Feast of St. Lucy 2022

Happy Feast of St. Lucia! 

Two and a half years since Thomas's diagnosis, I still don't know the mom that I am now, but she isn't recognizable as the mom I was before. I'll never tease apart which of my lackings/failures are because I now have a medically complex child versus because I now am homeschooling six full grades from K through high-school, plus teaching three co-op classes, all of which I was not doing a few years ago. Probably both causes contribute!

One area in which I used to excel but am now sorely lacking is feast days and the general passing-on of the faith. One child came to me in tears, saying that on the few feast days we celebrate, he isn't even informed. He just wakes up and there is something happening. He's trying to articulate that I used to educate the children ahead of time, note the calendar, read the books to them, explain how we would be celebrating the next day. If all I do is throw some chocolate coins in shoes on December 6th, that doesn't teach anything about our venerable Saint Nicholas. I'm trying so hard and still disappointing my children.

The feast of St. Lucy isn't looking how it always looked in the halcyon days. Dad and John were gone--getting a certain 16-year-old's driver's license! My girls no longer want to dress up. I managed to read our book about St. Lucy to only two children last night after a complicated day. Our big, fancy breakfast is reduced and I did not stay up late making the cinnamon rolls (lussekatter). In years past when life got busy, I switched to serving pop-from-the-can cinnamon rolls, but now I have to (get to!) make low-sugar cinnamon rolls from scratch for two and a half hours in order to include Thomas. Since I didn't even start baking until the morning, I tried to switch my attitude to embracing that this was a joyful opportunity to include my little early risers that day, and we could talk while we baked (even though breakfast was now late, we lost two hours of school, etc.).

Our family has been going a million miles an hour and I don't know when I can last look back and say we were not going a million miles an hour: pre-cancer? Maybe everyone goes a million miles an hour. We got back from Thomas's Make-a-Wish trip on Thursday and immediately pivoted to preparing the house to celebrate John's big 16th birthday with friends. A joyful event but it took two days of prep, celebrating, and cleaning up. Meanwhile, amidst all the vacation laundry and unpacking and grocery shopping, Thomas got sick and John was injured, so Monday meant that we took John into Orthopedics (6 weeks of knee rest in hopes his AML heals), taking Thomas to a pediatrician, I called the Pharmacy to straighten out a problem with Thomas's Dexcom prescription, Chris had his own doctor's appointment, Joseph had hockey at night, I was back to teaching the three elementary-aged boys (got through about one-third of their day's work), I was helping the older three dig out from a massive amount of school due to missing one week--a mountain of a task I expect to be managing through all of Christmas break-which-won't-be-a-break.

Because this is the worst respiratory illness season seen in ages, there were no appointments available for Thomas for days at our massive hospital-based pediatric office with six locations and probably nearly 50 providers, so we were sent to another pediatrician at another random clinic in another city, for which I was grateful. Unfortunately, I foolishly assumed this garden variety visit for double ear infection and conjunctivitis wouldn't involve all of Thomas's complexities, and the doctor did not read Thomas's chart or his list of medications, so a common antibiotic was prescribed to him that turns out to be totally hepatotoxic and likely unacceptable for someone with his degree of liver disease. Also, research shows that this antibiotic is absorbed 40% less by bariatric patients than healthy patients--and they still have a remnant of stomach versus Thomas having no stomach at all--so probably a conversation needed to be had about dosing of any antibiotic. I discovered all of this on my own upon arriving home by reading medical journal articles late into the night and then had to send emails to his specialists to inquire how we should proceed (still waiting on answers) . . . while our son is weeping in pain from all these infections. I failed Thomas by not thinking to ask all these many questions while still in the doctor's office.

Right before the trip, we discovered that Thomas has far more serious malabsorption issues than the team or we parents suspected, so he has vitamin deficiencies and frank osteoporosis by the age of seven. That caused heavy reading of medical articles on my part (because the doctors don't work with pediatric gastrectomy patients) and decision-making, plus purchasing of new vitamins and supplements, in the zany week prior to our Make-a-Wish trip, as well as new restrictions on Thomas's activities for his own safety.

In addition, his damaged pancreas is not happy, something discovered via a lab result a couple of months ago. We had been tracking labs for the weeks leading up to his Wish trip, and he was so symptomatic that we stopped by the lab on our drive out of town to make sure the situation wasn't acute. Now a lot of imaging is being planned by his team. Medical stress is our family's new normal.

The reading and research never ends. The concerns for our sweet son keep popping up, even when something seems like the most pedestrian of circumstances. I can never let my guard down because then I might miss something and my son would suffer more. I haven't learned how to handle that mental burden with gracefulness yet.

So when I'm drowning in laundry, the kids are far behind in school, I haven't slept hardly at all due to caring for a sick kiddo, I'm not regaining my own health, there is never enough time for what I consider should be "normal, daily duties" that "all mothers are doing exceptionally!", teenage years are SO HARD, when I can't manage Christmas shopping or cards (T minus 12 days!), and my mental burden is flattening me, that's why. That's the not-pretty truth behind a pretty St. Lucy's picture.

God allowed all of this. He could have chosen Thomas (and the other five) to have a competent mother who could manage all of this with aplomb, but he chose this mother and only God knows why. God's ways are not our ways. I don't have anything inspiring to say or to feel except hanging on to that truth.