1st Day of Jesuit College Prep High School!!! Johnson Duo, Class of '22
Dori is a big time 4th grader and was delighted to get back to his mornings with his teacher Miss Carolyn! He had been talking about her and asking for her all summer so he is a real academic winner (like his shirt says).
Alex tried something completely new... he joined Crew. He rowed rowed rowed his heart out from August until just last week. He'd never set foot in this sport before and he took a chance going all in. The first few weeks of his season were marked with triple digit practices at the lake, muscle soreness, lots of running and bloody palms from calluses earned from all that rowing. First semester regattas took him to Oklahoma City and Chattanooga. He really enjoyed it and made a good group of friends through the process. Since it's an intense year round sport (including spring break and summer practices) he decided to focus on something else that wouldn't consume so much of his time. He quit last week (I hate the word "quit" but that's basically what he did with our permission) and is now a free agent back in the sport market (ha ha). Currently he's giving soccer a try so we'll see how that goes.
Here is Alex at the top left of the photo. I had visions of Harvard as soon as he joined Crew but I have to remind myself it's not about me. But seriously, how cool is crew!? I even bought a cowbell for the regattas so now it's time to repurpose the cowbell and refocus on what other interests he has that doesn't involve video games.
The boys have truly fallen in love with their school. The rigorous academics have been an adjustment but everyone tells us not to worry because once they graduate from Jesuit, college should be a breeze. Here's hoping!
Two nights ago Ben started on the Freshman Gold team for basketball. For the longest time we didn't know if he "made" the team since it's an ongoing try-out process up until the first game. He and his teammates were nervous but they managed to beat their opponent over 20 points so they all walked off that basketball court with big smiles. Alex had a great time in the student section cheering everyone on.
Dori entered the threshold of DOUBLE DIGITS for his birthday this year! He was 10 on 10/27! Since he LOVES music we made his cake reflect his love for jamming out. On the top handle of his boombox we placed a small "W" with wings on it to honor Wynnie who celebrated from above. It's been four years since Wynnie passed away but we always keep him in all our hearts and celebrations.
For the past two months, Dori's health has been increasingly deteriorating. It's a familiar decline that is reminiscent of Wynnie's final few months. Dori requires more help to breath. His body gets worn out very easily. He's not able to stay out of his bed and hang out with us like he used to. He used to be able to be with us on just his nasal canula air (tube in his nose) for 2-4 hours at a time. In the past month he's dwindled down to being able to hang out for 20-30 minutes, to where now he's able to only eat and quickly take his medications for 1-2 minutes at a time max. It's a huge difference and we see and feel him struggling, but he is still Dori. He still asks for ravioli at all hours (honestly he has no business eating ravioli but we indulge him as much as we can). He still hollers out requests for his favorite songs, and even though he asks for "snuggle time" he'll still get mad at you if you touch him too much. With a single swipe of his hand his body language screams "Hands off woman!".
We've been increasingly trying to prepare Ben and Alex that our time left with Dorian is very short and will soon be coming to an end. We don't know how much longer we'll have him to love on him and be his personal DJ's so we're just focusing on surrounding him with as much love as possible. He still calls out for Ben and Alex -- I don't know if he does that because he is nosey and wants to see what they are up to, or if he thinks he's helping me call them down from upstairs. He's always been a great helper in that regard.
We haven't gone around making grandiose sad announcements because that's not us. All we want is your prayers and friendship. Dori has blessed us for years beyond what we had ever anticipated (suck it "3-7 year i-cell disease life expectancy") so we are so proud of him!! His stubborn will and his heart of gold have carried him through. Our hearts are full of so much love and admiration for him and for all his care-takers that help us care for him while we're running the boys around all their school and athletic activities. We're beyond blessed to have such a wonderful supporting cast of friends, neighbors, family and medical professionals that have made this journey as positive as could be.
Dori received the Holy Sacrament (The Anointing of the Sick) by Father Matthew from St. Rita last week. Father's real name is a beautiful Polish name for Matthew but I don't know how to pronounce it nor how to spell it. He was very kind and Dori received him very nicely (he usually does NOT like new people). We didn't know if Dori would get upset and thankfully he did not; instead he listened attentively during the prayers offered for him and the blessing given to him and kept saying "HI!" to Father Matthew. It was so cute.
This is a familiar path that we are heading towards and I'm just fortunate to have Chris as my rock during this, to have my goofy teenagers to serve as playful distractions, and to have a fully stocked adult beverage area in my home to get through this all. Oh... and when things get real uncomfortable I also resort to the comfort of bad jokes and inappropriate comparisons which many have come to mind during the composition of this post but I have restrained myself numerous times so yay me.
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