When Trooping Fluctuates

{This post:  Jan. 2 – Jan. 20 // For all posts CLICK HERE}

Time was Suspended for a Bit

Have you ever thought about death?

I have. Not in a freaky morbid way, but really… just wondering about that dying moment and what it would be like and how it will be. I’ve chatted about it with my wife too. We all wonder about death at some point… will we live to be old, or die young?

It’s been on AJ’s mind too. This afternoon he asked us, “What happens when we leave our body?”

“That’s a challenging question AJ.” I responded, “No one really knows. I think a lot of people imagine what it will be like — look how many Marvel movies and others movies, books, and video games aim to depict some semblance of the afterlife. But’s here’s what we do know. Jesus said something to the criminal on the cross, as they were both dying: ‘Today, you will be with me in paradise.’ So, there’s a clue. When we die we will on the same day go to be with Jesus in paradise… if we believe. The one criminal recognized Jesus as having a Kingdom and being the King of it. He believed. That’s the only entry requirement.

Also King David in the old testament lost a baby.”

AJ piped up. “Wait, David lost a baby?” He was intrigued with this.

“Yes. It died less than a year old. And you know what David said? ‘I cannot bring him back. I will go to him, but he will not return to me.’ David recognized life after death.

And also Jesus lost a very good friend Lazarus. He died and his sisters were very upset. They confessed that when people die, they will ‘rise again in the resurrection at the last day.’ So we know too, that more is coming as this world and heaven itself will pass away and be made new.”

We were both quiet for a few moments with Joanne at the end of the bed, and me beside AJ.

“You know another amazing thing AJ?” I asked. He looked at me curious again.

“Crucifixion would have been a brutal way to die. It was done in such a way that when hanging on the cross it would become increasingly difficult to breathe… done deliberately to kill the victim. Jesus experienced this. So He of anyone would know what it’s like to have trouble breathing. Plus He died. So He too experienced those days and moments before death. Remember in the garden before He died He was sweating drops of blood because He was in turmoil about dying – He had to face death head on and while doing so, face the wrath of God against the sins of the whole human race! Talk about being stressed to die!

So AJ, you can bring all your fears of difficulty breathing and all your concerns about dying to Jesus who died Himself! He’s the One who would understand better than anyone. And you can come to Him anytime in prayer, even if it’s just in your thoughts and you don’t use words.

And remember, Jesus didn’t stay dead. He rose again to defeat death’s clutches over us. Death is powerless over those who believe. And I have an idea that maybe Jesus or His angels come to get us when we die. And if not, we’ll be ushered into His presence, until He’s ready to come again and make all things new right here on earth.”

AJ was content with all this. We read from Matthew 26:39-46, where Jesus was greatly troubled in prayer, and we too prayed together.

It was like hospital life suspended for us for awhile. The room was quiet and we had this precious time to reflect on living and dying in the Lord Jesus. When our capacity to keep trooping fluctuates, it’s always good to re-orient on Jesus Christ and His saving grace for those who love Him.

Then, as if our freeze-frame in time was finished, the door opened and various hospital routines began to be carried out again for the afternoon.

Hospital life can be Hard

Typically the idea of a stay in the hospital is to get your health restored to get you on your way.

For AJ, it’s been a long time. This weekend it will be 3 months on Jan. 23. When going home is delayed, it can be hard. There have been joys and sorrows, some satisfying moments, and a few frustrations as well. But overall, God has provided and continues to provide in amazing ways. Maybe it’s through hard things that we most realize our complete dependence on Him.

January unfolded like this…

Dad had a birthday early on. And AJ and Joanne had a discussion about some of the products available in the store at the hospital and AJ decided what would make good gifts for dad: a peanut butter chocolate fudge bar and a new pen with bees on it (I’m a honey lover)… that way when writing I think of honey and AJ. How thoughtful!

On January 7th there was a meeting with the Feeding and Swallowing Team. Much discussion was had around surgically inserting a G-tube feeding tube into AJ’s stomach. This was decided as the best course of action because first, the current NG tube through the nose has been getting increasing uncomfortable (not being meant for long term), second, AJ’s oral eating capacity will not improve due to his DMD, and third, he is in the hospital now, which allows for easier access to operative care. The date for this is set for January 26, God willing. AJ is looking forward to being free of the nose tube!

Later on January 7th, there was a Covid scare in AJ’s ward. But again, by God’s grace our regular visiting with AJ did not get interrupted and AJ has not gotten sick!

On January 10th we had a meeting with Dr. Martha Fulford, McMaster’s infectious disease doctor. It revolved around vaccine concerns and she fielded many questions and concerns from us. We came to the decision that vaccinating AJ did not have any conclusive benefit and it was further agreed not to inject unknown vaccine substances into his body.

Much discussion and some implementation went into getting AJ into some routine during the day. A schedule was created, printed and posted in his room. This includes things like wake up times, meal times, activity times and free time. It also includes school! On occasion he joins his class for some online school and extra after school activities might include a stroll/roll through the halls of the hospital in the power wheelchair (still a loaner because his is still not fixed!). We also got AJ a phone number and gave him Joanne’s old cell phone so we can do calls, texts, and chats with him. But of course the challenge is if he is not holding it, he cannot access it off his table.

You know you’ve spent too much time in bed when your bed breaks! Go figure… AJ’s bed broke. As if the broken down wheelchair is not enough, now the bed. His power mattress deflated and the motor operating all of the different positions gave out a last sigh and quit. There he was stranded in his loaner power wheelchair no less! Poor guy! It took a few hours to sort out getting him another power bed, but the new one doesn’t have the auto-adjust inflatable mattress and has a slightly noisy motor. But no worries! We are grateful they found him another bed!

One of the perks on the 3rd floor is a Ronald McDonald Room mini coffee bar with free treats and drinks for long term patients and families. But it has been closed since the new year began. Well, get this…. the other day Joanne came in with tasty treats from another facility…. from (sister) Jocelyn’s Cobs Bread Bakery. And for AJ — a fresh cinnamon bun! Wow, so good!

Last Sunday, January 16, I was ill. And yet (don’t tell anyone) Mark Wanders went to visit AJ. He was a slightly more rotund Mark Wanders, with a bit less hair and bigger feet. But the careful eyes of the screeners did not notice such trivial inconsistencies. His name is also prefaced with ‘Daniel’, as in Daniel Mark Wanders. He simply asked if Mark and Joanne were on the list to visit AJ, which was confirmed to him and he was let in. They enjoyed a visit together which also included livestreaming a church service which hasn’t been done with AJ in some time.

Joanne did some extra visits with AJ as my illness hung on for a few days. Her and I (and slight variations of me) are the only two allowed in to visit AJ. We have been advocating for more family members to be allowed to come in and assist with AJ because he needs it. But we keep getting answers that beat around the bush. We are seeing a decline in AJ’s mental health not having siblings and other family stop in regularly to visit, and more importantly, help attend to his needs. We hope this changes soon. Because his declining mental state is affecting his physical progress as well. His “trooping” has fluctuated… sometimes in a downward movement. This was noted at his weekly doctors meeting that we both attended today, January 20.

Also from the meeting (this and previous ones) we keep hearing that the search for nurses to help with in-home care is not coming up successful. We have been asking for permission for outside sources of nurses (i.e. different vax status) as optional pools to draw from, but I think the folks responsible need to exhaust themselves within their means first. So we patiently wait. We also re-entered the thought into the room that as a ‘backup plan’ a child and youth long-term care home be sought out in case supports are not found for our home to be a feasible option. We do not want AJ’s hospital stay extended any longer than it needs to be.

Back at the home front…

That makes me smile. Wow, have we been taken care of by our church community particularly. We get constant reassurances that we are being prayed for. And we know we are, because we can feel it at those times when we should have stumbled. But there we were, held up.

And the meals. What a blessing to receive meals every week as arranged by the meal train. Usually two or three times a week someone shows up at the door with their hands full of a totally prepared full course dinner and dessert! This is so much appreciated. We sit down and thank God for the food and also for the caring people who have continued faithfully to support us in this very special and meaningful way.

Thank you all so much!

And a special thanks to Gramma and Grampa H for some of their extra chauffeuring Jeremy around. When Dad and Mom are caught up with things, there’s Gramma and Grampa always ready to do an evening drive with their grand son Jeremy who needs a lift somewhere. And I can’t figure it, but it somehow always includes a Tim Hortons stop. Thanks Gramma and Grampa!

How good it is to know we are surrounded by our gracious God, who takes care of our needs and our fears, no matter what they are, knowing them before we even come to Him.

One thought on “When Trooping Fluctuates

  1. This was a difficult read. I feel so sad for both AJ and for you and Joanne, Mark. It is just so wrong that he is not allowed to have family members visit.
    Also it’s so discouraging to read that he still doesn’t have his own chair fixed. It just makes me angry that those who work in the business of selling and repairing wheelchairs don’t know how it feels to not be able to use the ONLY means of transportation available . May God continue blessing all of you with the ability to have open conversations about life – and death. Maranatha!


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