11-01-23 Walker & Family update

Post 11-01-23

Happy Fall Y’all

In mid-October, I had the pleasure and the pain of taking a 4 day backpacking trek with buddies into the NC mountains near the Linville Falls area. The weather was an unexpected pleasure. We wore t-shirts and shorts everyday and a light pullover at night, 40’s at night and mid 50’s during the day, it was sublime. Like any journey in life, there were many ups and downs interspersed with steady pacing along level sections of the trail. Downhill was a pleasure, uphill was very challenging yet ultimately rewarding and after a 4.5 mile day followed some tough pain the next day. At least for me, my legs felt like someone had haphazardly attached them incorrectly so that I moved like Pinocchio, stilted and disjointed. 

Of course, there is no comparison between a four day pleasure trek and a 4.5 year fight for survival as in Walkers journey through the halls of modern medicine. Since I wrote in late July, Walker has had a mostly level path without any major ups or downs. Of late, The downs come from a stomach that has tormented him since getting off ECMO in May of 2019. The Docs haven’t figured it out, they have tried about everything available to help keep his stomach stable hoping it might return to normalcy but no go. The best anyone can figure is that possibly the trauma of 63 days on ECMO life support followed by almost 3 months in ICU damaged how his stomach works. Weekly or a least a couple of times a month, he will begin throwing up and it won’t stop till he gets intravenous fluids and anti- nausea meds.

And it was his stomach that tried to interrupt a long anticipated event, going to see his first live concert since 2018 - Lana Del Rey in Tampa in Early Oct. Walker and his good friend Emily were so very excited to go to the show, they talked about it and listened to Lana’s music for weeks getting ready and the day of Walker is throwing up hours before having to leave for the show. His Mom and Dad were just heartbroken for him knowing how much he wanted to go. We hoped, we prayed he could make it and somehow he pulled it together an hour before leaving and ended up having a great time. We were so happy for him. If anyone was in need of a fun night out, it was Walker.

We lie low and close to home most everyday as Walker is best at home away from potential germs and such. And he isn’t allowed to fly these days per his doctors. The doctors are happy with the level road he is on currently, very minimal rejection detected, all other markers look good, and he looks good. He has gained weight and grown out his fabulously healthy hair, a very 70’s look 😊. We head to Mayo this Monday the 6th for his semi-annual lung and kidney testing. Keep him in your prayers for great results. 

The biggest challenge for Walker now, as if he doesn’t have enough already, is what to do with himself on a daily basis. With 50% lung capacity, frequent stomach problems, consuming large amounts of medication, advised to stay clear of crowds and strangers in general, his options are limited. With all his friends from high school having moved on with jobs and flourishing in life, meeting new friends who can relate to him is just not happening. And being unsure of his future time frame is paralyzing to setting long term goals. So what does a living paradox do with his time. It’s a strange, tough, unbelievable place to be living on borrowed time with some parts of you not your own.

Through it all, Walker has never complained of his lot in life. It is his super power. Somehow, I don’t know how, he never bellyaches, gripes, whimpers, whines, or beefs about missing out on this or that, or never going to be this or that, or waxes on with I could have beens. I sure know most of would at some point bemoan these circumstances. Somehow he endures, accepting his completely bizarre fate with an unexpected grace. While he, like us, is less than perfect, he has perfected good-naturedness in response to those who handle his medical care. And yes occasionally this spills over into his home life with his loving, patient parents :-).

My request is that you pray for peace for Walker. And pray for courage for him to take the risk of flourishing to the best of his ability in his own life, to find positive work or hobbies or interest that fill him with joy. Pray that he and his family find truth in the Bible verse James 1:2 “consider it pure joy, my brothers and sisters, whenever you face trials of many kinds”. And my prayer for you is Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer”.

In Christ Love the McKnights