The Highlights

It’s been so long since I’ve written, I hardly know where to start. Lots of things have been happening; from large and life-changing to small joys only I can apprieciate. I will touch on what I can with no promises to do better with blogging in the future (because who am I kidding?)

My mom had open heart surgery to repair an anyeurism on her aeorta (which means part of her aeorta had stretched out like a balloon and was in danger of rupturing.) I went to stay at my parent’s house to help with her recovery on the day she was discharged from the hospital. I stayed for five days and thankfully, she’s continued to do well and four weeks out, the surgeon is very happy with her progress.

I’ve taken a lot of time away from my husband and kids over the last year to travel and speak, or visit with family. While I’m glad its possible for me to do so (only a few years ago, these types of trip would’ve been a lot harder if not impossible), its certainly due to Tony being willing to take on the extra responsibilities that solo parenting Fulton and Teddy require. Honestly, I wish he and I could travel together, or that it would be easier to take the boys with me sometimes, but for now, I am grateful for the opportunities Tony’s given me to share the work of Accepting the Gift and be present for family. Philly MDA camp is a go for this summer (after three years of cancellations), and I know we’re both looking forward to spending time alone together (even if we need to wait until August).

Addie and Byron came home from college in May. Byron easily emptied out his dorm with everything fitting in our four door sedan. Addie is leaving BOXES UPON BOXES of items, as well as furniture, at her boyfriend’s parent’s house for a few months. (They are very wonderful and generous people and they love my daughter which makes them [and their son] A-OK in my book.) Granted, she lived in a suite with a full kitchen, but there really are some big difference between daughters and sons; packing for college being up near the top. This will probably be Addie’s last time living in NJ for awhile. She starts her senior year in August and will be interning during the school year, and then beginning work on her masters degeree in social work immediately afterwards while continuing to work in the field in Ohio. I know she wants to eventually move back to NJ, but I also know her boyfriend is very attached to Ohio. It will be harder to send her back this year I think.

Byron’s first year at Kutztown went well. He can be a hard kid to read some times, and I told him he could always transfer if he wasn’t happy, but he’s content to continue where he is. Because of all the college credit he earned at the community college during high school, he will be a junior next year.

We dealt with another round of illnesses in May, but thankfully avoided a hospital stay (unlike last year). Teddy missed a couple days, and Fulton missed a week, but everyone is back to normal now and we’re starting June disease free!

I crossed some major projects off my to do list. I finally put together Fulton’s beach wheelchair, and then with the help of my father in-law we had to redo many parts of it that didn’t quite work as well as designed. We ordered the parts for the beach chair two years ago, but they didn’t all arrive until September 2021 and I wasn’t able to get the chair together and get in any fall day trips to the shore. And then last summer, Fulton needed to use his old wheelchair as his primary chair because his newer chair was broken and it took MONTHS to get it fixed. Althought the beach chair was promoted as “easy on and off” I didn’t want to risk something happening to the old chair while it was in beach mode since Fulton needed it for daily use. So we missed another summer. I started assembling the beach chair one weekend in April and it wasn’t as simple as I envisioned. It took all day, plus lots of help from Tony and finally, the chair wouldn’t drive well. I had to rejigger several of the parts. We tried again and the chair still had difficulty. I let it sit for a bit, and when Tony’s parents were in town, his dad tried moving a few more things around. It’s better, but it doesn’t turn well and, at this point, I have no idea how we’ll actually get it to the beach. The wheels don’t easily “pop on and off” and with all the balloon wheels on, it doesn’t fit on our lift, so I’m not sure how to get it in the van. For all the money we spent (that several of you generously donated a part of), its not living up to my expectations at all. I don’t know; maybe my expectations were too high to begin with, but, this also wouldn’t be the first time a medical device doesn’t live up to the hype. We’ll continue to work with it and when we finally get it on the beach, I’ll be sure to commemorate the momentous event with lots of photos.

I also finally finished my piano bar. It lives on our screened in porch and has been a handy serving sideboard since we moved in, but now it’s finally covered in outdoor paint to protect it from moisture and we got a shelf added as well. I still want to add some lighting, but, I’m really pleased with the final product.

On the “professional” front, I finally completed (with help) Accepting the Gift’s religious education curriculum. It was created for Catholic special needs parents who either choose to educate their disabled child at home, or are not able to put their child in their parish’s religious education program. (This happens more often than you would think for a variety of reasons.) You can learn more via this snazzy video.

We’ve got big things coming up in June which I’ll be excited to write about after the fact. Otherwise, that’s probably enough for one post.