My drooling is a help to make me humble.'  I praise You, Lord, for the marvelous grace that sustains brothers and sisters who suffer greatly. May we learn to see our own "handicaps" as opportunities to humble ourselves so that You might lift us up.

It was taken from a daily devotional by Joni Eareckson Tada, "Diamonds in the Dust" July 13.

Sickness is Meant.......

Sickness is meant…

1. To make us think—to remind us that we have a soul as well as a body—an immortal soul—a soul that will live forever in happiness or in misery—and that if this soul is not saved we had better never have been born.

2. To teach us that there is a world beyond the grave—and that the world we now live in is only a training-place for another dwelling, where there will be no decay, no sorrow, no tears, no misery, and no sin.

3. To make us look at our past lives honestly, fairly, and conscientiously. Am I ready for my great change if I should not get better? Do I repent truly of my sins? Are my sins forgiven and washed away in Christ’s blood? Am I prepared to meet God?

4. To make us see the emptiness of the world and its utter inability to satisfy the highest and deepest needs of the soul.

5. To send us to our Bibles. That blessed Book, in the days of health, is too often left on the shelf, becomes the safest place in which to put a bank-note, and is never opened from January to December. But sickness often brings it down from the shelf and throws new light on its pages.

6. To make us pray. Too many, I fear, never pray at all, or they only rattle over a few hurried words morning and evening without thinking what they do. But prayer often becomes a reality when the valley of the shadow of death is in sight.

7. To make us repent and break off our sins. If we will not hear the voice of mercies, God sometimes makes us “hear the rod.”

8. To draw us to Christ. Naturally we do not see the full value of that blessed Savior. We secretly imagine that our prayers, good deeds, and sacrament-receiving will save our souls. But when flesh begins to fail, the absolute necessity of a Redeemer, a Mediator, and an Advocate with the Father, stands out before men’s eyes like fire, and makes them understand those words, “Simply to Your cross I cling,” as they never did before. Sickness has done this for many—they have found Christ in the sick room.

9. To make us feeling and sympathizing towards others. By nature we are all far below our blessed Master’s example, who had not only a hand to help all, but a heart to feel for all. None, I suspect, are so unable to sympathize as those who have never had trouble themselves—and none are so able to feel as those who have drunk most deeply the cup of pain and sorrow.

Summary: Beware of fretting, murmuring, complaining, and giving way to an impatient spirit. Regard your sickness as a blessing in disguise – a good and not an evil – a friend and not an enemy. No doubt we should all prefer to learn spiritual lessons in the school of ease and not under the rod. But rest assured that God knows better than we do how to teach us. The light of the last day will show you that there was a meaning and a “need be” in all your bodily ailments. The lessons that we learn on a sick-bed, when we are shut out from the world, are often lessons which we should never learn elsewhere.

~ J.C. Ryle

Letter To Dad (From Willem) About The Bed

Dear Dad,

I love my bed. Not inordinately so. People who know me know that I can often be found out of my bed way too early in the morning for a bike ride or a run. I don’t spend too much time there. But I must confess, I love my bed. There’s nothing like after a long day slipping into soft cool sheets and letting your head hit the pillow. It’s a wonderful feeling.

I didn’t think I took my bed for granted. Joni and I decided to get a king-sized bed about eight and a half years ago. The set was lovely and has stood the test of time. (It helped that we slept on a queen sized blow up camping bed for a week or two until we got the new mattress.) When we talked to friends who had gone through misery to try to get a good night’s sleep we appreciated our bed even more. But I realized last night that I do indeed take my bed for granted.

Last night Gerrit and I took your bed away. We replaced that comfort in your life with a hospital bed that we know you hate. If the LORD is so kind as to let you stay in your own home until that point ... you’re going to die in this new bed. Now I hate that piece-of-junk bed as much as you do! Well ... maybe I’d hate it more if I had to sleep in it.

Oh ... it was necessary of course. It wasn’t effective to take care of you in your old bed and it was taking it’s toll on mom’s back and your other caregivers to have to bend over in uncomfortable positions to move you for one reason or the other. It wasn’t safe.

I thought I should write you to mark the passage of this event. It is a big deal! When I consider how much I appreciate every good night’s sleep I’ve had for the past eight plus years WITH my wife IN my own bed WHEN I can get up WHENEVER I want and sometimes NOT WANT to go to the bathroom or see what’s wrong with one of the kids or a fire call or even get kicked in the head by Ella! (Our youngest is very wiggly when she gets between us in bed )

When I think about those things I realize all over again how much this wretched disease has taken away from you again and I hate sin and the fall and I long for Jesus to come back tonight and make it ALL RIGHT!

I realized all over again that this disease strips away everything. Everything! Every human comfort. Every human pleasure. Every human dignity. It’s all being stripped away. We get to see what’s underneath.

It reminds me of when Eustace is turned back into a boy from a dragon in C.S. Lewis’ “The Voyage of the Dawn Treader.” Aslan the Lion tells Eustace to take off his dragon skin and he does – he scratches it off – to find that he’s still a dragon underneath. After doing that a dozen or more times he realizes that he can’t “un-dragon” himself. Finally Aslan cuts deep into Eustace with his claws and the boy can finally clamber out of the foul dragon that he had become.

God’s cutting deep into your life too. Painfully deep. You know what’s underneath? I can see it now. It’s the Everlasting Arms.

As everything else is stripped away from you your Saviour holding you becomes more and more obvious.

I love that. You’re still teaching, Dad! It’s just a different classroom. You weren’t forced into retirement and you haven’t retired.

Thank you for letting the Saviour work out His Will in your life and for sharing it with us.

I love you so much,

W

1. What a fellowship, what a joy divine,
   Leaning on the everlasting arms;
   What a blessedness, what a peace is mine,
   Leaning on the everlasting arms.
   • Refrain:
     Leaning, leaning, safe and secure from all alarms;
     Leaning, leaning, leaning on the everlasting arms.
2. Oh, how sweet to walk in this pilgrim way,
   Leaning on the everlasting arms;
   Oh, how bright the path grows from day to day,
   Leaning on the everlasting arms.
3. What have I to dread, what have I to fear,
   Leaning on the everlasting arms?
   I have blessed peace with my Lord so near,
   Leaning on the everlasting arms.