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 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.
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