It’s been an exciting week.
We settled on a beach chair! We’re going to get a kit from Hotshot Products that will allow us to turn Fulton’s old powerchair into a motorized beach chair. (It’s a disabled run business! Learn about the founder here in this video from Inside Edition!!) We’ll still have the option to use the chair as a backup powerchair if/when one of the boys’ regular chairs breaks down, as the beach wheels can be added and removed when needed (making transportation easier!). Currently the old powerchair is dead and needs some updating, so rather than purchasing a kit RIGHT NOW like I want to do, Tony (responsibly) suggested replacing the batteries and making sure it runs and checking the electronics before investing in the beach chair kit. So I’m waiting on batteries from Amazon. (Update: Batteries arrived and the chair works!!) I will also need to replace the back of the chair as the pediatric-sized seatback that is currently on the chair is too small/ short for both boys. Thankfully, there are lots of spare parts on eBay so I should be able to upgrade it without much trouble. I’ve also saved a listing for a new controller if it turns out the current one (which I’ve already taken apart and fixed once) no longer works. But even after all that, upgrading this chair is still a lot cheaper than buying a completely new power beach chair ($8-11,000 !!!), and not that much more expensive than the manual, push style beach chair we already have. I’m hopeful that by having one boy drive himself onto the beach (carrying some of our gear on his chair) while I push the other boy in the Mobi-Chair, will allow me to take the kids to the beach solo again. (And by solo I mean with Fulton’s nurse and ideally one big kid.) Fulton and Teddy can take turns in both chairs, enjoying the surf and the sand, and I can get a break from dragging/hauling so much stuff/ kids across the beach. Even though this modification kit and chair repairs were not in the budget, Tony says we can make it work, so I’m not holding a fundraiser per se, but I will put any Ko-Fi donations I receive through the summer towards the boys’ new beach chair. I expect the total cost (kit, repairs, shipping) to be around $3,000. Another way you can help us offset the cost of the new chair, is by purchasing any of the books in my shop, or hiring me to give a talk, online or in-person. Thank you to everyone who has used my Ko-Fi link to support my work and my family so far, and to everyone who has purchased one of my books!
I got my book cover!! BUT! there was a typo in the subtitle so I’m waiting for that to be corrected and then I can share it with y’all. It’s bright and upbeat but doesn’t scream “This is a book for special needs MOMS with BIG FEELINGS!!!” I hope that men feel just as comfortable picking up my book as women do. And while my story is 100 percent Catholic, the choice of art and font won’t smack a Protestant upside the head and declare, “Prepare to get proselytized homies!!” I hope people of all faiths, or no faith, can learn something. And for those who aren’t special needs parents themselves, but want to learn how to help families like mine, I want this book to grab you by the eyeballs and make you think, “Wow! That cover makes me want to make the whole world accessible to disabled people and their families!!!” Looking forward to sharing it soon.
I also have a big announcement I can’t share publicly yet, but I’m planning on doing a simultaneous live stream from my Accepting the Gift Facebook page and Instagram accounts Sunday night at 9 p.m. EST UPDATE: moving it up to Saturday night at 9 p.m. EST!!!! (94 percent sure I have the technology figured out.) I’ll share the videos on my personal/ blog Facebook pages and Instagram accounts afterwards. Blog update will follow eventually; at the latest, next Friday.
We have a surgery date for Teddy! On Tuesday, November 16, Teddy will have spinal fusion surgery at Shriner’s Hospital in Philadelphia. It sounds far away, but there’s plenty to plan in advance to make sure everything runs smoothly. First up is getting approvals for the MRI, and getting CHOP to sign off on the surgery. Then there’ll be labwork. Thanksgiving plans will be changed and I hope to get Christmas shopping done before the surgery (I’m usually shopping the week of Christmas). I’ve planned out next year’s school calendar; moving our start date up to August 17, and blocking out eight weeks for Teddy’s recovery. That means school planning needs to be DONE by then, not just getting started. Of course my book releases on October 8th, and I hope to get lots of promo in for that as well. And while it sounds overwhelming, just having a date means I have the ability to start planning which at least gives me the illusion of control. Like I did with Fulton, I’ll share Teddy’s room number and the hospital’s address so you can have a reason to clean out your children’s old artwork. Just write ‘Feel better soon!’ across the top of whatever the scribble is and stick it in the mail without guilt. Your kids won’t feel bad that you got rid of it, and Teddy gets room decorations. Win win!!
I can drink beer again! Long time blog readers will know I’ve mentioned being gluten-free in the past. (Though I never claimed to have celiac disease-big difference!). Over the last couple years, I’ve been allowing myself more and more “cheats” without too much consequence. After making some other changes in my diet at the beginning of the year, I allowed myself to eat gluten again, as much as I wanted, to see what would happen. Things were going well, so I allowed myself to drink some Corona beer, which is said to have such a small amount of gluten, many gluten intolerant people can drink it without trouble. And I felt fine on it. So I tried some other light beer, then a lager, and I’ve felt fine. It was wonderful! While I’m not out pounding pitchers of Bud and eating piles of pasta, I’m glad that I can enjoy what everyone else in my house is eating and not require a special meal. I don’t regret giving up gluten; I think it really did help me for awhile, but I’m glad I have the choice to eat it again, and enjoy a cold brew occasionally.
That’s enough for now. Be sure to watch for my announcement Sunday SATURDAY night (which I’m just praying I don’t forget to make). In the mean time, write down your own Takes and link them up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
Exciting news about your book and I hope everything goes well with the surgery (you sound very organized although I’m sure your hair will be on fire trying to get everything done according to plan.) Phillip has been gluten-free for something like 6 or 7 years but occasionally cheats, especially now that he’s made other tweaks to his diet elsewhere – the human digestive system is complicated. If you ever go to Europe, you can probably eat the bread there. Their flour is less processed and he’s always been able to eat that.