The Florida Summer Camp Experience 2021

Time for a vacation recap post! Some camp pictures, some vacation stories, and one trip extension later, we’re finally all home and fully unpacked.

Saturday – We kissed the older three goodbye and were on the road by 8:30 a.m. We hit some awful traffic around Washington, DC, and we arrived at South of the Border in South Carolina around 7:30 p.m. We ate at the Sombrero Restaurant, and checked out the largest gift shop. The handicap accessible room was huge, but unfortunately, I stepped on a cockroach the size of my thumb while rolling Fulton in the middle of the night. But did I cancel our reservation for another room on the return trip home? No! Because Fulton and Teddy wanted to come back and try to experience all that this roadside attraction had to offer and sanitary conditions be damned!!

And while I didn’t want to publicize it online during our travels, the older kids got to experience being home alone for some of our trip. I liked being given that responsibility when I was in high school, and I felt our kids were mature enough to handle it. So while they did spend time with my parents, they also had a few days on their own, which all went fine. It was honestly less exciting for them than they expected, but thankfully for us, they did the important things like mow the grass and take out the trash, and not say, throw a house party.

Sunday – We left by 7:30 a.m. so we could make a mass in Georgia by 10:30. We hit some rain and heavy traffic, but we still made it to our rental in Bradenton, FL by 6:30 p.m. After only having one really bad AirBnB experience, I was a bit worried about how things would go this week, but the rental was great. There was a small step we used our portable ramp on, and the boys had no trouble getting in and getting around. It was clean, well stocked, and comfortable. My faith in using AirBnB was restored.

Monday – Up early once again since camp check-in was 8:30 a.m. and we were 30 minutes away. Check-in is always a process because I’m trying to explain everything about the boys as quickly as possible. I actually have a sheet that lists all their daily care items, medications, etc. that I give to the nurses and counselors for them to reference during the week. Although it was a completely new camp with no familiar faced, Fulton and Teddy were pretty chill about drop off. We left by 10 a.m. to start Mama Papa week! I tried not to think about the worried and overwhelmed looks on the faces of the counselors as we pulled out. We spent the rest of the day relaxing at our rental, admiring the huge amounts of lizards that seemed to live everywhere, and for dinner we walked to a ramen shop with more sakes on the menu then ramen selections.

Tuesday- We finally got to sleep in, but I didn’t really need to since I got such a solid night’s sleep the night before. Getting an undisturbed night of sleep is so unusual for my body it woke up at 6:30 a.m. ready to climb Mt. Everest. We went to Holmes Beach for a bit (and learned that arriving early is the only way you can score a free public parking spot). Lying on a beach without kids is such a novel experience. I’ve never been on the gulf coast to my recollection and I was surprised how calm the water was, and how salty! It was so peaceful to just go out and float. On the way home we stopped for lunch at a restaurant on the water (nothing special and not worth mentioning). Later in the afternoon we walked the trail at the DeSoto National Memorial before the sky opened up. That seemed to be the pattern for most of the week; very hot and humid, then storms in the afternoon, before clearing up in the evening. Funny thing is, Fulton and Teddy claim they had no rain at camp all week. We also got ice cream before heading back and settling in for a movie. I love watching inappropriate comedies when I’m on vacation and so we watched Bridesmaids.

Wednesday – We got a call from camp first thing in the morning saying Teddy was having digestive issues. This happens every year so I wasn’t too concerned since he had no other symptoms. I said if he still had issues in another 12 hours to let me know, but thankfully, I didn’t get any more calls. It was a slow morning but later in the afternoon, we went into downtown Bradenton to check out the Art Village and Riverwalk. A lot of the shops and galleries were closed, and it was super hot, but we did find a tattoo parlor/ comic book shop where we picked up souvenirs for all three boys. (Comics, not tattoos.)

For dinner we wanted to try Edelweiss, a German restaurant we’d passed and it was AWESOME. Thankfully we’d arrived early because usually you need a reservation to get a seat, but they were able to squeeze us in. I got a fabulous schnitzel and potato pancakes and I even had some of the German beer on tap. Plus, there was accordion music. We were, not surprisingly, the youngest people there. It was a huge highlight for us being the lovers of German food and culture that we are. We went back and watched Old School that night.

Thursday – Hit the beach again in the morning. Relaxed in the afternoon and participated in another OSV Challenge class. The program kicked off this week and it was nice to participate in the Zoom calls without needing to resort to bribes of Disney+ to keep kids quiet in the background. I also did a video call with Edie. She was preparing to leave on a Sea Scouts cruise and wanted to see me (and Tony) before she left since she would be gone when we arrived at home. It was nice that the older kids could contact us when they wanted or needed to, but thankfully, there wasn’t too much back and forth. We wanted to go back to the German restaurant and sit at the bar that evening, but the parking lot was already packed so we went to Motorworks Brewing instead. It was a great outdoor seating area and the weather was perfect. Food and beer were okay, but most of the brews I wanted to try were out of stock so maybe I’d find something I liked better on another trip.

Friday – Our last morning alone! Nothing too exciting. Pick up was a 3. Everyone said how much they enjoyed having Fulton and Teddy and hoped they come back again next summer. Their counselors looked tired, but happy. The boys were only slightly embarrassed when I gave them both huge hugs and smooches. They shared about an epic prank they pulled on another cabin, how they managed to avoid taking more than a couple showers, and showed off some arts and crafts projects. They couldn’t help making lots of comparisons to MDA camp but both had a good week.

Saturday – Our plan was to go to Give Kids the World Village, which is where we stayed when our family was awarded a trip to Florida. They allow alumni families to visit up to four times a year. Unfortunately, they’re only open to visitors from 9 until 12 p.m on Saturday so, for something different, we woke up early to make the two hour drive to maximize our time. The boys were really excited to visit GKWV again. We arrived right at 9 and got breakfast, visited Fulton’s star in the Castle of Miracles, rode the carousel, played in the arcade and spent an exhausting amount of time running through the epic splash pad. We even managed to squeeze in some ice cream before it was time to go.

Each of those stars represents a child who has stayed at GKWV. They’re organized so that when you visit, they can find the star your child decorated. She’s using a laser pointer to show us Fulton’s.

Then it was time for Gatorland! It was so hot, and so crowded, I was seriously second guessing this decision before we even got in line to buy overpriced tickets but the boys were so excited we went ahead with it. The crowds and heat did dampen their enthusiasm a bit, but we did watch some great shows and we got to see lots of gators jumping for food. We could’ve stayed longer if we weren’t so sweaty and wiped out. We would all like to go again and take our time and maybe even try their accessible zip line!

Sunday – How about we wake up early???? Sure thing! We packed up and did all the check out cleaning around the rental before leaving for a 9 a.m. Mass. We were on the road by 10 with the hopes of getting to South of the Border in time to buy some fireworks and maybe get some chili-dogs. Unfortunately, we hit lots of heavy rain which slowed us down and we didn’t arrive until 9 p.m. We were put in the same room but thankfully, there were no roaches this time. (For the record, I really like South of the Border and would go again, I just don’t think I want to stay overnight there anymore. Fulton on the other hand would like to plan a vacation just to SOB.)

Monday – I didn’t set an alarm this morning and although Tony and I really wanted to get home, we managed to sleep in a bit, pick up a few souvenirs, some fireworks, and Fulton even got the chili-dog he wanted for breakfast. Because of the awful traffic we hit on the way down, we decided to take a different route home. It would be slightly longer but would be more scenic and less stressful…or so we thought! (Cue ominous music…) After driving over the Chesapeake Bay Bridge, we hit a stretch of road with several traffic lights. We’d noticed some noise from under our van, but now it had become a horrible loud banging that was especially loud as I tried to accelerate from a stop. We decided we needed to pull into a garage and get it looked at ASAP. We discovered our drive shaft had broken loose and was laying on our under-mount wheelchair lift, which isn’t really great for either part. We were forced to get a hotel room nearby and wait for the necessary part to come in, and for the repair to be made. While our handicap accessible hotel room had a roll in shower, it was small with little room for the chairs to move around, had weak wi-fi, and worst of all, it smelled like cat urine. And everything was sticky and damp, oh, and there were tons of flies. Teddy said, “It’s like a hydra. You kill one and two more appear to take its place.” While there were no cockroaches (that I saw) it was a dive for sure, and the pool was closed. Thankfully I’d packed enough extra supplies, and Tony or I could walk to McDonald’s or CVS for extra food or supplies, but I was praying we’d only be there one night.

“Bonus” Tuesday – On Tuesday we sat around. Tony couldn’t do much work due to the poor wi-fi. Because of our location on a four lane highway, I couldn’t walk with the boys anywhere. We watched TV, played on tablets, listed to an audio book, read, and tried to kill time while we waited for news from the garage. Thankfully, our van was fixed for a fair price by 5 p.m. After packing, we were on the road by 6 and only made one quick stop on the way home. We finally pulled in at 10:30 p.m. Addie and Byron came outside to greet us and we immediately made them help unload the van. All the animals gathered round for attention as well. I was very happy to be home.

Showing my happy face in the new Lego room at GKWV. Perfect visualization for how I felt when we got home.

Phew! How was your week? Write it down then link it 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!

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It’s Camp Week!

No Takes this week while we’re maxing and relaxing in Florida!!! All the details will be in next week’s post. But until then, know that it’s been a great time for Tony and I. I’m hoping when we pick Fulton and Teddy up later today (Friday) that they say the same thing. Saturday we’ll be at Give Kids the World Village, and hopefully Gatorland. Sunday we head home with another stop at South of the Border on Sunday night, before arriving back in New Jersey on Monday. Lots of stories and pictures to share later! Until then, pray for safe travels! Thank you!

{SQT} Packing and Writing

PACKING, PACKING, PACKING! It’s all the fun of packing for camp, while also packing and planning for a 16 hour road trip. There’s also the constant worry that something will go horribly wrong and derail all my plans for the week. But how about a few Takes to keep me from fretting for a bit???

Between updating and printing out my three page packing list for Fulton and Teddy, and organizing all their clothes for the next ten days, I’ve been pushing to finish all my grading for the 2020-21 school year. The OSV Accelerator (which is the program all the semi-finalists are participating in) begins next week while we’re in Florida, and I really want to not have to focus on school and the Accelerator at the same time. I mean, it’s inevitable since the Accelerator runs up until the week I want to start school back up, but I’d like to minimize distractions as much as possible. And let me get it down on the blog so it’s official, but next year I’m really and truly going to grade more as I go and stay on top of checking work at least once a week!!! For real!! I mean it!! If I can become a semi-finalist in a highly competitive national challenge, I can stay on top of school work most definitely!!!

But to backtrack a bit, our Nativity of St. John the Baptist party was a huge success (as usual)! We did get some rain but thankfully, no gusts of wind so our tent stayed up, and everyone stayed comfortable during the short cloudbursts. Our pig was a huge hit, as was our fireworks show. There was some disagreement over what type of music to play during the party, but everyone agreed the Block Rocker speaker was a great addition, even our neighbor at the end of the block who enjoyed listening to Tony’s soundtrack selections during fireworks.We had 101 people, two thirds of whom were children. I didn’t sit down the entire time, but for as crazy as it was, I really felt in my element. We didn’t do anything on the fourth of July except clean up and rest.

On Monday Addie competed in a national fencing tournament in Philadelphia. This tournament is held yearly at different locations around the country so we really lucked out that it landed so close to home. She fenced well, but was up against such tough competition she didn’t come close to medaling. It was a good learning experience, and it also reassured us that she hadn’t lost too much ground during quarantine when her training was severely curtailed. Her future college destination is still up in the air as we navigate the confusing NCAA regulations regarding transfer students.

On Tuesday evening I went to the movies with a friend for the first time in forever to see something that wasn’t part of the MCU. Summer of Soul (…Or, When The Revolution Could Not Be Televised), is a documentary about the Harlem Cultural Festival that took place over six weekends in the summer of 1969 in Mount Morris Park in Harlem, NYC. It was filmed, but never shown because no one was interest in airing, what was billed as “The Black Woodstock” on TV, despite headliners like Stevie Wonder, Gladys Knight and the Pips, and Sly and the Family Stone. I danced along in my seat to the music, but the historic back story behind the festival, and it’s place in time amidst the moon landing and civil rights movement were just as compelling. Highly recommended.

How was your week? Write it down then link it 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!

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{SQT} Reveals

If you don’t follow me anywhere but here, then you might have missed the announcement on Saturday night that my apostolate Accepting the Gift was named one of the 25 semi-finalists in the OSV Challenge. It’s a HUGE deal. I’m going to get a mentor, spiritual direction, business guidance, and funding to help grow the ministry. If I’m lucky, I’ll be named one of the 12 finalists and get to give my pitch to a panel of judges at the OSV Summit in September and maybe win one of three $100,000 grand prizes (!!!). I’m equal parts excited and overwhelmed, but mostly I can’t wait to get started and do some of the things I didn’t have the knowledge or resources to do before. If you’re not already, you can follow Accepting the Gift via newsletter, on IG, FB, and at the website.

Awkward announcement video with details.

As I was preparing to take Edie and Addie shopping on Saturday afternoon when Byron called me. Considering he never calls, and the first words out of his mouth were, “Don’t worry, I’m not hurt.” I knew it wasn’t good news. Unfortunately, he’d been hit by a car while on his bike. Thankfully, everyone was going slow and the only damage was to Byron’s bike. He was shook up more than anything. I made him call out of work for the day and my father in law tried to bend the bike back into shape to no avail. For now, Byron is back to walking or driving (with me) to work. There’s a bike shop in town, I just need to make the time to get the bike there and see if it can be saved or junked. Between this and his dislocated elbow, I think Byron and his guardian angel have had enough excitement for this year thankyouverymuch!

Fulton turned 13 on Monday! THIRTEEN! He requested homemade Chick-Fil-A sandwiches (which I make with this recipe-THE.BEST.) and he got games (including this cool looking one affiliate link), books, and a Funko Pop figure we have no room for. I think (I KNOW) he and Teddy only ask for them because it annoys me to acquire things just to stick them on a shelf for display.

My mom made Fulton a monster truck themed cake. Fulton requested another trip to a monster truck show for his birthday, which we’ll attend in August.

On Tuesday, which was the hottest day of the whole year (I imagine) I sat outside and tried to sell used homeschooling curriculum. It was as profitable and sweaty as you can imagine. I had several boxes of $1 items that were popular, but I couldn’t convince anyone to purchase the many, many Latin sets I’m trying to sell (Latin for Children A,B,C and The Latin Road to English Grammar in case anyone is looking) or the recorders (but no surprise there).

I came home, showered and then met up with my college roomates for dinner. It was the first we’d seen each other since before COVID hit, and the first any of them had seen my new house. After giving them the tour and making them touch the wallpaper in our hallway for an uncomfortably long time, we walked to one of my favorite Italian places for dinner. It’s nice to have the kinds of friends that you can just pick up conversations with, even after a long absence. We all live within a couple hours of one another, but between jobs, kids, and life the most we seem to manage is dinner once or twice a year. We managed a weekend getaway once through a strange aligning of the stars that hasn’t happened since.

Now it’s just non-stop party prep for our annual Nativity of St. John the Baptist party, held slightly later than usual. The weather forecast does not look ideal, but this party is RAIN OR SHINE. I really don’t want to relive this year, but I’m just so happy to be able to have people over and eat food and talk that I’ll pack everyone in my house for as long as they want if that’s what it takes! We’re getting a whole roast pig, shooting off fireworks, burning a bonfire, and Tony bought a speaker called the ‘Block Rocker’ so, we’re going to get crazy by alternating loud Gregorian chant and Dean Martin music before the town’s noise ordinance kicks in at 10 p.m.

Oh, and newsletter subscribers saw it this morning but here’s my book’s cover!

No idea about preordering yet, but I’ll keep you posted! In the mean time, link up your hot Takes 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!

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{SQT} Beach Wheels, Surprise Reveals, and Surgery Deals

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!

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{SQT} Cats, Food, and Some Back Story

It’s the first week of summer break, which means I’m trying to accomplish all the things I couldn’t accomplish since Easter break. So, it’s not much of a break at all, I’m just redirecting all my empty threats towards file folders, random drivers on the road, and my cats.

Why am I angry with my cats?? Because one of them seems to think that going for a car ride in a cat carrier is the kitty apocalypse and uses these few opportunities to pee in our car (after using his face as a battering ram to bust out of his carrier). We even tried wrapping his carrier in a large sheet so he couldn’t see what was going on (at the suggestion of our vet) but instead his pee just got on one of our sheets and the car seat. Our other, older cat, used to be cool with car rides and cat carriers but apparently the wails and antics of the younger cat inspired the older one to rise up against the human overlords in a mutual spirit of revolution. So it was just a lot of wrestling and cursing to get these two beasts up to date on their shots.

The older three have been busy with activities most weekends and evenings. That means there’s been several nights when it’s only been Tony, Fulton, Teddy and I sitting down to dinner. I’ve found myself saying, “Well there’s only going to be four of us. It hardly seems worth it to make [insert whatever large dinner is on my meal plan].” And then I remember that most families (like the one I grew up in) only ever have four people at the table for dinner. So, I go ahead and motivate myself to make whatever is on the meal plan even though it’s “only for four people”. Somehow, the food all gets eaten eventually. The late night grazing of the teenagers seems to be good for something.

Despite Byron working at McDonald’s eating fast food has not become a weekly occurrence. Even Byron tries to pack food when he works so he doesn’t consume too many burgers during the week. But we made an exception recently with the release of the BTS meal. BTS is a K-pop music group and like many popular stars and influencers, they partnered with McDonald’s to create a signature meal that is sold for a limited time. Addie of course needed to purchase a BTS meal (and document it for Twitter) so we all got McDonald’s the day after the meal released. It’s not anything special; just a 10 piece McNuggets deal with a couple special sauces. It led to a discussion of what each of us would create as a signature McDonald’s meal. No one really had strong feelings about their meal except Teddy who wants the ‘Teddy Yeti’ meal to contain a double fish filet sandwich with Big Mac sauce, a large fry, and a Sprite.

I wrote a great piece for Accepting the Gift on two informative books that can help empower parents, and educate parishes, about how to make sure special needs children receive their sacraments. Thanks to author Michele Chronister for writing these books and taking the time to talk to me about an important topic. Because yes, in America there are still kids (and adults) being denied Communion and Confirmation because of their disabilities. Not sure who should recieve the sacraments? The USCCB explains it nicely here (TL:DR everybody).

On Wednesday Teddy and I went to Shriner’s to check on his back. Not surprisingly, we were told to pick a date for surgery. It doesn’t need to be this summer thankfully, but when I told the doctor I want to make sure Teddy is fully recovered and able to do summer camp next year, he suggested planning surgery for 6 months prior to the camp date. That means we’re looking at surgery by the end of this year. It’s fine. I’m fine. Teddy is as fine as he can be when faced with some big unknown that’s months away. I have calls and appointments to make but once I know the specific date I will, of course, be sharing it in order to soak up as many prayers as people will throw at us. For some “back story” you can read about Fulton’s surgery and recovery here. Teddy will be having the same procedure with the same expected recovery period. Thankfully, the bedroom situation, and ceiling mounted lift will make his recovery about 2938 times easier…in some regards.

I suppose that’s enough of an update for now. How was your week? Let me know what your custom McDonald’s meal would be, and link up a post if you’re so inclined. 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!

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Has Your Special Needs Child Been Denied A Sacrament?

Catholic parents of physically and intellectually disabled children often miss out on so many milestones that parents of typically developing children take for granted. Thankfully, the reception of the sacraments doesn’t need to be one of those missed moments. According to the USCCB document Guidelines For the Celebration of the Sacraments with Persons with Disabilities;

2. Catholics with disabilities have a right to participate in the sacraments as fully as other members of the local ecclesial community.3 “Sacred ministers cannot deny the sacraments to those who seek them at appropriate times, are properly disposed, and are not prohibited by law from receiving them.”4

3. Parish sacramental celebrations should be accessible to persons with disabilities and open to their full, active, and conscious participation, according to their capacity. Pastoral ministers should not presume to know the needs of persons with disabilities, but should rather—before all else—consult with them or their advocates before making determinations about the accessibility of a parish’s facilities and the availability of its programs, policies, and ministries. Full accessibility should be the goal for every parish, and these adaptations are to be an ordinary part of the liturgical life of the parish.

Unfortunately, many parents and parishes are uncertain how to meet their children’s unique needs in regards to religious formation. Some dioceses and parishes have wonderful adaptive catechesis programs, others places have no idea how to proceed and so children are denied the opportunity to receive their sacraments.

Thankfully, author and illustrator Michele Chronister has created two valuable books, Taking the Lift to Heaven:The Pocket Guide to Adaptive Ministry in Your Catholic Parish and the Handbook for Adaptive Catechesis; Serving Those With Special Needs, that parents and parishes can use to help formulate a plan to meet the needs of any disabled child, or adult, who wishes to receive Holy Communion, Confirmation, and grow in their faith. Chronister is a wife and mother who received her Master’s Degree in theology at the University of Notre Dame, through the ECHO program for Catechetical Leadership. During that time she interned at a parish where she developed the Children of St. Angela Merici curriculum for children and adults with disabilities.

“My philosophy for catechesis [is that] every baptized person has a right to full, rich, accessible catechesis,” she said. “Catechesis should never be dumbed down or watered down, and just because someone is not able to express their beliefs verbally does not mean that they can not have the message of the Gospel and the Catholic faith nestled in their hearts. Along with that, I wanted to make sure that all parents and catechists of individuals with disabilities knew that their loved one, by virtue of their baptism, had a right to the remaining Sacraments of Initiation, and to Confession, when that is possible.”

Read more at Accepting the Gift.

Last Day of School!

It’s the last day of school, and I hope that means I regain a few hours (minutes??) of time for writing during the day over the next few months. These Takes are late, and short, but hopefully things improve in the coming weeks.

This week had some nice, hot days which meant we could finally try out our new pool (affiliate link). It’s a step above an inflatable kiddie pool, but not so big we need a permit, ladder, or huge pump. It’s just big enough for a few of us to cool off in at a time. This is why we didn’t do all those other fun end of the year activities. Nobody, including me, minded.

“Push me into Fulton!” “Push me into Teddy!” x100 Guess who needs a nap the most after this?

The younger two and I finished watching Julius Caesar, and also watched Disney’s Peter Pan after finishing up the original on audio book. We finished up our literature books, and got a fresh round of “fun” books at the library. I even got a massage to celebrate the conclusion of another year. (A practice I highly recommend.) Admittedly, my high schoolers have a few things to finish for me, but thankfully, completing those assignments is on them and I don’t mind waiting a bit. I still have lots of grading to catch up on, and transcripts to update, but that can get put on the back burner for a little while longer. Most school districts around here are wrapping up next week so I’m technically ahead of the game…at least that’s what I’m telling myself.

I have lot of unrealistic plans for how I want to spend my summer. Cleaning out and reorganizing some parts of the house, writing more for the blog and Accepting the Gift, hopefully I make it to round 3 of the OSV Challenge and get to work on that, and of course I’ll need a week or so to plan school for next year. Eleven weeks of summer break hardly seems like enough time.

One other new addition is a ceiling mounted Hoyer lift system in Fulton and Teddy’s bedroom. It makes lifting and transferring them a million time easier. Fulton’s nurses are just as giddy as I am. Right now, there’s a lot of novelty for the boys to sit in the Hoyer sling and move all over the room, including into their brother’s bed or wheelchair, or glide through the room and while trying to kick their legs into someone. There will also be much less swearing on my part as I no longer need to struggle with the manual Hoyer lift. We’re still keeping it in the garage since I assume this new lift will eventually break like everything else we rely on, which will result in lots of swearing from me, but until then, we’re all on a Hoyer honeymoon high.

Here’s Fulton threatening to lay down in Teddy’s bed. Teddy is threatening to squish Fulton by raising the head and foot of his bed. I’m glad we have new things to argue about.

That’s all for this week!! Thanks as always for your patience. The link up is open all week, so feel free to drop in a late post yourself at anytime. 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!

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{SQT} Highs And A Low

Starting with the most important update: we lost our third level insurance appeal. The outside agency agreed with the insurance company’s decision to reduce our hours from 12 to 10.

I believe there is another level of appeal I could go for that involves courtrooms and judges, but, based on the explanation letter from the outside agency, I don’t believe the outcome would be any different. And frankly, I’m not willing to invest any more hours into the process right now. If Fulton gets sick and requires hospitalization, or becomes weaker, I’ll be able to make the case for more hours. If they try to cut him down even further in a few months, (becaue he’s SO HEALTHY) I will need to go through this all again, at which point I will probably go as far as I can with appeals but for now, I’m just DONE.

So I’m focusing on the end of school and having as much fun with it as I can. I got a free trial to Ancestory.com and we’re going to work on a family tree with a focus on finding family members who served in the military. We’ll see how far back we can go before my trial ends. We did a zoo trip last Friday (The reptile house was reopened!!), and I’ll try to throw another field trip in next week. Plus, we’re finishing up Shakespeare’s Julius Caesar so that’s another movie to watch. Lots of stabbing, death, and battles so, it’s a clear favorite.

We got to watch them feed the giraffes. Be happy I spared you a photo of the turtle who was “giving another turtle a piggy back ride” in the reptile house.

I don’t think I’ve ever done a year-end homeschooling review post before, and I don’t plan to start now, but I did want to share a few things I really liked this year. Some are new, and some are old favorites that continue to work in our homeschool.

On Monday we attended a small Memorial Day service at our town’s veteran’s park. It was nice, well attended, and the weather cooperated beautifully following several days of cold, rainy temperatures. It was the 100 year anniversay of our town’s WWI memorial which was dedicated on May 30, 1921. The WWI theme inspired me to show the kids Peter Jackson’s WWI documentary They Shall Not Grow Old that evening. The movies uses footage from the Great War updated with color, background noises, and corrected speed, overlaid with veteran narration recorded in the mid-20th century. It was really good, though Teddy wanted more details about everything and Fulton could’ve used less dead bodies. In that vein, I don’t think the CGI enhanced maggots and fly sounds were necessary, but I do think it’s important for the kids to see the ugly side of war and not just read about exciting battles and the like.

Most of you know my first real book Better Thank Okay: Finding Joy As A Special Needs Parent is coming out this fall, but if you’ve been here any amount of time, you know I’ve created and contributed to several smaller works over the years. One of the most popular, is Rosaries Aren’t Just For Teething:Reflections on Mary By Mothers which features popular Catholic mom bloggers sharing their thoughts on all the mysteries of the rosary. Editor Michele Chronister has re-released this title with all profits for the next few months going to the Archbishop Robert J Carlson Adoption Fund. You can support the fundraiser by purchasing through Amazon, or if you’d like a signed copy, I still have a few first editions I can send out. Visit my shop if you’d like one. If you’re looking to get into a rosary habit, but are struggling and feeling overwhelmed, you’ll really appreciate, and hopefully even be motivated by, those of use who lean on the rosary and Mary’s example even in the craziest, or hardest, of times.

Also, my new profile picture. Everyone in my house had different feelings about how it turned out, but it’s been growing on me. I’m pretty pleased with it. Maybe my best Fiverr purchase ever.

I believe that covers the highlights and the one really big low light. How was your week? Write it down then link it 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!

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{SQT} I Would Tell You In Person

Let’s recap another typical May week for posterity. Amy Welborn shared a great post recently on the type of information we share online, and her litmus test for what is worthy of sharing struck a chord with me. Therefore, you can rest assured that all the details of this post (which I write partially in order to remember the highlights of our family life) is all information I would bore you with in a real life conversation. I think blogs have the advantage of incorporating GIFs which I would love to throw into real life conversations. Instead I typically resort to flailing hands and full body contortions demonstrating my favorite GIFs, which is just makes everyone uncomfortable.

ANYWAY- We played well-visit catch up this week. Fulton and Teddy needed camp health forms filled out, and everyone in the house needs to have had a check up in the last year as part of our foster application. Edie and Byron hadn’t seen the primary since 2019 and thankfully I was able to get them both in quickly. When everyone was little, I had to drag everyone to all the appointments. Now, I purposely scheduled everyone’s for a separate time. (I could do Fulton and Teddy at the same time, but between me, the nurse, and two powerchairs, it’s just easier, and less crowded to make two visits, especially since the office is right down the street.) I guess I prefer making multiple trips vs wrangling multiple little children, but it does eat up a lot of time since waiting is always involved. But at least its done for another year!

In a fit of worry induced insomnia which turned into anger that I couldn’t sleep, I woke up at 4 a.m. on Monday and finished my OSV Challenge application, and then, still fired up, went for a run of all things. There was lots of walking involved too, but between the intense intellectual and physical exertion I was exhausted (and useless) the rest of the day. The cause of my worry? Some small fault in one of my children that irks me. But, as is my habit, every time I butt heads with my kids over something I wind up beating myself up. What did I do, or not do, that has caused my child to act this way? And I think of all the things I could’ve done differently in the past, or how I can try to fix everything immediately. I can’t be alone in this mindset can I? I wonder if it stems from society’s obsession with people blaming their faults on their parents. Every cliched shrink scene in a TV show or movie starts with the doctor asking the person, “What was your relationship with your mother like?”. However, the natural result of this mindset is that if your problems were caused by your mom or dad, your children’s problems are your fault. If we are allowed to lay all our anxieties, fears, broken dreams and failures at our parents’ footsteps, then every failure your child makes can be tied directly back to you. Perhaps that’s also why some parents go to such lengths to ignore or make excuses for their children’s behavior. If you don’t acknowledge the problem, you can’t be held responsible for it.

I don’t really agree with this. I see how my parents strengths and weaknesses shaped me as a person, but I take ownership of my actions good and bad. I hope my kids do the same, but yet, I can’t seem to stop feeling like their futures are all riding solely on my efforts. The feeling has intensified as they’ve gotten older and I realize my time to influence them is growing shorter. This is one of those parenting struggles that comes with having a house full of young adults vs little kids. It kind of sneaks up on you, and then it hits you between the eyes at 3 a.m. when you’re worrying about whether or not to let your child live their life or say something about it. (And for the record, it’s nothing major like drugs or something. No one is on the fast track to jail or hell. It just feels like a bigger deal than it is at 3 a.m.)

Here in South Jersey there’s this awesome learning resource place that works like a library, but they basically have the inventory of a Lakeshore Learning Store. Anyone can borrow, and while I’ve known about it for years, I finally got a membership and started borrowing supplies. ITS FANTASTIC. Its newer location is only 35 minutes from our house (vs the previous 45+) and it’s helped bring a little more fun into these last few homeschool weeks. Plus, they have a great selection of books that many local libraries probably wouldn’t carry. I borrowed one on dyslexia that I’m loving so much I ordered my own copy. And Fulton and Teddy have enjoyed the influx of new games into our routine. (We’re currently enjoying a game called ‘Chunks’ that’s thankfully not about throwing up, but word building. Highly recommended.) I have no idea how to find a similar center in your area, but ours is grant funded and housed at a local university. Started to “support the education of students with disabilities, helping them to succeed and to achieve in the least restrictive environment.” its services are obviously geared towards helping teachers, but I’m so grateful they’re open to all parents as well.

We spent more time in Ocean City visiting with family. I splurged on a new sweatshirt and sweatpants. I say splurge because boardwalk prices at the beginning of the season are YIKES! but, for the last several years as my old OC sweatshirt started falling apart, I kept saying, “Oh, I’ll just pick something up when we’re down in the off season and it’s cheaper.” But then I can never find something I like, or the store with the best selection is closed on the day we’re down. So finally I just picked out what I wanted and got it. Tony said there was money in the clothing budget, so I didn’t need to feel guilty and if I only buy a new sweatshirt every five + years, it’s a pretty good investment anyway. (And if there’s one thing 2020 taught me was the importance of comfy loungewear.) So that made me very happy, though in hindsight, I’m sure I’ll regret purchasing both items in white. I jokingly said I should just go home and dump something on it so I don’t get mad when it ultimately gets stained. There’s also always the option to tie dye it in a couple years if the stains get totally out of control, which is very likely. (My old sweatshirt is brown and that was a real lifesaver on many an occasion.)

And now I’m questioning my judgement in conversation topics…on that note. I’ll wrap it up. Next week starts June and then the real summer fun starts and goes NONSTOP until September. Can’t wait.

So link up below and 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!!

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{SQT} Filling In the Margins Of May

Thank you for your patience with my Takes, or lack there of. I’ve gotten out of the habit of jotting down ideas for Takes during the week as they hit me, so lately when I reach Thursday night, I’m wracking my brain for ideas. Our days follow a pretty set routine at this point, but with plenty of last minute appointments / unforeseen tasks eating up the margins. Now that I’ve got two weeks to pull ideas from, I should be set for a true SEVEN Quick Takes post.

For example, after fighting and winning the right to keep 12 hours of nursing care for Fulton only six months ago. I am back at it, trying to convince the insurance company that Fulton still needs 12 hours of nursing care. I just learned they upheld their decision after my first round appeal, so onto round two we go. Their rationale for trying to reduce our hours again? Fulton’s been healthy, and not had any ER visits in the last year, so he probably doesn’t need all those nursing hours.

My husband took a day off work recently and we all went to the beach. Teddy and Fulton were disappointed we wouldn’t let them get in the water, but otherwise it was a great day – even relaxing in some ways! I especially enjoyed wandering the jetty and checking out the tide pools (which the lifeguards won’t let you do during the summer).

And although Ocean City is using hawks to keep sea gulls from attacking people on the boardwalk, the birds are as brazen as ever on the beach and once they realized we were eating pizza and fries they almost took a couple slices right from our hands. But we saw dolphins! And ate ice creams! And played at the arcade! So no complaints.

We didn’t have a new beach chair for this trip, but it did help us decide to NOT purchase another Mobi-Chair (the one size fits all chair is the best in the water but not the most comfortable for long term sitting) and we’re not going to try to modify an existing medical stroller (also not comfortable/ supportive enough as the boys have gotten bigger). It’s helped us narrow our choices and I look forward to sharing what we decide on later in the summer.

In super happy exciting news THE BOYS ARE GOING TO SUMMER CAMP!!!

This is despite the fact that MDA cancelled all their camps for the second summer in a row. It took some hunting (many other camps are also closed, running only day camps, or are too danged expensive) but I found a camp in Florida that will except both boys. So not only do Fulton and Teddy get to go to camp, but Tony and I have rented an AirBnB and will get a vacation in Florida for ourselves. Obviously, to make this work requires a long drive, but a week of respite was something I desperately wanted to make work. If you remember, two years ago, Fulton got sick at camp and had to come home after only a few days, and then wound up in the hospital. Last year of course there was no camp. As much as I’d like to say, “It’s okay, I’m fine waiting another year for camp.” I was pretty upset about it (probably more so than Fulton and Teddy honestly). Thankfully, this camp is affordable, as is our rental. It means no large family vacation this summer but the older three are pretty excited about a week of freedom too. (And it still allows us to sock a good bit away for next year’s vacation.) Once we reach the end of the school year, I think Teddy is going to have me make a “Days Until Florida” count down board again. As an added bonus, we’ll get to revisit Give Kids the World Village before coming home, and we’re staying at the iconic South of the Border on the way to and from Florida.

When I’m not filling out insurance or camp paperwork, I’m working on my application for the second round of the OSV Challenge. My online apostolate, Accepting the Gift, was one of the 160 or so (I think?) entries accepted into the second round out of close to 600 submissions! It’s been really hard trying to grow Accepting the Gift, given my time constraints and those of my voluteers (all special needs parents), but this challenge is helping me really outline my goals and will hopefully connect me with other people who can help me learn how to turn my online idea into a well-known and valuable resource for Catholic special needs parents around the country (and maybe someday the world!). Your prayer of support are always appreciated.

Oh yes, and the foster care process moves forward as well. We did our homestudy interviews (four hours worth!) and we’re tying up lose ends (vaccines for the cats, getting well visits for the few kids I forgot about-whoops!) and making a few changes to the house; mostly related to child-proofing. At this point, given all the delays related to COVID, I still think our first placement is still a few months away, but it’s getting closer! I think we’re all excited to welcome a new child into our home.

Lastly, a couple promos. I gave a talk yesterday as part of this event:

You can still join, enjoy the rest of the talks, and purchase access to my talk if you so desire. It’s three days designed to uplift and inspire, and this organization host regular events so if you like it, you’ll have plenty of opportunities to enjoy future conferences as well.

Also the Ultimate Homemaker’s Bundle is live until Monday, May 24. You know the drill. Lots of great resources, low price. I always benefit from each bundle; as usual, you won’t be disappointed. Click to learn more and purchase before time runs out.

Now it’s your turn! What is eating up all your free time???? Write it down then link it 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!

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{SQT} May Goodness

Happy May! Who else is ready for school to be over?!? Who else is counting down the days???

Our godson received his First Holy Communion on Saturday. We snapped some pictures outside afterwards and celebrated with dinner at Applebee’s.

It’s nice that even though our children have already all passed this milestone, we can still help celebrate in a special way with our godchildren. Our goddaughter will make her First Holy Communion in five years and when I think about how old all my kids will be by then…

Monday I decided to bag school and take the younger three for a hike in the woods, a library trip, a drive through lunch, and finally we watched a bunch more of Kenneth Branagh’s FOUR HOUR long version of Hamlet. We’re still not done watching it, but thankfully it’s a wonderful production. Since there was some educational discussion amidst everything, I’m counting it as at least a half day.

I wanted to hit the beach on Tuesday, but ultimately I decided against it. Ultimately, I wanted to relax on the beach but Tony could only come with if we went in the evening – and rain was forecasted. And trying to get everyone on the beach has hit a new hurdle now that Teddy needs his own mood of beach transportation. I’m not sure if we want to get a whole second beach chair like Fulton has, if we want to try to modify one of our medical stroller with balloon wheels, or I’m sort of toying with the idea of modifying an old powerchair into a motorized beach chair. Currently, we’ve tried squeezing him on the beach chair with Fulton, or dragging him across the sand in a medical stroller – neither of which is easy or works well. Anyway, I really didn’t know how I would be able to get everyone on the beach and keep them entertained in a way that would be relaxing for me, so I decided against it. I’m hoping that in the next week or so, Tony can take a half day and we can enjoy the beach all together before the crowds rush in. It’s made me really appreciate all the times I took the kids to the beach when it was easy for me. I have ZERO regrets for all the previous last minute field trips to visit “salt water ecosystems”.

I found a throw blanket of Our Lady of Guadalupe in the clearance section of Walmart for $3 on Wednesday.

It goes great in the living room next to our Mary shrine. I’d never set up a special Marian altar just for May before but, I like to think of us as over the top Catholics so, what was I waiting for?? Thankfully, Addie and Edie were able to maximize the holiness by adding *almost* every statute of Mary they both own.

Speaking of Mary, don’t forget my 31 Days of Mary posts (all 18 of them!) and the Ten Virtues of Mary series (all of which are linked to in my post).

How was your week? Write down some Takes then 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!

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