Author: Jen Rios

12.28.24 “She Wasn’t Wrong.”

Last night, before we got into bed, my Mom looked at her phone to see what the date was and because it was after midnight, it was December 28. She said so.

Right after she said it, I said, kind of disinterested, just like that doctor said, “Look, you have MS. You’re going to go blind. And then you’re going to die.”

Just after I finished saying those words, I let them hang in the air for a moment before I covered my face with my hands. And I begin to cry, as my Mom said that she was sorry.

Tears these days are kind of clipped. I don’t cry for very long, but it is a heaviness that hangs in the air. I’m vaguely thinking of this song from the 90s and maybe I will write about it soon.

I’ve been telling my Mom that I never would have imagined that my life would be how it is now 24 years after I was diagnosed! I can’t believe this, but this is how it is.

Thinking about that doctor with those ugly glasses, she wasn’t wrong. My eyes have started fading so much so that I have a new sentence that I say. It started just before Christmas. That sentence is:

I can’t see that.

Rough Day

I was awakened today by a throbbing pain in my knee before I even opened my eyes this morning. I hate waking up like that But, my mind was taken off of my knee once I sat up in my bed and as the bed was moving to a sitting position from zero gravity, I voluntarily let out an aria of, “Oh’s.”

I gave up and just decided to lay back down. I knew that it was going to be a rough day… AGAIN!!!

Mornings are SUCH a rough start, actually, my days begin in the early afternoon now. Tomorrow is my 24th anniversary and I knew I would be quiet about it. It’s a strange feeling in the bit of my stomach.

Sean came over yesterday for some leftover Christmas food and I told him that my due date is on Friday. He looked at me so shocked! He just said, “My birthday was a long time ago!”

The Tree Skirt?!

I noticed this yesterday, as I was about to go to sleep, I glanced at the tree, and I saw that the skirt is there, I exclaimed, “t”The tree skirt?!”

I haven’t seen that in years! I thought it got thrown away when Sean was maybe 13 or 14. I’m so glad it’s here! I remember my Mom brought it up the basement in July but then I forgot about it but now it’s here on my tree!!!:

I would’ve made sure that it was completely flat though, I’m just a little OCD I think. Maybe a little bit MORE than ‘a little.’

Feliz Navidad

I had Christmas music playing on shuffle the other day, and José Felicíano came on. I asked John if he knew that he was blind. That information shocked him. I’ve never talked about it, but this song is just as much in Sean’s child as it is mine because I make sure of that because I listen to it a lot.

I just told my Mom that I remembered before basketball practice at Saint Clemens (we had to borrow their gym some nights and they are located in Dearborn) that me, and my friend Jenny Sauceda were hugging each other and dancing in a circle while singing this song. There’s not very many words, and we knew all of them because I’m sure this song was just as much a part of her Christmases as it was a part of mine!:

20 Years

Yesterday was ‘go time’ and Dr. Clark had canceled his appointment appointment earlier in the week changing the days he is doing his energy work. I would see him on Wednesdays when I got my haircut but he changed over Tuesdays for next year.

I made an appointment for the Tuesday after 15 January when I get paid. We will discuss further appointments later because I don’t think that change works with my schedule.

I am finished leaving the house for the year. It is getting MORE difficult and my disease is progressing and this ALL scares me so much!

We were able to go to the lights last night as well after we got our haircut because we had the van. It had been 20 years since I had gone to the lights! I took Sean when he was three. I was nervous about being able to see all of the displays because my eyes are getting worse.

When we went to the lights, nobody was there, so we could go slowly through, and I was able to see all of the displays clearly because a lot of them, I remembered! There was one display that I had to ask my Mom what it was. Both she and Sean told me what it was and because there was no one in line, my Mom reversed, and I was able to see it. Because I knew what I was looking at!

I have been so nervous about my eyesight lately, but I’m happy that I still was able to enjoy the lights. It had been 20 years since I took Sean when he was three.

My Mom asked me which one I like the best and I told her that I love the snowflakes! I normally decorate my Christmas tree with them, so of course I would say that! I also liked the marching band! I think that one was new.

5th and Final Tine

I watched Love Actually today and I think that is going to be the fifth and final time this year. I absolutely LOVE this movie and I didn’t see it until 2019. When it came out, I was busy watching kids stuff because Sean was just a kid. I had heard stuff about this movie so I finally watched it in 2019. I couldn’t get over how weird Alan Rickman looked!!!

And I love this song in this movie as well!!!

But this scene with this song is what sealed the deal for me!!! That song is my soundtrack for my first year at Western!!!: