It's been three months since I've written on this blog. One of the reasons for the gap is the passing of my father, who was 93. Just over 2 years ago, my dad suffered a head injury at a restaurant while out for a pleasant lunch with my mom. He had missed a step in the dark, and ended up in the hospital, but was quickly released when nothing showed on his CAT scan. Then two weeks later, he fell backward on his head, while at home. There was no apparent reason for the fall this time. This was followed by 3 months in a rehabilitation center.
When he was released and sent home, my mom expected my dad to bounce back to himself. Unfortunately, this was not going to happen. Instead it was the beginning of a quickly spiraling downhill fall in to dementia. He lost speech, partly because of his inability to hear. I managed to get him to the VA to be fitted for hearing aides, but once he had them, he was too stubborn to use them or unable to navigate their use. There was something changing rapidly in his brain. What ever the cause for the change, it was inevitably clear to me that my dad was already gone. He was slowly being taken away from those who loved him as if walking backwards away from us until he just disappeared.
As sad and tragic as this was, it meant two things for Marisa. She was starting to show genuine feelings of loss even in the early stages of my dad's decline. Even with her own disability, she was able to recognize that grandpa wasn't the same. Grandpa was here, but he wasn't here as the person she remembered as she was growing up. My father slowly forgot who she and my other daughters were, long before he forgot who I was. He didn't remember that I had 4 daughters and then he didn't remember I was his daughter. He just seemed to know I was the nice lady who came to help his wife, and that the younger girls were just pretty girls visiting.
Then when he passed away on April 6, I wondered how to deal with the funeral. I didn't know if Marisa would be able to handle attending such a solemn event. I didn't want Marisa to attend. I thought it would haunt her. I thought she might laugh inappropriately. I was worried she would distract me away from the attention I needed to give to thoughts of my dad at the funeral. My husband felt it was wrong for her not to attend, and after some serious thought, I realized he was right. Then I agreed to have her there. So she attended the funeral, and she went to the cemetery as well. Marisa conducted herself in a mature manner, showing respect for the seriousness of the occasion. I was proud of her and was happy that she was there.
In the days that followed Marisa's thoughts were her own. Then one day she started to express those thoughts, usually while riding to some destination in the car.
"I miss grandpa!"
"We all do," I answered, and I would try to explain that he lived a long, full, rich and accomplished life. He ran his own business in advertising for over 50 years. He was also an accomplished artist expressing himself through watercolor, oil paint, acrylic and stained glass. He also built furniture and had a fascination with clocks that lead him to build his own grandfather clock. He was fully active and artistically engaged till he was 91.
"Grandpa was not happy after his accident. He could no longer do the things he enjoyed in life. When that happened to him, he didn't want to be here anymore. Life was no longer worth living."
If Marisa understood my meaning about the quality of ones life, it didn't take away the sting of death.
"I don't want to die," she answered.
"You're young and healthy and full of life with so much to do ahead of you," I offered encouragingly.
And I once again reminded her that grandpa lived a very full life.
Marisa still continues to mention how much she misses grandpa. It's made me realize that even though autism has made it difficult for Marisa to think about the needs of others, she has found room in her heart to express sadness and compassion for the loss of a family member.
But what struck me most of all was a comment she made to me on one of our car rides.
"I want to live to be over 100," she said.
That comment did not surprise me. We all have the same thought. What did surprise me was her comment just after that:
"I want you, daddy, Shoshana and Deborah to live to be over 100 with me."
We are the people most important to her after all. I always thought she would hardly blink if something happened to my husband or myself. Just knowing that we are so cared for by her makes me realize her love for us is as real as any, even when it doesn't always show. That realization brought joy to my own heart, taking away any doubts I ever had about what I mean to my daughter on the autism spectrum.
When he was released and sent home, my mom expected my dad to bounce back to himself. Unfortunately, this was not going to happen. Instead it was the beginning of a quickly spiraling downhill fall in to dementia. He lost speech, partly because of his inability to hear. I managed to get him to the VA to be fitted for hearing aides, but once he had them, he was too stubborn to use them or unable to navigate their use. There was something changing rapidly in his brain. What ever the cause for the change, it was inevitably clear to me that my dad was already gone. He was slowly being taken away from those who loved him as if walking backwards away from us until he just disappeared.
As sad and tragic as this was, it meant two things for Marisa. She was starting to show genuine feelings of loss even in the early stages of my dad's decline. Even with her own disability, she was able to recognize that grandpa wasn't the same. Grandpa was here, but he wasn't here as the person she remembered as she was growing up. My father slowly forgot who she and my other daughters were, long before he forgot who I was. He didn't remember that I had 4 daughters and then he didn't remember I was his daughter. He just seemed to know I was the nice lady who came to help his wife, and that the younger girls were just pretty girls visiting.
Then when he passed away on April 6, I wondered how to deal with the funeral. I didn't know if Marisa would be able to handle attending such a solemn event. I didn't want Marisa to attend. I thought it would haunt her. I thought she might laugh inappropriately. I was worried she would distract me away from the attention I needed to give to thoughts of my dad at the funeral. My husband felt it was wrong for her not to attend, and after some serious thought, I realized he was right. Then I agreed to have her there. So she attended the funeral, and she went to the cemetery as well. Marisa conducted herself in a mature manner, showing respect for the seriousness of the occasion. I was proud of her and was happy that she was there.
In the days that followed Marisa's thoughts were her own. Then one day she started to express those thoughts, usually while riding to some destination in the car.
"I miss grandpa!"
"We all do," I answered, and I would try to explain that he lived a long, full, rich and accomplished life. He ran his own business in advertising for over 50 years. He was also an accomplished artist expressing himself through watercolor, oil paint, acrylic and stained glass. He also built furniture and had a fascination with clocks that lead him to build his own grandfather clock. He was fully active and artistically engaged till he was 91.
"Grandpa was not happy after his accident. He could no longer do the things he enjoyed in life. When that happened to him, he didn't want to be here anymore. Life was no longer worth living."
If Marisa understood my meaning about the quality of ones life, it didn't take away the sting of death.
"I don't want to die," she answered.
"You're young and healthy and full of life with so much to do ahead of you," I offered encouragingly.
And I once again reminded her that grandpa lived a very full life.
Marisa still continues to mention how much she misses grandpa. It's made me realize that even though autism has made it difficult for Marisa to think about the needs of others, she has found room in her heart to express sadness and compassion for the loss of a family member.
But what struck me most of all was a comment she made to me on one of our car rides.
"I want to live to be over 100," she said.
That comment did not surprise me. We all have the same thought. What did surprise me was her comment just after that:
"I want you, daddy, Shoshana and Deborah to live to be over 100 with me."
We are the people most important to her after all. I always thought she would hardly blink if something happened to my husband or myself. Just knowing that we are so cared for by her makes me realize her love for us is as real as any, even when it doesn't always show. That realization brought joy to my own heart, taking away any doubts I ever had about what I mean to my daughter on the autism spectrum.
