April 2, 2012

It's Been A Year

It's been about a year now since Mom and Dad first called us with the news that Dad was undergoing some testing and their trusted family doctor for more then 30 years feared it was a disease called ALS. I had only known a few people with the disease and knew next to nothing about it. 

We went through such a roller coaster of emotions those first few days … shock, disbelief, hope that it might be something else (MS? Lyme disease? Even Cancer? ). The grief that we felt as our worst fears, (that Dad really did have a terminal illness) were confirmed, led to a period of mourning for our whole family.

And then it seemed like we entered a new phase. There were still times of sudden grief and sadness but we all entered the phase of “living with ALS”. And thankfully we still have Dad here with us one year later, living with ALS. We didn’t want to waste precious moments being sad. We wanted to make the most of the moments we still had! 

We went through the summer with Dad still walking and talking and laughing and enjoying many special times with the whole family together. We experienced everything so vividly – savouring events with even more enthusiasm, grateful that Dad was still with us to enjoy them. Fishing trips, spending time at the trailer, birthday parties, wedding anniversaries etc. Each one was and still is a gem that we treasure; their beauty enhanced by knowing it may be an experience we may never again share with our Dad.

We began to ask ourselves questions like “Is there anything I still want to do with Dad while he can still walk?” “Is there anything Mom and Dad should still do together while they still can?” “Is there anything I need to say to Dad while I still have him?”

There is also a level of pressure that settles on the family – an urgency to add special significance to every event. This may be our last Christmas together – how should we spend it? This may be our last New Years Eve and Day together – what should we do?

Through the year Dad has steadily gotten worse. The prayed-for “plateau” has not come yet. The healing has not come. There has been no miracle to confound the doctors. Some days Willem would pray at the table “God, today let Dad jump out of bed, healthy and whole again… but Thy will be done O Lord, and help us to accept your plan.” That day has not come. 

The last few weeks have felt like Dad has gotten so much closer to leaving us. Whereas before, there were times when we could almost forget that he was sick, those days are done. Last fall, when he was sitting in his chair laughing in the living room with the family, we could pretend that it was all a nightmare. Now the signs are impossible to hide from.

The hospital bed arrived at my parents house. It's such a large, physical reminder, sitting in my parents' bedroom, that Dad is very very sick.

Dad’s speaking has become even harder to understand. From the last video we posted, he is again quite a bit worse. This weekend was the first time that he tried to say something and I didn’t know what he said. He repeated himself 4 times and we all struggled to figure out what he meant. That was so frustrating to him and so painful for us.

Dad’s CO2 levels are getting worse, and his breathing is getting much more difficult. Busy days and too much activity are causing him to have attacks which are heartbreaking to see. He has to stand up, gasping for air, and struggles for every breath. Even visits from precious friends and family members are becoming overwhelming for him. He needs things quiet and calm now and too much busyness can send him into an attack.

As we sense that Dad's days of being able to speak are very close to the end now, we have had some difficult conversations about end of life issues and what Dad’s wishes are. Mom and Dad now have a DNR (Do Not Resuscitate) order in their possession and are making decisions regarding a feeding tube and respirator. 

All of these things together have made this walk along Dads journey with ALS feel so very dark these last few weeks. It really does feel like we are walking through the valley of the shadow of death right now. And I think that Dad’s last tent peg is slowly being loosened.

Letting go of his possessions was easy. Letting go of his job, his position as elder, his ability to be active in his home and his community was much harder. Letting go of family and friends seems to be the final stage of this journey, and somehow when we are together, Dad seems to be less “present”. 

He is starting to experience such times of discomfort that when we see him suffer we feel that wishing him to stay is selfish. That if his life on earth has to be filled with pain and struggling even to take a breath – that God would spare him any further pain and gently take him to Himself.

We have no idea how long Dad still has to live. Many people live with ALS for many years. But the reality before us is the fact that Dad’s disease is progressing every day, so quickly, and the past year has brought such devastating changes. 

Like the Psalmist David though, we can end our time of lamenting and crying out to God with a glorious BUT!. But…through all the changes, and with all the sadness, we can still testify that our foundation is firm. Our family has a rock beneath us – a rock called Jesus Christ and He is not moving. Though our emotions rise and fall, He stays constant. Though we waver in our confidence and in our faith and in our joy, He never changes. His Word comforts us when we turn to it. The prayers of our family, friends and church family support us. Never once on this journey have we felt abandoned and never once has God stopped showing us His love, through so many ways. He is using the hands and feet of our church community to love on us.

This week a member of our congregation brought my family a meal. I can't tell you what that meant to me! During our prayer time at Ladies Fellowship time my sister, sister-in-law and I were able to share a bit of the burden we are carrying and were so comforted by the communion of saints as they cried and prayed with us. I was able to speak with a member of our congregation today who has recently walked the exact same path that we have. He could testify and reassure that God is faithful. There are no words to describe what a comfort it is to be part of the communion of saints. To have fellow believers come alongside you and take on your burden with them.

My parents continue to receive baking and meals from dear friends. My Mom has recently been blessed with an extended visit from her sister (a former nurse) who has allowed her to have her first full night of sleep in many, many months. Some nights she is up 20 – 25 times and this weekend she slept through entirely one night – Praise God!

While my Dad is no longer able to receive as many visitors as he formerly did, he is still so encouraged by your cards and emails. Thank you so much for your love and support. We are encouraged to hear that this blog is helping so many of you also, as you face life’s difficulties. We all have pain in our lives. And if we love the Lord and have Him as our Saviour, we can be assured knowing that those one step ahead of us on this journey can testify that all will be well. And we can turn to those behind us, dealing with new hurt and new pain, to say the same thing. We won’t slip from His hand. All things are working for our good. He knows your pain. He cares. He hears your prayers and He answers every one.

I was fascinated to hear about people from another culture who do not speak candidly about death or dying and were so surprised to see our family openly discussing this process. We are called to do all things for God’s glory – whether that be eating, or drinking or even dying (1 Cor.10:31). Thank you Mom and Dad for beginning a forum to do just that – to make yourselves vulnerable in a time of pain and to glorify God in this last battle with the last enemy. To take this ugly process of dying and to make something beautiful out of it. Because when your confidence is in a God who makes all things new and all things beautiful, then even this can be held up for His glory and His praise.

“But whatever gain I had, I counted as loss for the sake of Christ. Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ.” Philippians 3:7&8



  1. Beautiful heartfelt post Joni! We continue to grieve with you as your Dad is taken from us all bit by bit and uplift you all in prayer. Not being able to breathe has got to be the scariest thing. What an awful disease! It's so nice that your aunt can be here for a bit to help out your Mom and Dad.
    With much love to you all.
    The Hannafords

  2. Dear Family: Praying for you all that you will continue to feel God's Fatherly care and Hand over each moment of this path you are on.
    Thank you for the beautiful post showing God's steadfast faithfulness in your lives. May you be upheld by the 'Everlasting Arms' - Deut 33:26, 27a. Praying for you, with Christian love, John and Jennifer Jongerden and family (Chwk, BC)

  3. Much love to you all. You continue to be in our thoughts and prayers.
    Kelley Van Dyk

  4. This post brought me to tears Joni. The difficulties with his breathing and communicating your dad is experiencing sound so aweful. Glad your family - especially your mom - has help from family and friends.
    You are in our prayers daily.
    Agnes Westerink

  5. Our prayers and thoughts are with you in this difficult, trying time. May our Lord and Saviour carry you through with His loving arms, and may you experience peace beyond human comprehension, as only He can give.

  6. Beautiful post Joni. We're continuing to keep your entire family in our prayers.
    Rob & Karen

  7. A beautiful post Joni, and at the same time so much sadness. My prayers are with you all. I would really, really encourage your Dad to use his Bi-Pap more, best would probably be 24/7. He may have to try different masks to see which is most comfortable. He would not have these "attacks" that he cannot get enough air and you might be able to understand him better. I know he does not like the thing but, and I don't want to sound hard, t would help him to feel so much better. It also keeps the CO2 levels down, which in turn makes a person better too. My husband Chris did not really like his Bi-Pap either but he used to say "it's mind over matter". I hope the hospital bed will allow him to have a better sleep. Would it be possible for your Mom to go away for a few days once in a while so she does not burn out?
    With love to all of you, Mary VanDoodewaard

  8. Your candidness has been so helpful to all of us. We pray that the following days will be comfortable for your Dad. Your family has displayed much courage and your parents have been an inspiration to everyone. Praying for all of you,
    Marietta and Garry

  9. Thank you Joni for sharing this. Your dad has been such an inspiration and has helped me though some difficult times when he was principle, and still has just in a much greater and richer way - that is spiritual. Thank you Mr. Westerink for all you have done over the past many years. You are a true testament of God's goodness and mercy.

  10. Hi Joni, Marg and I have just lost Marg's mother due to lung cancer. The last days were hard too, but the part that really shined through it all was Lord's Day 1. "What is your only comfort in life and death? That I am not my own but belong to my faithful saviour Jesus Christ..." I know that is also your Dad's comfort. Jesus Christ is our only hope as you have also expressed so beautifully. John and Marg

  11. Thank-you for your beautiful post Joni. I was just talking to a friend today who is a former student of Rehoboth saying what a testament of faith your dad is to so many people and the strong love that is evident in your family and between your parents. Praying that God will keep you and your family close during such a difficult time - one that we cannot even fathom.
    Cheryl Dendekker

  12. Wishing you strength for today and hope for tomorrow. Keeping your dad and your whole family in our prayers Joni.
    Dorothy Reitsma

  13. Wishing you the Lord's presence in these days! Here is a quote from the late Prof. John Murray that I hope may give some strength.

    "The righteous sleep through Jesus... they are put to sleep through Jesus... You know the tenderness, the love and the care with which a mother puts her infant to sleep. The infant may not want to go to sleep, but that does not detract in the least degree from the tenderness and the gentleness and the love and the care with which the mother puts the infant to sleep and it is just that that is true in a super-eminent degree and transcendently with respect to Christ and his people. It is he who puts them to sleep. He attends their departure. And when their time has come in accordance with his own appointment and with his own mediatorial Lordship he puts them to sleep and that's exactly the figure that the scripture uses with reference to the death of the godly. And not only does he put them to sleep but they are dead in Christ, they are asleep in him, they are not separated from him. When the body is laid in the tomb... how beautiful are the words of the Shorter Catechism: the souls of believers are at their death made perfect in holiness and do immediately pass into glory and their bodies being still united to Christ do rest in the graves until the resurrection."

  14. I can't imagine what your dad, mom and the family are going through, but what a comfort when we know that this valley will not be walked through alone. And I pray that the Lord will continue to support, guide, be near & dear to you all. Is there some way that extra care givers could come in through the night to give your mom the sleep she needs?