Bringing the latest NF news to you on 02-06-2012


Team Carter NF YouTube Video
Check out this video featuring Carter, age 2, with NF1. It was done by his mother and featured many faces from our "Meet the Faces of NF" and other various photos from the NF community found on the CTF, Children's Tumor Foundation, bulletin board.



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Meet our current featured person: Mary Lee Starr /quieebaby





Today
Warm and fuzzy


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Featured Commentary
How are you?


"How are you today Sally?" That was how I greeted her early on before I really knew her. Sally was one of my original people chosen for me to visit when I started volunteering at the nursing home over fourteen years ago. As a young nursing mother with a baby in my arms, I couldn't fill water pitchers and the like so I asked if I could just visit and be an ear to a few folks. Sally was in her mid forties and was stricken with multiple sclerosis. She lived amongst people twice her age and she was a joy and a smile that whizzed down the hall in her motorized wheel chair.

Over the years, I watched her slowly decline and lose the little independence she had left but she never complained. Early on, I used to tease her about breaking speeding laws in her electric wheelchair! She would giggle and laugh. It took great effort, but she could still pull a cup with a straw to her mouth when she felt thirst. She lost her means of transportation like a champ - never a second of complaining. She lost the ability to feed herself. She lost her ability to swallow solid foods. She lost her ability to sit up. She was losing her ability to speak and confided in me that it would be a hard day when she could no longer talk. That was the closest thing to a complaint that I ever heard come from her lips. "How is it that you never complain Sally?" I would ask her. She said that her mother always taught her to accept her lot in life and she was obedient to that call.

She was the most patient person I ever met. She would have needs and just wait her turn where others would have screamed for assistance. One time in particular, she was in a lot of pain in her wheel chair. She wanted so bad for them to hoist her into bed. Others on her wing were not as patient and a few were screaming out over and over, so their needs were being met first while Sally just sat in pain. I teased her that she needed to get her own mantra to scream so she could go to bed. She thought that was so funny, but decided she would just sit patiently with her big smile.

One of Sally's pet peeves was when people would ask her how she was doing. She said it was pretty self explanatory how she was doing so they needn't ask! This was comical coming from the non-complaining woman! I vowed to never again ask her how she was doing. From that point on, I always greeted her with, "Hi Sally - glad to see you're having a miserable day!" She would break out in the biggest grin and wait to hear about my latest adventures so she could live vicariously for a moment.

Sally wasn't always a patient in a nursing home. She grew up just like any other kid. She had hopes and dreams. She went to college to become a teacher and realized that dream. She taught Kindergarten for a number of years before she started having health issues. Eventually, she had to quit her job. Her mother and father were faithful caregivers for a time, but eventually they moved into the local nursing home and so did Sally. They could be together there at least and would have round the clock care and this eased up things for everyone. Her father lived with Alzheimers and Sally's mother faithfully went from room to room tending to their needs. Eventually, Sally's father passed away and her mother went home the same year leaving Sally on her own.

In the years of living at the home, Sally and her parents made some good friends. Dick was not a resident at the home, but was there daily to care for his wife that also resided in the Alzheimer's unit. His wife passed away and he still came quite frequently to check on his friends. When Sally's father passed away and her mother was in poor health, Dick promised her mother that he would take care of Sally personally....and he did just that. This eighty year old man, with a full head of white hair, would don his helmet and buzz up the road on his motorcycle daily to see his Sally. No man ever found a more faithful friend.

Sally and Dick made memories together. Over the last many years, they became companions of a sort. Although they were many years apart in age, what started out as a promise on Dick's part, turned into one of the most loving and caring relationships that I have ever had the privilege of witnessing. Dick was a tiny little man with a white buzz cut. He talked a mile a minute which was perfect since it was becoming increasingly harder for Sally to speak. He would ask her a question and then answer it for her! He would show up in time to pull the blinds down for Sally so the sun wasn't in her eyes. He would prop up her pillows just right so the pain wasn't so bad for her. He would read Sally her mail and tend to all the little things in life that the nurses didn't have time to do. They were making memories.

Dick even helped Sally brush her teeth. One time I showed up for a visit and Dick was already there getting Sally ready for bed. Dick held Sally's little kidney shaped spittoon below her mouth in between brushing her teeth with the electric brush. Sally couldn't do much at this point, but the gal still had throat muscles. She would save up the saliva and toothpaste bubbles in her mouth. Dick would tell her to spit and she would shake her head no. He would brush some more and again coax her to spit some out. Sally wasn't born yesterday. Her purpose was soon to become clear. She worked at angling herself just the right way and then she gave it all she had - BAM...right in his face! She nailed him! Oh he put up a fuss which was soon followed by countless giggles as Sally laughed herself silly. Honestly, it was one of the funniest things I have ever seen.

Dick stole her pepperoni! When Sally could still eat solid foods, one thing she longed for was Domino's pepperoni pizza. Of course, they never served that at the nursing home. I took a pizza to her one night and our whole family went along to celebrate. Dick was there and helped to feed her. He would give her a bite of pizza and she would lose part of it down the front of her and it would land on her adult bib. Much to her dismay, she lost the pepperoni. Dick picked it up and her mouth wandered open waiting for him to place it in her mouth so she could enjoy the long awaited pepperoni, but alas....Dick ate it himself! The look on her face was priceless and we all had a good laugh....more memories.

Sally's light in her life was starting to flicker out. Dick's health eventually declined. He had a heart attack and it became increasingly hard for him to visit. Sally and Dick passed away just a few months apart. As I think back over the memories we have shared, I feel blessed. I wish I could be with her for just one moment to ask her how she is today. I have the feeling she would no longer mind me asking.

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