I took my brother who is developmentally delayed, legally blind, autistic, profoundly deaf and schizophrenic to visit our mom for the last time before she passes away. I was worried about how it would go. We walked into her room and she lay in bed. She seemed to perk up a little when she was told Curtis, her beloved son, was there to visit with her. She didn’t perk up enough to open her eyes, but she did start to talk, albeit mostly nonsense. Curtis held her hand and rubbed her back. He was talking to her, and because he could not hear, he did not realize that she was not really talking to him. He was talking about himself, of course. Was there a restaurant around the nursing home where I could take him to eat? Did they have pie? He then went and got her a soda from the soda machine and opened it for her. Soda is Curtis’ most prized item. He gave it to her, saying he wanted to do his best to make her last days better. He then told her she was lucky because she had the pleasure of his visit because he was good company and he rubbed her back. After an hour or so, I had him say good bye. Not being a demonstrative person, he did not know how to hug. I felt it was important for him to hug her and kiss her good bye, so I helped position him so they could hug. It would have been laughable under any other circumstances. He was stiff like a robot and clearly was not comfortable showing affection. So he took her hand and shook it, and said “It has been nice to know you. Let me know when your funeral is because I might want to attend!”
On the way home, Curtis was quiet for a while. He said “Something has been missing all week and I didn’t know what it was. Now I do. I was afraid I would miss saying good- bye to my mother. Today I was able to give her a soda and rub her back,” (2 things she had always done for him when he was sick.) “I feel better now.” This was such a profound statement coming from someone who usually did not think rationally. Of course, true to his character, he asked to stop for pie.
Raising 5 Kids With Disabilities and Remaining Sane Blog 
Comments on: "My Brother Says Goodbye…" (6)
Hi – you have such a beautiful way of writing about very profound experiences. I’m going to add you to my blogroll. Very best wishes, Deborah.
absolutely a beautiful post!
As I sit and read your blog I couldn’t help but recall my last night with my brother before his death 14 years ago. Feeling his wrist as his pulse faded away is as vivid as if it happened yesterday. Reading your passage shows me the tremendous impact that living with a disabled sibling has on ones life. For sure you are a changed and strong human being. A curse and pitty to some but for those of us that have experienced this first hand is truly a blessing and richness beyond all measures. maryanne s.
I love your stories. I look forward to reading them everyday. As a special education teacher, I have always enjoyed those “different” times; the unexpected comment; the hug; the thank you…or just spending time with the kids; watching them explore or the light bulb going off as they learned something new.
You make me laugh and cry with your stories. You are a remarkable person and a beautiful mom!
A beautiful and very sweet story.
What a blessing that last visit was to both of them! A beautiful moment that you helped create for them both……