This post: Oct. 23 – Nov. 1 // For all posts CLICK HERE
Saturday, October 23, 2021
Saturday started out as a normal day. We had a late morning breakfast and some plans to paint the living room. AJ enjoyed breakfast with us, watched us get going with the painting for awhile, and then headed out with his Grandma and Nick for a lunch outing. Throughout the day, AJ had occasionally mentioned difficulty swallowing and said it felt like he had some phlegm stuck in his throat that he couldn’t cough up. He had had this a few weeks ago, but had gotten over it, so we thought maybe this was another similar situation developing.
Our painting project lasted all day until dinner. AJ had been home since his Grandma outing and decided to watch a movie for the afternoon. Better than watching paint dry I’m sure. At dinner, AJ didn’t feel like eating. He sipped a bit of juice but that was it. When dinner was over Dan (our oldest son) left after helping paint all day and AJ hung around the kitchen as things got cleaned up. I stepped out to check out a water problem with a neighbour up the road.
That’s when things changed for the worse. I was hardly away for a few minutes and Joanne texted me:
“Sorry babe, can u be quick….AJ is getting worse by the minute. We may have to take him in.”
I cut my meeting short and quickly returned home. Joanne said AJ was struggling with breathing, even having a few moments of not breathing. We decided to head to McMaster Hospital right away.
We packed a few things and got into the wheelchair van. My job was to focus on driving and get as quickly and safely as possible to the hospital. Joanne’s job… keep an eye on AJ. His breathing was basically little gasps in and little weak coughs out. But he was still with it. We passed a Tesla (which he knows I have reservations about) and he sputters out, “Hey dad, there’s your favourite car!” There he was… cracking jokes in the midst of a tense situation.
We arrived at the hospital emergency in a bit of a frantic condition because AJ started hollering, “I can’t breathe! I can’t breathe!” as we were unhooking the wheelchair. At least he still could operate the wheelchair and whipped out of the van and into the hospital with Joanne while I took care of parking.
A few minutes later, I entered the hospital as well. I inquired at intake where the ‘boy in the wheelchair and his mom’ went, and after verifying I was the dad/husband, they pointed out which doors to go through to get to their emergency room.
As I went through those doors, what I saw put me in emotional overwhelm. Two doctors and 5 nurses were all scrambling to resuscitate AJ! Getting him oxygen, medicine, and testing to bring him under control.
Here’s what Joanne experienced while I was parking…
“The folks at check in took one look at him and sent us immediately to Triage. The nurse calmly checked AJ’s vitals and I could see her getting really nervous. She yelled out ‘Get a doctor here – NOW!’ We were sent straight into one of the emergency hospital rooms. Instantly there were 7 people trying to help AJ. Amazing. One nurse came and took information from me (because we missed intake and triage) while the others got him set up on manual breathing devices and early treatment inhalers, and various other treatments. All this happened as Mark parked the van, in a matter of 5 minutes.”
After I pulled myself together, I met Joanne in all the mayhem. We chatted for a bit and were both so grateful at the amazing staff taking such care to literally save AJ from fading away on us from lack of oxygen. They stabilized his condition and then decided to move him from his wheelchair to a hospital bed. This was quite the ordeal! And AJ, now having oxygen help was directly all the staff as to how to move him with the least amount of pain! Quite hilarious being just outside the room and hearing AJ direct the group! While we watched the amazing staff complete this move, a portable chest X-ray machine got rolled in with the radiologist to get an x-ray of AJ’s chest. While we waited for results, I was called (by AJ) to assist in finding a vein in his arm for intravenous to be inserted. After 10 mins of prodding around we were successful and the nurses got intravenous connected.
Moments after this, the x-ray results came back. They showed pneumonia in one of his lungs. The lead doctor pulled us aside and asked our opinion on next steps. We said, “Do whatever it takes to keep him well and comfortable.”
Talk continued around preparing for AJ to stay. When Joanne told AJ he would be admitted for a few days, his first question to her was, ‘When can I go back to school?’ He had to get tested for covid (which came back negative the next day), and was moved to a private room in PICU with one last and less complicated move to a fully automatic hospital bed in the room. It was about 10:30-11:00 pm by the time we got him settled in his room and, with options for movies offered, AJ chose to watch some Spiderman at this late hour. I mean really, after such a crazy evening… why not settle in with some Spiderman!
The nurses in PICU were also very helpful and kind. After discussing with AJ that we had to be getting home, he said he didn’t mind if we went home to sleep in our own bed as long as the nurse watched him all night. It is amazing actually, AJ’s room has a nurse’s window looking in, so he literally was under careful watch all night. We left, and he was comfortable.
Home life seemed strange. So quiet and no AJ.
Sunday, October 24, 2021
We headed back to the hospital by midday. Joanne and I were both surprised to see how AJ looked today. We had hoped for improvements, but it was the opposite, he looked a little worse than last night. Stressed. He was really struggling to breathe, even with the EZ Flow machine. We were excited to see him and leaned in and loved on him. He asked a really tricky question…
“Am I going to die?”
I thought for a moment and looked at Joanne. I responded, “God knows all of our days before any one of them came to be. We will live them all out. Not one more, and not one less. We have today, and you are still here, so we are grateful for that.” I am not sure if that was the best answer, but he was accepting of it. Then he asked another question.
“Can you pray with me?”
And so we did. The three of us. I cried as I prayed and so did Joanne. But amazingly AJ remained calm. It was like he was holding us together…each of us on either side of the bed, with him… praying, asking for God’s help to carry AJ and us through all this and thanking Him for Jesus in our lives. It was wonderful that in all the busy-ness of the hospital, we had these uninterrupted precious moments together, just the three of us.
Shortly after that, the respirologist came in. He made a few adjustments to AJ’s EZ-flow machine, but after a few attempts, decided it wasn’t going to work effectively for AJ, so he wanted to put him on a Bi-PAP machine. This was quite a process to prepare him…taping up his face and adjusting various tubes and wires. AJ hated all this! And he was not happy about a mask going over his nose and mouth now! But in short order, he got used to the rhythm of the machine and adjusted to it well, as he discovered it was helping him. But the tube up his nose for connection to his stomach became increasingly bothersome with the increased face pressure. And now his talking became very difficult with his mouth covered and his voice muffled. His last and strongest means of communication now taken away. He truly was feeling frustrated and helpless.
We settled him down again and left around 5 pm. His Uncle Joe and Aunt Kelly were coming for 5, wanting to spend the evening with him and stay till he fell asleep. We went home to a wonderful night of tears, laughter and prayer… reflecting on the whole situation with our own children who had all come home for the evening.
Monday, October 25, 2021
A busy day at the hospital with various people wanting to take turns visiting. The hospital only allows 2 visitors at a time in PICU. I did not go today, so from Joanne…
Val & I visited in the morning. It is very frustrating for AJ, because we cannot easily understand what he is saying through his breathing mask. We discovered he is able to type on my phone what he wants, so that has been helpful. Other rotating visits through the day continued. Grandma Kathy & Nick came just after lunch. Pastor Joel Dykstra & Janice from CAS also popped in. The head nurse wanted to get AJ into his wheelchair today, but he resisted and said he will go in tomorrow when Dad & Mom come back. Our son Dan and his friend Mark Lud arrived around 4 pm & just relaxed with AJ & watched a movie. Katrina & Dathan stopped in as well enjoying seeing him for the first time here. All the while he maintained resilience in wearing the Bi-PAP mask about 95% of the time.
And Jocelyn showed up in the late evening…coming to spend the night!
Tuesday, October 26, 2021
Joanne records again today…
Jocelyn and AJ were awake at 7 am and decided to watch a movie. He went poop (everybody poops) and needed to be cleaned and bathed. In the process he got very upset and agitated, so much so that he actually stopped breathing. Flat-lined. The nurse immediately called for help and a number of them quickly resuscitated AJ. He came through ok, but everybody had a bit of a scare. This little diversion all took place in about 5 minutes, with dear Jocelyn on the sidelines.
Dan showed up at 10-ish and Jocelyn left for work. Mark & I followed up after Dan’s visit and arrived around 1.30 pm. Janice (from CAS) also joined us. When there, we joined the daily update on AJ from the medical team as they did their rounds. The ‘flatline’ episode this morning was certainly difficult, a first, but no guarantee it will be the last. We have been asked to join a special meeting regarding AJ’s current health/ future health this Thursday at 2.30 pm. We hope and pray this meeting will give the desired results of best care moving forward.
With Mom and Dad in the room, the plan to transfer AJ to his wheelchair was on the agenda. This took place without too many glitches with 4 of us… two nurses and us. And he looked great sitting up again! He asked for my phone to type a message to us, he wrote: I love you (and 3 hearts). So sweet! Mark sat with him and watched the Cars movie. I went out and met with 2 members of the QoLACARE team, who are looking to help care for AJ and everyone who surrounds him, in hospital, but especially if he goes home. So great!
Nurse Rebecca told me she is very impressed with how our family interacts with AJ. She just feels the love in the room and it has really touched her. Joe & Kelly were next in line to visit and they showed up about 5 pm. We had a quick chat with them, always enjoying a few minutes to catch up and encourage each other. And later on, Jocelyn is staying the night again! God keep us as we sleep!
Wednesday, Oct. 27, 2021
Jocelyn went through a rough night with AJ. He didn’t sleep that well and couldn’t settle. Morning is always welcome after a restless night, and this morning had the extra welcome of Valerie for a short visit before work. That made it extra special greeting AJ into this special occasion day.
The room got decorated for his birthday. Joanne and I went mid-morning together with Jeremy to visit bringing scads of cards from all his classmates, plus various other cards and gifts from family, friends, and teachers. Even the hospital gave gifts! Jeremy passed many the cards to AJ, one at a time, and he carefully read them all holding them himself. The hospital team also showed up with a portable Switch gaming unit which was quite handy because his gifts included new games! AJ rocked at a basketball game!
He told us his best present was that he did not have to go in the wheelchair today. It’s quite a process to transfer him. So considering he endured two ultrasounds, 1 x-ray, changing and updating his feeding tube (to a 30-day one), and a lousy night’s sleep – all on his birthday no less – had made him too tired to go through the process. His wish not to transfer was granted.
As Jeremy and AJ played some more Switch games, Joanne and I had the privilege of a private (unplanned) meeting with one of the head doctors. She took time to explain the various x-rays to us indicating it may not be pneumonia plaguing his lungs after all. His lungs seemed to be collapsing in different pocket areas, which is more indicative of Duchenne MD than pneumonia. This was difficult news to hear. Because that means his body is potentially breaking down further from his disease.
We went back to the room and spent a bit more time with AJ. He is noticeably frustrated at times not being able to talk as freely as he would like, but also takes things in stride. He truly is an inspiring trooper. Quite noticeable today is that the Bi-PAP machine is doing the breathing for him. It has the appearance of him being in sync with it, but it really is doing the work for him. And he knows it. I (Mark) carefully watched when the feeding tube was exchanged. He cannot breathe on his own. So the question lingers in the back of our minds… will he be able to breathe without this machine?
The rest of his birthday included a visit from Grandma Kathy, Pastor Dykstra again (who you have to keep an eye on for selfies with AJ!), Dan, Katrina & Dathan, Jocelyn (can’t shake her) & Jake all contributing to a special and memorable birthday for AJ, despite the circumstances.
We are all overwhelmed by so many people sending best wishes & love & heart warming encouraging messages. And we even came home to delicious baked goods at the front door!! Thanks Shar!
And what does the morning bring? The next morning always includes the great faithfulness of God. Have a listen…
Thursday, October 28, 2021
A very difficult day…
Things started out well. AJ had a good night of sleep! Perhaps Jake (visiting AJ along with Jocelyn) tired him out with all their Nintendo Switch competitions!
Jocelyn stayed overnight again and left about 10 am. AJ had a bit of space in his schedule after that as Joanne and I did not arrive until noon. I was first in the room, as Joanne got a few words in with the nurse. I always greet AJ up close and look into his eyes, and they were sparkling and looking lively. His good night of sleep was evident, and, I’m assuming, if Jake plays Switch like he shoots airguns, AJ was surely still glowing from victory. This I can only speculate.
Joanne entered the room too, and I love watching the sheer delight in AJ’s eyes and face as he sees this his Mom of 5 years enter the room. His body doesn’t hug, but his eyes and facial expression leap out of the bed and embrace his Mom with every bit of love and emotion he has. He is always so glad to see her, and the trust he has in her is precious… built on months and years of living and growing through many good days and some pretty tough ones.
We sat with AJ a bit and reminded him that today was the day to transfer to the wheelchair for awhile. He really didn’t like that idea, but the nurses say it’s good to get his body moving around in different ways. It’s sort of like some physical therapy. The process is uncomfortable for AJ to say the least because of lack of muscle usage, but once in his wheelchair sitting up, he gets comfortable and can engage with visitors a little easier and view his movies better.
Prior to the transfer, the nurses did some mouth and mask work. Occasionally I would think to myself how uncomfortable it is wearing a medical mask for covid, but this pales in comparison to wearing a Bi-PAP mask for breathing all day and night! His Bi-PAP mask ends up causing some fluid build up on the inside which leaks out if not drained and becomes uncomfortable. So they cleaned that up and decided to shine up his teeth and freshen up his mouth at the same time. The nurses really are stellar at Mac! I watched carefully because they did pull the mask as they worked but AJ immediately wanted it back on indicating he couldn’t breathe without it. I didn’t know whether to be excited for the few moments he had it off, or concerned how quickly he wanted it back on.
Which brings me to why the day became a very difficult day. The anticipated Thursday afternoon doctors-and-family round table discussion meeting was to take place at 2:30 pm. Shortly after we got AJ settled, it was time for that meeting.
It included Gramma Kathy, Uncle Joe and Aunt Kelly, Janice, Joanne, me, Dr. Parker in person and 4 other doctors virtually. We talked about AJ’s history to present and what things might look like moving forward. Options on the table looked quite bleak. AJ is a case showing consistent signs of the most rapid decline of any Duchenne patients. So either AJ continues with the Bi-PAP machine including potential facial skin complications, or a tracheotomy be performed involving a 3-month hospital stay and training along with a 24-hour nursing care going forward. And much of the former way of living including school, talking, and self-directing would be very much reduced or not possible. This was difficult to hear.
And in the meeting, the most difficult question came up… what are the chances of AJ’s living beyond what we are seeing here in his rapid decline?
The doctor’s answer, “It is quite likely that AJ will pass away in the hospital.”
We had an idea that might be the answer… but it was so difficult to hear it.
Shortly after that the meeting was wrapped up. With all the doctors out, we were given time to weep and talk. We decided to leave any decisions for a day or so and discuss with others how to include AJ in the choices moving forward.
How do you describe or even process a day like this? A very difficult day indeed!
I reminded everyone just before we exited the room, that our hope in all of this is in Jesus Christ, and beyond this world. If we only had this world to cling to, what a sorry state we’d be in. But we don’t. We have so much more. And so does AJ. He believes in Jesus so hope eternal is his. And it is for anyone who believes. We want to hold him back. But letting go now only separates us for a time, when we believe…because we will meet again, in heaven, looking forward to the new heaven and new earth. And so the decision becomes much broader than just us. It is ultimately God’s plan unfolding. And so we place AJ and the whole situation before Him and trust His leading.
We went home and were blessed with a delicious meal brought to us. Then our pastor and his wife came in the evening to encourage us. We were reminded that no pain or suffering go un-noticed by God and that suffering, grief, and even death, do not win. Jesus has won and works all things out for our eternal well-being… sometimes giving extended life here, sometimes into the eternal. We await God’s good decision in this.
In the evening Kelly & Joe stayed at the hospital and decorated his room with pictures. It will be exciting to see what they’ve done.
We also heard from them that it was very upsetting getting AJ out of his chair and back into bed. We decided to send a text along to Katrina, who arrived to stay the night with him, telling AJ that there will be no more transfers into the chair for awhile…just to calm him from this worry.
And Katrina decided the best place to hang with her little bro was right on the bed with him. You never know when it will be your last time with someone…
Friday, October 29, 2021
Today…moving towards a difficult conversation.
Katrina left bright & early as Val came in to stay with AJ. Val witnessed some oral care for him, which includes briefly pulling the Bi-PAP mask. He doesn’t like the mask removed, and as any big sister would do, she told AJ to stay calm, he was fine, he’d get thru it… and there’s AJ, once done, being his usual self in giving Val the stink eye and ignoring her for 10 minutes. Sibling rivalry!
AJ figured he’d get Val onto playing Mario Cart with him. That would fix her. But Val’s no slouch… she caught on… and then AJ wanted to change the game! Oldest and youngest maybe can’t be left alone together!
Jocelyn showed up to give AJ some respite from Val. Val left still quite pleased with her new gaming skills. With the sibling rivalry settled, they doctors figured it was safe to enter and do the x-ray that was on the schedule. This is a fairly quick procedure as they have portable x-ray machines and do it right in the room.
Jocelyn enjoyed some time with AJ and they welcomed Jeremy to join them just after lunch. The three of them have good times figuring out fun ways to communicate, playing games, and watching movies.
Joanne and I had brought Jeremy with us as we were heading for a round table meeting at the hospital at 1 pm, including doctors, nurses, family and folks from QoLACARE. The main two considerations for the meeting were first, what kind of care for AJ would be beneficial and what care would be too extensive causing more harm than good, and second, having the difficult conversation with AJ regarding his life expectancy.
It was a helpful meeting in many ways. Any care that would require surgery and related trauma was decided best to avoid due to his challenged current health. That left us continuing with the Bi-PAP with ‘training’ towards short periods of time, as possible, off the Bi-PAP – (big sister Val wasn’t so far off). That also left us with a desire to make things as pleasant for AJ as possible. We were reminded that any further ‘acute events’ (as there was on Tuesday) could mark the end.
Having considered the medical end, we also talked about who, when and what. Who would talk with him and when, and what would be the initial things to say. We discovered through discussion around this that as the typical life expectancy of Duchenne kids is late teens/early twenties, as AJ has been told from various sources, and that his current reality isn’t in line with this. That ‘gap’ would need to be addressed. In addressing that gap we could bridge his challenging question from the other day, ‘Am I going to die?’ That covered the ‘what’.
As for the ‘who’ and ‘when… the when was easy. All of the family agreed that AJ is too intuitive and wise to think that something isn’t up, so today would be the day. As for ‘who’…. It was decided that Joanne and I were closest to him as mom and dad, and with the accompaniment of Kate from QoLACARE, trained in ‘end of life care’ we would initiate the conversation with him followed by Gramma and Aunt Kelly and Janice (CAS). We wrapped up the various meetings and aimed to meet with AJ at 4 pm.
I cannot tell you exactly how the words went. We were given the right words to say and the strength to say it.
Here’s what we sent the kids on our family chat as we reflected driving home:
“This afternoon we had the difficult conversation with AJ about his accelerating disease/condition and that the end of life is most likely a lot closer than expected. He listened intently as Dad explained it to him, as if he knew it was coming. It’s challenging, but relieving to know that he knows the situation. He asked for the iPad and typed out:
‘maybe God will bless me with another 7 years’ and (after unpacking that a bit)
‘maybe we will look back at this and laugh if I make it’
Seriously!! And two times he told Dad to ‘calm down’… What a kid!”
It was amazing to look into his eyes and see peace, but also the gears of his inquisitive mind are turning. His eyes are so expressive and always have been, but more so as his speech is so impeded by the Bi-PAP mask. We ended our time together with a short prayer, just the three of us, and when I said Amen, AJ sang beautifully through his mask, Amen, Amen, A-a-a-a-men, as we would do ending a worship service. I think that is what we just experienced.
We had some laughs before we left and we decided that today was as good as any day to begin the 7-year journey, if God would grant it. And if not, maybe just 7 days, 7 weeks, 7 months? We don’t know. And no one does. Maybe that’s why there’s urgency to live everyday to the fullest. So that is what we decided. Even through the pain and frustration, sorrow and tears, we would make each day count and aim for some joys in it all! Because tomorrow is never guaranteed… not for anyone!
Some of the rest of the family was invited into the room now to spend time with AJ as we made our way out.
It will be interesting to see how processing this deep and challenging reality affects AJ and the rest of us. Emotions will be up and down. But through it all, Christ is the solid rock on which we stand. That gives us hope for today in this life and beyond!
“He alone is my rock and my salvation, my fortress; I shall not be greatly shaken.”Psalm 62:2
Saturday, October 30, 2021
To love and be loved…
Uncle Joe had taken a turn sleeping over. He is one of AJ’s favourite people; AJ speaks of him often. Partway through the night when AJ woke up, he asked Uncle Joe for a hug…and then AJ further inquired if he could get into the bed and put an arm on him just like his sister did. ❤️❤️ Despite the tight fit, Uncle Joe made it happen and got into the bed! It wasn’t long till AJ fell asleep.
There’s something so precious and calming about touch and closeness… especially at times of uncertainty. Feeling the soft embrace and closeness of a loved one brings certainty that ‘I am loved’. It can make words not even necessary.
One of the ways God’s love shows up in our lives is when others surround us with their presence and their love. Sometimes it’s simply being in the same room with someone, and other times it gets closer. In many ways, love is felt. And felt love brings security.
When morning came, Uncle Joe stayed till another friend-of-the-past showed up: Linneah. She used to be one of the caregivers for AJ who would take him on outings once a week. She recently had twins so hadn’t been around for a bit and wanted to stop in. She brought a couple of books for AJ – the Star Wars Trilogy story and Lego Monsters. Some hefty reading is on tap. After enjoying some time together, she left just before Joanne and I made it in.
We came late morning as the nurses were wrapping up some routine activities with AJ. And wow! We came into his new room, which included an adjacent guest room complete with a kitchenette and bathroom. He had been moved last evening after we had left. This will be useful for visits that overlap and making some coffee and snacks while there.
Joanne and I enjoyed a very relaxed time with AJ after a hectic week. Other than a therapy nurse that did some exercises with AJ, we had several hours with just the three of us. The hospital is quieter on the weekends and the pace is slower. We didn’t have to meet any doctors and no visitors were slated for the afternoon, so we had a much calmer day. We let AJ pick what he wanted to do and shared numerous greetings and best wishes from people. He chose some reading time where I read to him (Star Wars of course), we did some PS3 gaming time, AJ helping me learn tennis and basketball. His little fingers still handle the controllers remarkably well for having lost all arm function. He also convinced Joanne to play a simple game but that lasted only about 10 minutes.
During our gaming time, snacks galore showed up when one of AJ’s teachers, Miss G., popped in unexpectedly! What a surprise! Our kitchenette got stocked. And she got stoked…from seeing AJ. It was a win/win! Thanks Miss G.!
We wrapped up our time together with a movie but didn’t get very far seeing as Katrina and Annika showed up. We said our good-byes to AJ and headed out. We had heard that on the books for the evening was a Saturday night bath!
Hmm. Remember Saturday night baths? Sometimes fun, sometimes trouble!
Well, the right reinforcements had showed up. Katrina is a trained PSW and Annika a nurse. (They hadn’t known about the planned bath though, but they were up for the fun!) Plus, with the nurses on staff who wouldn’t take ‘no’ for an answer, AJ was outnumbered. He was signaling a bath wasn’t necessary already when we were there (sound familiar boys???) …but this was one part of the day he didn’t get to choose.
They did leave him one choice: mode of transportation to the bathtub area. Either it would be a rolling hospital bed or his power wheelchair. Familiarity and comfort won… he picked the wheelchair.
Katrina shared a bit from the bathing experience:
“Many hands make light work – 😊 he did so well!! He was nervous at first about the bath, but he calmed down with lots of (self) directing from AJ once again to make him comfortable. He enjoyed a nice head massage from the nurse during the wash too and a good poo as well… lol. Looked so clean after! Love a clean boy… haha. He also got to drive his wheelchair again which I think he likes. After the bath he was quite tired and even asked if he could stay in his chair! He was too wet to stay though so he went back to his bed to watch a movie. Was nice to have Annie there as well who knows how he likes things done… hopefully he’ll sleep good tonight!”
Jeremy and Val were scheduled for staying overnight. Bonus for Val that all the snacks showed up. I wonder if she has connections with Miss G.???
Word came from Val that shortly after arriving back in his room after the bath, AJ was sleeping soundly. I think I heard correctly too, that another visitor had popped in with all the fun, Anna, and helped tuck him in for the night, also having a little experience from the past.
What a day it had turned out to be. A refreshing one… not just in bathing, but one enjoyed together, surrounded by many people giving and receiving love. And that includes the amazing hospital staff at McMaster. They too have enveloped us and showered us with love and care in so many ways words can hardly express.
And dialing out considering the broader perspective, many, many, many people have expressed love and care to us all in many different ways, and have upheld us with prayers and are committed to upholding us in prayer. For that we are ever so grateful. It is that love and care and upholding that we receive in Jesus’ Name that sustains us, and unites us. And it is that love that will outlast this world and flow into the next.
Sunday, October 31, 2021
With all your strength…
What a busy day from AJ’s perspective. We didn’t show up until the late afternoon, but here’s what transpired all day.
Val and Jeremy had slept over. I didn’t hear of any invitations into the bed this time, but I did hear of AJ having a few sleep interruptions that were settled. It’s quite a commitment staying over with AJ because there are indeed various disruptions throughout the night.
Mid-morning a special and exciting guest arrived…Toby. He showed up with Uncle Joe & Aunt Kelly who were sporting Peanut Butter and Jelly costumes. Toby is their therapy dog and had been permitted to visit. He must have taken cues from Uncle Joe and got right up on the bed with AJ.
Grandma Kathy was also along for the fun, but she passed on attempting the bed thing.
The R. Feenstra family, who has been great respite support for AJ over the years, heard there was a dog at the hospital and had to check it out. Although I think they originally had come to visit AJ…they loved meeting Toby. And some of them joined AJ in playing some video games.
AJ has been put on a little bit of pain medication to help with transfers from the bed to his wheelchair. The transfers are a daily activity deemed necessary for bodily movement, but that bodily movement ends up causing pain no matter how careful everyone is. Pain during transfers at home was also fairly common, but it seems more aggravated with the hospital’s different lift system and a different fitting sling. Thus pain meds are being introduced, in small amounts… aimed at reducing the pain.
To add to all the excitement, Candice visited as well, another one of his former outings caregivers.
Jocelyn came to stay with AJ most of afternoon. She was informed of the ‘Ronald McDonald Room’ on the same floor filled with complimentary snacks for families of patients. In case Miss G’s snacks weren’t enough, she added to the choices for her & Jeremy, who were staying tonight.
Being Sunday, we planned as a family to all meet at the bedside of AJ. Planning for this worked well in that we had the extra room adjacent to AJ’s main room where everyone could gather as people arrived. While waiting, AJ was very brave in getting his oral care, having a really good mouth scrub and teeth cleaning, and even spoke a couple words with the Bi-PAP mask off. This was a great confidence builder for him. The nurse on hand was super great in communicating with him too.
While family was arriving we also shared lots of well wishes and cards for AJ from the church community. This included a super large card from Cadets. AJ loves holding and reading cards. The church had also gave us a large pizza today which served us well this evening. Thank you all!
Once the family had all arrived, we notified the nurse that for 15 mins or so we’d all be gathered around the bed to sing. She gave us the go-ahead.
We sang 10 000 reasons, with AJ taking care of the drumming actions at the end of the third line of each verse, and mouthing much of the words with us.
Dathan read from Isaiah. And I led in prayer with Dathan finishing. The mood of this short time of worship together was light-hearted, primarily because AJ was in good spirits and laughing and enjoying himself.
We closed out our family time with singing a belated Happy Birthday!
There’s something that became a little more apparent to me tonight. Some people have strong bodies. But AJ has a strong spirit. What he has lost physically, he has more than gained in spirit.
AJ’s strong spirit shows in his way of loving people and blessing their togetherness. He has done this for our family, his school, and others. People are drawn to him because he radiates love and care, compassion and interest. When you meet AJ, you meet someone who will look into you as a person and seek to determine if you are the real deal, living out who you say you are, or hiding behind a façade. You might think you trick him at first, but he is wise and will study you, often seeing through you. More kids are like this, but since AJ has to be completely vulnerable around you, and because he may need to depend on you in his vulnerable state, he is on high alert to see if he can trust you.
AJ will also be concerned for your well-being, asking questions to make sure you are ok as well. He, the one restricted in so many ways, is always on the lookout for those around him.
In his spirit, he has been given the Holy Spirit, which gives him wisdom, faith, intuitiveness, spirit strength and integrity at such a young age.
Interesting how, when Jesus summarizes what loving God looks like, it does not include the body per se…
“Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.”Mark 12:30
Not that the body doesn’t matter, but it’s not the condition of the body that determines our love.
AJ loves with all of those… with his heart, soul, mind, and strength, despite the condition of his body. And all of those, including strength, show up in different ways for him and for each of us, that God might be recognized and praised through it.
Monday, November 1, 2021
Onto a Schedule…
It’s Monday and a spreadsheet schedule has been put in place for visiting AJ. That’s a good Monday thing to do. Jocelyn came up with the idea after keeping track by texting much of the first week. Ideally only 2 visitors are with AJ at a time, so the schedule makes sure various guests can be included as well as allowing for the family to cycle back through. The overflow room is also nice if there is overlap or for the occasional unexpected guest.
Wilhem, one of AJ’s summer camp counselors and a good friend was scheduled in for about 10 am. He brought his new PS5! They had a great time connecting in person and on the PS5. Then… he left it behind for AJ to keep on using!
Gramma Kathy and Nick visited for the midday. They relaxed with AJ and later Kathy mentioned to me something about the boys having a great time on the PS5. But I don’t think she played it though. She was also super proud of AJ because in the daily nurse routines AJ spoke a few words when it was his mouth cleaning/Bi-PAP mask removal time. Way to go AJ! It will be important to keep up regular intervals of removing the mask to allow for the skin around his mouth and nose to have a break from the mask.
Joanne and I were slated after Kathy and Nick and a couple of other visitors who popped in. We had a nice quiet visit from 4:30 – 7:30 pm. AJ is getting good at articulating words with his mouth behind the mask and if we really get stuck, the new PS5 has an easy access typing screen. AJ is so handy with the controllers!
If you do get a chance to visit, be ready to pick up a controller even just for a quick round on the PS5. AJ taught me the basics. And if I can do it, most could do it. I played some kind of fighting game with him and managed to win a few rounds. That generated some good head and eye-rolling reactions from AJ! Did I see that competitive side that doesn’t like losing??? Kids… know what I’m talking about?
I got to read to AJ for awhile as well. We have a book called ‘A Long Walk Home’ to finish that we had been reading at home on occasion.
Get this… we even make room in the schedule for international guests. Pappa (AJ’s grandpa) and Karen from South Carolina made the drive up here and showed up around 7:30 pm. What a nice surprise for AJ! He was bouncing in his seat when he saw his Pappa! They stayed for an evening visit along with Uncle Joe and Aunt Kelly alternating using the overflow room.
And nothing like wrapping up a day with Mom (Joanne) sleeping over. Yep. Mom decided to give it a go. She said AJ was so tired after a long day it was just 4 lines into a book and he was drifting off to sleep. But when she softly asked if she could pray with him, he still nodded. Nothing beats Mom by the bedside… and then asking God to keep us in His care.