This post: Dec. 5 – Dec. 17 // For all posts CLICK HERE
It’s hard to believe we’ve hit the milestone of 7 weeks! We entered the hospital about 8 weeks ago and within the first week, on October 29, we were having the difficult conversation with AJ that he was likely nearing the end of his life sooner than expected.
I remember that afternoon clearly… Joanne and I were at AJ’s bedside fighting back tears sharing with him the difficult diagnosis of his situation. AJ was not able to talk all that well through his full Bi-PAP face mask so he had typed on an iPad screen… ‘maybe God will bless me with another 7 years I don’t know’.
This certainly broke the tension of a difficult situation with the reality that God was and is still in control and AJ was trusting in Him. We laughed and had to agree. Here is what I written that day:
“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!”
And here we are, by God’s grace, at 7 weeks! I showed AJ the memo in my calendar “7 Weeks for AJ!” and his eyes popped! He too was surprised!
We’ve experienced a lot of provision over the last 2 months particularly in how God directs things no matter how we might anticipate the worst. We think or presume one thing, God does another, towards His plan and purpose. And so we continue to marvel at how He brought us to 7 weeks and wonder…is it towards 7 months now??
Here are some highlights over the last two weeks:
Dec. 8 – A family friend, Bre, got AJ stocked up (and stoked) with candy canes, books, CD’s and the latest Star Wars movie (which Dad and AJ will quite enjoy) . And it wouldn’t be Bre if she didn’t show up with some Family Time Pizza! AJ couldn’t wait to enjoy a slice.
Dec. 9 – Some players from the CFL Tiger Cats & Grey Cup showed up at Mac. AJ got to travel downstairs and meet with them.
Later that day we also had our first weekly doctors meet in the ward, meeting various new people involved now that AJ is on a ward. Discussion revolved around familiarizing with AJ’s situation seeing as he just ‘moved in’, and considerations towards what it would look like for AJ to be able to go home. Two initial targets would be to have him off his breathing machine for approximately 8 hours per day, and motivating him towards this, as well as having a few family members trained on appropriate equipment going home. And a third extended consideration would be to secure nursing support for AJ in the Wanders home.
As the week progressed, Nate took a couple nights to stay over with AJ. He hadn’t been able to do this for awhile so this was a welcome new face for AJ.
A couple of teachers came to see AJ again, and even his principal came and brought very tasty shortbread cookies! He showed AJ a number videos of school happenings over the past couple of months. It is so great to see his school community maintaining connection with AJ.
Gramma Kathy brought in a favourite meal… get this… BBQ’d honey sausage and rice – loaded with soy sauce of course. What a combination!
Dec. 12 – I’m not sure if this was dubbed ‘marathon day’… but AJ went 6 hours off his C-PAP (Stellar) breathing machine, his longest single ‘run’. And guess what he was doing? Playing video games with the man upstairs…. Josh H. from the 4th floor! Josh stopped in to visit because we were all home celebrating Jeremy’s 16th birthday. By the way, AJ informed Jeremy that he is looking forward to Jeremy driving him around in his wheelchair van. Jeremy… onto those driving instructions!
Dec. 13 – AJ had another fairly long stint off the C-PAP machine this day as well: 5 hours. But no Josh. Too bad. I didn’t hear what occupied him on this day. Either way, nice work AJ!
Dec. 14 & 15 – After two days of lengthy periods off the machine, AJ requested some easing up. These two days he only went off the C-PAP for short periods of time to eat. I should add that when he eats it is a requirement that the mask is off. Otherwise there is greater risk of choking on food caught in the forced air to the lungs.
We slipped in one evening for a Christmas photo just after his eating. We had requested permission for the four of us (who live at home with AJ) to come at the same time in order to take the picture. Permission was granted. After some creative set up for the photo op, it only took 3 attempts and we got a picture we were happy with. We did this primarily to send Christmas greetings and a thank you to our beloved church family who have embraced us with so much love and care.
Dec. 16 – We had another doctor’s meeting today. It was stressed that increased consistency in the tracking and scheduling of AJ’s C-PAP usage will be important moving forward. That way it will be easier to his monitor his progress and help AJ succeed in targets towards going home. We have also been placed in the que for training purposes on the various pieces of equipment that have become part of AJ’s daily life.
“Going home.” Some days it seems so far out of reach. But so did 7 weeks. AJ has moments when he is discouraged and sometimes mentions how home seems unlikely. He has been through much and we can’t really imagine his frustration. But our encouragement remains the same… keep your eyes fixed on Jesus and trust in Him as He gifts us with each new day. Where we live them out and how many we get aren’t revealed to us. Maybe that’s good. That way, day by day, we learn how to live trusting in Jesus for all things.
Dec. 17 – Celebrating 7 Weeks!