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    #31
    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I'm so sorry that your relative experienced kidney stones. Until his final days battling cancer, Jim said the kidney stones were the worst pain he'd ever experienced. Thankfully, all is well now for your relative, and I hope that follow up care is on the agenda to prevent future stones.

    I don't know who came up with the expression, "God never gives you more than you can handle," because I've often felt that God has higher expectations of me than I can fulfill. Nonetheless, every time I have felt that way, I have managed to overcome and continue on. I believe it is because God gives me these challenges and then helps me to do what must be done and then move forward.

    We never know what is around the corner for us in life, so we must be prepared for anything. As we grow older, we're bound to have more situations, which call upon us to do what we don't think we can do. Just remember, we can only do what we can do, which is our best. In a crisis, adrenaline usually kicks in and we seem to have super powers.

    You did your best and helped your loved one through a crisis. And, should you be in that situation again, or something similar, what you learned from this experience will inform your reaction to the next one.

    To answer your question about Michael ~

    I don't know. This was 50 years ago in a small Midwestern town. Specialists from around the world studied Jonathan and Michael and generally agreed that their disorder was genetic, but the genetic science was too young then to identify exactly where the genetic defect was. After Fragile X was ruled out, I gave up on testing. I saw no point in it. Poking the boys for blood draws, which they didn't like, of course, for what? It wouldn't change anything. I would still and always love and care for them.

    Our relatives didn't care about genetic testing for future generations, and both sides of our families blamed the other side. "Nothing like this has happened in our family!" Well, no one knows that really, because in those days, the infants would have died from pneumonia, before growing up into toddlers, adolescents, and adults. Or their mothers would have miscarried and possibly died as well. I'm referring to the 1800s and 1900s.

    Thank you so much for your birthday wishes. Jonathan and Michael deserve the biggest celebration to honor their courage and their incredible spirits.

    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


      #32
      Originally posted by Earth Mother 2 Angels View Post
      ((((((Hugs to All)))))) ~

      funnylegs4 ~

      I'm so sorry that your relative experienced kidney stones. Until his final days battling cancer, Jim said the kidney stones were the worst pain he'd ever experienced. Thankfully, all is well now for your relative, and I hope that follow up care is on the agenda to prevent future stones.

      I don't know who came up with the expression, "God never gives you more than you can handle," because I've often felt that God has higher expectations of me than I can fulfill. Nonetheless, every time I have felt that way, I have managed to overcome and continue on. I believe it is because God gives me these challenges and then helps me to do what must be done and then move forward.

      We never know what is around the corner for us in life, so we must be prepared for anything. As we grow older, we're bound to have more situations, which call upon us to do what we don't think we can do. Just remember, we can only do what we can do, which is our best. In a crisis, adrenaline usually kicks in and we seem to have super powers.

      You did your best and helped your loved one through a crisis. And, should you be in that situation again, or something similar, what you learned from this experience will inform your reaction to the next one.

      To answer your question about Michael ~

      I don't know. This was 50 years ago in a small Midwestern town. Specialists from around the world studied Jonathan and Michael and generally agreed that their disorder was genetic, but the genetic science was too young then to identify exactly where the genetic defect was. After Fragile X was ruled out, I gave up on testing. I saw no point in it. Poking the boys for blood draws, which they didn't like, of course, for what? It wouldn't change anything. I would still and always love and care for them.

      Our relatives didn't care about genetic testing for future generations, and both sides of our families blamed the other side. "Nothing like this has happened in our family!" Well, no one knows that really, because in those days, the infants would have died from pneumonia, before growing up into toddlers, adolescents, and adults. Or their mothers would have miscarried and possibly died as well. I'm referring to the 1800s and 1900s.

      Thank you so much for your birthday wishes. Jonathan and Michael deserve the biggest celebration to honor their courage and their incredible spirits.

      Love & Light,



      Rose

      *Virtual Hugs Are Germ-Free!
      Hi Rose,

      Thank you!!! I read my relative your post and they said “Yes Jim was right, that was the worst pain!” . Yes follow up care has already started and is going well. We have also taken all needed COVID19 precautions so we didn’t get infected from anyone who might have been in the hospital. Yes all we can do is keep going in life. At least I was able to be more calm and comforting than I was to my teacher, years ago, I was happy I could speak with 911 operators clearly and do some basic physical things for my relative. I’m glad this happened at a time when I wasn’t dealing with any CP related treatments and that we were together.

      Michael RE: I agree, no point in genetic testing unless the test provides information about care that makes life better for the child/person. True, disabled babies simply did not survive long enough in the old days of the 1800s to be diagnosed. Or if they were, some conditions were mistaken for others. In some cases sick or disabled babies were purposefully left to die. You’re very welcome!
      Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
      My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

      Comment


        #33
        My dear Rose and all my friends here at CN2,

        First of all, Happy Belated Birthday in heaven to Michael. I remember him so well - our lives in parallel across the country. And Jon - your beautiful sons will always be loved and remembered here. Rose, I am so glad that John is there for you and you for him (you are his honourary Mom!). Such a beautiful relationship.

        We are all well here - Nick is looking forward to meeting a newly hired staff member this coming week. Fingers crossed that she works out. She sounds great - 30-something with young teens at home (so mature), a sports fan and soccer coach (yay!) and great sense of humour (double yay!). Another young man interviewed with Nick over skype but Nick wasn't as keen. Apparently this young man was quite nervous and did not direct any of his questions or comments to Nick - only to his helper. Not a good sign. But maybe it was just nerves and it would be better in person. We'll see - he's not hired yet.

        Last week the covid numbers went down here and so I had my first outing since last February. I went to the art gallery with my friend/neighbour, Sylvie. We went in separate cars and we were the only people at the gallery, it was empty and we walked around in masks of course and physically distanced. I wrote about how much it meant to me here: Only registered and activated users can see links., Click Here To Register.... I feel so much better since going. If the numbers stay down, we'll try again - it feels a lot safer than the grocery store (which I have to go to because there's no delivery where we live in the country). I've been working quite a bit recently, teaching caregiving and family engagement in health research at McMaster University. I'm working on a bunch of research projects, one about PTSD in complex care parents. Rose, you and I could be the poster kids for it. I find it very rewarding. And I'm working on another paper (with a team of high fallutin scientists) for the Royal Society of Canada about the effects of Covid on Canadian ppl of all ages with disabilities and their families. We know that Covid has 3x more dangerous effects for ppl with dev. disabilities but we need to put all the data together and look at the wellbeing of families too. The government will use these recommendations as bases for policymaking. Hopefully something good and helpful will come from this work.

        This afternoon, I'm going to have a bowl of pumpkin soup that I made yesterday and sit by the fire. Jim and I and Daisy just came in from a walk - it's windy and just below freezing with a dusting of snow on the ground. Brrrr!!!!

        I send love and prayers for you Rose, and all my friends here and your families - Big virtual hugs!!! xoxo Donna
        Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
        Check out my blog: http://www.donnathomson.com

        Comment


          #34
          ((((((Hugs to All)))))) ~

          funnylegs4 ~

          I'm happy to hear that your relative is doing well now.

          At least I was able to be more calm and comforting than I was to my teacher, years ago, I was happy I could speak with 911 operators clearly and do some basic physical things for my relative. I’m glad this happened at a time when I wasn’t dealing with any CP related treatments and that we were together.
          There you go ~ you proved my point that your experience informed your response to your relative's emergency. Every experience is a life lesson.

          RE: Genetic testing ~ Jonathan and Michael were each in the hospital 9 times with pneumonia before they turned 2 years old. That is where my premise that my ancestors' children (and my former spouse's ancestors' children) would have perished, before developmental or neurological issues were apparent. Jon was diagnosed at 9 months; Michael was diagnosed at 6 months, because of Jonathan. Our pediatrician said, "It's probably a double recessive gene."

          A few years later, working on my degree, I chose a Genetics class to learn more about the science to help my children. I was surrounded by pre-med students, and my professor was very patient with me. I told him why I was taking the class, for my children, and he moved mountains to help me pass the class with a C+. He graded on a curve, and he apologized to me and praised me for my dedication to learning about genetics. That grade was like an A+ to me. It's value to me throughout the rest of Jonathan's and Michael's Earthly lives is immense.

          Donna ~

          You and I have been traveling this path together for 20 years now. We certainly have been through a lot together.

          I am happy to hear that Nick has found a suitable replacement for his caregiver. I will pray that everything works out with her for Nick.

          Thank you for sharing your art gallery experience. Experiencing all of that in person, I am sure, was inspiring and invigorating. I haven't been to an art gallery or museum for over 30 years. Actually, other than the hospital and grocery store, I haven't been anywhere for 15 or more years. I live vicariously!

          If you need any help with your PTSD project, let me know. I have PTSD from many different experiences in addition to caring for and losing Jonathan and Michael, as well as Jim. I think most of us here on CN have a ton of PTSD experiences. How do we cope with it and keep going?

          What a great project about COVID's impact on people with disabilities. Now, more than ever, our disabled community needs extra support. I'll be interested to read your project report.

          Some time ago, you recommended the Netflix documentary, "Crip Camp." I finally watched it this weekend. Amazing. Of course, I lived through that era, but Jon and Michael were babies/toddlers during those years. There really was a revolution in our nation by people with disabilities. We participated in it fully. Along with other parents of children with DD, I advocated for PL-94-142, which became IDEA, ensuring appropriate free education in the least restrictive environment, Title 504, the ADA, the Olmstead Act, which closed institutions and reintegrated people into the community. I knew many folks, who lived at the local Independent Living Center from marches and meetings. It was deja vu for me to watch this great documentary.

          Also, it was produced by Barack and Michelle Obama, which doesn't surprise me. I've watched a couple of their Netflix productions, and like "Crip Camp," they focus on the human condition and our role as a society to improve it.

          While it is cold and snowy for you, it is 85 degrees here today and stunningly beautiful. Unfortunately, COVID cases are increasing rapidly here, so we're locking down again. Not enough, if you ask me.

          John's daughter started school at school a week or so ago, 2 days a week, 3 hours a day. This is just ridiculous to me. In the middle of Fall/Winter, they reopen the school, which is traditionally flu season anyway? Do they think that kids can't give/get COVID, if they only go for 2 days and 6 hours? What is the point of this? By now, all of these teens should know how to do distance learning. They aren't socially isolated, because they are constantly on their phones, texting, zooming, talking. They meet in small groups with masks on and hang out. John's daughter and her friends are 18. Adults. They can handle not being physically in a classroom. They're on line all of the time anyway!

          So, now, I'm afraid to be with John. He's already at risk with his job. Now, his daughter is in school. Right before the holidays.

          I wish the Governor would just issue a mandate: Masks, and everything that isn't vital to our communities is closed. We are never going to get a handle on this if hair salons open for a little while, then shut down because COVID cases increased. Of course they did! We opened up too much too soon.

          I don't need Dr. Fauci to tell me how gruesome and virulent this virus is. I just watch the news and see the cases rising, bodies being placed in refrigerated truck trailers, and I watch interviews with people, who have had it, and what they went through and continue to go through after it is "over." It's common sense. We have to be locked down to get this under some kind of control, and everybody has to agree to it.

          COVID is the 100 year plague (Spanish flu), and we all need to take it seriously.

          Okay ... sorry ... just very stressed these days.

          Meanwhile, I try to find the positive in each day, some humor, some music, some inspiration.

          Thank you, Donna, funnylegs4, and all of our wonderful friends here for your love, prayers and support, which I return to you and your loved ones ten-fold.

          Blessings to all ~ be safe and well ~

          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


            #35
            Originally posted by Earth Mother 2 Angels View Post
            ((((((Hugs to All)))))) ~

            funnylegs4 ~

            I'm happy to hear that your relative is doing well now.



            There you go ~ you proved my point that your experience informed your response to your relative's emergency. Every experience is a life lesson.

            RE: Genetic testing ~ Jonathan and Michael were each in the hospital 9 times with pneumonia before they turned 2 years old. That is where my premise that my ancestors' children (and my former spouse's ancestors' children) would have perished, before developmental or neurological issues were apparent. Jon was diagnosed at 9 months; Michael was diagnosed at 6 months, because of Jonathan. Our pediatrician said, "It's probably a double recessive gene."

            A few years later, working on my degree, I chose a Genetics class to learn more about the science to help my children. I was surrounded by pre-med students, and my professor was very patient with me. I told him why I was taking the class, for my children, and he moved mountains to help me pass the class with a C+. He graded on a curve, and he apologized to me and praised me for my dedication to learning about genetics. That grade was like an A+ to me. It's value to me throughout the rest of Jonathan's and Michael's Earthly lives is immense.

            Donna ~

            You and I have been traveling this path together for 20 years now. We certainly have been through a lot together.

            I am happy to hear that Nick has found a suitable replacement for his caregiver. I will pray that everything works out with her for Nick.

            Thank you for sharing your art gallery experience. Experiencing all of that in person, I am sure, was inspiring and invigorating. I haven't been to an art gallery or museum for over 30 years. Actually, other than the hospital and grocery store, I haven't been anywhere for 15 or more years. I live vicariously!

            If you need any help with your PTSD project, let me know. I have PTSD from many different experiences in addition to caring for and losing Jonathan and Michael, as well as Jim. I think most of us here on CN have a ton of PTSD experiences. How do we cope with it and keep going?

            What a great project about COVID's impact on people with disabilities. Now, more than ever, our disabled community needs extra support. I'll be interested to read your project report.

            Some time ago, you recommended the Netflix documentary, "Crip Camp." I finally watched it this weekend. Amazing. Of course, I lived through that era, but Jon and Michael were babies/toddlers during those years. There really was a revolution in our nation by people with disabilities. We participated in it fully. Along with other parents of children with DD, I advocated for PL-94-142, which became IDEA, ensuring appropriate free education in the least restrictive environment, Title 504, the ADA, the Olmstead Act, which closed institutions and reintegrated people into the community. I knew many folks, who lived at the local Independent Living Center from marches and meetings. It was deja vu for me to watch this great documentary.

            Also, it was produced by Barack and Michelle Obama, which doesn't surprise me. I've watched a couple of their Netflix productions, and like "Crip Camp," they focus on the human condition and our role as a society to improve it.

            While it is cold and snowy for you, it is 85 degrees here today and stunningly beautiful. Unfortunately, COVID cases are increasing rapidly here, so we're locking down again. Not enough, if you ask me.

            John's daughter started school at school a week or so ago, 2 days a week, 3 hours a day. This is just ridiculous to me. In the middle of Fall/Winter, they reopen the school, which is traditionally flu season anyway? Do they think that kids can't give/get COVID, if they only go for 2 days and 6 hours? What is the point of this? By now, all of these teens should know how to do distance learning. They aren't socially isolated, because they are constantly on their phones, texting, zooming, talking. They meet in small groups with masks on and hang out. John's daughter and her friends are 18. Adults. They can handle not being physically in a classroom. They're on line all of the time anyway!

            So, now, I'm afraid to be with John. He's already at risk with his job. Now, his daughter is in school. Right before the holidays.

            I wish the Governor would just issue a mandate: Masks, and everything that isn't vital to our communities is closed. We are never going to get a handle on this if hair salons open for a little while, then shut down because COVID cases increased. Of course they did! We opened up too much too soon.

            I don't need Dr. Fauci to tell me how gruesome and virulent this virus is. I just watch the news and see the cases rising, bodies being placed in refrigerated truck trailers, and I watch interviews with people, who have had it, and what they went through and continue to go through after it is "over." It's common sense. We have to be locked down to get this under some kind of control, and everybody has to agree to it.

            COVID is the 100 year plague (Spanish flu), and we all need to take it seriously.

            Okay ... sorry ... just very stressed these days.

            Meanwhile, I try to find the positive in each day, some humor, some music, some inspiration.

            Thank you, Donna, funnylegs4, and all of our wonderful friends here for your love, prayers and support, which I return to you and your loved ones ten-fold.

            Blessings to all ~ be safe and well ~

            Love & Light,



            Rose

            *Virtual Hugs Are Germ-Free!
            Hi Rose,

            Thank you so much! Today my relative met another guy who has had kidney stones. This other guy said his pain was so bad he passed out, the poor dear. I hope I never get a kidney stone, yikes! I’m sorry Jon and Michael had pneumonia. You are brave to take genetics. I have taken many biology courses but genetics was always the hardest. I’m so glad you had such a desire to help your sons.

            Crip Camp RE: “Crip Camp” is one of my favorite documentaries! I love it! I have seen it twice. Bless Judith Heumann and her friends for the work they did. Everything I have now in terms of my disability rights is because of Judith and her friends. And you!!! I also know people in my local chapter of Center For Independent Living. Have you read Judith Heumann’s book “Being Heumann”??? The book fills in things the documentary didn’t cover, like college inaccessibility. The book is a super easy and engaging read and I always recommend it to my coworkers, fanbase etc along with the documentary. I’m glad the Obamas used their notoriety as a way to get “Crip Camp” to the masses. I know professors who use “Crip Camp” as teaching tools in their classes. The students love it.

            Prayers and blessings to you!
            Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
            My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

            Comment


              #36
              Seven Months

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

              funnylegs4 ~

              Everything I did for Jonathan and Michael, I did for their peers and future generations, like you and your peers. I have zero tolerance for injustice, inequality, and discrimination. Toward anyone for any reason. We are all human beings. We were placed here for a reason. We all have value, worth, and rights. Even though we have differences, we have more similarities.

              I haven't read Judith's book, but I am certain it is powerful. She is a force to be reckoned with that is for sure.

              As Jon and Michael aged, and more health issues arose, I had to set aside my advocacy work. Our garage is full of boxes, many of which contain evidence of the battles I fought.

              I recall attending an organizing meeting to protest some disastrous law, and I met the couple sitting behind me. They were very young. Their daughter was only 3 years old. As they told me their daughter's story, and I saw the pain in their eyes and heard it in their voices, I said to them, "I'm so sorry you are having to go through this. I've been working all of my life to right these wrongs, so you wouldn't have to be here tonight."

              We have to keep fighting for change. I'm not up to it now, so I rely on you and your generation to take up the cause. And I know you are, and I thank you, funnylegs4.

              And, you, Donna, as you never seem to run out of energy.

              It is up to us to change the world.

              SEVEN MONTHS

              Today, it is 7 months, since Jim passed. I am struggling in many ways.

              Yesterday, John and I completed another legal task related to Jim, and I mentioned that today would be 7 months since Jim passed. He replied, "If you had asked me how long ago Jim had passed, I would have answered 3 or 4 months."

              I responded, "I would say, 'Yesterday.'"

              He agreed. Then I said, "Just think of the flurry of all that has happened in the last 3 1/2 or more years, John. It all comes down to the finale, but we're still hearing the orchestra."

              As always, we shared our memories of Jim, Jon, and John's mom and family. There is never a lull in our conversation.

              So many times, before Jon and Jim left, I tried to imagine my life without them. I could only go so far, because my heart would begin breaking at the thought of losing them.

              Now, Thanksgiving and Christmas approach, and I'm trying to determine how I will cope with the holidays. I expect many moments of sorrow, but I will attempt to hold it together, so I can keep functioning. It is a delicate, precarious balance.

              To you and all of our family here and your loved ones, I send prayers, positive, healing energy, and peace.

              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


                #37
                Originally posted by Earth Mother 2 Angels View Post
                ((((((Hugs to All)))))) ~

                funnylegs4 ~

                Everything I did for Jonathan and Michael, I did for their peers and future generations, like you and your peers. I have zero tolerance for injustice, inequality, and discrimination. Toward anyone for any reason. We are all human beings. We were placed here for a reason. We all have value, worth, and rights. Even though we have differences, we have more similarities.

                I haven't read Judith's book, but I am certain it is powerful. She is a force to be reckoned with that is for sure.

                As Jon and Michael aged, and more health issues arose, I had to set aside my advocacy work. Our garage is full of boxes, many of which contain evidence of the battles I fought.

                I recall attending an organizing meeting to protest some disastrous law, and I met the couple sitting behind me. They were very young. Their daughter was only 3 years old. As they told me their daughter's story, and I saw the pain in their eyes and heard it in their voices, I said to them, "I'm so sorry you are having to go through this. I've been working all of my life to right these wrongs, so you wouldn't have to be here tonight."

                We have to keep fighting for change. I'm not up to it now, so I rely on you and your generation to take up the cause. And I know you are, and I thank you, funnylegs4.

                And, you, Donna, as you never seem to run out of energy.

                It is up to us to change the world.

                SEVEN MONTHS

                Today, it is 7 months, since Jim passed. I am struggling in many ways.

                Yesterday, John and I completed another legal task related to Jim, and I mentioned that today would be 7 months since Jim passed. He replied, "If you had asked me how long ago Jim had passed, I would have answered 3 or 4 months."

                I responded, "I would say, 'Yesterday.'"

                He agreed. Then I said, "Just think of the flurry of all that has happened in the last 3 1/2 or more years, John. It all comes down to the finale, but we're still hearing the orchestra."

                As always, we shared our memories of Jim, Jon, and John's mom and family. There is never a lull in our conversation.

                So many times, before Jon and Jim left, I tried to imagine my life without them. I could only go so far, because my heart would begin breaking at the thought of losing them.

                Now, Thanksgiving and Christmas approach, and I'm trying to determine how I will cope with the holidays. I expect many moments of sorrow, but I will attempt to hold it together, so I can keep functioning. It is a delicate, precarious balance.

                To you and all of our family here and your loved ones, I send prayers, positive, healing energy, and peace.

                Love & Light,



                Rose

                *Virtual Hugs Are Germ-Free!
                Hi Rose,

                Amen to “I have zero tolerance for injustice, inequality, and discrimination. Toward anyone for any reason. We are all human beings. We were placed here for a reason. We all have value, worth, and rights. Even though we have differences, we have more similarities. “ Same here!! I think the interesting thing I learned in genetics is how little difference there is between human beings down to the cellar level.

                You need to read Judith’s book when you get the chance. It’s amazing! Yes I know you did what you did so my friends and I can have a better life and I am grateful. I will always continue to be an advocate and I mentor others who will continue the same work until one day it’s no longer needed. Here’s an update on my advocacy Only registered and activated users can see links., Click Here To Register... You’re welcome. I only ever set out to be a creator and I found advocacy was needed because disabled lives are still devalued in society. Your work certainly made my life easier.

                7 months, wow! Where did the time go? I pray you manage the holidays as best you can.
                Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                Comment


                  #38
                  ((((((Hugs To All)))))) ~

                  funnylegs4 ~

                  What a great turnout for your online presentation! You certainly covered many relevant and important issues. Congratulations! How I wish we had had the internet in the 70s and 80s.

                  When I think about all of the things I've been through in the last 7 months, I know where the time has gone. Restoring our home, reorganizing, sorting, attending to never-ending legal issues, losing my dear friend to ALS, enduring all of the "Firsts", losing my internet connection and then getting it back with a simple fix, changes of all kinds. Nothing is or ever will be the same for me.

                  John joked that in a couple of decades, we might get it all sorted out.

                  Were it not for COVID-19, much of this would be accomplished by now. But that put a wrench in the works for me. Not only am I a Senior with significant effects from RA and probably osteoporosis, but I am grieving for my husband and children.

                  Grief is the Number One Stressor of all stressors, according to my extensive research after Michael passed. I virtually met thousands of grieving parents on forums, and the majority of them had health issues after losing their children. Many of them major issues, like a heart attack, or a neurological disorder, or cancer.

                  So, grief bumps me up even higher in risk of getting and dying from COVID-19. And the fear of that risk increases my stress.

                  These 7 months have ground me into a pulp in many ways. So, I strive to be determined and persevere. I depend upon God's Divine Intervention and the guidance from Jim, Jonathan and Michael to see me through these dark days.

                  This morning, I ventured out for a 1/2 mile walk. It was painful, but I made it, and I felt a little better afterwards. I can only do what I can do, and that is my best.

                  Sending prayers, and healing, positive energy to you and to your loved ones, and to all of our family here and your loved ones. May we find our way together through these very difficult 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


                    #39
                    Originally posted by Earth Mother 2 Angels View Post
                    ((((((Hugs To All)))))) ~

                    funnylegs4 ~

                    What a great turnout for your online presentation! You certainly covered many relevant and important issues. Congratulations! How I wish we had had the internet in the 70s and 80s.

                    When I think about all of the things I've been through in the last 7 months, I know where the time has gone. Restoring our home, reorganizing, sorting, attending to never-ending legal issues, losing my dear friend to ALS, enduring all of the "Firsts", losing my internet connection and then getting it back with a simple fix, changes of all kinds. Nothing is or ever will be the same for me.

                    John joked that in a couple of decades, we might get it all sorted out.

                    Were it not for COVID-19, much of this would be accomplished by now. But that put a wrench in the works for me. Not only am I a Senior with significant effects from RA and probably osteoporosis, but I am grieving for my husband and children.

                    Grief is the Number One Stressor of all stressors, according to my extensive research after Michael passed. I virtually met thousands of grieving parents on forums, and the majority of them had health issues after losing their children. Many of them major issues, like a heart attack, or a neurological disorder, or cancer.

                    So, grief bumps me up even higher in risk of getting and dying from COVID-19. And the fear of that risk increases my stress.

                    These 7 months have ground me into a pulp in many ways. So, I strive to be determined and persevere. I depend upon God's Divine Intervention and the guidance from Jim, Jonathan and Michael to see me through these dark days.

                    This morning, I ventured out for a 1/2 mile walk. It was painful, but I made it, and I felt a little better afterwards. I can only do what I can do, and that is my best.

                    Sending prayers, and healing, positive energy to you and to your loved ones, and to all of our family here and your loved ones. May we find our way together through these very difficult times.

                    Love & Light,



                    Rose

                    *Virtual Hugs Are Germ-Free!
                    Thanks so much Rose! The internet is indeed a blessing for the disability rights movement in 2020.

                    Keep doing your best and all my prayers to you. I had a nice thanksgiving and I hope you did too despite the grief. I found out Zoom is adding free calls for more than 40 mins over Thanksgiving. :)
                    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                    Comment


                      #40
                      I hope everyone had a nice Thanksgiving here. So different but ok. My son and daughter came for dinner and we enjoyed turkey, mashed, squash, greenbeans, and corn. Kathleen even had a small glass of her favorite drink... "apple soda" she calls it (hard cider LOL).
                      Rose, I'm sure this was a difficult one for you but I hope you were able to recall all the good ones you had with your lovely family and be at peace. I hope you've been able to get your walks in... I really do miss my walks and taking Kathleen on bike rides. I'm hoping when I get used to this cold I'll get back to it and just bundle up and do it. It made me smile when you said " I can only do what I can do" I try to remind myself of those exact words a lot. I have several friends who are teachers, and this year I find myself reassuring them ( I know they're amazing teachers and really care about their students) "you can only do what you can do". I can't tell you the times I've used that phrase this past year. They worry that they're not reaching their students because of the new covid teaching models. I know they're doing their best but you can't be in their home making sure they're connected completely.
                      We started putting out some Christmas lights yesterday while it wasn't bitter cold.
                      Praying all my friends here stay safe and healthy.
                      Mary Grace

                      Comment


                        #41
                        ((((((Hugs to All)))))) ~

                        funnylegs4 ~

                        How good to hear that you had a nice Thanksgiving.

                        Tonight, I will finish the leftovers from my feast of Field Roast Celebration Roast, mashed potatoes and cauliflower. As expected, it was a difficult day, but I tried to focus on the freedom Jim, Jonathan and Michael have now. I reflected on our past Thanksgiving celebrations, which was both comforting and sad. That's the thing about memories ~ they can be joyful and painful simultaneously.

                        Stay the course, because there is still so much, which needs to be done to level the playing field for people with disabilities. You are the future, funnylegs4.

                        Mary Grace ~

                        Your meal sounds delicious, and I know it was wonderful for you all to be together. What a treat for Kathleen to have apple soda!

                        All that any of us can do is the best we can do. It's incredible that you are thinking that as I am, and all of the teachers, who are up against a wall with helping their students, need to realize that is the same for them.

                        As a former teacher, I do understand their frustration. A bond is created in the classroom between the teacher and the students, which virtual learning cannot replicate. Children also need socialization with their peers, which COVID is preventing.

                        Our school district allowed students to return to campus two times a week for three hours of classes. A) COVID cases are surging, so why are you opening schools now for physical contact? These are children. They don't know how serious this is. Their masks will be off, and they'll be touching surfaces without washing their hands ... B) How much learning and interaction can actually occur meaningfully within 6 hours a week of personal contact?

                        For years, everything has been pointing to this ~ where the internet and social media became the norm, and real life social interaction became obsolete. What else can we consider social media to be other than contact-less connections? And the current generations are used to that ~ to seeing Grandma on FaceTime, or "distance learning" on their iPads. Most teenagers are never separated from their smart phones. In a way, we prepared for this pandemic to be connected virtually.

                        And, thankfully, the platforms have been provided to allow us to be connected virtually.

                        I'm sure your home is aglow with Christmas cheer with your lights up.

                        My Update

                        Another legal issue arose, which requires that I return to sign additional forms to the ones I signed about 2 weeks ago. It's a 15 minute appointment, and it's only a few miles from my house.

                        For several reasons, I decided that I wanted to drive the van and go alone. The van needs to be driven, and I need to drive, so I don't forget how to do it. I know the last part may sound silly, but I need to feel comfortable on the road. John had 6 guests for Thanksgiving dinner, so I need to social distance from him for at least a week, and being in a car isn't a good idea.

                        John has been wonderful about driving me everywhere, and he's always next to me to steady me when I step up or down a curb or something similar, opens doors for me, everything. Perfect gentleman always, and overprotective of me.

                        The thing is, I could get used to this pampering. I fear that if I depend on him too much, I will lose my independence. Or I will fear that if I don't have him with me, something might happen to me. I'm not ready nor anywhere close to being in that place yet. I know my limitations, and I am ultra careful.

                        Another reason is that John's availability is afternoons, and that is the time of day, when I begin to sag and drag a bit. I would prefer to do business mid morning, as I find that the authorities/officials with whom I meet may be a bit tired after lunch. I totally understand that.

                        So, this morning, I brought in the empty trash bins, and I fired up the van. She started immediately, engine sounds good, and I was able to back out of the driveway safely, although a van was parked in front of the house across the street from me. I consider that an obstacle, but I maneuvered around it. I drove down our main road (a hill) to the bottom, turned into a cul-de-sac, and went back up the hill to home.

                        It was only 5 minutes, but she drove smooth and even, brakes worked well, no alarms went off. When I saw that she has a half tank of gas in her, I thought "We could go a long way. We won't. But we could. We can't. But we could."

                        I love this van. She has served us so well for 22 years. I remember the few trips we took with the boys in the van, before their health declined. They loved it. They were especially fond of the TV in the back just for them. Jim would tie down their wheelchairs, then lift them out of their w/c's and put them in their custom made Captain's chairs. It was cushy.

                        Most of her mileage accumulated from our trips to and from the hospital, when Jim and I changed shifts at home and the hospital. When Jim felt well enough, he drove himself to/from his doctor appointments and infusions. Usually, John transported Jim, but like me, he didn't want to give up driving.

                        We've had a few offers to sell her through the years. Young men, who wanted to turn her into a weekend party van. I always pointed out that she has a wheelchair lift ramp and tie downs for two wheelchairs. She's not for sale. She'll be donated to someone, who needs that equipment.

                        And she will be donated, but for now, I can't drive John's car, because I have to go to the DMV to register it, and I am not going to do that during COVID surging.

                        So, when I climbed in this morning, I told her that I love her, and I know she loves me (yes, it's a machine, but we've been through a lot together). I thanked her for her service, and I patted the dashboard. "We aren't done yet."

                        Of course, the van across the street was still there, when I returned. It took me two tries, but I managed to get her into the driveway, without running into John's car. "We Did It!"

                        And, yes, all of the automobiles/vans I've owned were female. And they had names. Every one of them served me well.

                        To all, I send love, prayers, and positive healing energy to you and your loved ones. Be well, be safe, and be content as possible given the constraints during this difficult time. Keep searching for new ways to celebrate the holidays, and keep as many traditions in your home as you can. Remember how blessed we are to have each other, even if we can't be close physically. The best gift to give and receive this year is being healthy and safe from COVID.

                        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


                          #42
                          Rose, I hope you enjoyed your leftovers. We finished the last of ours last night. We took Kathleen to her brothers house it was really nice out and sunny so she sat outside while we helped him put up some outdoor lights. I'll add a picture of my acrobat husband hanging the lights LOL. Glad you were able to test out your van. I agree that driving some small distances is helpful to keep your skills up. I haven't been driving much since March, there's just no place I go really except local. So when I got on the highway a couple of times it felt so different. Glad she's still in good running condition. I can see why you name her, she's more than just a van to you for sure! She's freedom, she's been great help in some difficult times. It kept your sons safe and happy and she contains those memories of the trips you have shared with them.
                          It's so alarming to see the covid numbers grow. I do hope our governor will take action as he did in the spring and close things up tighter.
                          The teachers I know are such caring and dedicated teachers. They are kindergarten and first grade. I know they are used to making a connection that is more difficult now. One of these teachers is my best friend who i connected with because she was Kathleen's first grade teachers and she was amazing and accepted and included her so well and set an example for the teachers who followed.
                          Stay well stay safe and stay connected...
                          Mary GraceCA655844-0DB3-4CC7-94DD-933440476784.jpgA73F4625-D3A3-4676-8B00-FB6E54E19B30.jpg

                          Comment


                            #43
                            Rose, I hope you enjoyed your leftovers. We finished the last of ours last night. We took Kathleen to her brothers house it was really nice out and sunny so she sat outside while we helped him put up some outdoor lights. I'll add a picture of my acrobat husband hanging the lights LOL. Glad you were able to test out your van. I agree that driving some small distances is helpful to keep your skills up. I haven't been driving much since March, there's just no place I go really except local. So when I got on the highway a couple of times it felt so different. Glad she's still in good running condition. I can see why you name her, she's more than just a van to you for sure! She's freedom, she's been great help in some difficult times. It kept your sons safe and happy and she contains those memories of the trips you have shared with them.
                            It's so alarming to see the covid numbers grow. I do hope our governor will take action as he did in the spring and close things up tighter.
                            The teachers I know are such caring and dedicated teachers. They are kindergarten and first grade. I know they are used to making a connection that is more difficult now. One of these teachers is my best friend who i connected with because she was Kathleen's first grade teachers and she was amazing and accepted and included her so well and set an example for the teachers who followed.
                            Stay well stay safe and stay connected...
                            Mary Grace

                            Comment


                              #44
                              ((((((Hugs to All)))))) ~

                              Mary Grace ~

                              My first question is: why isn't your husband on a ladder?! Oh, the many times Jim was teetering on a ledge or some precarious situation! I would beg him to come down, and he'd remind me that he was a scaffolder.

                              Thank you for not finding it strange that I name my vehicles, and they are all female! With every one of them, I went through numerous crises, as well as miles of good memories.

                              Understanding my concern about entering a building during this COVID surge, the person with whom I need to meet offered to walk out to the van to get my signature. It will be as contact-less as possible that way and save me getting in and out of the van twice.

                              I hope Gov. Cuomo and other governors will start locking down places, because after all of the travel for Thanksgiving, cases are bound to keep surging. This is life and death. We all have to suck it up and do whatever is necessary to protect us.

                              Imagine what it was like in England during WWII. It was horrible. Bombs being dropped on the cities, loved ones going off to fight the war never to return, rationing of food and other supplies, economic disaster, fear. Well, now COVID is a war against all of us around the globe. We must be willing to sacrifice for the greater good.

                              I'm a bit disappointed with our Governor too, Mary Grace. County officials seem to be making decisions. In a state this large, that is not efficient government during a pandemic.

                              Wear a mask, isolate as much as possible, wear gloves, wash your hands even if you wear gloves, social distance, no more big hugs (how I miss those, as we all do), no more parties and gatherings. Until we all agree to do this, this virus is not going to be controlled.

                              God Bless All of Our Teachers, who are not recognized as front line essential workers. When they walk into their classrooms, they are being exposed to any number of germs among their students. And that was pre-COVID. Parents are now recognizing how vital teachers are to their children's future. That is because teachers spend more time with their children every weekday than the parents spend.

                              COVID has turned the World upside down. We have to work together against this virus, as if we were in the middle of a World War, because we are.

                              When it is time for your husband to take down the Christmas lights, please ask him to use a ladder!

                              To All ~ my prayers, love, and healing thoughts are with you and your loved ones. Blessings upon you all, and let's not give up the fight!

                              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


                                #45
                                Rose, I'm thankful that you were able to do the signing more safely. It's so stressful to have to do anything that doesn't quite feel safe. I think you made a very good analogy about being at war. We certainly are right now. The difference is we have so many things to be thankful for and to keep us connected, busy, and entertained. We have plenty of supplies and can order them from our couch. There are so many ways to get extra help where needed as well.
                                I called my husband a "flying Wallendas" . He used a ladder for part of it but there was a large section that had bushes up against the house and the ladder just didn't fit. He was not going to give up. His first thought was to get on the roof but (luckily) the ladder wasn't long enough LOL. He's quite fit for a 60 year old. I told my son to maybe leave them up till next year!LOL.
                                Be well be safe!
                                Mary Grace

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