What my nightmares are made of…

This week’s Finish The Sentence Friday prompt is: “I’m really afraid that/of…”

If you have been around here for any length of time, you know all too well what my nightmares are made of.

Dying, of course. I am sure that most people could say that they are afraid of dying, but when you have a child with autism, fearing your own death takes a whole new turn.

When DC was young, my greatest fear, being a single mother (and before that, having a husband that worked nights) was something happening to me and worrying about just how long it would be before someone/anyone realized that DC was alone.

And then he grew up….

As I have written about this subject many times, I am just going to give you excerpts of some of the previous posts that were written about this subject.. He is 26 (almost 27) now.

*****

DC is 24 years old. He is a happy guy.  He has a good life. He is the joy of my life. But even with all that he has accomplished the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings. Even though his father and I have taken steps to be sure he is provided for, and have designated guardians in the event that anything should happen to both of us, those people are all my age or close to it. He will long out live all of us and realistically I should be looking at people his age, but I really do not have any options in that age group – again, he doesn’t have brothers or sisters. He will probably have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers. This is devastating to me. It is what keeps me awake at night.  It breaks my heart already.

He deserves to live the rest his life just as happily as he lives now; and that is the one thing I cannot promise him.

From: Insert Colorful Metaphor

*****

When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, it becomes a whole different ball game.

Our “kids” are going to outlive us, people. Who’s going to take care of them? Will they be cared for in the same fashion that we have cared for them?  How drastically will their life change then? Think about it.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?

From: Dear Abby; Feeling Chastised in New England

*****

If this is not enough to worry about, there is the other issue of him really not understanding death:

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On the way home from my mother’s house the night my step-father passed away, I mentioned to Doug that I still was not really sure that DC understands what death means and how much I really want him to understand it.

Doug asked me why it is so important to me that DC understands. Why couldn’t I just let him believe what he believes, the way he believes it and leave it at that?

I understand that thought process. I understand wanting to protect him from anything bad or sad, I do. So why is it so important to me that he does understand?

“Because one day I am going to die and I want him to understand that it is not something one wants to do.  I never want him to think that it was my choice. I NEVER want him to think that I just left him.”

  From: Understanding Death it not like a Disney Movie

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This has been a Finish the Sentence Friday Post. This week’s prompt: “I’m really afraid that/of…”

Finish The Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular prompt (different formats each week of the month). Please visit Kristi or Kenya to read more submissions on “I’m really afraid that/of…”

2016 Top 5, #2 – Understanding Death Is Not Like a Disney Movie

My second most popular post in 2016 about understanding death and dying. Not an easy concept for DC to grasp.

Understanding Death Is Not Like a Disney Movie 

My step father passed away this week. DC adored his Grandpa and the feeling was quite mutual. When I had to look for a few old photos for the service, there were two that I was determined to find. The first was of DC on a bike with his Grandpa running along side him, holding him up.

IMG_4258

The other was from my brother’s wedding when DC was about 5 or 6. The photo was from the hotel room before the wedding. I was standing off to the side and there was DC and his Grandpa, in their tuxedos standing in front of the mirror, arms out to the side as if they were saying “Taa Daa! Look at us”.  As I searched and searched for this photo I remembered standing there watching this moment between them in front of the mirror and thinking I was about to take THE cutest photograph that had ever been taken, when my mother walked right through the shot. I had missed the moment with the camera. I realized that this photo that I had been searching for existed only in my head. All these years later, it is still right there in my head as if it was yesterday; as if I had actually taken the picture.

I was not sure how to explain his Grandpa’s passing to him. He has never lost anyone close to him before. I was not sure that he would understand. I have tried many times and in many different ways to explain this to him in the past, when people we knew had passed on,  but I was never sure that he really understood.

In his Disney movies, characters may die but usually someone comes along to give them a kiss to wake them up. (I truly believe that this was part of the reason that DC insisted on kissing him on the forehead more than once at both the wake and the funeral a few days later). As many times as I have tried, I have never come up with a good, understandable way to explain this to him.

That afternoon when he came home from work I made the attempt to tell him what had happened before we left to go to my mother’s house. I told him that Grandpa had been very sick and he was very old (I added that so I would not frighten him into thinking that if he got sick, the same thing would happen to him) and because he was just so sick, he died. I specifically did not use the phrase “passed away” so as not to confuse him with different words.

“Do you understand what that means, DC?”
“Yes”

“Grandpa loved you very much and he did not want to leave you. It was not his fault”

“Yes”

“This is not like your movies. He will not be able to come back, like Snow White. He died like Cinderella’s father. Do you remember that Cinderella’s father did not come back after he died? I am sure he wanted to come back but he couldn’t.”

“Yes”

His Grandpa had been suffering from dementia for the last few years and was well past the point of recognizing anyone, so DC really had not seen him in quite awhile. He would ask for him every once in a while when we went to my mother’s and Grandpa was not sitting in his chair. We explained to him that Grandpa was sick and was in his room at his new home where there were lots of people who could take care of him. I am not sure that he ever really understood that and I sometimes got the impression that DC just thought that Grandpa was upstairs taking a nap.

Both DC and I had birthdays in March. We had planned more than once to get together with my mother but she was sick herself for a good few weeks and did not want to infect DC or I with whatever she had. When we arrived at her house that night she brought out the gifts that she had been holding on to. DC opened his card and as he always does, read the card in it’s entirety out loud. Then he reached the signature and read: “Love, Hugs and Kisses, Grandma and Grandpa”.

He stopped and he looked at me. I could see he was a bit confused.  Then he said “Grandpa ‘is’ died”.

Honestly, I did not expect that. He really had been listening, paying attention and possibly understanding a little bit of what I had explained to him earlier. I told him that Grandpa wrote the card on DC’s birthday a few weeks back and that he was very lucky to have this card that Grandpa wrote for him before he died.

IMG_0794

(Of course, Grandpa was too sick to really sign the card, but DC really did not need to know that)

This seemed to make sense to him and he no longer looked so confused.

On the way home that night, I mentioned to Doug how I still was not really sure that DC understands what death means and how much I really want him to understand it.

Doug asked me why it is so important to me that DC understands. Why couldn’t  I just let him believe what he believes, the way he believes it and leave it at that?

I understand that thought process. I understand wanting to protect him from anything bad or sad, I do. So why is it so important to me that he does understand?

“Because one day I am going to die and I want him to understand that it is not something one wants to do.  I never want him to think that it was my choice. I NEVER want him to think that I just left him.”

 

 

 

 

 

 

Understanding Death Is Not Like a Disney Movie

My step father passed away this week. DC adored his Grandpa and the feeling was quite mutual. When I had to look for a few old photos for the service, there were two that I was determined to find. The first was of DC on a bike with his Grandpa running along side him, holding him up.

IMG_4258

The other was from my brother’s wedding when DC was about 5 or 6. The photo was from the hotel room before the wedding. I was standing off to the side and there was DC and his Grandpa, in their tuxedos standing in front of the mirror, arms out to the side as if they were saying “Taa Daa! Look at us”.  As I searched and searched for this photo I remembered standing there watching this moment between them in front of the mirror and thinking I was about to take THE cutest photograph that had ever been taken, when my mother walked right through the shot. I had missed the moment with the camera. I realized that this photo that I had been searching for existed only in my head. All these years later, it is still right there in my head as if it was yesterday; as if I had actually taken the picture.

I was not sure how to explain his Grandpa’s passing to him. He has never lost anyone close to him before. I was not sure that he would understand. I have tried many times and in many different ways to explain this to him in the past, when people we knew had passed on,  but I was never sure that he really understood.

In his Disney movies, characters may die but usually someone comes along to give them a kiss to wake them up. (I truly believe that this was part of the reason that DC insisted on kissing him on the forehead more than once at both the wake and the funeral a few days later). As many times as I have tried, I have never come up with a good, understandable way to explain this to him.

That afternoon when he came home from work I made the attempt to tell him what had happened before we left to go to my mother’s house. I told him that Grandpa had been very sick and he was very old (I added that so I would not frighten him into thinking that if he got sick, the same thing would happen to him) and because he was just so sick, he died. I specifically did not use the phrase “passed away” so as not to confuse him with different words.

“Do you understand what that means, DC?”
“Yes”

“Grandpa loved you very much and he did not want to leave you. It was not his fault”

“Yes”

“This is not like your movies. He will not be able to come back, like Snow White. He died like Cinderella’s father. Do you remember that Cinderella’s father did not come back after he died? I am sure he wanted to come back but he couldn’t.”

“Yes”

His Grandpa had been suffering from dementia for the last few years and was well past the point of recognizing anyone, so DC really had not seen him in quite awhile. He would ask for him every once in a while when we went to my mother’s and Grandpa was not sitting in his chair. We explained to him that Grandpa was sick and was in his room at his new home where there were lots of people who could take care of him. I am not sure that he ever really understood that and I sometimes got the impression that DC just thought that Grandpa was upstairs taking a nap.

Both DC and I had birthdays in March. We had planned more than once to get together with my mother but she was sick herself for a good few weeks and did not want to infect DC or I with whatever she had. When we arrived at her house that night she brought out the gifts that she had been holding on to. DC opened his card and as he always does, read the card in it’s entirety out loud. Then he reached the signature and read: “Love, Hugs and Kisses, Grandma and Grandpa”.

He stopped and he looked at me. I could see he was a bit confused.  Then he said “Grandpa ‘is’ died”.

Honestly, I did not expect that. He really had been listening, paying attention and possibly understanding a little bit of what I had explained to him earlier. I told him that Grandpa wrote the card on DC’s birthday a few weeks back and that he was very lucky to have this card that Grandpa wrote for him before he died.

IMG_0794

(Of course, Grandpa was too sick to really sign the card, but DC really did not need to know that)

This seemed to make sense to him and he no longer looked so confused.

On the way home that night, I mentioned to Doug how I still was not really sure that DC understands what death means and how much I really want him to understand it.

Doug asked me why it is so important to me that DC understands. Why couldn’t  I just let him believe what he believes, the way he believes it and leave it at that?

I understand that thought process. I understand wanting to protect him from anything bad or sad, I do. So why is it so important to me that he does understand?

“Because one day I am going to die and I want him to understand that it is not something one wants to do.  I never want him to think that it was my choice. I NEVER want him to think that I just left him.”