The mistake that stands out in an already difficult morning

I’m not a morning person. Truthfully, nobody in my household is. Still, our weekday morning routine frequently features at least one sleepy and grumpy individual. Not to call him out, but my son Finley has been the main culprit of this lately. Normally that’s just behavior to navigate, but there was recently an extra layer that was connected to his Alagille syndrome diagnosis.

For the past few months, it’s been challenging to get Finley up and moving in the morning. I’ve written about his challenges with sleep, so it’s no surprise that he’d prefer to sleep in instead of being awakened to get ready to head out to day care. On an average day, the routine is pretty simple.

But if he isn’t feeling it, Finley can muster up quite the attitude.

A case study: Living with Alagille syndrome

Finley enjoys the toy trains at the local children’s museum. (Photo by Jay Sandstrom)

The other day, I went to get him up, but he wouldn’t budge. I finally carried him downstairs, but then the proverbial you know what hit the fan. He screamed at the idea of sitting on the potty. He refused to take off his pajama shirt. He cried and fought with me on putting on underwear. Through all of this hectic action, I just got him dressed and forgot to come back to have him use the bathroom. That came back to get me later.

At this point, I thought I’d navigated the worst of the Finley storm for the morning. I got lunch ready for my oldest, Jackson, to go off for the bus; that’s when I typically take Finley his medication; he currently takes three kinds in the morning to treat his Alagille syndrome.

Thankfully, he easily takes his morning meds most days. But this time, he threw them back at me and screamed. Feeling the time crunch, I put the med plungers on the mantle and finished getting Jackson ready for the bus. I said to myself that I’d let Finley continue to settle and come back for the medication before we leave the house.

I stepped back, and it looked like everything was ready to go. Bags were packed, my coffee mug was in the car, and the kids were finishing up their food. On top of the normal deadline for the day, I had the looming visit of a plumber that morning, and first I had to drop off Finley at day care and get back. I remember thinking that Finley had chilled out. Since the car ride usually continues to calm him down, I was ready to hit the road.

I peeled the fleece blanket off Finley and found that he’d had an accident on the couch. See, I told you that my forgetting to get him back on the potty would come back to get me.

Upon this discovery, I lost it. I was already stressed and feeling the pressure of the morning’s responsibilities, including the race against the clock for the plumber visit. I later had to later apologize to Finley because I reacted in a way that wasn’t fair. My capacity to navigate the challenges had run out, and though this accident wasn’t the end of the world, it sure felt like it at that moment.

Finley the superhero poses at a friend’s recent birthday party. (Photo by Jay Sandstrom)

I got him cleaned up and out to the car. The car ride went smoothly. Drop-off at day care was a breeze; while he has his moments, there are also times when Finley is a great kid. The drive after drop-off is usually the moment I get to exhale for the morning and take a breather before I start work.

But on that day, an image rushed into focus: the medication sitting on the mantle in our living room. My heart sank.

Is forgetting his medication for part of the day going to make a major impact? No, but it will affect him during the day. Not having his meds to help with the Alagille itch is going to play a role in his day. Through all of the chaos of that morning, I forgot the one thing I truly shouldn’t forget, one of the most important parts of our morning routine. But I did, and I spent the rest of the day sitting in that guilt.

I am working on giving myself grace and developing strategies to help Finley when he’s going through a tough attitude period. We’re getting there, but I’d be lying if I said it’s always easy. I forget things and lose my cool at times, but I’m still trying to be a good dad. It’s hard, even before you add in a rare disease complexity.

I just need to remember to breathe and try to bring my best self to me and my family.

Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.

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