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The memorial service was yesterday


KungFuPanda
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I'm glad that the day went well and was a good reminder to you that he touched many lives and you are loved and supported.

Floating is the only thing you need to do right now. Your whole existence has been blasted apart and it will take a long while before your parts and pieces come back together into some semblance of a new "normal".

Big, big hugs. 

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4 hours ago, Ottakee said:

Glad you had all of that support for you and your family.

The pizza idea was great.

Thank you. The service was on his birthday and the catering reflected what we normally served. I think we did the “tailgate menu” then added pizza to it. Birthdays were always pizza and chicken. I didn’t have it in me to make The Cannoli Cake so we just went with the sweets provided. But yeah, I underestimated the headcount by a good 40% and our pizza place knows us and were happy to help out with a quick order and delivery. 
 

The service had rows of chairs in the center and round tables on the perimeter for overflow seating and dining. We chose to personalize these tables ourselves rather than have them do it. I put mementos that belonged to my son and photo prints of some of his artwork in every table with instructions to please take something home. Everything was taken and that feels special.

it was a difficult day for my grandson because he was just overwhelmed by everyone looking at him. It was really hard to see DS’s friends break down; especially his friend that was his age with his exact diagnosis. We almost cloistered ourselves and didn’t do the big formal goodbye, but I’m so glad we all had that day together. 
 

My mom just pulled away and now it’s just Dh and me. I have no idea what’s next. I think I need to find a different job. Part time work no longer makes sense for me. I think I can save rattling around the house for when I’m much older and my current job is dead end. 

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There is all this TIME now. It’s weird. I don’t know what people do. For normal people, the active mothering winds down gradually, but I never had that. DS’s physical care took time. Getting ready for the day and getting out the door took hours. We hung out together most days, shared most meals and enjoyed the same shows. We had cooking days because he liked to cook have his favorite meals prepped for the two days I worked. We planned field trips with friends and he had tea three times daily. My world absolutely revolved around making sure he was cared for and had things to took forward too. He was good company and I MISS him so much. 

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23 minutes ago, KungFuPanda said:

There is all this TIME now. It’s weird. I don’t know what people do. For normal people, the active mothering winds down gradually, but I never had that. DS’s physical care took time. Getting ready for the day and getting out the door took hours. We hung out together most days, shared most meals and enjoyed the same shows. We had cooking days because he liked to cook have his favorite meals prepped for the two days I worked. We planned field trips with friends and he had tea three times daily. My world absolutely revolved around making sure he was cared for and had things to took forward too. He was good company and I MISS him so much. 

It's so hard.  I am so sorry.  

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1 hour ago, KungFuPanda said:

There is all this TIME now. It’s weird. I don’t know what people do. For normal people, the active mothering winds down gradually, but I never had that. DS’s physical care took time. Getting ready for the day and getting out the door took hours. We hung out together most days, shared most meals and enjoyed the same shows. We had cooking days because he liked to cook have his favorite meals prepped for the two days I worked. We planned field trips with friends and he had tea three times daily. My world absolutely revolved around making sure he was cared for and had things to took forward too. He was good company and I MISS him so much. 

My neighbors lost their special needs adult daughter almost one year ago and the mom expresses this a lot.  She truly devoted 24/7 to her daughter for so many years and she doesn't know what to do with herself now that she's gone.  She knew that others thought of her daughter as a burden but she didn't at all - she truly loved caring for her and misses it terribly.  There's just such a big hole in her life now.  Big hugs to you.  

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31 minutes ago, Kassia said:

My neighbors lost their special needs adult daughter almost one year ago and the mom expresses this a lot.  She truly devoted 24/7 to her daughter for so many years and she doesn't know what to do with herself now that she's gone.  She knew that others thought of her daughter as a burden but she didn't at all - she truly loved caring for her and misses it terribly.  There's just such a big hole in her life now.  Big hugs to you.  

Yes. Caring for him wasn’t really that difficult; it just took us longer to do everything that other people can do in minutes. He was still able to do a lot for himself and we worked the time that took into our lives. He had his mind and could communicate; he just needed a lot of physical assistance. 
 

He WAS my schedule. He cared about order and routine and provided the structure to my whole day. I would start my morning with his tea and breakfast. I knew he could spend almost an hour in the bathroom in the morning, so I would do some meal prep while listening for him.  I cleaned the kitchen while he got dressed. We’d have our lunch around one then either hang out at home or do some errands or appointments until teatime at around 5. After dinner he’d be tired and ready to transfer to his bed for a few hours of tv/gaming where he sometimes invited us to watch a movie but usually kicked me out so he could have some alone time. He always had either hot chocolate or herbal tea before going to sleep. 
 

Now I’m untethered and getting caffeine headaches because I’m forgetting to make my afternoon cup without his prompting. I’m not automatically making lunch or dinner because nobody needs me to do that for them. We’re showing up at a destination within ten minutes of deciding to go there and it’s just not normal. Everything is still so weird and it’s been two months of this. 
 

Thank you everyone for understanding and letting me ramble. 

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Thank you for sharing him with us.  It sounds like you had a beautiful and special relationship.  Sending hugs as you grieve and find your new path.   Please continue to share here as you are willing and able.  ❤️  I'm glad your community came out in force.

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I’m so sorry, KFP. Your relationship sounds beautiful and I’m sure you do feel unmoored. I’m so glad you feel well-supported and your hs community really rallied around you. 
 

It’s okay to float, even if floating takes longer than some people think it “should”. 

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