Homeschool

We always talked about homeschooling, but we never thought we’d actually do it. E was supposed to go to parochial school, and then COVID hit and we decided to keep her at home to keep her safe. Now here we are, two weeks away from being done with our first year of homeschooling and we’re planning to continue it. There are many benefits of homeschooling that we like, such as having a flexible schedule, tailoring our girls’ education to their interests, and using different teaching methods. But there are definitely many other benefits that I only realized fully after speaking to a friend about why we’re continuing to homeschool. Those benefits include the following:

We don’t have to adjust med times for school or teach school staff to give meds. We would have had to shift E’s med times earlier in the day if she had gone to school, and we would have had to teach faculty and staff to give her meds since the school we planned to send her to didn’t have a full-time nurse on staff.
Related, I don’t have to worry about something happening to E’s med backpack at school – whether that’s meds being spilled, being left out in the heat, being forgotten, or curious little fingers going through it.
We don’t have to worry about E bringing home contagious germs from school!!!
We don’t have to worry about E meeting her drinking goals at school. I worried that E’s progress in drinking would regress with going to school because she would be too busy having fun that she would forget to drink. And I couldn’t expect a teacher to police her all the time when they would be responsible for other kids as well. I worried that we would have to resort to multiple boluses a day in order to meet her fluid goal.
We don’t have to worry about making sure her teacher applies sunscreen for recess. One of E’s anti-rejection meds causes an increased risk of sunburn, therefore increased risk of skin cancer. So she always needs to wear sunscreen or sun protection when outside. This is one of those little things E needs that we are so accustomed to, that it fell off my radar of things I would need to tell E’s teacher. It wasn’t until explaining to a friend all the things I do for E that I realized something so little could be time-consuming for a teacher with 17 other students to monitor.
We don’t have to worry about bathroom incidents when gut bugs happen. While E is completely potty-trained, she sometimes still needs help in the bathroom when she has a gut bug.
We don’t have to worry about missing school for appointments and hospital stays! While the principal of the school we intended to send E to said that the school would be completely accommodating of E’s medical appointments, there still would have been assignments and class experiences she would have missed and needed to catch up on. Now we just work our school schedule around appointments.
We don’t have to worry about medical alert bracelets and allergies quite so much. I still want to get her one for when we travel, but we would’ve had to get E a medical alert bracelet for school in case of an emergency. A medical alert bracelet would let first responders and medical personnel know about E’s transplant status and her allergies to the class of drugs known as NSAIDS.
We don’t have to worry about her g-button coming out. While having a g-button feeding tube is normal for E and second-nature now for the rest of us in the family, we always worry about the button coming out when E is under the care of someone outside our immediate family. The button coming out isn’t as big of a deal for us anymore now that E is a big girl, but if it gets pulled out in play on accident, it is a shock and does cause E some pain. Putting the button back in is easy if you know what you’re doing, but you need to be trained how to do it, and there is a very small window of time to get it back in before the hole in E’s tummy where it goes closes back up. If that hole were to close, E would have to have surgery to have the g-button put back in. That’s something no one in our family wants. E is very good at protecting her button, but kids are rough, and sometimes it comes out while she’s playing. I have had to rush home from work in the past to put her button back in and I would have hated the trauma for everyone involved if I would’ve had to rush to school to help with a button incident.

Sometimes I worry that E will miss out on the formative “school” experiences – like riding a bus, going on field trips, playing with friends at recess, putting on school programs, etc. But then I think about all the times I’ve seen her face light up when she learns an especially fun new fact or how proud she is to have mastered writing her letters and I’m so glad we’re in a position to homeschool her. I know homeschooling is a common alternative to regular school for transplant families and that it works well for many of us. But I also know that there are many transplant families who aren’t in a position to homeschool. They have to do everything I listed above and more to work with their schools to get their kids the education they need and deserve. My hat is off to all those families making in-person school work for their transplant kiddos.