Earlier this week, my father passed away. I've been trying to prepare myself for his death for the past couple of years. But are we ever really prepared? He was 86 years old, diabetic, stubborn and was also recently diagnosed with cancer.
I use the term stubborn because even though his health has not been the best, he refused to listen to doctors, health-care providers and his children. He has been in and out of the hospital dozens of times, recently. Sometimes, he would refuse to stay in the hospital and would check himself out against doctor's orders. Other times, he would refuse to leave the hospital, when they said he was stable enough to go home or they recommended a skilled nursing environment.
He lived life on his own terms, despite the challenges that he faced. I can't be mad at him. It was his life to live however he saw fit. If you follow me on Facebook, you may have read some of the crazy stories that I've written about him over the past few years.
His friends called him Hollywood. Even though he was born a poor boy in Arkansas, and raised in St. Louis, Missouri, his personality was larger than life in any of those towns. He went on to make himself a success in the Hotel industry.
I am still in the midst of processing my feelings over his passing. I am trying my best to hold on to the good memories ...and there were many. I'm sure I will write more about him later.
Today, I thought I would share some thoughts from my son Blue about his feelings over his grandfather's passing. He wrote this as a Facebook status a few days ago. He is allowing me to share it again here. Let's go inside the mind of a pretty special teenager with Aspergers...
"My grandfather has passed away as of Tuesday morning. (January 19, 2016). For the past two days I've tried figuring out what I wanted to say and now I know what to say. I never formed a huge bond with him. I only saw him once every year. I could never feel as much pain as my mother or all of her siblings are feeling.
I last saw him this past summer and to be honest, it was probably one of the best times I had with him. I wish I could have talked to him one more time before he passed.
Although this tragic event has transpired, I was already experiencing stress for the past few weeks, with me getting back to school, starting Drivers Education, a scandal with one of my teachers, and me not getting along with my father. I changed my medication this past November and I have slowly been changing. I am more self-aware, more agitated and more stressed out. The good news is, I am also not gaining weight anymore.
With so many things transpiring one after another, I have fallen behind in my school work and I am less focused on my daily tasks. Now, my grandfather has passed. What am I gonna do?
Right now, one thing is important to me. Life has been shouting it in my head, I need to be a better and stronger person. I need to be smarter. I need to be a better friend to everyone, a more loving person, a more moral person. I need to work harder.
With everything going on I am becoming closer to everyone in my life, friends, family and even people at school. That's all I care about now, not thinking of myself as much but being there for everyone. I know that would make my grandfather proud. I will eventually get past all of this stress because every situation is temporary. I just want my family and friends to know that I love and care about all of you. You all mean a lot to me. For all of the bad things I have caused any single one of you, I am sorry for all of that. I will make it better from now on.
Thank every one of you for being in my life and I promise me being in y'alls life will definitely worth it."
This is dedicated to my father, Ward "Hollywood" Wesley.
April 22, 1929 - January 19, 2016
As my niece Erin G. Wesley said today, "Loving you eternally and hope you're causing pandemonium in the afterlife. Onward."
I use the term stubborn because even though his health has not been the best, he refused to listen to doctors, health-care providers and his children. He has been in and out of the hospital dozens of times, recently. Sometimes, he would refuse to stay in the hospital and would check himself out against doctor's orders. Other times, he would refuse to leave the hospital, when they said he was stable enough to go home or they recommended a skilled nursing environment.
He lived life on his own terms, despite the challenges that he faced. I can't be mad at him. It was his life to live however he saw fit. If you follow me on Facebook, you may have read some of the crazy stories that I've written about him over the past few years.
His friends called him Hollywood. Even though he was born a poor boy in Arkansas, and raised in St. Louis, Missouri, his personality was larger than life in any of those towns. He went on to make himself a success in the Hotel industry.
I am still in the midst of processing my feelings over his passing. I am trying my best to hold on to the good memories ...and there were many. I'm sure I will write more about him later.
Today, I thought I would share some thoughts from my son Blue about his feelings over his grandfather's passing. He wrote this as a Facebook status a few days ago. He is allowing me to share it again here. Let's go inside the mind of a pretty special teenager with Aspergers...
"My grandfather has passed away as of Tuesday morning. (January 19, 2016). For the past two days I've tried figuring out what I wanted to say and now I know what to say. I never formed a huge bond with him. I only saw him once every year. I could never feel as much pain as my mother or all of her siblings are feeling.
 |
| Blue & Grandfather, August, 2015 |
Although this tragic event has transpired, I was already experiencing stress for the past few weeks, with me getting back to school, starting Drivers Education, a scandal with one of my teachers, and me not getting along with my father. I changed my medication this past November and I have slowly been changing. I am more self-aware, more agitated and more stressed out. The good news is, I am also not gaining weight anymore.
With so many things transpiring one after another, I have fallen behind in my school work and I am less focused on my daily tasks. Now, my grandfather has passed. What am I gonna do?
Right now, one thing is important to me. Life has been shouting it in my head, I need to be a better and stronger person. I need to be smarter. I need to be a better friend to everyone, a more loving person, a more moral person. I need to work harder.
 |
| Blue & Grandfather, on a visit to his school for lunch. |
With everything going on I am becoming closer to everyone in my life, friends, family and even people at school. That's all I care about now, not thinking of myself as much but being there for everyone. I know that would make my grandfather proud. I will eventually get past all of this stress because every situation is temporary. I just want my family and friends to know that I love and care about all of you. You all mean a lot to me. For all of the bad things I have caused any single one of you, I am sorry for all of that. I will make it better from now on.
Thank every one of you for being in my life and I promise me being in y'alls life will definitely worth it."
This is dedicated to my father, Ward "Hollywood" Wesley.
April 22, 1929 - January 19, 2016
As my niece Erin G. Wesley said today, "Loving you eternally and hope you're causing pandemonium in the afterlife. Onward."
Logging you in...
Adelaide Dupont · 285 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 209 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
diyalabs6192603 11p · 192 weeks ago
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Spoil your cat · 122 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 112 weeks ago