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    Rose

    Dear Rose,

    I was thinking of you today and wondering how you’re doing. Hope all is well and please give an update when you can.

    Marcie

    #2
    ((((((Hugs to All)))))) ~

    Marcie ~

    Thank you so much for thinking of me and reaching out to me. I think of you and pray for you and your boys.

    I am saddened by the lack of activity here on Child Neuro. I stopped posting, because I didn't want the forum to be "all about me." I tried to generate more participation, but it didn't seem to work.

    Generally, I am holding up and coping fairly well. I am functional. I do what needs to be done.

    I wouldn't be where I am now without John's help. He is a Godsend in every possible way. He is patient with me, and he listens and understands me. And his help with everything in my home and dealing with legal issues has been incredible.

    Recently, he and his friend, who is a fencing contractor, spent a few weeks rebuilding the crumbling brick retaining wall in my front yard. John didn't know anything about masonry, but he just followed his friend's lead, and working a couple of hours at a time, they finished the wall. It is beautiful.

    They plan to replace my gutters next. This is all about needed improvements to enhance the front exterior (curb appeal). They want to do as much as they can to save me on contractor's fees for what they can't do.

    Of course, there is much to do inside and out. Things we weren't able to do, after Jonathan's health began to decline, and we were in an out of the hospital with him for many years. And then Jim was diagnosed with cancer. So we need a complete home makeover.

    It is overwhelming, so I am taking it as it comes, and as I am ready to deal with whatever "it" is.

    Our home is filled with memories, and every change, everything we throw out, everything we intend to donate someday, is a reminder of what we had then.

    I know what needs to be done. It's just very wearing on me to do it all.

    I am sure you understand. We just take each day as it comes, and we do our best. It's all we can or need to do.

    How are you, Nick, Brian and Jonathan? What is happening in your world? I send you all healing, strengthening prayers, and positive energy.

    Thank you again for reaching out to me, Marcie.

    I love you ~

    Love & Light,

    ❤️❤️❤️❤️

    Rose


    *Virtual Hugs Are Germ-Free!


    THANKS!




    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.

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      #3
      Thanks for the update Rose!
      Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
      My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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        #4
        Rose, I'm so glad you have John's help with some of the repairs. We're doing the same... Trying to catch up on the thins that we haven't had the time or money to do. Our home is paid for now so there's some money to spare to do small repairs and my husband has had more time off. He's hoping to retire maybe next year. Stay well!
        Mary Grace

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          #5
          ((((((Hugs to All)))))) ~

          funnylegs4 and Mary Grace ~

          Thank you for posting! It's wonderful to see you here!

          Here are the highlights of this year for me:

          New computer; new modem; two new cell phones, and now I have an iPhone; new cables inside and out, when I lost the internet; technological problems (Sim cards) with the iPad and iPhone, which required John's assistance, and he takes them to his house, because he has WiFi, when they need updating.

          I had my giant sugar gum eucalyptus tree trimmed, which was initially a big ordeal, but ended up being a very good experience. This tree was planted by my dear friend and her siblings as a sprig in 1980. My friend passed last year from ALS. The tree is sacred to us, as it has been a presence through many major events in our lives. I am so grateful it is still standing.

          Fully vaccinated with the Pfizer vaccine by the end of July. I had no side effects thankfully.

          I finally started cooking fresh meals again, after a long patch of frozen foods, soups, sandwiches, etc. Today, I made spaghetti sauce with an organic jarred sauce, sauteed sweet onion, green and red peppers, baby bella mushrooms, celery, asparagus, garlic, basil, parsley, and Chef's Shake, and chopped Field Roast Italian sausage. I enjoy the aroma wafting through the house.

          While I am fully vaccinated, I am still afraid to go out in public. There are so many things, which I need to do, but I am reluctant until COVID wanes in my area.

          John continues to be my rock, and he happily, willingly, voluntarily does everything for me, which I can't do. He visited yesterday to sort out my automatic sprinkler system, put the new Sim card in the iPad, and start up the van. We had no success on any of those things, but he will figure them out for me. I don't know where I would be now, without him in my life.

          Please know that I love you, and that I pray for all of you and your loved ones. No matter the length of time between our conversations, I think of you and send you all healing, positive energy.

          God Bless You ~

          Love & Light,

          ❤️❤️❤️❤️

          Rose

          *Virtual Hugs Are Germ-Free!


          THANKS!


          P.S. ~ Before and After Photos of my tree:

          Screen Shot 2021-09-03 at 3.38.25 PM.png

          Screen Shot 2021-09-02 at 5.26.42 PM.png

          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


            #6
            Rose I'm glad to hear you're back to cooking meals for yourself. YOu've always cooked such yummy sounding healthy meals! We're all fully vaccinated as well but like you I'm still very careful. I wear my mask everywhere still. I have to tell you going to my son's wedding was out of my comfort zone and a little unsettling! We don't visit indoors with anyone even of they're vaccinated. What a lovely tree I'm so glad you were able to prune it and keep it healthy. Stay well my friend! Look forward to hearing about your yummy meals!
            Mary Grace

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              #7
              ((((((Hugs to All)))))) ~

              Mary Grace ~

              Cooking for myself just wasn't appealing to me for awhile, but I realized that I was missing some very tasty meals and fresh produce. I cook enough for a family, and then I eat leftovers.

              My aunt invited me to join the family for Thanksgiving. I haven't seen my family for about 18 years, because they live about 1 1/2 hours from me, and with Jonathan's health deterioration over the years, we just could not travel that long. Also, the holidays are during flu season.

              Well, now it is COVID and flu season.

              I don't know how many people will be attending, but my aunt and uncle have 4 daughters, 3 with spouses, 7 grandchildren some with spouses, and possibly a few great grandchildren. One of their granddaughters is hosting the dinner. She lives slightly closer to me than my aunt and uncle.

              While I would love to see all of them, I am conflicted. My uncle, who is only 7 years older than me, has Alzheimer's, and we grew up together. He is more like my brother than my uncle. We used to chat on the phone monthly, until he began declining.

              They are probably all vaccinated, except for the youngest children. Nonetheless, I am in the middle of my second dose, and I won't be able to get a booster until early January. The Pfizer vaccine begins waning after 2 months, and I have two auto immune disorders, so I have no idea what the efficacy is for me.

              If the weather is nice, we might sit outside, but dinner would be served inside. Then masks come off.

              As a vegetarian, there wouldn't be a lot for me to eat at the feast, knowing the history of Thanksgiving dinner in my family.

              Transportation is another concern for me. I haven't driven the van since last November. I'm sure I can still drive it in an emergency. But, I haven't driven farther than 3 miles from my home in nearly 2 years. I am not used to traffic, and I can imagine getting lost trying to find my niece's home. Also, I can't drive at night and haven't been able to do so for many years.

              I won't call a taxi, Uber or Lyft. Studies have shown that they are as filled with germs as airplanes. Also, I am an elderly woman alone with a stranger. Nope. Never happening in my world.

              I've also thought about the instinct for all of us to hug each other, when I walk in the door. We can't do that. John and I often bemoan the fact that we can't hug each other as we did every time we saw him before COVID. Jim, Jon, me, we all got hugs.

              So, this weighs heavy on me. But, I just can't envision me being able to go and be safe. I would be as unsettled and out of my comfort zone, as you were at the wedding.

              I will explain all of this to my aunt, who I'm sure will understand. But, that doesn't make it easier for me to know that I am once again missing out on a family gathering, because some kind of infection (flu) (COVID) is going around, and that I am, as always, vulnerable.

              How is your mom doing, Mary Grace? Prayers for your entire beautiful family always ~

              Blessings to all ~

              Love & Light,

              ❤️❤️❤️❤️

              Rose

              *Virtual Hugs Are Germ-Free!


              THANKS!


              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.

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