Fall Stuff

I’ve been busy. But, as I sit at CHOP while Fulton and Teddy get their second drug infusion (no problems since the first, but no real gains either), I thought I would write an update; one hopefully a bit more cheery. Thank you to everyone who commented and offered prayers after my last post. I don’t really want to launch into more insurance woes, but I continue to be surprised on a weekly basis by all the new costs and inconveniences we are encountering, so your ongoing prayers remain appreciated.

It didn’t work for us to hit the Cleveland Oktoberfest this year, so we made sure to attend festivities at the Lancaster Liedenkranz. There is one handicap table in the main pavilion we managed to secure last fall, and so while it was full when we arrived, we stood nearby and kept an eye on it. After a little while, a man came over and invited us to join him and his son at the table since another party had left. His son was in a powerchair similar to the model Fulton and Teddy use. Both father and son were in lederhosen and drinking out of large steins- a good sign. We struck up a conversation, and learned the son had a major in history, and a minor in German (which had earned him a scholarship from the Liederkranz). He also has a MBA and he works at a museum. His interest in WWII history led him and his father across Germany, including Munich for Oktoberfest – a trip we’d all like to make, but assumed would be a nightmare due to crowds and a presumed lack of accessibility in the historic Bavarian town. But they highly recommended it! And gave us all sorts of tips and shared their own fun experiences. We mentioned our family trip to Paris, Venice, and Rome, and they said they’d avoided Venice for fear of it being too inaccessible. And so we got to share what our brief stay was like and encouraged them to visit. I couldn’t help but wonder how many people at the Liederkranz were looking with pity at our table, presuming there were three “wheelchair bound” intellectually disabled young men seated there, when in actuality, we might have been some of the most well traveled people in attendance!

Watch how uncoordinated Tony and I are when its comes to polka!

I turned 47 on September 26. I’m not sure how I’m feeling about being firmly in my late forties. Tony and I are still hoping to do an overnight away as a combined birthday / anniversary present to ourselves (24 years on October 13), but I haven’t worked out all the details yet. It’s an involved process. But we did get out to dinner at one of our favorite restaurants downtown. Edie took me to Goodwill for a birthday gift where I found many treasures and she paid for my new four horsemen of the apocalypse sweater. We mailed a care package to Addie for her 23rd birthday, and we celebrated Teddy’s 15th birthday with family a few days early on the 4th. He’s still trying to figure out what experience gift he wants from us; he always wants something new and novel and that’s getting harder without spending $$$$$. Meanwhile, we’ve already purchased tickets to the Philadelphia Orchestra for Byron’s present (at least his third or fourth visit). It was so much easier when they were little and a trip to the zoo or day trip to Ocean City along with a stuffed animal souvenir sufficed.

I did finish painting both smaller bedrooms, and while I’m here at CHOP, new carpet is being laid in both rooms. I didn’t get the six closet doors painted yet; they’re louvered and require a TON of paint to cover. They weren’t painted bright colors, but for some reason, even after three coats of white paint I can still see some of the pale colors peaking through. I hate painting them and honestly, I might not rehang them in our bedroom, but that would require us to keep our closets perpetually neat and organized, so we’ll see.

I should’ve reviewed my goals at the end of September, and at some point at the beginning of the school year between all the insurance hooplah, I did reflect on my New Year’s resolutions and in general, my long term life goals. I might have gone through a bit of a midlife crisis as I reflected on the fact that I only have fours years of homeschooling left. If I homeschool Teddy until graduation, I will have 24 years homeschool experience. In any other field, that would be an impressive track record, but to the world I will simply have been out of the workforce for 24 years. My only accomplishments of note are getting my book published, founding a small non-profit, and occasionally getting paid as a public speaker. I can’t bolster my resume with my children’s accomplishments. And so, once I am no longer a homeschooler, what do I want to do? Who am I outside that identity? And outside my identity as a special needs parent/ caregiver, since my sons are approaching adulthood and hopefully become more independent. I spent a lot of time mulling over those questions.

Homeschooling my kids has taught me a lot about myself, and as I think about the future I realize I want to keep learning and teaching in some capacity, but not in homeschool spaces. I also love very specific subject matter and ages; for example, I cannot transition into becoming a kindergarten teacher. I don’t want to be self-employed, therefore I don’t want to lean more heavily into blogging, freelance writing, speaking, or even the ministry. I don’t want to do anything that requires me to have a social media presence for promotion. But I do want to work: there are professional goals I want to accomplish. So, I created a four year plan to help me get in a better position for when Teddy graduates. My ultimate goal could still change (and maybe I’ll learn its not realistic), but it felt good to figure out what I want and give myself permission to transition away from certain activities and start actively moving in a new direction. (I hesitate to be more specific as it still feels like such a stretch, but maybe as I continue to work towards achieving my goal, I won’t feel embarrassed sharing it online.)

My new 4 year plan doesn’t really take away from my New Year’s goals, in fact the renewed focus has made it easier to “engage in more meaningful rest/ downtime” and “be purposeful in my social media and online time”. I’m hoping to improve the plant based eating during Advent since back to school stress of all kinds has me at maximum cheese eating capacity ( I may start my season of penance after Martinmas). In the fun projects category, I decided to focus on isometric drawings and film photography (both very easy to pick up, clean up, portable and can be done offline). However, themed Halloween decorations/ costume construction will take up most of next week (off school – WOOT!) and that definitely counts as a creative project.

The only truly sad news I’ll mention is the sudden death of Tony’s cousin Tim. Please keep him and his family in your prayers. He leaves behind three daughters. Tony flew out to the midwest for the memorial service last weekend and its just tough.

As I re-read all that it’s still not very exciting. Sorry. Thanks for making it to the bottom of this post anyway. Have a great weekend!