Giving ourselves grace amid a hectic schedule and missed appointments
Raising children and providing care for a rare condition means multitasking
I wish raising children would come with a checklist. Every day there are so many items to check off in addition to work and staying on top of the tasks around the house. When you add caring for a child with a rare genetic condition, that checklist becomes extensive.
My son Finley was born four years ago with Alagille syndrome. He is my second child with my wife, Dani. When we decided to expand our family, we thought we had the parenting thing all figured out. Jackson, our oldest son, was a smooth pregnancy and delivery, and his early years were about as normal as you can expect. So when Finley came around and his journey started as anything but normal, it was quite the adjustment.
Not only did we need to learn about Alagille syndrome, we also had to amend our daily checklist for raising children. Suddenly, it was about more than just making sure they were well-fed, well-rested, and happy. Daily medications, intense formula requirements, and balancing a multitude of doctor appointments became the new normal. In the four years since Finley’s birth, most of those things have become part of the routine. But with everything going on, it can be easy to accidentally let things slip.
Finley Sandstrom loves to keep his family busy. (Photo by Jay Sandstrom)
A few months ago, we had a gastroenterology appointment, which is our main point of care for Finley’s Alagille diagnosis. But it’s just one of the specialists we see throughout the year. At the appointment, we realized we’d forgotten two other appointments we should’ve had in the fall.
One was with an ophthalmologist, as it’s important for those with Alagille to monitor their eyes. The other was a regular ultrasound we do twice a year. Forgetting these appointments wasn’t the end of the world, but it’s not exactly how we want to be navigating Finley’s care.
It’s easy to blame several things as the reasons these appointments fell off our radar. But, ultimately, the checklist must be completed, whether our daily schedule is busy or not. It was an unfortunate experience.
We’ve also had days when we’ve forgotten little things here and there. All we can do in these situations is remind ourselves to do it next time. It’s important to give ourselves some grace and try to put our best foot forward next time.
Obviously, the child-raising checklist evolves over time. Some things become routine, while others are harder to get used to. I’ll continue to work on making sure we don’t miss the bigger items while allowing myself grace when we occasionally miss the smaller ones.
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