Month: May 2020

Thanks, Daddy!!! 💜💜💜

So, my YouTube feed is filled with horrible news again with all that is going on in the world! As I was scrolling through it, I found this video:

I remember seeing them perform the song when I went to their concert with my brother, Steve, and a few colleagues from work. I remember Bono talking about why he wrote this song and dedicated it to his dad, Paul Hewson. I dug his reasoning for writing this song and this was less than six months before my own Dad would die.

I listened to their 18 Singles CD on my way to work for a long time.

I had just started my second year teaching and it was still dark when I drove to work. I would listen to this song continuously on my way and sing along and sob. I would put my sunglasses on as I walked into my school on my crutches in the morning when it was still dark.

I wore my sunglasses when I got my work done before school started so my eyes would not be read and puffed up in front of students, when I began teaching.

I really liked seeing this video in the middle of all the terrible news stories of the events taking place now. As I watched it, I remember driving and listening to it in the dark and crying. The tears came back today as I listened and remembered that time. I choose to think that my Dad had something to do with it showing up in my YouTube feed and for that, Thanks, Daddy!!! 💜💜💜

World MS Day 2020

When I woke up this morning, I realized today would have been my Dad‘s 69th birthday. As I sat in my wheelchair in my living room and tried to wake up, I celebrated this day by posting it on Facebook and began to mindlessly play Solitaire on my phone as I tried to wake up. It took me a moment to realize that not only was it my Dad‘s birthday, it was also World MS Day:

When I realized that was also today, I put my favorite Sara Bareilles song on Apple Music on my phone:

I absolutely LOVE that song and it reminds me of, “Walking Wednesdays” at Barwis Methods and when I was actively working on walking.

Even though World MS Day has only been a thing since 2009, I will have had it for 20 years this December. I got onto Facebook and immediately saw this and completely agreed with it:

I told my Mom this morning that I could not believe that my Dad would have been 69 today! I cannot believe that 14 years will have passed this August

and then exclaimed that my Dad is old! My Mom immediately took issue with that statement because she is 67. I told her that my Dad is a year and a half on and then her so she will NOT be old for another year and a half! In fact, I don’t think I will EVER think that my Mom is old!

In my brothers and my Mom’s group text today, my Mom texted us all to remind us all that today is my Dad‘s birthday and he would have been 69 even though he was 55 when he died. Then my Mom texted that she is a cougar because she is 67. That text made me laugh!

I wish that World MS day was not a big deal for me but for the past 11 years, it has been. In fact, for the last 19 years. So there’s that and I miss my Dad! I am wearing a V-neck white T-shirt just like my Dad used to and I always think of getting my Dad Oreos, lemon drops, socks, and T-shirts when I was young that was orchestrated by my Mom. I made my Dad a mixed CD for his 55th and final birthday he had with us.

A Month and a Day

Yesterday was one month that we have had our Boxador, Leia. Here is the picture I was emailed when Amanda from Good Karma Puppy Rescue let me know that she was available for adoption.

Sean decided that he wanted to adopt her and because he is not 21, I adopted her for him. It was my graduation present for him because he has lost out on so many things during the end of his senior year. So yesterday was a month! She is a sweetheart! She’s a really laid-back puppy and she is completely housebroken. I ordered a harness a while ago but it ended up being too big for her so last night, we got a properly fitting harness:

It was late when we got it in the mail but we had to try it on her. In the picture, her tail was wagging because she thought she was going out for a walk. It was late and I kind of felt bad for her but she got to wear the harness this morning for her morning walk and potty break.

I think it’s absolutely crazy that in one month, I am a, “Dog person!” because I really am now. My Chewy order arrived for her this morning as well and she COMPLETELY tore up one of the puppy chew toys! Looks like I will have to peruse the site further to buy more toys because her jaws are too strong for puppy chew toys. I still have a lot to learn about being a dog owner her at least someone who loves and cares so deeply for one!

Jackson Pollock

I’ve written before how Sean thinks that I only watch 10 movies over and over again. I will not dispute that fact because it is completely true! If I really like a movie, I will watch it 1 million times! I thought of this yesterday because currently I am in my The Accountant phase. I’ve already watched it about six times during this cycle. What is this movie dad was introduce me to Jackson Pollock‘s work:

Christian Wolff (Ben Affleck) had this painting in his trailer and Daena Cummings (Anna Kendrick) recognized it immediately. I remember that painting having a lasting affect on me and when I watched The Longest Yard (not sure which movie I saw first) but in that movie a bunch of Jackson Pollock‘s work ends up being auctioned off to Luke Collins (Clint Eastwood’s son).

So, watching The Accountant yesterday made me think about a project Sean had made in school a couple years ago. He hooked it on to a hot I have in the living room. That hook is for a picture frame I had for a very long time. The first picture I hung was from Sean’s First Communion. I updated it for his Confirmation but when my living room was painted when my kitchen doorway was widened, the room was painted and I have not gotten around to hanging the painting deck on the wall.

So, Sean brought his project home a couple years ago and hung it on the wall where his Confirmation photo was supposed to be.

When he brought it home and hung it up, I told him that it looks like Jackson Pollock‘s painting. He told me that’s what he was thinking of when he did it! I guess my crazy idiosyncrasies have someone of an impression on him too.



NOT SO Random Songs in my YouTube Feed #37-42

My YouTube feed has been filled with nothing but news stories for a while considering all that is going on in the world. Well, on May 13, “Big brother” figured out that I needed to eat a little bit of a break so I randomly received songs from my favorite band! They knew that I needed a pick me up! I have shared all of these songs on Facebook but I thought to compile them here in one place and for you guys to enjoy! You’re welcome!:

May 13. “Bad”

May 13, “Kite”

May 15, “Sunday Bloody Sunday”

May 15, “All I Want is You”

May 20, “With or Without You”

May 25, “Hawkmoon 269”

“Stinky” and Chewy

Okay, so, today is hair washing day. As my Mom and I were in the bathroom and as she was washing my hair, Leia made her way over to the hallway just outside the bathroom to, “Be with us.” She laid on the hallway floor just outside the bathroom as my Mom washed my hair.

Now, I don’t want to put my girl on Front Street but I am going to put her on Front Street. The, “Her” I am talking about is, “My Girl L,” also known as Leia. My Mom stands in front of the bathroom sink as I sit on the toilet seat for her to do this. She is closer to the door and as she rinsed out the washcloth she uses to get the soap out of my hair, she said, “Stinky!” I looked at her questioningly just as she told me. “She farted.” Immediately, the stench in my nose! I crinkled my nose and waved my hand in front of my face. That’s gross! I never thought I would have to be exposed to this but I have a dog now and in less than a month, it is apparent to me that I love her!

My Mom took her outside as I blow dried my hair in the normal, “3 act play” format. When they both came back in, Leah came up to me and put her head on my thigh. I petted her head with my right hand as they held the blow dryer with my left. She really is a cutie! I love her!

So much so that I created an account today:

Once my account was created, I had too much fun perusing the state and I spent too much money on things for her. It’s a good thing that I did not have tons to spend but I did get her a few chew toys and some treats. I had WAY too much fun shopping!

Memorial Day Weekend

I shared this picture on Facebook yesterday and have been thinking about a blog post I would write in conjunction with the picture:

I went to Washington DC one Memorial Day weekend with my Parents and two of my brothers when I was about seven years old, I think. Back then, I didn’t understand the magnitude of the holiday, especially for my Dad as a Vietnam veteran. Now, as an adult, I have much more of an understanding after extensive reading and watching documentaries and movies.

I remember going to the Wall with my Parents and my brothers. I didn’t fully understand what was going on. I remember that there were a lot of people there and my Dad had a serious look on his face. In fact, that was the only time I saw my Dad cry in my life. When I say that I, “Saw him cry,” I mean that I saw my Dad put his thumb and index finger under his glasses and over his eyes. He held his fingers there for a while and the only reason I could deduce that he was crying was because his fingers were wet.

I also remember my Parents consulting the large book at the beginning of the Wall. Apparently, my Dad was looking for a specific name to no avail. When he gave up his search, he and one of my brothers and I went somewhere else. My Mom stayed there with one of my brothers to continue their search. I think my Dad, my brother, and me hung out at some other monument. After some time, I remember my Mom and my brother returning to my Dad, my brother, and me. My Mom handed my Dad a piece of paper with a tubbing of the name.

I vaguely remember my Parents talking and my Dad taking the paper and walking away. I remember my Dad walking away with his head down and looking at the paper. It was kind of a, “Forrest Gump” walkway to me.

My Mom took a picture of him walking away and I remember seeing that picture years ago. I asked my Mom about that today and she remembers it. She no longer remembers the name of the man and thinks the rubbing may be in her Bible but she’s said that she remembers the story. I asked her to tell me and she just gave her head the slightest of shakes with a serious look on her face. I can totally respect that I didn’t ask any further questions.

I am thinking about and missing my Dad a lot today! Maybe I will see that picture again one day. If not, I still remember it with the utmost reverence.

“Be a Man”

So, I awakened this morning and heard my Mom outside with Leia so I grabbed my phone and started absentmindedly scrolling through Facebook. I saw this post and it made me catch my breath and I shared it.

I am immunocompromised and I kind of liked seeing it. With everything going on with COVID-19, it has made people take me into consideration more because I am immunocompromised. My Mom has been holed up in my house with me for three months and I really can’t see an end to it.

Thinking about that was too heavy for me first thing in the morning so I continued to scroll and then I saw this one:

Seeing this mug made me chuckle and I added the words, “If my Daddy was still here!!!” and shared it. My Dad used to tell me to, “Grab my guts,” and to, “ Suck it up and be a man about it“ to which I would always reply that I am NOT a man! He would then tell me that it didn’t matter.

It’s only recently that I i’m starting to understand what he meant. In so much of my immunocompromised life, I have to, “Be a man about” and I’m grateful that my Dad taught me that from when I was very young. Even though I didn’t pay attention to that back then because I never thought I would have to,”Be a man” about anything, but I actually do and I hear my Dad’s voice often when faced with something difficult… EVERYTHING is difficult nowadays!

if I had the money, I would buy this mug because mugs are my thing but it reminds me of my dad telling me to, “Be a man” and now I have to every moment of my life!

Medical Supplies

So, I have needed to use do you use medical supplies for the past 19 years. Once I got my first and only, “Big Girl” job, my health insurance paid for it. Once I stopped working, I had full Medicaid benefits. Then, they stopped. I have only recently learned that my full Medicaid benefits stopped once my son turned 18. My Mom and I have been on the phone for hours and hours trying to figure this out to enable me to receive my needed medical supplies. My Mom has been serving as my proxy since we have been sheltered in place at my house.

I needed her to be my proxy especially today because it was raining and I was miserable! Because we leave my front door open for Leia to see out of, I was reminded of my final day working because I heard the water on the car tires swishing as they drove by. I remember that sound as my Mom drove me to what would be my final day working. I didn’t know that it was my final day working but I knew that my knee was in excruciating pain and I could not handle it! As my Mom turned the corner from my house, I began to cry.

I have dealt with the pain of having MS and being in the rain but with my torn meniscus not surgically repaired yet. it was too much! I silently let my tears stream down my face until I got closer to my work. I was going to have to, “Grab my guts” and just deal with it in front of my students. Well, how I felt that day is how I felt this morning as well.

Thank God that my Mom was speaking for me as we were transferred from extension to extension trying to get the proper person. We were on the phone for close to two hours and it did a number on me! I had no idea what a, “Spend down” was until today but, it’s NOT good!

I will have to pay for my daily needed medical supplies until my deductible is met. It will be many months until I do that and that stressed me out! So much so, I drank my breakfast today. But I say that I drank my breakfast, I mean that I had a protein shake; NOT that I got drunk! Drinking a protein shake is a lot easier for me then chewing when I feel so badly!

After we completed our routine today, The rain continued and I very much felt it in my body! I drank my lunch today as well. I feel just awful today! I scrolled through Facebook for a short time and saw this picture shared by my friend and fellow MS Warrior:

Today is the day I COMPLETELY feel like this! It didn’t help much that after all of the phone calls, I still needed to pay a lot of money considering being on disability, I only get a little bit of money each month, for sure! I think the rain just compounded my frustration but it can‘t rain every day and I am taking advice from Milli Vanilli right about now to get me through: