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    #61
    Hi Rose,

    RE:
    Regarding my ex ~ My father said, "He may be smart, but he doesn't have any common sense."
    Same with a lot of my college professors LOL. Like once they were off campus most stuff was a mystery to them hahahaha...I love and thank you too. I just noticed you updated your signature below your posts and the update is very touching.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

    Comment


      #62
      Reality Settling In

      ((((((Hugs to All)))))) ~

      funnylegs4 ~

      Thank you for mentioning my new signature. I can't remember when I changed it, perhaps a week or so ago. I labored over it for awhile. I removed all of Jon's and Michael's medical issues to make more room. Changing my signature is just one of a million changes I'm experiencing. It all feels strange and surreal to me most of the time.

      When I first started walking around the neighborhood in 2006 and got my distance up to 3 miles in 30 minutes, I often walked downhill "into the woods". I don't live in a forest, of course, but we do have quite an abundance of trees, which is wonderful. I would zig zag through cul de sacs on the greenbelts behind homes. Some of the backyards were a bit smaller than other properties in the neighborhood, with lower backyard fences.

      I wasn't peeping, but I couldn't help noticing an elderly woman, with her patio drapes open, sitting at her kitchen counter, sipping tea or coffee and reading the newspaper. I thought about my elders, who were widowed. I prayed for her.

      One morning, she was watering plants in her darling backyard, as I walked by. I stopped to say "Good Morning! I love your yard. It is so sweet and well tended."

      We had a little chat, and she thanked me for stopping by, and I thanked her for the lovely visit. I didn't see her in her yard after that, but occasionally, she'd look up from her paper and see me and wave.

      Now, I am a widow. I am her.

      I've known several widows and widowers in my neighborhood over all these decades. Now, I'm one of them.

      Having spent 24 hours every day with Jim, Jon and Michael, it is just so strange to be alone. Not many folks can say that they spent that much time with their loved ones, and I give thanks for every second we had together.

      And, while I am terribly lonely for them, I am grateful that I am the last one standing. I remember every time Jim said to me, "I don't know what I'd do without you," "I'm so glad you are taking care of me," "I'm sorry that I can't help you" ...

      Naturally, it makes sense that I am the last one standing.

      This morning, John showed up, knocking on the front door. I had just finished cooking my breakfast. I saw his car parked in front and said, "I'm coming John."

      When I opened the door, he sighed, "Thank God, you are okay. I texted you yesterday, I just called you about 10 minutes ago, and I told my boss that I have to take lunch early to check on you."

      I told him that I heard the phone ring, but I was in the middle of making my egg white cheese omelet, and I couldn't leave it to answer the phone. I forgot to check my cell phone yesterday, and I need to make sure I check it constantly now, I know.

      He said breakfast smelled good, so I offered to share it with him. I know he loves potatoes, so I gave him a small plate, which he scarfed back. He smiled, "You know I didn't really care for those!"

      While he was here, he wanted to check the front sprinkler. We walked into the garage, looking for the sprinkler head he brought over a few weeks ago. He got to the front of the garage, reached in and pulled it out of one of Jim's tool boxes.

      "What are the odds of that happening?" He laughed.

      "In this garage, after this chaos? Zero!"

      He installed the new head, then he manually turned on the sprinklers. It worked, but he had to turn it a couple of times to get it hit the lawn.

      It was 99 degrees here today, with a heat index of 105, so tomorrow morning, I hope the lawn will be well watered, thanks to John.

      The bath mats and towels were delivered today. The mats are okay, especially since they don't cover the floor too much. I think the coral towels may be too light. I haven't brought them up to check yet.

      John will stop by on Thursday afternoon for a visit. He and his entire family, all 10 of them, will be taking a 4 day vacation together, as they do every year. They have been isolating from everyone, except for those of them who are essential workers, except when they get together as a family for a weekend dinner.

      He's going to worry about me, so I will promise to text or call him morning and evening.

      I just praise God every day and night for John and his family. John promised me years ago that he would be here for me every day in every way. Early on after Jim's diagnosis, John was frank with me that he didn't think Jim would last 6 months. So, he wanted to assure me that he'd be here for me and Jonathan.

      Then, Jim defied the odds against him and lived for 3 1/2 years. It wasn't easy, by any stretch of the imagination, but he lived it as fully as possible, and he loved everyone on his journey.

      As I reflect now, I hope the sweet lady with the lovely garden had someone like John to care for her. I am so blessed.

      Thank you all for your love, prayers, support, and compassion. You are a blessing. I love you and pray for you and your loved ones.

      Send prayers around the world for peace and justice for all ~

      Love & Light,



      Rose

      *Virtual Hugs Are Germ-Free!
      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        #63
        Originally posted by Earth Mother 2 Angels View Post
        ((((((Hugs to All)))))) ~

        funnylegs4 ~

        Thank you for mentioning my new signature. I can't remember when I changed it, perhaps a week or so ago. I labored over it for awhile. I removed all of Jon's and Michael's medical issues to make more room. Changing my signature is just one of a million changes I'm experiencing. It all feels strange and surreal to me most of the time.

        When I first started walking around the neighborhood in 2006 and got my distance up to 3 miles in 30 minutes, I often walked downhill "into the woods". I don't live in a forest, of course, but we do have quite an abundance of trees, which is wonderful. I would zig zag through cul de sacs on the greenbelts behind homes. Some of the backyards were a bit smaller than other properties in the neighborhood, with lower backyard fences.

        I wasn't peeping, but I couldn't help noticing an elderly woman, with her patio drapes open, sitting at her kitchen counter, sipping tea or coffee and reading the newspaper. I thought about my elders, who were widowed. I prayed for her.

        One morning, she was watering plants in her darling backyard, as I walked by. I stopped to say "Good Morning! I love your yard. It is so sweet and well tended."

        We had a little chat, and she thanked me for stopping by, and I thanked her for the lovely visit. I didn't see her in her yard after that, but occasionally, she'd look up from her paper and see me and wave.

        Now, I am a widow. I am her.

        I've known several widows and widowers in my neighborhood over all these decades. Now, I'm one of them.

        Having spent 24 hours every day with Jim, Jon and Michael, it is just so strange to be alone. Not many folks can say that they spent that much time with their loved ones, and I give thanks for every second we had together.

        And, while I am terribly lonely for them, I am grateful that I am the last one standing. I remember every time Jim said to me, "I don't know what I'd do without you," "I'm so glad you are taking care of me," "I'm sorry that I can't help you" ...

        Naturally, it makes sense that I am the last one standing.

        This morning, John showed up, knocking on the front door. I had just finished cooking my breakfast. I saw his car parked in front and said, "I'm coming John."

        When I opened the door, he sighed, "Thank God, you are okay. I texted you yesterday, I just called you about 10 minutes ago, and I told my boss that I have to take lunch early to check on you."

        I told him that I heard the phone ring, but I was in the middle of making my egg white cheese omelet, and I couldn't leave it to answer the phone. I forgot to check my cell phone yesterday, and I need to make sure I check it constantly now, I know.

        He said breakfast smelled good, so I offered to share it with him. I know he loves potatoes, so I gave him a small plate, which he scarfed back. He smiled, "You know I didn't really care for those!"

        While he was here, he wanted to check the front sprinkler. We walked into the garage, looking for the sprinkler head he brought over a few weeks ago. He got to the front of the garage, reached in and pulled it out of one of Jim's tool boxes.

        "What are the odds of that happening?" He laughed.

        "In this garage, after this chaos? Zero!"

        He installed the new head, then he manually turned on the sprinklers. It worked, but he had to turn it a couple of times to get it hit the lawn.

        It was 99 degrees here today, with a heat index of 105, so tomorrow morning, I hope the lawn will be well watered, thanks to John.

        The bath mats and towels were delivered today. The mats are okay, especially since they don't cover the floor too much. I think the coral towels may be too light. I haven't brought them up to check yet.

        John will stop by on Thursday afternoon for a visit. He and his entire family, all 10 of them, will be taking a 4 day vacation together, as they do every year. They have been isolating from everyone, except for those of them who are essential workers, except when they get together as a family for a weekend dinner.

        He's going to worry about me, so I will promise to text or call him morning and evening.

        I just praise God every day and night for John and his family. John promised me years ago that he would be here for me every day in every way. Early on after Jim's diagnosis, John was frank with me that he didn't think Jim would last 6 months. So, he wanted to assure me that he'd be here for me and Jonathan.

        Then, Jim defied the odds against him and lived for 3 1/2 years. It wasn't easy, by any stretch of the imagination, but he lived it as fully as possible, and he loved everyone on his journey.

        As I reflect now, I hope the sweet lady with the lovely garden had someone like John to care for her. I am so blessed.

        Thank you all for your love, prayers, support, and compassion. You are a blessing. I love you and pray for you and your loved ones.

        Send prayers around the world for peace and justice for all ~

        Love & Light,



        Rose

        *Virtual Hugs Are Germ-Free!
        You're very welcome Rose! I'm so sorry I didn't notice the signature change sooner. I would suggest you answer your phone to allay people's fears when you can. Since COVID19 is still going on when I don't reply people panic. I'm so glad John is helping you. Jim was alive for 3 and 1/2 years because of you. :) Prayers to you too.
        Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
        My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

        Comment


          #64
          About Reality Rose:

          When my husband passed away I was busy, busy taking care of business such as insurance companies, getting cars changed over to my name, going to courthouse to have his will filed. Talking my way out of probating it, since I was the only heir, getting ready to go to Georgia due to brother-in-laws impending death, writing thank you notes, making trip to Ft. Bragg to get ID card changed to widow and on and on. I thought every thing had to be taken care of right now.

          One evening my youngest brother called to ask how I was doing. I remember telling him that I was just so busy. He responded that it was when that business stopped that he worried. He was right, so be careful when things begin to slow down. I know you have a lot to do, but it will get done. It was after the business that reality really set in for me. I would clean my house, take care of my dog and things like that, but I didn't really HAVE to do anything. I felt like my purpose was gone. Thankfully, I was able to go out and get a job. So, I opted for what was to be a part time job, but it quickly grew into full time. That was not all good, but thinking back on it in hindsight it was the better of the things I could have chosen.

          I am glad John and his family are going to get a vacation, but I feel better about you when he is around. However, since you are going to be reporting in to him every day that is a big help.
          Virginia

          Comment


            #65
            More Peace

            ((((((Hugs to All)))))) ~

            funnylegs4 ~

            Thank you so much for your prayers.

            We get many scam callers, which is why I turn off the ringers. For so many years, I was always busy, and I couldn't drop what I was doing to answer the phone. When I know someone is calling, like during this restoration saga, the ringers are turned on. Also, I turned off the ringers, so they wouldn't disturb Jon or Jim, if they were sleeping.

            Since we have an answering machine, I expect people, who really want to speak to me, to leave a message, and then I call them back, when I'm not cooking or cleaning or in the garage or backyard or the new shower.

            Today, in my cleaning process, I removed all of the stuff on the dining room table, including Jonathan's (and then Jim's) chart from 2019. I sat down and flipped through the pages, reading and remembering everything that happened. It was heartbreaking. They both suffered so very much during this time. Jim had a continuing fever every day for weeks, then he went on O2 for a few months, then amazingly, he came off of O2, until the last two days of his life.

            Such an arduous journey, which they both traveled bravely and cheerfully. How I miss them! So very, very much.

            Virginia ~

            Thank you so much for sharing your experience after your husband passed. I understand completely what you've described, and I know that feeling of not knowing what do to with yourself after losing a loved one. I felt that way when Michael passed, even though I had Jonathan to care for and Jim was still well and fit. I had given Michael so much attention, that my hands felt empty. Then Jon's health deteriorated in 14 months, and I was caring for him full time. Then, Jim.

            I am going to be busy for a very long time. This saga isn't over yet. I still have to get the master closet clothes rod repaired, and then all of the clothes and other things in boxes in the bedroom have to be put in the closet, much of which I need to wash or give away. There are 12 giant bags of laundry (at least 2 loads per bag) and two huge buckets of laundry in the garage. I fear that my washer and dryer will not hold up through all of that laundry, if I'm ever able to attack all of it.

            There are several legal matters to take care of, and the taxes. Those are more immediate than anything else, of course. I've already started on one of the projects this week.

            Then, there is the mold under the kitchen sink and finishing the kitchen to be done. Tree trimming, new gutters, painting the outside, concrete for the backyard. It's a never-ending list.

            If I live long enough to take care of all of these things, then I will be grateful to have nothing to do thereafter. If I were younger, I'd probably feel differently. But I am an old, bent and weary gal. I look forward to being reunited with Jim, Jonathan and Michael. We all put in our time here on Earth, so Bliss is a wonderful reward. Not that I'm in a hurry.

            JOHN'S VISIT

            I had a list of "to do and discuss" for John, and he cheerfully did the majority of them. The other discussion items can wait until he returns from his brief vacation.

            Checked the air in the van tires and inflated the two front slightly. Checked the windshield, and yes, there is a small crack there, which I noticed yesterday. He and his wife have had cracks in their windshields, so he referred me to a local same day service for repair. He told me to keep an eye on it, and if it begins to expand to call for repair.

            Shout out to Moderator #5, who PM'd me a solution to my printer problem. John pulled out Jim's desk to access the plugs, unplugged, waited a couple of minutes, re-plugged, and voila! It is working again! Thank you so much Moderator #5! Now I can print out my tax forms!

            I asked him to take a photo of the lights, which Jim had chosen years ago for the bathroom, because they were on in the other photos, so they couldn't be seen. He did, and here it is:

            Screen Shot 2020-06-11 at 7.08.42 PM.jpg

            If you look closely, you can see my hand/arm/pink sleeve on the left side of the photo in the big mirror. That's probably the best photo anyone could take of me right now!

            Also, you get a glimpse of the towels in both mirrors. Too orange. John agreed. They're so bright that they take the focus away from the rest of the bathroom, and that defeats the purpose. So, I'm looking now for darker towels.

            We discussed a variety of things in the hour that he was here. We know how to cram a lot into a short time. He even left for 10 minutes to drive up the street to pick up a golf club from one of his friends!

            Before he left, John said, "I'm only going to be a couple of hours away driving distance. If you need me, do not hesitate to call."

            I promised to text him morning and evening. He promised to send me photos of the family. They all need and deserve this mini vacation, and it is their tradition for decades. John invited me, but he said he knew that I would be worried about COVID in that large group. Well, 10 people is a large group to me, even though I know all of them, and they are our family too.

            John knows that I have to be ultra careful, which is why we both wore masks and gloves today.

            In the office, I pointed out this photo of Jonathan and Michael, and he smiled, "They aged, but they didn't age. So sweet and adorable their whole lives."

            Screen Shot 2019-09-12 at 6.47.31 PM.jpg

            Indeed!

            I also uncluttered again today, moving most of the stuff accumulated in the Sanctuary (formerly Michael's room) to Jonathan's closet. I've uncluttered the living room, as I mentioned to John today. I had two laundry baskets full of my clothes on either side of the dining room table, and Jim's rollator with my walking clothes tossed over it right next to the dining room table. Boxes of medical supplies everywhere. All in Jon's closet for now.

            Everything I'm doing is helping me to organize and find balance.

            Well, there is my long-winded summary of today. Thank you for reading, for your love, your prayers, and your continuing support of me as I enter this new phase of my life.

            I love you all, and I pray for you and your loved ones. May we all find peace, strength and love and light as we carry on in these precarious times.



            Love & Light,



            Rose

            *Virtual Hugs Are Germ-Free!
            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment


              #66
              Rose, Amazing how far you've come! My motto is "you have to keep moving to keep moving" I guess you've been thrown into that. You dig up energy when it's needed and just keep on going. The lights are just beautiful! Glad you pointed out your cameo in the shot LOL.
              We are still being very carful even though things are opening slowly. We decided with a heavy heart to cancel our yearly trip to NJ (not sure if I already mentioned this). We've gone every year for about 13 years. I haven't broken the news to Kathleen yet. She will be heartbroken but we need to be safe. It's hard to see a time when I'm going to feel safe bringing her out in public places. I do hope it gets there though. I try to get her out on her bike as much as possible and just outside in general. Her brother came over last night and did some boxing with her. She loved seeing him and boxing with him! Stay safe and healthy. Thanks for the updates!
              Mary Grace

              Comment


                #67
                Hi Rose,

                Ah yes the dreaded spam. I also leave most things to my voicemail like you, but the important thing is to check the voicemail regularly, at least once or twice per day if possible. I completely understand where you are coming from! OMG those photos are AMAZING! Especially the one of the boys! Cute as buttons! So great to see them! Thanks for posting!!!

                Originally posted by mg12061 View Post
                Rose, Amazing how far you've come! My motto is "you have to keep moving to keep moving" I guess you've been thrown into that. You dig up energy when it's needed and just keep on going. The lights are just beautiful! Glad you pointed out your cameo in the shot LOL.
                We are still being very carful even though things are opening slowly. We decided with a heavy heart to cancel our yearly trip to NJ (not sure if I already mentioned this). We've gone every year for about 13 years. I haven't broken the news to Kathleen yet. She will be heartbroken but we need to be safe. It's hard to see a time when I'm going to feel safe bringing her out in public places. I do hope it gets there though. I try to get her out on her bike as much as possible and just outside in general. Her brother came over last night and did some boxing with her. She loved seeing him and boxing with him! Stay safe and healthy. Thanks for the updates!
                Mary Grace
                Btw Mary Grace, Update: my friend D's father survived a bad stroke on the left side of his brain that effected his memory and physical movement. Good news is he will definitely make it and he's recovering. For now they don't think he had COVID19 but others around him did so there's always the slight possibility he had the virus. I left a link in the Cerebral Palsy COVID19 thread that may interest you in terms of Kathleen's health as things begin to open. Some people I know are traveling when it's an essential but it's safer to cancel. One of my other friends resigned from one of her jobs to avoid commute which shocked me because she ADORES that job but the virus is still out there. Why must everything change in such huge ways?
                Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                Comment


                  #68
                  ((((((Hugs to All)))))) ~

                  Mary Grace ~

                  Oh, I'm sad for you all that you have to cancel your annual vacation in NJ. You have always had such a wonderful time, and I loved the photos of your vacations. I can imagine Kathleen will be very disappointed. Aww ... I'm especially sad for her.

                  Your concerns for her safety in public settings is quite understandable. Unfortunately, COVID cases are increasing now, with the reopening in some states, and with all of the people who flocked to the beaches, parks, and pools during Memorial Day weekend. I have watched various infectious disease specialists in news interviews over the past few days debating whether this is a second wave or continuation of the first wave.

                  Recently, John commented to me that he doesn't know anyone, who has/had COVID. I observed that that is probably because of the early lock down in California, although our cases are increasing now with a "slow opening." It means that the masks and stay at home orders were working. The other aspect is that people can be carriers but be asymptomatic. That is why masks and social distancing are so important.

                  Dr. Fauci stated that the hundreds of thousands of protesters will likely result in a surge of COVID. Early on, I watched a long interview with Dr. Fauci, in which he said that there were no preventative measures for COVID. He did encourage people to boost their immune systems by eating properly, exercising, getting plenty of sleep, and taking multivitamins and Vitamin D3. The healthier our immune system is the better the chances for a mild case or survival from a bad case.

                  I pray for all of our BrainTalk members and their families, because all of us here either are or are caring for someone, who is, immune compromised. We have to be so careful, and that can be very disgruntling for us. Even if we don't go out often, it's frustrating to not feel safe to go out.

                  Sadly, I think this is our "new normal." As you said, it is hard to see an end to it.

                  For me, this is not a new normal. It is my normal. Isolation, gloves, masks, cleaning everything delivered before I put it away. I do not miss being in the public. I can't recall the last time I ate in a restaurant or even ordered take out/delivery.

                  I was protecting my loved ones and myself from the flu. Any kind of flu. Or cold, or strep, or intestinal virus. And we were in the ICU frequently through the years of new flu outbreaks, and other contagious diseases, like E-Bola. Washing my hands is just part of my life. And it shows on my hands, which look far older than I am. (Fortunately, my hand's cameo in the bathroom photo isn't close up!)

                  This has been difficult for our friends and family to understand sometimes. They do, but they still wanted us to be out and about. It isn't worth it to risk our lives to be out socially interacting. They all want that for me right now. I've had a rough time with all of these strange people in and out of my home everyday for over a month. That was stressful for me in a variety of ways, including exposure to their germs.

                  This pandemic leaves us with no other choice than to protect ourselves and our loved ones from getting it. The problem is that a person can be infected and feel fine in the morning, then, like the flu, be very ill by bedtime that night. Or wake up in the night with a fever, or in the morning with a cough and sore throat. By the time the symptoms appear, that person has already infected hundreds of other people with whom s/he has closely associated.

                  I know it sucks. I've missed weddings, funerals, parties, Christmas gatherings, birthday celebrations, and just friends dropping by to visit for a few hours. For nearly 2 decades. It sucks.

                  I give thanks for technology, which allows us all to stay connected. It isn't the same as hugging in person, but at least we communicate and send our love to each other. Facetime, Skype, whatever venue there is, connects people, while they remain safe in their homes.

                  This pandemic is forcing us to become more inventive and creative. Perhaps you could come up with something like everyone collecting their photos of the vacation through 13 years, and every day you connect via the internet (like Zoom), share your photos and memories? You chat, you laugh. Make your favorite foods you had on vacation and eat together on the internet. Wear the clothes you would have worn to the shore, while you chat virtually. Play some music and everyone dance! That could end up being very fun!

                  I send you, Kathleen, your beautiful family and friends my love and prayers ~

                  Love & Light,



                  Rose

                  *Virtual Hugs Are Germ-Free!
                  Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                  Comment


                    #69
                    ((((((Hugs to All)))))) ~

                    funnylegs4 ~

                    Thank you for loving the photo of Jonathan and Michael. They were 7 and 6 years old, and they had the giggles. They loved having their photo taken from Day One. Jon has his arm around Michael to give Michael support to sit up. Michael is looking at Jonathan with gratitude and adoration. Jon is proud of helping his little brother. It is a moment I cherish forever.

                    Their closeness and relationship are defined in this photo perfectly.

                    My prayers are with your friend and his father. May he recover fully.

                    As to your question:

                    Why must everything change in such huge ways?
                    Your question has probably been asked since the beginning of humankind.

                    I don't pretend to have the answer. But, most of the problems being addressed now in the U.S. and the world have been brewing for centuries. Equality, civil rights, pandemics, plagues, war, political confrontations, natural disasters, like floods, fire, earthquakes, tsunamis, hurricanes (i.e., climate change).

                    For months, people all over the world have been isolated in their homes, and then Minneapolis became the breaking point. George Floyd wasn't the first, but protesters wanted him to be the last of a centuries long list of victims.

                    I have watched a lot of coverage of the marches around the world, filled with diversity and a commitment to change the world. So many marchers appear to be in their 20-40s, which makes me think that they want a better world for themselves, their children, and their grandchildren.

                    I have lived through discrimination, the civil rights movement, a government lying to its citizens, wars, pandemics (HIV), assassinations, and I have marched in protest for free speech and civil rights. My life was devoted to advocacy and activism for the civil rights of people with a disabling condition. Every battle I waged for my children, I waged for their peers.

                    So what we're experiencing now is like a stew left on the back burner for too long, and now it is boiling over. And, the chefs in charge are not tending to the boiling pot of stew.

                    Positive change doesn't happen overnight or just because we want it to happen. We have to make it happen. If we don't do that, then everything that occurs will seem overwhelming and huge to us.

                    We have to stir the pot of stew.



                    Love & Light,



                    Rose

                    *Virtual Hugs Are Germ-Free!
                    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                    Comment


                      #70
                      Originally posted by Earth Mother 2 Angels View Post
                      ((((((Hugs to All)))))) ~

                      funnylegs4 ~

                      Thank you for loving the photo of Jonathan and Michael. They were 7 and 6 years old, and they had the giggles. They loved having their photo taken from Day One. Jon has his arm around Michael to give Michael support to sit up. Michael is looking at Jonathan with gratitude and adoration. Jon is proud of helping his little brother. It is a moment I cherish forever.

                      Their closeness and relationship are defined in this photo perfectly.

                      My prayers are with your friend and his father. May he recover fully.

                      As to your question:



                      Your question has probably been asked since the beginning of humankind.

                      I don't pretend to have the answer. But, most of the problems being addressed now in the U.S. and the world have been brewing for centuries. Equality, civil rights, pandemics, plagues, war, political confrontations, natural disasters, like floods, fire, earthquakes, tsunamis, hurricanes (i.e., climate change).

                      For months, people all over the world have been isolated in their homes, and then Minneapolis became the breaking point. George Floyd wasn't the first, but protesters wanted him to be the last of a centuries long list of victims.

                      I have watched a lot of coverage of the marches around the world, filled with diversity and a commitment to change the world. So many marchers appear to be in their 20-40s, which makes me think that they want a better world for themselves, their children, and their grandchildren.

                      I have lived through discrimination, the civil rights movement, a government lying to its citizens, wars, pandemics (HIV), assassinations, and I have marched in protest for free speech and civil rights. My life was devoted to advocacy and activism for the civil rights of people with a disabling condition. Every battle I waged for my children, I waged for their peers.

                      So what we're experiencing now is like a stew left on the back burner for too long, and now it is boiling over. And, the chefs in charge are not tending to the boiling pot of stew.

                      Positive change doesn't happen overnight or just because we want it to happen. We have to make it happen. If we don't do that, then everything that occurs will seem overwhelming and huge to us.

                      We have to stir the pot of stew.



                      Love & Light,



                      Rose

                      *Virtual Hugs Are Germ-Free!
                      Hi Rose,

                      I love anytime you post a photo of your boys! It makes me feel like they are still with us here on the forum. I love how Michael and Jon adored and helped each other. Is this when Michael had trouble sitting because of the disability if you don’t mind me asking? They get that caring nature from you I’m sure. :) Thank you! It seems like D’s father will have lasting effects of the stroke because the damage to his brain is more severe than what my teacher friend had, but he’s improving more than Drs originally thought he would. Thank God! I think prayers are what is keeping D’s father alive and recovering. Good ideas about connecting via Zoom, Skype etc. D does that with her father as he recovers.

                      Yes it is boiling over. I just wish it didn’t have to get to the point of boiling over. It's not fair. Thank you for fighting for the civil rights of disabled people like me! By fighting for disability rights we help disabled individuals of every race and minority because disability is the most diverse global minority.
                      Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                      My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                      Comment


                        #71
                        More Peace Still

                        ((((((Hugs to All)))))) ~

                        funnylegs4 ~

                        Michael had a variety of issues with balance and stability. Jonathan was stronger and developed faster, and he walked from the age of 4 to the age of 23 (with a walker). Michael stopped walking at the age of 10, when the seizures began. That's when his life changed. Twenty-two years of intractable seizures daily.

                        Jonathan was always Michael's protector. So, it was just natural for Jon to put his arm around Michael for the photo. Extra support to prevent Michael from tipping backward.

                        After Michael passed, Jonathan talked about Michael every day, except when he was intubated and couldn't speak. He often requested home movies, so we could all watch what life once was for us.

                        Now, they are together with their dad in Bliss.

                        I'm grateful that D's dad is improving, and I pray it will continue to be so for him and for D. I know you're prayers are with them, as are many others, and we do know that prayer is powerful.

                        You wrote:

                        disability is the most diverse global minority
                        So true, and it is also the most forgotten minority.

                        Every census, which I've completed in my lifetime, did not ask one question about disability. I remember filling them out and complaining to Jim that there were no questions about any household member having a disability.

                        Listen to politicians on the campaign trail. How often are people with disabilities acknowledged? Rarely.

                        Disabilities do not discriminate on the basis of anything, age, race, religion, birthplace, etc.

                        In my advocacy, I often explained to able-bodied people that, while they are fine today, tomorrow, they could slip and fall and break a hip, or have a brain aneurysm, or be in a car accident, or suddenly lose their memory. God willing, none of that happens. But then we become old and frail, with arthritis, cancer. Not one of us is infallible.

                        So protecting people with disabilities is like paying for insurance on your health, or home, or vehicle. Should one ever find oneself having a disabling condition, the services and programs are there ready to help them.

                        Like Martin Gugino, 75, who was fit and able, a lifelong advocate for human rights, until he was shoved by a Buffalo police officer and hit his head on the pavement. Martin has a brain injury and fractured skull, his condition is upgraded to fair, and he's entering rehab soon.

                        Only registered and activated users can see links., Click Here To Register...

                        Several years ago, here at CN, we had various threads discussing police brutality against people with disabilities, specifically neurological disabilities. Those incidents did not receive even the slightest amount of media coverage at the time, and those victims are forgotten now.

                        We must fight discrimination and stand up for equality for all. We must never stop fighting for the civil rights of every human being on our planet.


                        “Until we are all free, we are none of us free. ”

                        ― Emma Lazarus
                        Send prayers for healing and peace around the world ~



                        I love you all and pray for you and your loved ones with gratitude for your love, prayers, and enduring friendship.
                        Love & Light,



                        Rose

                        *Virtual Hugs Are Germ-Free!
                        Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                        Comment


                          #72
                          Originally posted by Earth Mother 2 Angels View Post
                          ((((((Hugs to All)))))) ~

                          funnylegs4 ~

                          Michael had a variety of issues with balance and stability. Jonathan was stronger and developed faster, and he walked from the age of 4 to the age of 23 (with a walker). Michael stopped walking at the age of 10, when the seizures began. That's when his life changed. Twenty-two years of intractable seizures daily.

                          Jonathan was always Michael's protector. So, it was just natural for Jon to put his arm around Michael for the photo. Extra support to prevent Michael from tipping backward.

                          After Michael passed, Jonathan talked about Michael every day, except when he was intubated and couldn't speak. He often requested home movies, so we could all watch what life once was for us.

                          Now, they are together with their dad in Bliss.

                          I'm grateful that D's dad is improving, and I pray it will continue to be so for him and for D. I know you're prayers are with them, as are many others, and we do know that prayer is powerful.

                          You wrote:



                          So true, and it is also the most forgotten minority.

                          Every census, which I've completed in my lifetime, did not ask one question about disability. I remember filling them out and complaining to Jim that there were no questions about any household member having a disability.

                          Listen to politicians on the campaign trail. How often are people with disabilities acknowledged? Rarely.

                          Disabilities do not discriminate on the basis of anything, age, race, religion, birthplace, etc.

                          In my advocacy, I often explained to able-bodied people that, while they are fine today, tomorrow, they could slip and fall and break a hip, or have a brain aneurysm, or be in a car accident, or suddenly lose their memory. God willing, none of that happens. But then we become old and frail, with arthritis, cancer. Not one of us is infallible.

                          So protecting people with disabilities is like paying for insurance on your health, or home, or vehicle. Should one ever find oneself having a disabling condition, the services and programs are there ready to help them.

                          Like Martin Gugino, 75, who was fit and able, a lifelong advocate for human rights, until he was shoved by a Buffalo police officer and hit his head on the pavement. Martin has a brain injury and fractured skull, his condition is upgraded to fair, and he's entering rehab soon.

                          Only registered and activated users can see links., Click Here To Register...

                          Several years ago, here at CN, we had various threads discussing police brutality against people with disabilities, specifically neurological disabilities. Those incidents did not receive even the slightest amount of media coverage at the time, and those victims are forgotten now.

                          We must fight discrimination and stand up for equality for all. We must never stop fighting for the civil rights of every human being on our planet.




                          Send prayers for healing and peace around the world ~



                          I love you all and pray for you and your loved ones with gratitude for your love, prayers, and enduring friendship.
                          Love & Light,



                          Rose

                          *Virtual Hugs Are Germ-Free!
                          Hi Rose,

                          Jon and Michael sound so sweet together. I’m sorry Michael lost the ability to walk and had to endure seizures starting at only 10 yrs old. Thanks so much for the thoughts and prayers for D’s father. He needs it so badly now.

                          This is just a wild guess but perhaps compared to the other types of identity, disability is seen as a private medical thing that is not suitable on a census. When I deal with paperwork for my work or paperwork for education purposes consent and stuff about HIPPA law comes up pretty quickly. Some people I know really freak out when the idea of having stats on disability is brought up. Maybe people just don’t want the govt having what they consider private medical info? I fully understand the need for privacy and consent but maybe the “hush, hush, it’s so private” attitude about disability is part of the problem? I don’t know. It would be interesting to have those stats. The govt has info on everything else LOL.

                          So true. I know disabled people of all races and religions. Disability teaches you that human biology is the same regardless of race or religion so it can be very unifying. Yes I know many people killed or injured by police are disabled. I know these issues with police effect people with autism and various cognitive and mental health disabilities the most. I also heard from my friends who are diabetic that low blood sugar can look like being drunk or otherwise intoxicated. At times low blood sugar can look like aggression or resisting arrest because the person’s brain doesn’t work at that point. The insulin devices can look like devices used to take illegal drugs. I remember years ago there were stories of people who were having strokes but authorities mistook the stroke systems for being drunk or intoxicated and the people having the strokes died, usually of the stroke itself. :( I remember once a friend of mine with a stutter got mildly drunk but it made his stutter so bad a person who does not know him would think he was heavily intoxicated. I don’t expect cops to have the same level of medical knowledge as a doctor but some medical training for cops seems hugely needed given current problems of needless, sad deaths. I don’t mean to get political. It’s just my general opinion based on experiences I have observed.

                          Yes. I’v seen firsthand how fast disability can happen and how it eventually effects everyone so disability rights should matter to all human rights. The media is certainly part of the problem when fighting for civil rights so maybe that's part of why I make media.
                          Last edited by funnylegs4; 06-13-2020, 07:57 PM.
                          Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                          My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                          Comment


                            #73
                            E Pluribus Unum

                            ((((((Hugs to All)))))) ~

                            funnylegs4 ~

                            The government already knows everything about all of us. I would imagine that many people, who have a disabling condition, rely on federal or state support of some kind.

                            The purported purpose of the census is for our government to be able to provide services to meet our needs. Social services are tantamount to meeting the needs of disenfranchised people. For the government to meet our needs better, they need to know how many people in the population have a disabling condition.

                            I can understand your point about privacy and HIPPA, but I don't think that's the reason why disability isn't asked on the census.

                            The officers involved in George Floyd's death, Breonna's death, the young man in Atlanta, who was shot last night, don't need medical training. They need to not be on the police force in the first place.

                            This is where defunding police comes into play ~ not getting rid of police, but bringing in social services experts for specific kinds of cases involving mental health and medical issues. Reallocating police funds for military equipment to serve the community in mental health, homeless care, education, training, job opportunities, etc.

                            In the mid-70s, my dad served on a jury for a man, who had CP and had been arrested for public intoxication. Why this went to a jury trial, I can't recall, and while this man wasn't beaten, he was manhandled and mistreated. Shoved in a squad car and taken to jail overnight.

                            My dad was the jury foreman, and he used his platform to tell the jurors about his two grandsons, who were disabled. "They walk with an awkward gait. I can't imagine, when they are adults, being treated the same way this defendant was treated by these officers. I fear for them and all of their friends, who have an awkward gait or can't communicate effectively. We have to protect all of these folks."

                            The jury returned a unanimous verdict favoring the disabled defendant.

                            My dad was so proud of the verdict, and I was proud of him for advocating for his grandsons and their peers.

                            This is an old, lingering problem in our society, and it needs to be corrected.

                            Martin, the peaceful 75 year old protester, who was shoved to the pavement, will likely suffer with side effects for the rest of his life. Headaches, seizures, stroke, bleeding, concussion syndrome, CBE ... the list is very long.

                            This just simply has to STOP!

                            In my experience, if you're different in anyway, you are subjected to discrimination, prejudice, and persecution. There is no grey area. Either we are are all treated equally, or we are not.

                            My beautiful Angels were shunned and betrayed by schools, physicians, Disneyland ride operators, strangers, who crossed the street to avoid them, our government, Medicaid, social services, the casino manager at the Mirage in Las Vegas, who said our boys were bothering the other guests and were underage (we had their ID cards, and they were over 21 at the time), and their biological "donor." (Just a partial list.)

                            My prayers are ongoing for peace and unity in bringing our community of people together. All people together. All of us as one. Caring for each other and building strong communities of trust and cooperation and helping each other.

                            E Pluribus Unum: Out of many, one.

                            I love you all and pray for you and your loved ones, and give thanks for your love and support.



                            Love & Light,



                            Rose

                            *Virtual Hugs Are Germ-Free!
                            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                            Comment


                              #74
                              ((((((Hugs to All)))))) ~

                              In addition to all of the heavy stuff happening in our world right now, I have been endeavoring to clean here and there, catch up on bills and organizing for tax attack, watering plants, filling Michael's pond. I have to be very careful in the backyard, as there are many roots from our tree throughout and the pond is surrounded by large river rocks. It can be precarious.

                              But, I haven't been overdoing it. I did for a couple of days, then I realized I needed to rest, so I have been. I feel guilty, when I'm not doing something, because there are so many things needing to be done. That's the story of my entire adult life. I just keep reminding myself of that, which helps with the guilt. I need a "vacation" from doing stuff.

                              I'm trying. I can't change anything, wave a magic wand and have it all be as it should be or as I want it to be or have my beloveds in my arms again. I just have to take it as it comes and go with the flow.

                              Thank you all for your love, prayers, and support. Please pray for Virginia, who has been feeling unwell for a couple of days. Thank you so much.

                              Love & Light,



                              Rose

                              *Virtual Hugs Are Germ-Free!
                              Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                              Comment


                                #75
                                Originally posted by Earth Mother 2 Angels View Post
                                ((((((Hugs to All)))))) ~

                                funnylegs4 ~

                                The government already knows everything about all of us. I would imagine that many people, who have a disabling condition, rely on federal or state support of some kind.

                                The purported purpose of the census is for our government to be able to provide services to meet our needs. Social services are tantamount to meeting the needs of disenfranchised people. For the government to meet our needs better, they need to know how many people in the population have a disabling condition.

                                I can understand your point about privacy and HIPPA, but I don't think that's the reason why disability isn't asked on the census.

                                The officers involved in George Floyd's death, Breonna's death, the young man in Atlanta, who was shot last night, don't need medical training. They need to not be on the police force in the first place.

                                This is where defunding police comes into play ~ not getting rid of police, but bringing in social services experts for specific kinds of cases involving mental health and medical issues. Reallocating police funds for military equipment to serve the community in mental health, homeless care, education, training, job opportunities, etc.

                                In the mid-70s, my dad served on a jury for a man, who had CP and had been arrested for public intoxication. Why this went to a jury trial, I can't recall, and while this man wasn't beaten, he was manhandled and mistreated. Shoved in a squad car and taken to jail overnight.

                                My dad was the jury foreman, and he used his platform to tell the jurors about his two grandsons, who were disabled. "They walk with an awkward gait. I can't imagine, when they are adults, being treated the same way this defendant was treated by these officers. I fear for them and all of their friends, who have an awkward gait or can't communicate effectively. We have to protect all of these folks."

                                The jury returned a unanimous verdict favoring the disabled defendant.

                                My dad was so proud of the verdict, and I was proud of him for advocating for his grandsons and their peers.

                                This is an old, lingering problem in our society, and it needs to be corrected.

                                Martin, the peaceful 75 year old protester, who was shoved to the pavement, will likely suffer with side effects for the rest of his life. Headaches, seizures, stroke, bleeding, concussion syndrome, CBE ... the list is very long.

                                This just simply has to STOP!

                                In my experience, if you're different in anyway, you are subjected to discrimination, prejudice, and persecution. There is no grey area. Either we are are all treated equally, or we are not.

                                My beautiful Angels were shunned and betrayed by schools, physicians, Disneyland ride operators, strangers, who crossed the street to avoid them, our government, Medicaid, social services, the casino manager at the Mirage in Las Vegas, who said our boys were bothering the other guests and were underage (we had their ID cards, and they were over 21 at the time), and their biological "donor." (Just a partial list.)

                                My prayers are ongoing for peace and unity in bringing our community of people together. All people together. All of us as one. Caring for each other and building strong communities of trust and cooperation and helping each other.

                                E Pluribus Unum: Out of many, one.

                                I love you all and pray for you and your loved ones, and give thanks for your love and support.



                                Love & Light,



                                Rose

                                *Virtual Hugs Are Germ-Free!
                                Hi Rose,

                                Let me be clear that I completely agree that the cops involved in George Floyd's death, Breonna's death, and the young man in Atlanta’s death, whose name I can’t spell at the moment need to be charged for murder and locked up ASAP. I was referring more to cases where disabled people die in custody because the disability is mistaken for something else illegal. My biggest apologies for not being clear in this distinction dear friend. Kudos to your dad! Right on!! Regarding the man your dad advocated for, one of my friends with CP was indeed arrested for intoxication because the cops mistook spasticity for being drunk. My friend with CP was slammed against the squad car to be handcuffed which could have led to a serious injury, my friend with CP was only released because his mother showed up and verified the medical diagnosis of Cerebral Palsy via paperwork she had with her the same day. Oy! My other friend who uses a power chair was also advised not to get drunk while operating the power chair because the cops view driving a power chair drunk as a form of drunk driving. I’m NOT kidding. I have never gotten confirmation about whether impaired power chair driving could get someone arrested but it concerned me a lot. I don’t drink for these reasons. Plus drinking is NOT good for my health.

                                Yes my friends and I have to provide our diagnosis to get most accommodations so I’m sure the government has a rather lengthy file on me LOL. Hope they at least find it interesting to read. LOL.

                                Good news, D’s father with the stroke is speaking and his sense of humor has returned. :) Thank God!
                                Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                                My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                                Comment

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