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Thread: Jonathan Received His Wings Today

  1. #121
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    Quote Originally Posted by Virginia View Post
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    Rose, I can't remember if this has come up before but I was wondering if you keep a hard copy of all the writings that you have on here. It is a journal chronicling this journey that you and Jim are on. I hope you have copies of it all for posterity. Hopefully, BT and all of us will always be here, but just in case something does happen I think you might someday in the future want these writings.

    Glad there was a little time with John. I know you enjoy that, and he loves and enjoys catching up with you and Jim.
    I thought of this exact same thing when Donna wrote this
    "I wonder if a disability studies department at a university would be interested in your advocacy paperwork."
    in the other Jim thread!

    Rose you ABSOLUTELY should print everything of value to you on this forum and make copies of everything that was from your disability rights battle. If the website ever shuts down completely you'll likely want it and the disability rights documents etc could be useful to a disability studies program or a Disability History museum. I think people in disability rights are trying to stockpile disability history related stuff like yours.

    So glad John is able to make social visits. I know he misses Jon. I love the photo of Jon! I too an relieved that Jim wants the tests.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  3. #122
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    ((((((Donna)))))) ~

    Thank you so much for your love and prayers. I know you are with us always.

    My life has played in my head like a movie since childhood. There was a time, when I fancied being a scriptwriter. But, I had a mortgage to pay and Jonathan and Michael to support, so I tabled that idea.

    My memories are "scenes." I see them in segments, which lead to other segments, and then the entirety of the experience. And, while I may paraphrase a few words, I essentially remember the conversations I've had.

    I attribute this to my high school education where I learned bookkeeping, shorthand and typing. I excelled, because I could remember everything in dictation. I was able to pay attention to detail. In my later journalism pursuits, this helped me immensely. And in teaching. Actually, it helped me in every aspect of my life.

    It's the replaying of the scenes of Jonathan's passing, which brings me to my knees. I try to find ways to redirect my focus, but images continually work around my tricks.

    Then, there is the present. Promotions for movies being released: "Aladdin" with Will Smith, the Elton biopic, "Rocketman,” the new “Men In Black,” and "Toy Story 4." Jonathan would just love all of these movies. I'd be planning to get these movies for him on Blu-Ray, thinking they'd be released by his 50th birthday in November. I'm hurting anyway, so this kind of thing just stirs the hurt more.

    All that I can do is work through the pain. There are no remedies or cures for this pain. I have to learn to live with it and find peace in my grief. Tall order, which takes a very long time.

    Thinking of you, Jim, Nick, Natalie, Daisy, and your entire family and sending you all our love and prayers always.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  5. #123
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    ((((((Virginia)))))) ~

    Thank you for your suggestion, which does make sense but isn’t feasible for me.

    Much of what I post here, I write in drafts on my old defunct email, then copy and paste it here. I save everything to my Drafts folder. I don't have anywhere to store hard copies! Our office is a cluttered mess, and we have no more filing space. Our garage is chock full of boxes with photos, my written work, odds and ends, as well as Jon's supplies.

    Unless I write and publish a book with all of my posts, there is no posterity for us. None of my remaining family would be interested in keeping/reading all of this or having our family photos. John wouldn't know what to do with it. So, hard copies would just be tossed after I'm no longer here.

    After Michael passed, I did copy all of the posts in the threads I wrote during his final 3 weeks in ICU, and thereafter for awhile. My thought then was to incorporate those posts with Jonathan's story (never thought about Jim having cancer and his story) for a book about them. Our backstory is contained within many of my posts. Maybe I could just print them all and organize them into a book.

    I can do that in my spare time!

    There is so much ahead for me, when I'm on my own, in pulling together the house and it's repairs/remodeling and disposing of so much unneeded stuff. If I'm still functioning after all of that is done, I'll approach my book. I also have a book in the works for grieving parents, which has sat untouched for 10 years.

    You, and everyone here, are our posterity. You have traveled all the miles with us so faithfully, and you know us like we're your own family. You can carry on our legacy by sharing our story with others. I've been at BrainTalk for 20 years. That's a lot of storytelling.

    First, God placed two Angels in my arms, then God gave me the ability to communicate, so I could tell the world about them. And so that I could help other parents of children with special needs, and advocate on behalf of all of us. My purpose has always been brilliantly clear to me. God put me on Earth to be a caregiver and a communicator.

    That is why there are reams of my work in boxes and filing cabinets, and the floor of the office and on several different computers.

    It was wonderful to see John, and we shared a lot about Jonathan, which we all needed to do together. John may have been waiting for the right time, making sure that we were in a better space than when he saw us last. He picked up Jon's photo, and he looked at it with such love and admiration. His heart was full, and he needed to let it out, as well as check on us in our grieving.

    He texted us a Thank You for our “extremely cool” Father’s Day card. He loves golf, so his cards are always golf-themed. I’ll tell him sometime to let me know when he gets tired of that theme.

    Thank you for your continuing prayers, love and support of us, Virginia. Please know that you and your loved ones are in my prayers.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  7. #124
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    ((((((funnylegs4)))))) ~

    I appreciate your enthusiasm so much, my friend, but I don't have the energy to research, package, mail, copyright, etc. to any organization, which might be interested in our story.

    You can't imagine how much material I have from the 70s through the 90s. Documentation for all of the legal research I did, letters I wrote to parents, to legislators, fair hearings documents I filed in binders with tabs and reams of testimony, newspaper clippings from the times Jon, Michael and I were featured locally about budgetary cuts to programs they needed, or my letters to the editor or op-eds.

    Of course, I'm in the midst of grieving for Jonathan and Michael and trying to care for Jim and make the best decisions for him, so now isn't a good time for me to ponder this future. I'm having enough challenges with living hour to hour sometimes.

    Maybe someday, I will be in a place, where I can think about it more clearly.

    I just want to thank all of you so much for valuing my work and our journeys to recommend that we be honored to be in a museum of disability history.

    Let me emphasize that I was just one of a multitude of parents during those years, who fought for our children's civil rights. We didn't have the internet, so we worked harder to stay in contact with each other. Nothing stopped us from networking. Our voices were heard with phone calls, letters, and media contacts.

    So, please honor all of them. They all stood up to discrimination, while also attending to their child's seizures, feeding, medical, emotional, educational issues. Many of the were single working Mothers, as I was.

    And, like me, they lived on the edge of their seats, praying that their child would not die, while preparing for that inevitability.

    Many of them, and their children, have passed, but their dedicated legacy lives on in the laws to protect the rights of people with disabilities today. We were all united and understood each other's path. We walked it together. Just as we do here.

    Thank you. Thank you all so much. Posterity is carrying it forward. That's what we've all been doing here. If BrainTalk ever fades away, we all have what we learned from each other, the love and prayers will never end, and we'll remember each other with gratitude.

    I am so very grateful you are in our lives, and the blessings you bring to us are healing and hopeful.

    We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  9. #125
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    Default Special Moments

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

    It took me 2 days to write my replies to you. It was too long as one post, so I broke them up into three posts.

    This post is about special moments in the past few days.

    MICHAEL’S WATERFALL/POND

    Several days ago, I noticed that the pond was getting low, and that the fountain pump was diminishing. First, I removed algae, which wasn’t too bad, then I lifted out what felt like several pounds of dirt and debris.

    Suddenly the waterfall began trickling down! It has not worked for so long. Jim is unable to attend to the pond any more, and I can only do so much.

    I added more water, and the waterfall stopped. I was disappointed, but Jim said that the silt had settled on the pump again. It may move again.

    The next day, I lifted some more silt out of the pond, and the waterfall began trickling again. It continues flowing still.

    This afternoon, I watched a hummingbird take a drink and quick bath in the waterfall. Hummingbirds are very important to us, as we watched a Mama build her nest from scratch in our neighbor’s tree, feed her babies and teach them to fly in our yard. It’s all on video tape.

    I’ve been praying for signs, and here they are.

    WATERMELON ICE CUBES

    Jim and I watched cooking shows on TV the other day, and one chef made Summer cocktails using fresh watermelon as ice cubes. She processed the watermelon, poured them into an ice cube tray, covered them with saran wrap, froze them, and put them in a drink (in her case, vodka) frozen. As the cube melts, more of the watermelon flavor permeates the drink.

    So, I ordered an ice cube tray and an organic mini-melon with my Instacart order to make these for Jim’s water.

    When John visited, John and I went to the kitchen, and he carved the melon into chunks. I held the plastic bags into which he dropped the melon. Then, he scooped out pieces just above the rind, handing them to me to taste and to take to Jim. John also enjoyed some melon. It was sweet, refreshing and perfect.

    I ran the ice cube tray through the dishwasher today, and I'll get out the Vitamix and puree the melon. The goal is to replace other beverages, like Gatorade, to accompany Jim's water. A melon cube in a glass of water should be very tasty for Jim. And me! Watermelon is also a good diuretic.

    John entertains periodically, so he was looking forward to creating drinks for guests with melon or other fruit ice cubes.

    This was one of those "family moments,” which we so enjoy with John.

    ON MY WALK

    At the end of my walk this morning, I encountered a neighbor, who I see occasionally, and we chat a little. A few months ago, she told me that her husband died of cancer last year, after I had told her about Jim. I had never mentioned Jonathan or Michael to her.

    We talked about the routes we take. She walks all the way down our very steep hill to the city street below us, then back up. That is a hike. I used to ride my bike down and zig zagged through the neighborhood streets to get back up to our house.

    She also walks where there is car traffic. I don’t any longer. I’ve had too many close calls, with people, who don’t respect pedestrians crossing the street. We also don’t have stops signs or crosswalks on our community’s main access road. Also, I can’t and won’t run any longer.

    “You don’t walk as much as you used to walk. Why?” she asked.

    So, I explained briefly that I have been caring for my husband and my son. “My son passed away in April.”

    “At home?” she asked.

    “Yes.”

    Her hand to her heart, and tears in her eyes, “How old was he?”

    “49.”

    She reached out one arm to hug me and said, “And you took care of him all those years. I can’t imagine. I’m so sorry.”

    Then, I told her about Michael and explained their condition in simple terms.

    At this point, I was over my time limit, so I told her I needed to get home to my husband. I’m sure that we’ll see each other again, and now this part is over for me.

    MY WALKING

    I decided a couple of days ago to extend my distance in walking. I felt strong enough after working up to lengthening my distance over the last 2 months.

    So far, I’m doing fine and enjoying changing up my usual views. We have beautiful greenbelts all over, but some are still too far for me to take. And one trail requires crossing our community’s main street and a steep incline. It has the nicest views, and I miss it. I made friends with some of the neighbors there too over the years. Thankfully, they still come down to our side of the golf course once in awhile, so I can see them.

    I ordered a pedometer, so that I can keep track of how far I walk and my time. I used to wear one faithfully, then it conked out, and I didn’t replace it. At that point, I knew how far I was walking.

    I have RA and am sure I must have osteoporosis as I’m shrinking and bent. My only option right now is to keep walking, not overdo it, but keep walking.

    Those are our special moments.

    Thank you all for your love, prayers, support, and wonderfulness. We love you all and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  11. #126
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    Rose, thank you for your post. It was nice hearing about Michael's waterfall. I have my own picture of it in my mind. I have heard of making ice cubes out of fruit such as watermelon. It sounds so good and pretty.

    I was especially happy to hear about your walks. I am so glad you are trying to do this for yourself, and that you are meeting others along the way. I know it takes a lot of determination to keep doing it, but I hope that you will and that Jim's condition will allow you to keep at it. I know things are so hard right now and it really takes a lot to get out there and try to do something for yourself. I started walking shortly after my husband passed away and kept it up for a very long time. I miss it and the outdoor air. I found something out - you can walk and cry at the same time.
    Virginia

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  13. #127
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    Default 90 Days


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

    Today is Friday, the 12th, and it has been 90 days since Jonathan passed.

    Three months without our beloved boy's smile and hugs to greet us day and night. Three months of silence in his room. Without his movies and concerts. Without dancing with him, laughing with him, tickling him, kissing him, holding his hand. Three months without his spa treatments, putting on a fresh tropical shirt, and hugging him, saying, "You smell delicious! And you are so handsome!"

    Every day another piece of my heart is chipped away.

    His room is basically as it was 90 days ago, because I still cannot bear to touch his bed, mattress, or restraints dangling from the sides. His nebulizer is still there, as is his suction machine, the IV pole on which his feeding pump and formula rested, supplies we used for him. When I'm in his room, every image from that morning flashes through my mind, and I'm devastated again.

    Today, I gathered the stack of documents pertaining to Jonathan, as well as the cards, which we received after his passing. I placed them in a large envelope. I don't know what to do with the envelope. But at least it's all together now.

    On my walk this morning, a new neighbor was seated on the bench overlooking the golf course. My left hand was on my lower back, because at this point, it begins aching on my walks, and I try to straighten myself. I said "Good Morning" to him.

    The man, probably in his 20s-30s with a strong accent, said to me, "Oh, your lower back hurts!"

    "Yes, I have arthritis, osteoporosis, and ... I'm old." I smiled.

    "Must be very painful. I'm sorry." He said.

    "Thank you. It's not the worst thing that's ever happened to me, though." I kept smiling.

    "Oh, I'm sorry for that too."

    "Thank you! Enjoy your day!" I said as I began walking away.

    My inner pain far surpasses my bodily pain.

    Three months without our beautiful, sweet, loving, precious son. I ask God for strength to keep going and peace and comfort until we meet again.

    We thank you all for your love, prayers, compassion, friendship and support. We love you and pray for your loved ones and give thanks for the blessing you are in our lives.

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 07-13-2019 at 07:26 AM.
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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