This post: Dec. 18 – Jan. 1 // For all posts CLICK HERE
The start of a new year…and AJ is still trooping with us. He’s a star trooper!
But hospital days are not easy, especially with new limited visitor access. And AJ’s condition is not easy for him to live with. On the first day of 2022, AJ expressed to me some deep frustration… he started crying and saying, “It’s not fair! I can’t move my arms and legs… I can’t do anything!”
This had been prompted by some dialogue around taking his mask off and his asking me why I always have to ask about removing his mask. I reminded him Joanne and I were part of the objective in seeing his his goals reached for times off the Bi-Pap machine.
So for awhile we cried together and then turned it into some prayer time. We told God that some days life sucked, and this was one of them. We were grateful for some of the psalmists who have gone before us expressing those same sentiments… over 1/3 of them are laments, basically saying, ‘God, life is hard; life can really suck.’
We imagined how great it would be if Jesus would use the same words as he did to the paralytic, ‘Rise pick up your mat and walk.’ We wondered why God sometimes does heal, and then other times he journeys with us in the suffering. We rejoiced remembering that because of the great suffering and death of Jesus at the cross and rising from the dead, AJ will also someday experience freedom from this life and be able to run in heaven or on the new earth. Things are difficult right now and can indeed suck, but we are not stuck. God didn’t leave us stuck. He has already now given us new life in Jesus Christ as citizens on the way to a better Kingdom. This life is but a passing through! We’re looking forward to the arrival of Jesus’ Kingdom in all its fullness when He will make all things new for those who believe.
We finished our prayer time on a positive note thanking God for things AJ does have… his keen and intuitive mind, his ability to figure out computers, games, and electronic devices, his big heart, his wisdom, and most importantly faith unto salvation given as a gift from our gracious God. We also thanked God for all the people who have surrounded us with their love and prayers.
When done I told AJ that despite his challenging circumstances, it is through it all that he was brought into our lives… and for that we too are grateful.
Highlights from the last two weeks of 2021
Food is a highlight. And eating it is still something AJ enjoys. He continues to receive some supplement feeding through his nose tube, which is also used for hydration and medication, but one day Mom (Joanne) brought in a Teen burger from A&W and he ate the whole thing! This definitely made a hospital food record for him.
Friends are also a highlight. Prior to provincial restrictions, our visiting schedule had been working amazingly and family and friends had been stopping in regularly. This included a visit from Wyatt and his mom who stopped in for some gaming time… with Timbits and hot chocolate! Friends and food! Now these two boys were really energized! They must have really kicked up some noise… two days later they closed the hospital to visitors! Wyatt?!?
Sure enough December 22 restrictions were put in place for McMaster. (Some say it was omicron, some say Wyatt… which one gets around faster?) Kidding aside, this was and still is a real blow to all of us — and many within the healthcare system. And right before Christmas!
So with no visitors allowed in the hospital, we decided to ask at our weekly doctors’ meeting if we could take AJ outside on Christmas day. We were given the ok.
Christmas day was a highlight. I had this idea for Christmas day. I shared it with all the family and they were all on board. We would drive to the hospital on Christmas day with an enclosed trailer in tow, park out in front of the hospital, and invite all the family to rotate through visiting AJ in the enclosed trailer. A portable Christmas party room! Complete with a little heater to keep things warm.
So that’s what we did. On Christmas day Joanne dealt with getting AJ down and out of the building – he was even bathed up and looking spiffy for the occasion (apparently with new-found jets in the tub of the bathroom, they just call it ‘Spa Day’ now). And I took care of pulling the trailer and finding a place to park. Everything went amazing and for 3 hours on Christmas day we were parked near the front entrance of McMaster and enjoyed seeing AJ having a delightful time with family opening gifts and having a great old time. Josh H. and his kids even popped down for the excitement! It really was a great time! Back home we had picked names, including AJ, so AJ had a gift for Anna, and Jocelyn had a gift for AJ. Plus he got scads of other gifts too!
Surprise highlight for Mom. One day when Joanne went up to the 3rd floor as usual to visit, she was startled to see a new person behind the reception desk of AJ’s ward. It was AJ himself! He had been allowed to wheel over in a loaner power wheelchair and mind the reception desk (and conveniently slip in a few YouTube videos while at it). Mom was certainly surprised and they had a good laugh.
The wheelchair situation has posed a real problem. AJ’s own power wheelchair had the appropriate replacement parts show up on time as scheduled on December 21st, only to find out that the parts were defective! So now, with Christmas break and all, it may not be till mid-January that he sees parts showing up. So he was given a loaner power wheelchair for the time being. At least through it all AJ did not lose his sense of humour.
A gift highlight. A favourite gift that AJ got for Christmas was a PS5 gaming unit. He has been borrowing one from his good friend Wilhem for weeks now. Word got out that a PS5 was on AJ’s Christmas list and well, due to various connections, this little wish became a reality. Then to top it off we gave Wilhem the title of ‘IT guy’ and had it arranged that he could come in for an ‘IT appointment’ to disconnect his unit to take home and connect and setup AJ’s own new unit. All this worked out very well and AJ is now happily gaming on his own unit. And Wilhem got to slip in a visit while on this exclusive business venture.
One other advancement we are making towards coming home, (even though some days it seems like a long way off), is that Joanne and I have been taking some training at the hospital on how to use the Bi-Pap machine, an oximeter, and a cough-assist machine. These are all units that will have to come home with AJ for on-going use and we have to know how to use them. We’ve only had initial training, with more to come, but it has been good to learn how these devices work. It has already helped in attending some of his needs while we make our visits and alleviates calling the nurses while we are there.
Into the new year…
So what might January look like? In amongst daily visits… targets, training, and nurse care… keeping targets for mask on/off times, seeing Mom and Dad trained up on all the devices, and sorting some in-home nurse care. And, of course, AJ’s own power wheelchair up and running would be great too. So, a short list, but one with a few learning curves yet. And all of this understanding that the gift of each day is part of the journey on the way to the greater destinations! Journeying together is part of the fun, the growth, the experiences and a maturing along the way. We’re not what will be, but we’re way ahead of where we began. And even if things become increasingly challenged in this life, there’s always eternity waiting. And so we always live with that reality and hope.
“But the eyes of the Lord are on those who fear Him, on those whose hope is in His unfailing love.”Psalm 33:18