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Love makes us stronger

Hello, hello everyone!

Long time, no blog.

It’s all on me though, it wasn’t because there isn’t something to write about daily. It’s not because there hasn’t been great things happen for Benny, but because I’ve been sick for a long time and it finally caught up with me.

Before I get into that, Benny has had a wonderful Summer. He’s swam at least 2-4 times every week for the last 2 months. He’s went to Kings Island multiple times, once with his cousins Addie and Gabby, Aunt Kate, Grandma and Grandpa Galvin, and mommy and daddy. We’ve had such fun!

I’ve been so excited to go on walks with Benny and take him to the playground, go on these little day trips and do so many things, but in all honesty, I’ve been sick.

I wasn’t clear on how serious I was sick until about 2 weeks ago. I’m on anti-anxiety medication, I have been off and on for years. After Benny’s genetic test results and the adding on of more therapies, it was a lot for me to take on. I spoke with my doctor and told her that my anxiety was through the roof. The dosage she gave me didn’t seem to work. I had such pain in my chest and back nightly that I practically had a heating bag strapped to me 24/7. The dosage was upped and it seemed to be more manageable.

Benny’s speech was on a Monday, it didn’t go particularly well. He’s become more independent in what he wants and doesn’t want. It was a rough session that day. Tuesday, he had back to back (break in between for lunch) therapies and I had a new service coordinator to speak with. It was a lot to take on that day, I was stressed. He just seemed overwhelmed, as was I. In between the sessions, I made him lunch quickly and for a 3 hour span, there was at least one person in the house, if not 2 that I had to talk to or work with for Benny.

By the end of the day, I was wiped out. Just drained. Ben came home from work that night and I asked him if we could go to Chuck E. Cheese. One, because Benny had a long day, but because I NEEDED to go to Chuck E. Cheese! I just needed a break. It was nice, but I wasn’t feeling the greatest. I chalked it up to anxiety.

The next day after physical therapy, Benny went to his Great Aunt Kathy’s house to swim with his cousins and there were just a load of people there to play with. Ben and I went out on a day date to the movies. We ate there and I just didn’t feel well. Again, I thought I was just having a hard time due to anxiety from the previous days.

That evening, we went to dinner with everyone to pick up Benny. He fell asleep on me and I just held him. I felt so awful, I didn’t want to eat. That’s not like me. Ben asked me if since I was having a hard time, if I wanted to have a beer or two. I’m not much of a drinker, but I had a couple of beers in the hopes it would relax me. I spent the rest of the night feeling awful and at 6 in the morning on Thursday I was awoken by what I thought was the most serious panic attack I’ve ever had. It lasted 2 1/2 hours. I really didn’t know what was going on, it felt like a heart attack. I just felt like if I could lay still, I could get through it.

Later that morning I asked my mom to come over. I talked to her about my panic attack. She said, “That does not sound like a panic attack, that sounds like a gallbladder attack.”

I went until Monday in pain, barely eating or drinking anything and said I’d go to the doctor. She immediately sent me to get a CT scan. The scan showed that my gallbladder was pretty bad and needed to be removed immediately. I went and saw the surgeon on Tuesday and by Wednesday morning, I was scheduled to have it out.

The doctor said that my gallbladder was really diseased. He told Ben that my gallbladder felt like clay. The next day, I had a scope done and was put under a second time. The doctor said that he had to put a stint in, in the hopes to get the stones to pass through that were stuck. He took out 10 and he couldn’t believe how many I had. He didn’t want to go for more because he was worried about hitting my pancreas.

I have one more upcoming scope to see what the stint has done and I’m hoping that this will be the last time I have to deal with this. I know stones can still form and now my liver is working overtime for the rest of my life so I’ve taken this as a wake up call for me to take better care of my body. I want to be healthy for my son, he needs me to be there for him and I want to be!

He’s worked so hard it’s not been easy for him with me being gone in the hospital and not being able to pick him up. I told him before my surgery that mommy wouldn’t be able to pick him up and do all the things I usually do. That’s I’m sick and it will be awhile before I can do what I use to, but that mommy loves him.

It took him a few days, but he’s done great. I’ve gotten to play with him and go on walks, but no picking him up. It’s terribly hard, harder than recovering from surgery, but I don’t  want to make it worse. I am feeling better and I’m sure after this week, I’ll feel even better.

I felt awful that it happened when it did, it’s never convenient to get sick, but I still feel bad about it. I’m so fortunate that I have such a great family, not only mine but Ben’s that have helped so much. I know it’s been a great stress for Ben as well, work and coming home and doing it all and I’m grateful for him for taking care of Benny. It’s not easy.

Benny’s routine, hasn’t been routine and that’s been hard for him and understandably so. I just want to get back to “normal” and have a great rest of the Summer with my guys!

I know this was more of a me blog than Benny, but I’m hoping in the next week or so we can get back to business as usual!

Tomorrow is the fourth of July and I can’t wait for Benny to see the big fireworks! He made a painting today that looks like fireworks, he did so well.

He’s such a sweet, fun-loving kid and I’m more and more proud everyday to be able to say I’m his mommy!

Happy fourth of July to you all! Be safe and until next time!

 

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First Haircut!

Welcome everyone and happy Monday!

As you can tell from the photo, Benny got his haircut and HE IS LOVING IT!

I wasn’t really sure exactly how he would respond while getting it cut, if he’d notice it was cut and if he’d like it. He did really well, we took him to get it cut by my cousin Stephanie and she did an amazing job. She not only did a great job cutting it, but interacting with him and making sure he was comfortable. It put me at ease.

He watched Daniel Tiger on his phone (my old phone haha) and ate Goldfish crackers. The only parts that were a little rough for him were around the ear and the back of the neck. Honestly, I think that’s how it goes for anyone. Haha! She took her time, but it didn’t take long at all. I think the thing that took the longest was her sectioning off his hair in little parts so we could keep them for his baby book and his fans that want his hair. There were more people who wanted his hair than I anticipated!

There were a few times he looked up while getting his hair cut that he looked at himself. It was cool to see him notice himself. After he was done, Ben let him down and he ran off like he was a new man! He kept feeling his head and smiling.

Oh those smiles, as you can see in that picture, he wouldn’t stop smiling! I loved it. Sure, we all miss the long fluffy hair, but you can’t beat how this kid loves his short hair. I picked him up and he was looking at me with such loving eyes almost as if to say “Thank you for doing this mommy, I love it!” I tried to not cry (though I did later) seeing him look so grown up! It was like he aged 3 years in just a few minutes. I couldn’t believe it.

Benny seems to be looking around more and I’m sure that hair (albeit was super awesome) didn’t help with his vision that so desperately needs to be checked.

Today was his loaded day with therapy and I both look forward to it and dread it. I know speech is so darn tough for him. He has a heck of a time focusing on anything. Joint attention is so scattered and he gets increasingly frustrated. I can only imagine how hard it is for him. I have to keep positive, though it is a bummer at the same time. Watching him just make noises that he’s frustrated and trying to get him to focus is almost impossible when he doesn’t want to. I keep trying to get him to use the magnets with pictures on our fridge, but he is resistant. He wants whatever he wants and he wants it NOW, but won’t pick a picture. I’m not sure if it’s not descriptive enough or if he doesn’t want anything up there or if he just doesn’t want to use them. He did so well for so long. Now, he just wants to pull me to the cabinet or fridge and expect me to just know what that is.

I have to keep working harder, this isn’t something that will just happen someday. I don’t have that luxury of just knowing things will fall in to place with him. Everything he’s ever done he has worked for to do. I’m proud of him more than anyone could ever know, but yes, I am that mom that has to guide him and tell him the same thing over and over and I’m sure people would probably think I’m being hard on him, but I do everything I do with him in mind and his feelings as well. I always try to put myself in Benny’s place, which is probably why I at times become so emotional because I worry for him and how his future will be. I want the best. He deserves it.

Anyway! Tomorrow is developmental therapy, Wednesday is physical therapy and then this weekend we have an open house to go to for Ben’s cousin’s graduation and Meme, Ben’s grandma has a party on Memorial Day for her 95th birthday! It will be a pool party, so I’m hoping we can get Benny in and swim! He loves the water and now he has a new swim outfit and floaties!

I hope everyone has a good week and since I’m sure I won’t write until more than a week from now, Happy Memorial Day to everyone!

Summer clothes and little toes

Hi friends and family! Happy Tuesday!

Right now, Benny is upstairs taking a nap in the Music Room at The Student Center in Ball State University.

Today was Benny’s first occupational therapy session with a lady named Morgan. She seems great, she was great. I hope we can keep this up.

She greeted us when we were outside with Benny. We went inside and she started taking to us about what Benny can and can’t do. I’ve grown accustom to this, and I hate that. I feel like I shouldn’t have to explain him, but I’ll have to for the rest of my life.

He actually amazed me (Go Benny!) and he was more focused than I’ve seen him in I don’t know when. Toys that we have and try to get him to play with (he doesn’t), he seemed interested with her. I don’t know if he was showing off or not,  but he was smiling and playing with her.

It made me want to cry. I love seeing him play with others and doing well, but it does make me step back and try to figure out “How do I get him to be engaged with me so we can learn more on a day to day basis?” I want to put in motion what the therapists do, but I realize that they aren’t me, haha!

I got a good feeling today and I’m excited for next week. I’m so grateful for these women that have been brought into our lives to help my son. For how ever long or short the time, it has been worth it and when the time is done, I’ll be immensely sad not seeing them.

The weather has been great the last half week. I’ve gotten to mow, de-weed, move bonfire wood and clean a bit.

Sunday was a great Mother’s Day! Kings Island wasn’t super busy and we rode the carousel and train. We didn’t stay too long as we were all kind of tired, haha! Then we went to Jungle Jim’s International Grocery and home.

Monday was both speech and developmental. Benny got upset at one point at the end of speech. He’s not using magnets as he use to. If he wants crackers,  he looks where the cabinet door is for the crackers and he’ll look at the top of the counter where I put his drink to refill it. It’s frustrating for the both of us. I know what he wants at that point, but I have to reinforce the magnets so I know for a fact that’s what he wants. Someday, it might not be those.

I don’t want him to just go to the forge one day and make me guess what he wants. I want to be able to do the picture exchange process to help us. If he’s not talking, this is going to help me until he can physically go and grab something for himself.

I don’t want life to be frustrating for him and him to shut down. I worry so much about that. If I couldn’t tell someone verbally what I wanted and I was too little to reach and get things, how would I express myself? It’s scary. He does so well and it makes me want to cry. The world around him isn’t built for him, but I’m going to work everyday to make it a little more his world.

I’m excited for summer and little trips. Kings Island, day trips to wherever. Little tank tops and shorts. Swimming with my dudes. Playing in the back yard, lots of walks and maybe a picnic.

Friday, Benny will be getting his hair cut. Not a little, a lot. Short on the sides and back and longer on top. I know it will be cute. My cousin Stephanie has graciously taken this on and I am so fortunate to have her be able to do this. I know she will do an amazing job. She’s never met Benny and I’ve not seen her in probably a decade. I’m nervous and excited. I know it will be best for him. He’s chewing and pulling it now and with it getting hotter “His hair looks so awesome” is just not a good enough excuse to keep it that long.

Tomorrow is physical therapy and after that, he has the rest of the week off! I know I’m ready for a day off of therapies! Haha!

Until next time!

-Amber-

You make me smile

Even on the hardest of days, Benny makes me smile.

Today isn’t one of those days for me though, thankfully.

He’s ate a good lunch today. Avocado, chicken, apples, grapes, cherry tomatoes and strawberries. I think today his favorite thing was avocado, because even after he was done with his lunch, he came over and ate some of mine! Haha!

I thought I’d catch everyone up on the last few days.

We’ve FINALLY got someone to come and do occupational therapy with Benny. Her name is Morgan and I’m excited to meet her this Tuesday. We were put on a wait list in July for a therapist, they don’t come easy!

That will mean Benny has therapy Monday-Wednesday.

Monday- Speech – 10:45-11:45 & Developmental – 1:00- 2:00

Tuesday- Occupational- 1:45-2:45

Wednesday- Physical- 11:45-12:45

If anyone ever wants to know what we’re doing on those days, that’s it. We’ll be busy trying to fit the rest of the weeks work the other days. It’s going to be busy through January when he stops with First Steps. I am kind of scared of when it ends. It seems like we’ve been doing it forever. It’s been since he was 8 months old, but it seems longer than that and it’s been such a blessing. I’ve learned so much and watched Benny grow with the therapists. They’re really family more than anything to me.

I got a phone call the other day that I wasn’t expecting to receive for another few months at least. Benny’s name finally came up for the Family Support Waiver. We were told it could take up to 18 months (families years ago were on a 10 year wait list). We were very fortunate and waited 4 months shy of a year.

It will help us immensely and while I’m not 100% sure exactly what all it will aid us with, I’m glad we’re receiving ANY help at all. With him being disabled, this is a life long thing for him and he will need assistance for the rest of his life. Having a child with a developmental disability, I just do not know what his future holds and this will give us some of the essential help he so deserves and needs.

I just want to make sure my child has the help he needs and I will continue to work on that. There is just so much out there I don’t know, it’s scary. I barely know what is going on with my child, let alone the system that I need to know how to properly take care of my son.

There clearly isn’t a handbook for taking care of our children, let alone disabled children. I’ve been fortunate to be a part of some Facebook groups and feel I can ask questions of the other parents, but there is still so much even they aren’t familiar with. Having a disorder that has only been known of since 2007, it’s still fairly new to doctors and families.

Everyday is a new day to learn about what my child is going through, he never ceases to amaze me and I feel both excited and depressed every single day. It’s a battle, as I mentioned in a previous post. It just is. I will continue to be the best mommy I can be to Benny and stand up for him in every way I can. Be it emotional, educational or otherwise my child deserves to be happy and I will do my best to make his life comfortable while challenging him to strive for his full potential. In some ways, I’m a typical parent, in other ways I just can’t relate to normalcy.

Another thing that I know is kind of off topic but has been on my mind is that maybe some people Benny will out grow this.

Benny will not outgrow his DNA.

I don’t want anyone to think I’m selling my child short. I also don’t want anyone to think I’m living in a fantasy world.

Benny is disabled. That isn’t WHO he is, but WHAT he is. If that makes sense. It doesn’t define him, but does describe him.

Just as one might have red hair doesn’t mean that’s all they are. It’s part of our DNA. While a red-head can change their hair color, Benny can not change his disability.

No parent wants to ever say their child can’t do something, but as Benny gets older, that will become a part of my vocabulary. Not because I don’t think he can do something, but because he mentally or physically can not do something. It won’t be something at a certain age he will just one day wake up and do. Because we all hit our plateau. I will never learn certain things, or physically do certain things because that is who I am. We will learn to live with that and live with Benny for who he is. I will not be ashamed of that. I will hope that others that love him will understand that or can try to understand that.

My child is not normal and that’s ok, because it has to be ok. I don’t want my child to know that he is to be something he is not. He is perfect for him. He will be who he was meant to be and that’s ok. He’s special.

I also have had a hard time explaining to people who are curious that Benny is severely cognitively disabled. While he can do some things, he doesn’t do other things at all. I know people see him and see him smile and laugh and think “Well, he seems normal” or “He looks normal”. Just as people have invisible illnesses that are real, Benny’s disability is real. I show people the good a lot on social media. There are a lot of rough times. Benny has only been walking for a little less than a year and I believe his balance will always be off. While he continues to get better, faster and he’s looking a little more when he steps he is still very clumsy and off-balance.

I’ve had people ask me if Benny has down syndrome “Though he looks normal, does he have down syndrome?”

No. Benny has a micro deletion of his DNA. Down syndrome is an EXTRA chromosome. I do not know everything there is to know about down syndrome, but I know Benny for sure doesn’t have it. Those with down syndrome tend to be able to do much of what “normal” people do. Granted, it is usually delayed and they also have a lot of cognitive and physical delays, but not usually as severe as what Benny has.

It’s most frustrating when people think he will grow out of this. I can’t explain it well enough to let people know just how serious this is. I wish nothing more than for my son to thrive and be a growing member of society, but he doesn’t notice the world around him like you or I do. I’m not sure yet (as he’s not been tested) if he is on the autism spectrum or not. I just know that Benny is usually in his own world and if you can get him out of it for a moment, he is a joy to be around. But he will be in your world on his own terms. He doesn’t play with toys or with children. He rarely ever notices people.

If you engage with him, he will most likely look everywhere but who is speaking to him. He might turn in the sound of your voice, but if you aren’t someone he already knows (family) he will most likely not engage you and if he does he will not look directly at you. This is especially hard for therapy as it takes joint attention for him to learn anything. It takes a lot of coaxing and trying to get his attention. Somedays it breaks my heart and other days I’m ok. Believe me, when he comes up to you and gives you his attention, you stop what you’re doing and give him all the kisses, hugs, tickles he wants. It’s a special moment.

I know I ramble on a lot, but it’s hard to put down constructively and precicely exactly how I feel. I’m all over the place.  I hope that some of what I say makes sense in some fashion. If ever any of you that read this have any questions at all, feel free to ask me. I know it’s not easy to ask, I don’t know that I would if the shoe was on the other foot, but sincerely I will do my best to answer. You can message me on here or if we’re Facebook friends, you can hit me up there.

I appreciate each and every one of you that read these and take time out of your busy days to see how Benny is doing.

BTW, he’s napping and tomorrow the Ben’s are taking me to Kings Island for Mother’s Day! I’m so excited! While we don’t really ride rides, we love people watching and of course will ride the train and eat some yummy snacks!

I hope you all have a great Mother’s Day no matter if you’re a mother to a human or animal! Mother’s Day can be hard for everyone out there for various reasons, but I hope that there is some ray of sun that pops in to your heart to make you smile. Remember that you are loved!

Until next time!

-Amber-

 

Is silence always golden?

Benny defeats the obstacle course for physical therapy this week!

Hello everyone! Good Thursday to you all. I am, as always, hurrying to write while Benny is taking a nap.

The title of this blog today is what I think about a lot…well…in a sense. I think about how I see these funny meme’s on people’s Facebook about how their kids just won’t shut up. I generally laugh, as I know how kids are and how I was growing up. Endless chatter until I fell asleep. Questions, always with questions. Like I said, I generally laugh, but I don’t laugh so much these days about things I read. It’s especially hard when it comes to people talking about how they wish their child would stop saying “momma” over and over again. I know they don’t really mean it, but there’s a bit of a sting when I read it.

 

I get upset a lot over seeing people complain about their “normal” children. I don’t want it to. I want to get past that anger that starts to build up inside of me. The anger that, even though most of the people are joking, I want to respond to them in a negative way. I wouldn’t do it, but I feel like it a lot. I want to get to the point in my life where I’ve put away the sadness and anger over how I wished things were, but I think I’m always going to struggle with this.

Benny one day will be school age. Benny one day will be a preteen and then a teenager. Benny one day will be an adult. Benny one day will be without his parents. All of these milestones I morn. I know, most parents say “Stop growing up!” Well, I’ve said that too, but honestly I WANT HIM TO GROW UP. I just don’t know he will. As I will always say, “Nothing is a given.” It’s so true and scary.

I thought last night, “Will Benny always lift up his shirt and rub his belly on the couch?” I hope he outgrows it. (Though honestly, I love seeing him do it right now.) It gives him such joy, but honestly, I don’t think that places will look so fondly at a 25-year-old man running up to a couch out in public and raising his shirt and rubbing his belly on it.

I worry.

I try not to. There’s always the good and bad clearly of worrying. I know if I didn’t worry, Benny wouldn’t have all of the help he has now. My worry got him to get looked at beyond “You’re son is just a late developer.” Thank the moon and stars I didn’t just let that be an answer. I’m so glad I listened to my gut and didn’t let the doctor just keep telling us to wait another few months and see. Where on earth would we be now? I shutter to think.

I wish so many things for Benny. I know I selfishly wish things too, and I try not to. I try to not look at him and wonder what things would have been like if he weren’t how he is. I try to not think, because that child I think of IS NOT MY SON. My son is developmentally delayed, non-verbal and physically has challenges. THAT is MY son. I’m proud of him, but those thoughts creep in sometimes and I immediately shake my head or blink really tight and wipe those thoughts away.

I know those thoughts will ALWAYS haunt me. I say “haunt” because it does. I will always struggle and even though I’m sure there are people who think it’s wrong to think of your child any other way, I think it’s natural for EVERY parent to wonder what their child might have been like if something was even a hair different.

This week has been really a good one. Benny’s therapies went well, in both developmental and speech therapies, he made me Mother’s Day presents. Watching him make them for me, is as always bittersweet. As I said above, you wonder what it would be like if they did these things themselves, but he doesn’t. Watching him have help from the therapists is just different, but you immediately rush thoughts out of your head and get in the moment. My son is making me a beautiful gift. How special. I am a mom, HIS MOM and how freaking cool is that?!

Wednesday he had physical therapy and the weather couldn’t have been better to be outside. Carole set up an obstacle course for Benny and away they went. She pushes him more than I think I could and she gets results. She’s got a true gift. Watching her with Benny is so amazing, and believe me, I do my best to take it all in and learn. She’s got him going up and down steps on a slide and then with a little cheering on, he let’s go carefully and slides down. “GO BENNY!” we cheer him on every time. Then, like any child, he comes over for a quick snack. He kept coming up wanting a bite of my apple and I couldn’t help but laugh. Then after 2 bites, he’d turn around and get back to work. He’s truly such a hardworking kid. 3 (soon to be 4) therapies a week and this kid is just a champ.

After therapy we went to lunch and ate outside, it was so nice to just sit and enjoy everything after the last few weeks of being sick and stuck inside. I think we all were happy to be outside. We then went for a walk in The Village at Ball State. The students are gone (YAY!) and we really take advantage of everything around there. Lots of walks, eating and just exploring the campus. I love it so much and I’m so lucky to be so close to the college to enjoy everything. I’m really looking forward to this summer!

Speaking of which, Ben for the second year in a row has bought me a Gold Pass for Kings Island! I’m looking forward to going as much as we comfortably can. First time will be this Sunday for Mother’s Day! I hope that we can get Benny on some rides this year more than last. It’s crazy to think that this time last year Benny could barely hold himself up and couldn’t walk! That’s right, he’s not even been walking a year yet!

Well, I know there are lots more to say and I know (per usual) I rambled on far too long, but  this brain of mine never lets me stop thinking very long!

I hope you all have a great Mother’s Day with the ladies you care about most and to all of you that are mothers, thank you. The world wouldn’t be the same without you!

Love to you all!

-Amber-

Sickness, vacations and sickness

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!

 

One Of The Worst Feelings To Have

Hey, hey! Welcome back to the next installment everyone!

As always, it was a busy week and the next few weeks will be even busier!

I just went back and tried to re-read my last post and try to launch from where I left off and I CAN’T!! I hate when everything starts to become a blur! Oh well, I suppose I’ll try and just try to write an overview! Haha!

Speech this week went pretty well for Benny, not so well for mommy. I’ll get to that in a minute, haha! Sue really worked this week with getting him to focus more. I was impressed with BOTH of them, it’s not an easy thing to do. He wants to run to the couch, lift his shirt up and rub his belly and jump. She wants to get him to look at a book or do a song. It’s a LOT of work to get him to focus. Generally speaking, if it’s not Daniel Tiger, he doesn’t really care to focus. I don’t say CAN’T focus, because he can, SOMETIMES.

Benny kept wanting to hand me the “Blow bubbles” magnet, but after a few hand over hand tries, he handed the magnet to Sue. Not sure that he was feeling the bubbles, but he did pop and follow a few. That in itself is awesome because for the longest time it seemed he wouldn’t look in the direction of the bubbles, look up or follow them. He generally seemed more interested in the actual wand than the bubbles. I honestly can’t wait to get outside and blow some bubbles with him, last year was so much fun!

A big thing that happened this weekend was that Benny stayed the night with my parents. I per usual was having my doubts with him staying because I’m selfish and knew I’d miss Benny. Benny did great. My parents did great, but when we went to pick him up he didn’t want anything to do with me or Ben.

(EDIT: From this point on is being written 2 months after I started the part before)

This went on for 2 days. It was pure torture for me. I felt like I might never get Benny back. I felt guilty for letting him stay so long. He doesn’t understand, how could he? I mean, when we’ve dropped him off for a few hours or let him stay the night somewhere (which had been all of maybe 2 other times) it was less than 24 hours at any point. He’d before not seemed to care we were gone or noticed, but this time was different.

It will be awhile before he stays the night again somewhere because we just don’t do much to warrant that and because while he did great and everyone had a blast of a time, I did NOT have a good time trying to get my son back to “normal” with me and my husband. I don’t look forward to ever having to do that again.

A lot of children will cry and be upset and eventually they will understand that you will come back and have that cognitive response as such, but with Benny, I don’t think we have that luxury of knowing he will understand. I tried to explain to him for the entire week coming up to that, the day before, the day of and when I left and I just don’t know that he understood or could even understand what I was saying.

Since the start of this entry, almost 2 months has passed and while I know Benny seems to do a little better in understanding what we say to him, I still do not think he would understand what was going on. I still think he would think we left him and weren’t coming back. I’d like to think otherwise, but I just can’t say for sure.

I appreciate that my parents took such good care of him and had such a great time. I worried, but because I’m a mom and that’s what moms do. I knew he was in great hands and being taken well care of, but that’s just what I do.

I know it made my parents feel bad that when he got back with us he didn’t respond. From their standpoint, he had a great time and all was well. They didn’t do anything to make him react that way when we picked him up, but man, Benny really showed us that there’s more going on inside that head of his than we could ever really know.

This kid may not be like your kid or every other child, but he’s got a lot going on inside of him. It’s hard to always tap in to that with him, but when he wants to show you, it’s there.

You impress me Benny, just know though, mommy and daddy would NEVER leave you. The day you were born, you changed us and you’re forever with us.