Author: Jen Rios

“It’s So Darn Cute!” OR ‘Masterpiece’

Sean has always had crazy cowlicks and I attributed to his dad because I remember seeing a picture of his dad with a really big cowlick on the right side of his head when he was like 12 years old or something.

We moved out of my Parents’ house when Sean was three years old and my Mom would call me on the weekends to tell me that my Dad had not seen Sean all day and to come over and she will make us dinner. I loved receiving those calls all the time, I would never comb Sean’s hair when he was three years old. My mom would comment on it all the time!

She would ask me if I combed this child’s hair today?! I would just smile and shake my head and tell her that, “It’s so darn cute!” as she would comb his hair.

Now, let’s fast forward to me having a mass for 23 years. I can no longer have my hair be as long as it was for my whole life! I don’t even have the strength to wash my hair myself anymore. My Mom washes my hair and I put it up in a towel as I always have but when I am going to dry my hair, I dry it like a man because it is so short. I never thought I would say that in 1 million years!

I’m still getting used to having my hair so short especially because it curls now. I didn’t get my haircut in August because I got my wheelchair assessed. It needs a new actuator. Whatever that is?! My hair had two months of growth before I got it cut. It felt very strange growing in and I asked my Mom to take pictures of my hair before I get it cut. She took a few pictures:


My Mom snapped these pictures just before we got our haircut and as soon as I rolled into the spot to get my haircut, I looked at Christina and told her that, “I NEVER realized what a masterpiece she has done with my hair!” She kind of shook her head dismissively and told me that she has been cutting my hair for over 20 years. I told her that I never realized that I had so many cowlicks and she cuts it so my hair fall so nicely, even when it gets overgrown, like it did last month!!!

You KNOW that this song was playing in my head as I was telling her that my hair was a ‘masterpiece.’ This song definitely dates me, but it was back when I was still teaching and still part of the world. And by the way, Sean gets those cowlicks from me. And I get them from my Dad.

12 Years

Yesterday, we witnessed a mom caregiver struggle with her son to get into a car. He was in a manual wheelchair. There was another woman who was going into the chiropractor office as well. My Mom got out of the van to investigate and talk to the woman. I just sat in the van and waited.

it wasn’t until this morning when my Mom was getting me out of bed when I kind of looked at her in disbelief and told her that I can’t believe that we did that what that woman did with her son for 12 years!!! My Mom and I are the same height (she’s a little shorter now) and that makes it a little easier, but it was definitely extremely difficult!

I saw this meme on Facebook last night after we got back from our haircut and ‘go time’ was over:

I am in a power chair now at the suggestion of my wheelchair tech at the time, Christie, and we are Facebook friends now.

Seeing that posted on the elevator hurt my soul and I said that on Facebook:

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Seeing that last night, brought back all those memories of NOT being able to do things from a manual wheelchair And I thought about that man and his mom. But that used to be me and my Mom!!!

I fought getting a power chair for a long time and it was actually Christie who asked me as she was watching me roll around my house, “Aren’t you tired?!” I hadn’t really thought about it, but the answer was, “Yes. 100%!” I just didn’t want to lose my upper body strength by using a power chair.

Fast forward to 2016 and it’s extremely painful to have your meniscus torn and therefore I had no choice but to get into a power chair. And as for the upper body strength, yeah, it’s all gone now! But things are so much easier in power chair!!!

When my Mom got out the car and talked to that woman, and there was another woman outside as well who was also a caregiver, the woman helping her son thanked my Mom and the other woman and said people just walk by all the time. Oh man, I remember that as well!!!

Spent.

Today was the first leg of ‘go time.’ I have two appointments next week because we are getting our teeth cleaned on Tuesday and then I am going to the pain clinic for the first time at Henry Ford on Friday!

Then, the following Tuesday, I am going to get a Visual Field T est done add Henry Ford in Troy. And lastly, on October 17 after our haircut on the 16th, we are going to the Cidermill!!!!

This is a whole lot of stuff for the next three weeks! I just wish that I wasn’t so nervous because I am so spent today! I work out, I do have faith in that. I just can’t believe how tired I am! All I did today was go to my naturopathic and get a haircut.

it was 81° when I was out and about so that made it difficult as well! I definitely didn’t feel the fall breeze today but maybe I can feel it on Tuesday or Friday coming up. Either way October 1 is coming! But man, I am SPENT!!!

“Naked Water”

This morning, for the first time since probably 2011, I had, “Naked water.” I have been drinking lemon infused water since probably 2011. I remember writing about DoTerra when I first started my blog. That’s the company where I get my OnGuard essential oil toothpaste and lemon essential oil in a little bottle.

We ordered it a couple weeks ago I think when my Mom got paid but it still has not come. It usually takes a week to come. My Mom called this morning and it should be here tomorrow. It is the weirdest thing in the world to drink, “Naked Water!”

My first Yeti has lemon in it as well as silver. My next Yeti is just naked water. I drink roughly 2 30oz Yeti cups of water a day. It was startling to start off with naked water this morning for sure!

The woman said that it’s supposed to come tomorrow. Tomorrow is ‘go time’ so we’ll see. I appreciate having the silver in my water as well because that makes my teeth tingle. I am getting ‘dosed’ for a number of things tomorrow. Three or four things. I wonder when this disease progression will slow down… if it ever will?!

Gearing Up

I have already begun gearing up for this month’s outing. I am getting a much-needed haircut on Wednesday. I am also going to see my naturopath before I get my haircut. He will see my overgrown eyebrows?! I’m a little embarrassed about that but it cannot be helped. I have to get dosed for a couple of my supplements. My needs are changing medically.

We are getting our teeth cleaned the following Tuesday and then I am going to the pain clinic for my knee. This is the first time that I have gone to the pain clinic but I know what I need!

I think it’s a little crazy that right after I go to the pain clinic, I have a visual field test on October 1. I haven’t had a visual field test for a while and I’m nervous for what it will show. I already know that I’m having issues with my eyes but I don’t know what extent. I’m gonna find out on October 1. My appointment is at 3 o’clock. I hope that I’m not too bummed out to watch Hocus Pocus! That IS the first of October…

“Bubbly”

This morning, a random memory popped in my head as I awakened and I teased it out so I could remember it more and I could remember more things about it. It is the sweetest memory!!!

I think that I first have to preface this with a not so sweet memory. But I’ll be quick. I think it must’ve been November 3 when this baby was born. She was Sean’s neighbor in NICU. I got all of his information from nurses talking with each other. A baby was born when Sean was in NICU, and her mother never came to see her. Her grandmother did not even know that her daughter was pregnant and no one came to see her.

We heard that as we were sitting with Sean. I remember crying because I had just had a child and I told Sean’s dad that we had to take her home with us! He just said kind of exasperated, “Jen, we just had one of our own!” I remember nodding but still feeling terrible for that baby. I could see her because she was right next to Sean. She was cute!!! The nurses were on the schedule to take turns to hold her to help with her development.

But now, here comes the fun memory. When Sean left NICU, I had already made appointments for him. He needed to see an ophthalmologist. Being premature, that affects the eyes.

We had an appointment for sometime in February. And I remembered that because at that appointment, Sean was three months old and finally fit into 0 to 3 month clothing!!! But he had a mint one piece long sleeved, onesie/loungewear thing on.

Sean was all bundled up because it was cold and we were waiting for our turn. They were probably about four or five other mothers with car seats for their premature babies as well.

Having a premature baby was pretty stressful! But this day, I remember seeing an absolutely bubbly woman with shorter light hair probably in her mid 30s. She had a long coat on and she put her baby down as she unbuttoned her coat. I was sitting there just waiting, and she looked at me and told me so excitingly that she had just got this baby on Monday!

I smiled at her, and I think I told her ‘congratulations’ She continued telling me that this baby was slightly premature and a bunch of Doctor’s appointments already scheduled before she got her. She said that’s why she was there.

It was nice to see how excited she was and I remember she started unzipping the cover to her baby’s car seat.
I checked on Sean, who I had unbundled, just as I turned my head to the right, she had the cute baby next to Sean in NICU!!!

I have no idea what made me think of this almost 23-year-old memory because Sean will be 23 in November, but it was a sweet memory to wake up to! That woman was so happy! But thinking of how bubbly she was, makes me think of this song as well. We was living in our second apartment when I told Sean that this is what “Good Kids moms’’” want for Christmas. He asked me that when he was five or six. I cut myself the CD and put it in my stocking:

I did not tell that woman that I recognized her baby but then Sean and I were called, I think we just gave each other well wishes as I went back for the appointment.

I think it’s crazy how random memories popped into my head but I enjoy thinking about them because I was more ‘able’ then.

“Just Take the Candy!”

I used to go with Sean and my Mom to take Sean trick-or-treating when he was young and I was more able-bodied. I saw this meme yesterday and I started to laugh and I will tell you why:

It was 2005 and I think Sean was a werewolf? Trick-or-trusting when he was young was pretty organized. I’m OCD.

Sean ALWAYS wanted to choose his candy bucket and he didn’t like the idea of pillow cases until he was older. I remember that it was my first year teaching and we were allowed to wear understated costumes while we taught. I borrowed my cousinT, Shannon’s fairy wings and I covered my face with glitter.

I had taught that day and I was tired and still had my glitter on. Retrospectively, I should have forced myself to walk with my crutches!!! But, I didn’t and my Mom pushed me on the sidewalk while Sean went to each house with my Mom. I stayed on the sidewalk and I had a pillowcase with Sean’s overflow candy so his bucket wasn’t too heavy.

As Sean and my Mom came back to the sidewalk, she had a strange and somewhat amused look on her face and said as she grabbed my handles. She whispered urgently, kind of under her breath, “Just take the candy!”

I didn’t know what she meant until the homeowner who just gave Sean candy walked directly over to me with her bowl of candy. I immediately knew what my Mom meant and I smiled and held up the pillowcase that had a little bit of candy it.

As she came close, I said, “Trick-or-treat” and thanked her as we went to the next house. My Mom told me that she noticed, “The girl in the wheelchair!” That’s why she came to me. I told my Mom that I cannot believe that I just trick-or-treated and I was a professional and 23!!! My Mom just shrugged and told me that it was for Sean. Well, it was!!!

That Fall Breeze

I saw this and shared it on Facebook and it absolutely made me laugh:

That is exactly how I feel! I cannot wait until October 1. But I have NOT left my house since July 21. I am hoping that when I leave my house on September 18 for my haircut, I will smell Fall!!!:

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Sean told me today that he heard that the 2023 summer was the highest on record only to be surpassed by the 2024 summer heat! I told him that it’s definitely a lot more unbearable than last year and last year was a little bit tough.

The Same D*mn Comb!!!

So, I have written before about the fact that my hair is curly now that I’m in my 40s and my Dad was the one in my family who had curly hair. A couple of my brothers have curls and one has waves. I had straight hair. When I was a kid, what I wouldn’t give for curly hair!!!

My Dad did not have very much hair on his the top of head but my Mom disagrees. He had a really big forehead. He didn’t have hair on the top of his head but he grew a ponytail. My Mom did not like it but he did it anyway!

I have crystal clear memories of my Dad getting ready to go somewhere and he would comb his hair before he put it in a ponytail holder. As his ponytail got a little bit longer, the curls would knot up, and I would watch him yank the comb through his hair. I always thought that it looked painful! I remember that it sounded painful!

I am not sure how long after my Dad died, but my Mom brought me the comb that he used to use. I had already cut my hair so I could use combs instead of brushes. She actually brought two combs to my second apartment. I remember that I cried when she brought them to me and I have been using them ever since!

I missed my haircut last month because my power chair needed to be serviced and it’s currently at phase 3 of 6 in the process of when I can take it in to actually get fixed. I am going to have a two month growth before I get my haircut next week. My hairstylist cut my hair short so as it would not curl. She asked if my Mo would blow dry it or if I would have product in my hair and told her that I wouldn’t do that, so she just said that we have to go short, and I agreed.

I remember reading somewhere in a magazine when I was a teenager that hair follicles are different depending on your type of hair. Straight hair follicles are different than curly hair follicles and both of those are different from wavy hair follicles. I’m experiencing a shift in the follicles I think because it feels weird!

So, let’s go to this morning when I was combing my hair with my Dad‘s comb. My hair is getting longer, and it is starting to curl. I do not move when I sleep, so I stay on my back all night and my Tempur-pedic bed. Sometimes, the back of my hair gets knotty now.

This morning, because it is longer and a bit curly, I was running the comb through my hair and it knotted in the back. I stopped pulling the comb through my hair and thought for a moment about my Dad just yanking it through the knots. I paused and gritted my teeth, and just yanked it through my hair! Yes, it hurt A LOT just like I suspected when I was a kid! But I can’t help think are using the same damn comb! This is what it looks like, it was issued by the hospital many years ago and my Dad didn’t want to have to pay for a comb so he didn’t and I guess now I don’t either:

it did bring pause to me to think that we are using the same d*mn comb!

A Doozy of a Memory!!!

I have been living in my memories for eight years now. Since I stopped working. My Mom and I didn’t find out that I am”Homebound” until December of 2023. I was going to be accepted into the HAP Senior Plus insurance plan because I have been disabled for so long. I no longer make my own memories and just look back into the catalog of my more able bodied times.

I had a doozy of a memory this morning as I was sitting in my bed waiting for my Mom to transfer me out of it!!! it was complete with a soundtrack!!! I heard the opening bars of this song as I saw in my head this scene:

And this is the song that played in my head as I was sitting in my bed waiting to be transferred:

Well, this song was released in 2015. I was still working in 2015! I was the Reading Specialist already for the school. I was still actively working out at Barwis Methods back then! I saw that scene in my head but my memory of that book is different.

I was teaching in my last classroom at that time, a converted closet off of the cafeteria as the Reading Specialist, I always would let my students catch me reading (something I learned specifically in college). I would read between classes. As students would come in, they would see me reading.

I remember that I specifically bought this book because the movie was coming out and this is the actual version of the book that I have:

I was reading the specific part where they go to the horse races, and he is in his power chair, and I knew it was going to be a disaster! As I was reading the words, my eyes started welling with tears but the bell hadn’t rung yet and I had to finish the paragraph.

The memory I had of this song, and this movie was about the book I read and cried in front of my students! They were so concerned, and they asked, “Miss, are you OK?” I remember wiping my eyes and telling them that, “You know that it’s good writing when it emotes emotion!” I was not embarrassed to cry in front of them at all, but one thing that this movie points out is the fact that disability is for the rich!!! I do not have a stable to convert to an handicapped accessible apartment!

Waking up is very difficult for me now, but I’m so happy that I had such a vivid memory to focus on to help me wake up! I am not sure that I will rewatch that movie for a while because it’s kind of tough as a person in a power chair and I am absolutely NOT rich!!!