I could just sum up the last month to month and a half in that title if I weren’t a long-winded human being…but I am…so hang on!
I will condense this in the best way I can because it’s been so long, but important!
Benny has now been approved for OT and per usual, it’s a waiting game. We’ve signed the papers and I’m currently waiting for someone to call me to set up an appointment. This will make 4 therapies for Benny.
Right now, he has speech with Sue on Monday mornings and developmental therapy with Michelle on Monday afternoons. Michelle is amazing. She, like Sue has had a time of really getting to know Benny. The first time she met with Benny he’d not had a nap and was tired, I think the second time he wasn’t feeling good and another time he fell asleep on her. The last time she came over was the best, she really pays attention to every little detail about Benny. She’s sweet and funny and I wish we had more time with her.
This week Sue got to hear Benny say “turtle”. That’s right. TURTLE. He said it one day after a nap and I just so happened to catch it on my camera. The next day, she comes over and I explain it to her and she asks how I got him to say it. Before I can respond, he says TURTLE 3 times in a row. We just looked at each other in amazement. I mean, we don’t know when he’ll say it. You can try to prompt it out of him, but per true Benny fashion, he will do it all when he deems it worthy to.
Keep me on my toes kid, I love it.
So. I’m going to try to not go so back and forth, but it’s going to be hard to not do that seeing as I have like 2 months to go through.
Let’s go back to the end of March.
Ben got a cold (again) and I got bit by a spider. Yeah, a freaking spider. That’s my luck and ya know, I should can it on that because in all seriousness, I could have died.
I’m not 100% certain exactly where it happened (though we were in Angola at the State Park the day before I noticed the bite), but man, did it happen! I can’t remember if I noticed it the night I got home or the next night, but I do remember thinking “How in the world did I get this big zit?!” It was itchy and kind of burny feeling. The next day when I woke up, my neck hurt really bad like I’d pulled a muscle. My neck was swollen on the same side as that “zit”. I went from Wednesday until that Saturday morning and it just wasn’t any better and I just started crying because I didn’t want to go to a Medcheck, I’ve never in my entire life went to one but, that Saturday Benny and I sat for over an hour waiting to be seen and 2 hours later I was told by the doctor that I indeed was bit (he thought either a spider or a tick…it did NOT look like a tick bite) and prescribed me some cream and antibiotic to take.
I was relieved and he told me I was lucky, because it could have been worse. Everyone reacts differently to venom and I just so happened to not die, haha.
We got ready Monday and Tuesday we left to go on what we call our “Great American Vacation”. We start in Indiana, go to St. Louis, then Kansas, Denver, Las Vegas and make our way back home through Arizona, New Mexico, Texas, Oklahoma and back to St. Louis. It takes 2 weeks for us to do this, mostly because we end up spending almost a week in Las Vegas.
To start the vacation, Ben (as I previously said) had a cold and as anyone knows having a cold and doing ANYTHING isn’t super fun but he really did great. (Sidenote: I spent the next week waking up every day with my eye swollen in various areas and various degrees from the bite)
The first night we stayed in St. Louis and it was a fun little stop. The next day was rainy and we decided that even though we were pretty sure Benny was coming down with a cold too we’d tough it out and go to The St. Louis Zoo. Benny usually doesn’t care too much for zoo’s. I say this as he usually doesn’t notice anything. We get him out of the stroller and face him toward the elephants. He LOOKS. He SMILES. We were in awe. It was a moment that isn’t just a “good the kid looked, this was worth the time”, it was an amazing moment I’ll never forget because I don’t know if or when he’ll ever notice another animal at a zoo, because he didn’t really notice anything else. You can point all you want, turn him in whatever direction you want and he will not look unless he wants to.
It started to rain and honestly, how much can you do at a zoo when your child isn’t it to it, so we left. We decided to catch some lunch in The Hill, the Italian area of St. Louis. If you’re ever in the area, it is a must do. It’s a cute neighborhood with great shops, deli’s, restaurants and groceries. We grabbed a couple meatball subs and sit out on another restaurants patio while the rain poured down beside us. It wasn’t an idea lunch weather, but ya know, it was memorable and the meatball sub was a 9.5! Again, if you’re in the area there, go check out Mama Toscano’s Ravioli. We had the rav and it was so-so. Definitely, get the meatball sub. (Sidenote: they don’t have indoor seating so go on a non-rainy day!)
Next we traveled through Kansas (P.S.- I don’t care what anyone says Kansas is beautiful), checked out a Chuck E. Cheese in Wichita that actually had animatronics. If I’ve not mentioned it before, Benny loves animatronics. Ben and I do too actually, so this was a must for all of us. If you don’t remember Showbiz Pizza, then you’ll probably not understand why we go out of our way to see these shows. Back in the 80’s there was Showbiz Pizza Place and a animatronic band called “The Rock-afire Explosion” it was magical and dang it, it still is if you can catch one of the last ones left in the world (we’ve seen 2). When it was bought out by Chuck E. Cheese, they took the characters and revamped everything in to new characters, thus Chuck E. Cheese, but people got tired of fixing these things and started to take them out of the stores. There are few left and we went to one in Kansas. It was awesome. Benny had a blast. I really feel like he’s at peace when he’s watching these shows. It’s amazing to see him watch it. It’s hard to explain, but if I could just buy the place and live there, I would.
Traveling onward West! We head for Colorado! Ahhh, how Colorado plays with my sinuses. We get to Denver and go to the best Mexican restaurant on this planet, CASA BONITA! Oh please, do me a favor and click on that link, its real guys! Ben and I have been there many times and every time it never disappoints. The food is all you can eat and sopapillas are so delicious. Cliff divers and a shoot out stage show, you just can’t lose! There’s so much to see and do, bet you can’t do it all in one trip!
Benny ended up enjoying it, but when the stage show started he immediately started crying. It’s college age kids yelling though a cheap microphone and less than monitored PA soundboard. Once he got calmed down, he had a blast, but man, it really made me realize that Benny does have some issues with SUPER loud noises. He actually does fine with fireworks, but this was OVERLOAD and I can’t blame him. I know he’d had a long day as well, but mommy and daddy both just felt so awful when that happened.
After Casa Bonita (better click that link and seriously check it out..I’m telling’ ya!), we went to ANOTHER Chuck E. Cheese that was about 10 minutes drive from our dinner. Benny hadn’t really ate when we were there because of him being upset SO we decided that we’d get him a personal pizza and let him watch the show. It was so awesome! He got to enjoy a FULL stage show with all of the Chuck E. Cheese characters and while it was a little worse for wear, it was just fabulous to be able to see one of the last fully working stage shows. Animatronics just aren’t what they were when I was a kid. I felt like they were everywhere. (Here’s where I’m going to sound old and crotchety) Kids just aren’t like they use to be. They don’t care about animatronics, everything is either creepy or stupid to them. If it’s not at Disney, they don’t care.
Benny was in heaven, and so were Ben and I. There was a party going on for a little girl who had down syndrome and we got to watch her dance and play upfront with Chuck E. It was so amazing to see this little girl, she was so cute and sweet. Her family and friends were all around her, she might have been 4 or 5 and she just was having a blast. It also occurred to me, that Benny is far different from her. While on the outside she might look very different from other children, she’s not all that different. She claps along with music and laughs with purpose. Benny does not. It was all I could do to not cry, and then I did. Little hot tears rolling down my face while I smiled at her and her party. They couldn’t tell Benny wasn’t a normal child. He looks normal, but oh he is so far from it. I don’t mean it to be mean, I mean it to be HONEST. This is just Benny. Benny might make eye contact at times, but it is very little. He smiles and laughs at things with purpose at times, but doesn’t notice children. They are just objects in the way. He maneuvers around them. He doesn’t smile at them, he doesn’t hit or bite, he just simply ignores. So yes, seeing that little girl with down syndrome, she will probably grow up to be a pretty functioning member of society when she gets older. She’ll probably have a job somewhere and while she might not be president someday, she will be able to talk and hold conversations with people even if it is at a level lower than “normal”. I just can’t say that will ever happen with Benny. I’d love it of course, and we work on it and will continue to do so, but it’s not a given….NOTHING IS.
From Silverthorne, Colorado we trekked on to Las Vegas. I don’t know what it is with us, but by the time we get to Colorado we feel like we have to just get to Las Vegas. So yes, we drove 10 hours straight to Las Vegas. Now before ya’ll think “Oh that poor baby” he LOVES to travel and ride in the car and always has. We take breaks and he’s always got a snack or a drink and YES this child had DANIEL TIGER on a Kindle so he was either looking out a window or watching that at all times. He did great, but yes, as any one would be, he was excited to get out of the car. We went immediately to our favorite place in Las Vegas, Metro Pizza. It was nice to get out and it was the first time Benny sat in a booster seat. He did great! He also was being super snuggly with me and said “Love Ma”. I about lost it. Ok, I choked up. Haha!
We got to our room later that evening and it was so good to have a place to bunk down for a few days. We really love Las Vegas. This time of year, it’s not too hot and there is a breeze. Unlike Indiana, it’s not MUGGY. I think the hottest day we had there was lower 80’s. It felt amazing. We ended up walking about 10 miles a day and I am beyond thrilled we spent the money on a GOOD fold up umbrella stroller. We had numerous people stop and ask us about it, haha! Gotta love being a parent! I’d have done it too!
One of the nights we were out walking, we went into Paris Hotel and Casino. We decided to get Benny out and let him roam. At one point, we were in a congested shopping/food area and Benny saw a window that had display pizzas (whole pizzas) in a window and above was a sign that said La Pizzas or something. He stopped right in his tracks put both of his arms up in the air (like he wanted to be picked up) and then immediately brought both down and slapped his chest. He did this a few times over and over. We asked him if he wanted pizza and he got excited and stepped in place. We went to the window and got a slice of cheese and pepperoni and sat down to eat. We weren’t even sure if he was actually hungry, but we just KNEW he was trying to tell us something. He was hungry, he ate almost an entire slice and was having a great time hanging out with us. Ben and I both were just in amazement and as always it’s never just another moment, it’s SPECIAL. He didn’t have a magnet to tell us what he wanted, but he showed us!
I think everyone had the best time in Las Vegas and we even extended our stay for an extra night. Night walks and letting Benny run around was just so great. To watch his face looking at lights and eat Krispy Kreme donuts was so much fun. He even licked and ate an ice cream sandwich!
After we left Las Vegas, it was on to Williams, Arizona! Route 66 was the plan, but since I-40 pretty much went along with it, there wasn’t a heck of a lot to see until you got to Williams. Now, I know what some of you are saying “Didn’t you go to the Grand Canyon?!” “How can you get ALL the way OUT THERE and not take your kid to see the Grand Canyon?!”
Again, what am I suppose to show my child? I point at something at the end of my finger and he doesn’t look. A gigantic hole in the Earth is not going to capture his attention or amazement. He won’t get it. He just won’t. I mean, heck, I’ve never seen the Grand Canyon and I don’t even think I’d be super interested in seeing something that took me 2 hours in almost stopped traffic to get to. I’ve seen brochures, I get the jest.
We got to Williams and strolled around. Neat little town, I’d say if you’re on the Route, check this town out. You won’t regret it. Also, check out BEARIZONA! It’s a little pricy (maybe find a coupon?), but it’s worth it. Benny wouldn’t look out the window to notice anything, but I do remember at one point him laughing up a storm for some reason. I’m glad I remember that. Benny might be in his own world, but it’s a happy world. If anyone ever says that it must be sad to see your child like that, I can only respond that he’s happy there and safe there. In some sense, it’s comforting. I might not get him to come out of that world often, but I know when he’s there, he’s content and happy.
We initially were going to stay another day in Williams, but decided to jet on out. I think I drove from Williams to some spot in Arizona where I got pulled over. Ugh. UGGGGGGGH! Yes. Yes, it happened. First time in my life I ever got pulled over for speeding. It just happened. I know, I live in a world where there is such a thing as a cruise control, but I just didn’t think. That’s how you get those things…NOT THINKING. Benny had JUST fallen asleep and Ben and I were having a nice conversation and no one was around me on the road and I just WASN’T THINKING. I cried. I was mad. I was SO MAD at myself. We’re on vacation. This wasn’t in the itinerary. Leave it to me though, and leave it to my luck that Benny started to wake up. So, yeah, fun times.
I drove from Williams to Albuquerque (I so did not type that from memory), New Mexico. I was SO READY TO GET OUT OF THAT CAR. I wanted to cry and kick the car and kick myself. Stupid. Just stupid. Ugh.
BUT, we stopped at Buca Di Beppo and had a nice dinner. Ben knows how to fix things. Thanks Ben. 🙂 We headed to our hotel for the night and got some much needed sleep.
That next day we drove and we were going to go to The Big Texan (We only saw this place from the parking lot and didn’t have time to have an eating adventure like we’d hoped), but instead had a BIG CAR PROBLEM. Hahahahahaha. I laugh now. I wasn’t laughing then.
I was pretty sure Ben and I were both ready to just beam all of us out of the state of Texas at one point. Yeah, we get to Amarillo and all hell breaks loose. Somewhere along the line this pan comes loose under the car. Ben is on the phone with Ford Roadside Assistance and I’m texting my brother that is a mechanic. He’s telling us what to get and we end up at an AutoZone under the car trying to fix it. We’d hit Saturday at the time where EVERY DEALERSHIP is closed and guess what the next day was? EASTER. Yeah buddy, LUCK IS JUST OOZING OUT AT THIS POINT.
Well, we’re frazzled to say the LEAST and Benny has been a GEM the whole time so we decide to go across the road to Braum’s. We’ve been there before and it’s ALWAYS good. I think they have the best food ever. That’s right. Ever. Oh, and ICE CREAM. So, you know it has to be good.
Traveling down the road, I don’t know, MAYBE 20 minutes later and SKHHHHSKKKKKHHHHHHSKKHHHHHKSKSKSKS (pretend that’s a noise HAHA) happens. That’s the scraping of the pan falling BACK DOWN on the interstate going 80 miles per hour! YAY! YAY! FUN! Let’s pull over and see what we can see. I get under the car. Well, yeah, it’s down alright. What to do now? No AutoZone here in the middle of Texas where we’re outnumbered by cattle. WHICH BY THE WAY, WILL look up at you when you pass by and your car is making a horrendous noise. They even chased us! What an adventure. Luckily, I say this is the best way I can, Benny fell asleep through the loudest noise ever. I mean, this was right under his part of the car! I can’t even explain how loud it was, wait, yeah, the cows hear it so….
Anyway, we drove I don’t know how many HUNDREDS of miles that way. There was NOTHING we could do. And don’t even ask, YES, WE TRIED DUCT TAPE. (It wasn’t even going to pretend to work)
We get to where we were going to stay for the night, and if ever we needed something to go right, it was right now. We get to the hotel, scraping (brand new) car wheeling into the parking lot with worn out mom and dad (happy child thankfully). Ben goes to check in and comes out with a smile on his face. HOW CAN YOU BE SMILING DUUUUUUDE?!
“The lady said she’d keep the pool open for us for an extra 30 minutes! It’s got a lot of kids stuff in there!” It was music to my ears. We couldn’t get in our suits fast enough. We had a blast. There were splash areas and it was like a waterpark in there! Ben then did the sweetest thing (9 year old me was swooning), and ordered Pizza Hut. Ben doesn’t like Pizza Hut and not only does he not like their pizza, he hates stuffed crust and he got it for me. FOR ME! I felt so lucky at that moment. While the car sounded like it was about to die, it wasn’t. It was cosmetic. While, I felt like getting a speeding ticket showed how terrible of a mom I was, I’m not.
Stuff happens. I know so, I saw it on many trucker hats and beer coozies as a child. It really does happen though and who you’re with and how you handle it is what matters. The whole world can crumble, but if you have people who you love and love you around…it’s ok. You’re going to be ok. You’ll wake up the next day and you’ll figure it out and that’s just what we did.
We woke up on a drizzly Easter morning in Elk City, Oklahoma and went to another AutoZone where a freshly cleaned Ben crawled under the car in a filthy parking lot to fix the car. We joked when he was done about how long it would be before it fell again. I picked a time and that time went past. Then, we just let up our anxiety and just kept driving. We made it to the next destination Branson, Missouri.
Branson for those that don’t know is the Pigeon Forge West of the Mississippi River, haha. Look it up, almost all of the places are the same. Save for P’sghetti’s. If you ever want a great photo-op, go there, just….don’t go inside to eat. You’ve been warned. Ambiance is amazing, food leaves a LOT to be desired and it’s not the least expensive place to eat either. Branson was rainy and even though they have the World’s Largest Toy Museum (Yes, we went!) and they have so much to do that’s so Pigeon Forge-y, I honestly just didn’t have it in me to walk around in the rain.
We moved on to St. Louis and back to where we always stay (except for the last time which was 2 weeks previous) in the downtown area. We ate and walked across the street to Busch Stadium. There was a game going on, we didn’t go inside, but it was awesome to get to check out. It was good to be back in St. Louis. I knew we were almost home and man, I think we ALL were ready.
That morning was going to be awesome, but it wasn’t. Benny woke up crying at some point in the night (he fell asleep at an unusual early time) and we could tell he wasn’t feeling well. DANG IT! We decided we would go back to the meatball place and then to the zoo again. That didn’t happen. Benny wasn’t his usual meatball eating self. We ate and then left. Then he started having blowouts. Poor kid. He just wasn’t feeling well. We went to Garcia’s Pizza In A Pan at ate. Benny seemed to be in great spirits and I was relieved, until we got back in to the car. It all went downhill again. We stopped numerous times and changed his clothes a few times. I’ll never forget that.
We FINALLY got home (after stopping to see Grandma and Grandpa Galvin of course!) and man, we were sure happy to be back. I think the turtles were even happy to see us! Benny crashed out that night on me and that wasn’t normal, the next day he wasn’t himself and finally by Friday, I took him to the doctor. He’d had dirreah and had a dry cough. The doctor put him on amoxicillin and by Sunday, he was really not himself. He was so lethargic. I had to force him to eat and drink. 10 days of Benny on meds and he’s back to his old chipper self. He missed a lot of therapies, but he’s back in the swing of things.
The car has been looked at and they told me “You’re husband did a great job, that pan isn’t going anywhere!” So that made me feel good.
If you’ve stuck through this whole thing, congratulations!
I REALLY hope that I can start to update more often because trying to remember everything is SUPER HARD!