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Thread: Jim's Journey

  1. #221
    Distinguished Community Member agate's Avatar
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    Sometimes we just need to talk to others, who understand. A la BrainTalk. And, actually, that is the best thing we can all do for ourselves and others. Share. Talk. Commiserate. Support. Cry. Laugh. Bemoan. Complain. Spill it all. This is how we discover that we are not alone.

    And while we never want anyone else to feel our pain, when we encounter someone with the same pain, we are comforted to know that we're not alone in how we feel or what we're experiencing.
    Such an eloquent statement could be a motto for BT.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous

  2. #222
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up

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

    agate ~

    Thank you.

    I've tried to surround myself with support groups, since Jonathan and Michael were born. I was an activist in our communities to move forward with services for children with developmental disabilities, because I knew how I felt, and I was sure every other Mother felt the same way. And they did. And they do.

    In the internet age, I have belonged to many support groups for the various conditions Jonathan and Michael had, and I have learned so much. And I didn't feel alone. Michael had a G tube placed, and I knew nothing about G tubes, then I found a list serve (old days), and I became an expert thanks to the experience of other parents of children with G Tubes and adults with G Tubes.

    As a grieving parent, I learned the importance of connecting with other grieving parents to understand our grief and realize that we are not alone in that grief.

    BrainTalk is a perfect example of how people, who need support from others, who are coping with the same condition, can thrive. And, even when we are not struggling with the same situation or condition, we still provide support and caring to each other. I believe that every living being needs this connection. Herds, flocks, gaggles, packs, etc. "I've got your back."

    That's why we're here. To love and support each other.

    Thank you so much for your loving support to all here on BT.

    Love & Light,

    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  4. #223
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    ((((((Hugs to All)))))) ~


    Mark and I had another two person therapy session, and I had to probe a little to get him to share, but he did. I thought, but didn't say, "You better take advantage of me now, because I won't be here to listen after Thursday."

    After Jim's treatment, we were called in to meet with Dr. S. First, the nurse does intake, asks questions and charts. She was a bit more cheerful today.

    Then we waited for a half hour for Dr. S to come in to tell us basically nothing. He is sweet and caring, but his purview is quite limited to radiation. He listened to Jim's lungs and said that he heard some noise, but it wasn't anything new.

    He said that the effects of radiation can last up to a year. That's a bit disheartening, but we can't do anything about it now, and I doubt that Jim would have changed his mind about having the therapy, even if we knew this prior to starting.

    Jim's appetite and eating issues are not connected to radiation, per Dr. S. He believes that the Ascites is the culprit.

    Jim told Dr. S that all he had eaten in 18 hours was a bagel (Dave's Boomin' Berries bagel, so it does have fruit in it). Dr. S turned, looked at me, his head tilted, and made a face. (He's young. Really young. ) So I told him that Jim had asked for scrambled eggs and veggie ham on toast for breakfast. He ate the toast and left the eggs and ham. So, he was full of bread.

    Jim explained that he thought he wanted that meal, until he smelled it cooking. Then, he got nauseous. I remember that as a chemo side effect. But, I am sure that Ascites or any internal bleeding in his gut could be the cause.

    He did tell us to call, if Jim's coughing changes, increases, or he produces blood more often. For this, he would prescribe steroids. I mentioned that Jim is on a 10 mg maintenance dose of Prednisone, and he responded that he'd likely increase the dose, if Jim has problems.

    It was dark before 5 p.m., when we left. I do not like Daylight Saving Time. It's very hard for me to adjust to the change physically and mentally, and always has been.

    I fell asleep in Jon's recliner about 9:30 and woke up at 1:00. Jim was still awake. He said I had less sleep apnea noise and snoring, but I did grind my teeth a little. "It's a wonder I have any teeth at all," I said, as I climbed the stairs to go to bed.


    I couldn't get back to sleep, as often is the case. Sometime after 3:00, I heard Jim coughing. He was in the downstairs bathroom, and he sounded like he was about to vomit. I ran down to check on him, and he had just coughed up a good size Lugi (clump of mucous) and a blood clot. He felt much better, and he was able to go back to bed and have a breathing treatment.

    Jim said he had about 1 1/2 hours of sleep. I guess I did too, while in bed. But I had had more than he did. He did nap for 3 hours yesterday afternoon.

    More About Food

    After my walk this morning, Jim announced, "I think I could eat a pancake today. Sprinkle some raisins in the batter. Top it with diced peaches/half the juice, and no syrup. I think I could eat that about 10:30 this morning."

    So, at 10:30, we had pancakes. He ate the whole pancake and fruit. He didn't want to risk the other half pancake waiting for him.

    Tonight, he wants an Amy's pot pie, so that is in the oven. I'm just grateful that he is eating.

    I promised him that once we have our regular life back, I will diligently cook fresh veggies for us. I'm not eating well either, and we both need good nutrition. But I'm so tired at the end of the day, when we get home, and my back is blazing, I just don't have the energy to cook.

    This morning, I threw out a bowl of baby red potatoes, which I had peeled and were soaking in water. Two weeks in the fridge. Just waiting for Jim to have the appetite and space in his gut for me to cook them. Every evening, I asked him if he wanted me to make them, and he would answer, "I just want soup."

    I have thrown out so much food in the last month, because things go past their expiration date. So, now I'm buying less, because we are eating less. People are starving and would love our food, and that breaks my heart, when I throw it out.

    In The Room

    Gail and Mark were there, when we arrived. Jim sat down, and I signed in for him. Then we started chatting.

    Gail shared about her treatment and showed us the rad rash around her neck. She does look better, and she is eating better and taking all of the creams and meds she has now that she is no longer working. This is the first time that I've had to talk with her, as she usually goes back to the dressing room to change into a gown.

    So, Jim and Gail walked to the dressing rooms together chatting away, and then Mark and I began our conversation.

    Today, I shared with Mark:

    How Jim overcame his cancer setbacks, including being on 3 liters of O2 in May and told by Dr. K that hospice was near.

    How Jim is at peace with death and unafraid of dying. He often remarks on Jonathan's and Michael's peaceful expressions and smiles, after they passed. He knows the beauty awaiting us from our boys' graceful passing.

    How wonderful John is, who has stepped in as our son and Jonathan's brother in every imaginable way. Our time with him every day has been a healing balm, as he drives us to and fro. It's the sum total of 20 minutes, but it is so precious to us.

    Mark thanked me for sharing our experiences, and he said, "It's a blessing to hear about your life. It's been so hard, I know. But you both seem to have such a good grasp on what life and love are."

    Then, Jim appeared after only 15 minutes. I guess the sessions are shorter, because Dr. S said the doses are now a bit higher. We chatted a little more with Mark. Jim said he and Gail were "having a laugh about all of this, and you know, that's healthy for us. We need to do that."

    I told Mark that I'd bring in photos of Jon and Michael on our last day tomorrow, and he smiled, "Oh, we would really love to see them. Thank you."


    Our last day of treatment, and Jim will "graduate." I wonder what surprise awaits him. Balloons? A Certificate? Tickets to the Dodgers' Opening game next Spring?

    The technician told Jim that he will be seeing Dr. S tomorrow after treatment, so another long day's journey into night. That's fine. He is thorough, and he cares. Dr. S is so young that Jim calls him by his first name. That's how he introduced himself to us. Not "I'm Dr. S." He said, "Hi, I'm First Name Last Name! Glad to meet you!" So, Jim calls him by his First Name. I don't. I call him Dr. S.

    And Dr. S is cool with whatever we call him. I think we amuse him a little. That's good. He knows our story from my little visit with him. He gets it. In his head, he's thinking, "Elderly couple, very loving, devoted, cared for two sons with disabilities, complicated medical issues, who have passed, grieving, sense of humor and a fair amount of medical knowledge and lots of experience."

    He listens closely. He's learning. And every patient he treats is training him.

    I love him and want to adopt him as our grandson.

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

    Love & Light,

    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  6. #224
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Exclamation Graduation Day!

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

    IT'S OVER!!!!

    After watching the tragedy unfold today after the Santa Clarita High School Shooting, Jim and I tried to gather our energy to look forward to the last day of radiation.

    As soon as we opened the doors and climbed in, John said, "Hey, it's your last day! Congratulations!"

    Jim and I profusely thanked him for standing by us, for transporting us everyday, and just being John. The best part of these 15 treatments was seeing John, chatting with him for a grand total of 10 mins to and 10 mins from the medical complex.

    Oh, and, 3 of those days, his daughter transported us and that was a joy to get to know her better. Now, she knows us too and maybe feels more comfortable around us. I remember, when John brought her over to meet Jonathan for the first time, and she was shy and wanted to show us all respect.

    When she walked into Jonathan's room, and he smiled at her, she realized it wasn't as scary as she thought it might be. She stood a little away from him, because John had cautioned her about our concern for germs. But when he reached out to her, she looked at me, and I said, "He wants to hold your hand, if that's okay with you." She smiled, said, "Sure," and took his hand. They talked a little about sports.

    She came with her dad a few other times to see Jon, then she would go out to the car and go on social media, while John helped us turn Jon.

    In April, she also transported me to the hospital and picked me up, when Jim was admitted. John's wife picked me up from the horrible acute care facility. Then I busted Jim out of that joint forever that night with an ambulance.

    How blessed we are to have John and his entire family caring for us and helping us in so many ways.


    The room was empty and quiet, when we entered. Where was the fanfare? The ticker tape? The band? The parade?

    Within a couple of minutes, the sweet, cheerful technician opened the door, "Are you ready for your LAST treatment?" She smiled.

    A few minutes later, Gail and Mark entered. I didn't get to speak to Gail as she went straight in to get into her hospital gown. Mark said down in his usual seat, and we began our therapy session.

    Gail is a caregiver for elderly people, who have a terminal illness. Last week, she quit her job to concentrate on her health. Since then, she has improved tremendously. I said to Mark, "The care she has been giving to others she is now giving to herself."

    I shared about our experiences with the hospital, and he couldn't fathom 45 days here in ICU. I'll bet that if I counted up the number of weeks we spent in that hospital with Jonathan and Michael in the last 30 years, it would equal a year or years.

    I told Mark that the hospital chapel is my church, because I have spent many hours on my knees praying in that gorgeous chapel. And that is where we were given special permission to hold Michael's celebration service, complete with the releasing of doves outside, before the service. Believe me, lots of hospital officials were involved in granting us this honor.

    I told him that I was there so frequently that the cafeteria gave me an employee's discount! He laughed. And I remembered a troubled woman next to me in the cafeteria sighing to me that she had been there with her loved one for 3 days, and she was exhausted.

    I laughed and shared with her, "I know what you mean. I've been here for 37 days. I'm getting tired of the cafeteria food."

    She just looked at me like I landed from Mars. "How is that possible? How can you do that?"

    "He's my son. I'll do anything for him. Even eat this terrible food everyday. But, this is a shorter stay so far than the last one. That was 45 days. I'm hoping we'll be able to go home soon, because this food, as I said, is not that great."

    Mark said, "Wow! You gave that lady, and now me, a different perspective. I mean, I'm getting impatient with just a day or two in the hospital with Gail, after surgery. Thank you for sharing all of this with me. This is such an incredible learning experience. All of the people we've met in this room alone, so inspiring, so eye opening, so much reason to feel gratitude."

    Suddenly, Jim appeared. Finished. Done. Over. Smiling. Exhausted. Filled with gas and fluid.

    Jim fist bumped Mark, and announced, "I just hugged and kissed Gail back there as she went in for her treatment, and I told her that we'll keep praying for her and for you Mark."

    We all turned that into a joke. Mark said to me, "Wait a minute! Did he just say that he was hugging and kissing Gail?"

    "Yes, he did." I turned to Jim, "Anything you'd like to share with us, dear? What's going on back there, eh?"

    We were laughing. Jim quipped, "Like either one of us have any energy to do anything more than wish each other health and well being!"

    Then, we showed Mark our photos of Jonathan and Michael, and filled in some more blanks. He looked so closely at them, and said, "They are beautiful."

    Then I told him that when Jim and I leave our physical vessels, our ashes will combined with our boys' ashes, and we'll be made into a living reef to provide nourishment to sea life. "We want to give back to the Earth, in gratitude for all we've received here. It's a magnificent planet."

    Time to call John then, so we said our farewells. Mark asked Jim, "Is it okay if I hug your wife? I mean, you've been back there hugging and kissing my wife, so?"

    Mark and I hugged, and it was bittersweet. We were all a bit tearful. But we said we'd probably run into each other again, and we promised that if we didn't, we would continue to pray for each other. And when we meet again on the Other Side, we'll know each other instantly.

    Before we left, the receptionist ran out with Jim's Certificate of Graduation. We all laughed, because we had been joking about it. She admitted she overheard us, and then we laughed even more. We know they are busy, we understand. But it is still nice to have a certificate to acknowledge this milestone.

    It was hard to say goodbye to Mark. The room was empty, and he was alone. I'm sure he began thinking about all of the wonderful friends he has made in the room, and as he said, "the lessons we learn from each other."


    We saw the ambulance blocking access, so I called John, and he told us to meet him in the garage, where he came the last time this happened. As Jim and I walked to the parking garage, we saw the fire truck, paramedic truck, and the ambulance lined up. I prayed for the person for whom they were called. Of course, vehicles trigger so many memories for me. Over the 42 years we have lived here, I cannot count the number of times those vehicles were parked in front of our home.


    We thanked John over and over, and he kept telling us that he was happy to help us and just wants us to relax and take it easy. He said he'd text and knew that I'd text, and "If you need anything at all, just tell me. I can be here in a flash. If I don't see you in a few days, I'll be here next week to stop by and catch up."

    As the sun was setting, I took the trash bins out to the curb for tomorrow's pick up. A neighbor, who I used to encounter frequently on my walks when it was 9 a.m., was walking down our street. I waved to her, and she ran up to me, her arms open. She said she had missed me, and I explained that I'm walking at 7 a.m. now. My life has changed.

    She asked about Jim, and I told her that it was our last day of radiation. Her husband died of lung cancer about a year or so ago. She knows about Jonathan. She just wants to hug me every time we meet, as was the case today.

    Okay, so now, we've been exposed to the germs of all of these people. But, we can't help ourselves, because love is reaching out to us. And we are reaching out to them.

    Time for me to feed The Radiation Graduate! I hope that he has an appetite tonight.

    Thank you all for your love, prayers, support, and continuing friendship. We love you and pray for you and your loved ones every day.

    Love & Light,

    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  8. #225
    Distinguished Community Member houghchrst's Avatar
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    Congratulations on that last treatment! Now maybe for a breather. Still praying and sending out good vibes to you all.

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  10. #226
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Debriefing

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

    houghchrst ~

    Thank you so much for your prayers and good vibes. We return them to you and your family.

    We are looking forward to a break and relaxing. While going in everyday for treatments was tiring, we did benefit from the socialization and getting out. And Jim benefited from walking.


    Today, Jim felt better than he has for awhile. He was able to eat a pancake with raisins and diced peaches. He is drinking his Orgain shakes, full of nutrition. For dinner he had a beet and egg salad sandwich and a bowl of Amy's No Chicken Noodle soup. That doesn't sound like much, but for him it's a big improvement.

    Nancy visited today, and, as always, it was wonderful to see her. She told Jim that he looks good. I had taken his vitals for her, and she was pleased with them.

    I made decaf espresso for Jim and Nancy, while we chatted and caught up. She admired Jim's "Graduation Certificate." As usual, we laughed and teased and joked around.

    We discussed Jim's Ascites. Nancy said that she's never heard of a continuous drainage bag for Ascites. She posited that it might not be a good idea, because you need some fluid in your gut for digestion and to go to bowels and bladder. Excellent point.

    Nancy suggested positioning, using a wedge against which Jim would put his feet, and a pillow under his knees. We tried it, and Jim said it was comfortable. Later, he discarded it, because he was too cold and needed to be under his covers. Then, he took a nap. We'll try it again tomorrow.

    At least Jim finally had clean sheets, as I changed them this morning.

    We went over Jim's supplies, so I could order more. Then we discussed the blood draw. Jim didn't want the coagulation panel, and he has that right. She said it probably was not necessary, since he stopped bleeding within less than 24 hours. And his coagulation panel from last month was normal.

    Dr. K had ordered a CBC and Basic Metabolic Panel. He usually orders a Comprehensive MP, which gives liver function, and we need to see his liver function, as he as Ascites. Nancy grinned, "Dr. Rose ordered a CMP rather than a BMP. I agree." I'm sure Dr. K would agree too. We drew it, so we can't change it now.

    He has hundreds of patients. I have one.

    Nancy told me that in January, she might be going down to 1 day a week instead of 2 days a week. "But, I'll always be here for you guys. Always."

    A few nights ago, Jim told me that "when the time comes, I want Nancy to be here with us." I am sure she will be, but he needs to tell her that directly. Not me, him.

    I walked Nancy to her car, and she paused to scroll through her phone to find a photo of her puppy. Adorable, of course. But as she was scrolling, I saw a familiar photo. I said, "That looks like a knee. That looks like Jon's knee."

    Nancy said, "It probably is. I have lots of photos of Jonathan on my phone. I don't want to delete them."

    "Then don't delete them, Nancy. He loves you so much. And you love him. Keep the ones that help you, but the ones of his wounds, let them go. He's free now. No more pain. No more wounds."

    We hugged, and Nancy took off with Jim's blood.

    I watched her drive away, tears flowing, a fire in my back and bones, sorrow in my soul, fear of the future coursing through me. "What's next?" I thought.

    It doesn't matter. We'll deal with it. Like we always have and will.

    Thank you all for your love, prayers, support and friendship.

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

    Love & Light,

    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  12. #227
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    Dear Rose,
    What's next? is the question we all ask ourselves, but it's especially urgent in your family. What a series of stories from the waiting room! I had a message here that said 'click to restore content' and somehow I clicked, it appeared - long letter to you half written - then I browsed to make sure that I hadn't already posted it somewhere (I hadn't) and now it's disappeared. Oh well. I wanted to tell you that I am glad Jim is eating again, even if it's not much. I am glad that the people in the hospital waiting room had the blessing of your presence, your listening and of hearing your inspiring story. I wish you(and Jim too) could sleep better! It's all so exhausting. But at least the treatments are finished so you don't have to get dressed and out the door. Like you said though, the walking was good for Jim. Hopefully he can keep that up. We are all fine here - Nick has a loaner mattress now that is exactly the same as his own - he is comfortable and happy! I'm going out today to visit and chill out with him. I think we'll probably start making Christmas gift lists. I will ask Nick if I can take some photos to share here - sending love to you and everyone here at Braintalk 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:

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  14. #228
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Courage, Determination, and Good Nature

    ((((((Donna))))))) ~

    So happy to hear that Nick has a loaner mattress and is comfortable again. Last year, right before Thanksgiving, Jonathan's mattress pump quit. It was so stressful to get a replacement, but we did it.

    I hope that Nick will allow you to post some photos. I notice that the one in your signature is blurred. Also, Nick and Natalie are forever young at 26 and 22!


    Jim's appetite is slightly improved, but the Ascites interferes in every way. Today, he's been trying Nancy's positioning with the wedge elevating his feet, and a pillow under his bent knees. He says he's comfortable in the position and does feel an easing in his gut. The wedge is now under the covers, so he is staying warm.

    He wears flannel pjs, with a t-shirt, has 2 blankets and a heating pad on top of him, and the heater runs at night at about 76 degrees, but he still gets cold, when he gets up to go to the bathroom.

    I think he told everyone at rad onc that I bought him the sweatpants and fleece shirts for his radiation therapy. It was amusing to see all of the patients entering wearing shorts and summer clothes, as Jim sat shivering in fleece. They were dressed for California, and Jim should have been sitting in front of a fireplace at a ski lodge. Or, your lake cottage!

    Poor guy, he can't help it that he's cold. He has low WBC, RBC, and he barely eats more than a mouse. Today, he had a bowl of sweet pea soup and a slice of toast, and 3 slices of Amy's mushroom and olive pizza, to which I added sliced fresh tomato and more olives. That's not enough!! But he's also trying to drink an Orgain shake a day. There is only so much room in his gut.


    I told him that I would email Dr. K about another gut drainage order, because Jim has been insisting that he wants to do it again. He knows the fluid came back in less than 24 hours, but he's hoping for a different result. Later in the day, Jim said that he wanted to see how well he does with Nancy's positioning, before I request Dr. K's order. So, we'll give him a few days and hope for the best.


    We will miss our friends from The Room, and we will always remember and pray for them. The Graduation Certificate says it all, as it rewards the graduate for "courage, determination, and good nature." These folks have truckloads of all of that and more. We bonded so quickly and shared so much. Three patients are probably now taking Orgain. We had opportunities to teach, to comfort, and most of all, to love.

    And everyday, we brought Jonathan and Michael with us. We shared with other patients, as well as with Dr. S and staff, our lives with our sons. Their stories are certainly ones demonstrating "courage, determination, and good nature." This is their legacy, and we want everyone we meet to know about them, because they give everyone strength to face their own challenges. When they hear about everything that Jonathan and Michael endured for their entire lives, they are inspired to go the distance. They can also see that we are inspired by our sons to go the distance.

    When I recounted to Mark how Jim went from 3 liters of O2 on May 31 to no O2 two weeks later, and Dr. K had presented us with the "Hospice Chat," Mark was amazed. I said, "But look at our children. Jim says that he can do it, because he had a long life without disease and disability, and they didn't, but they lived and loved fully."

    Mark said that he felt blessed knowing our story and that we do give him hope and strength.

    Every one of us here has lived an inspiring life filled with "courage, determination, and good nature." We wouldn't be here reaching out to each other, supporting, loving and praying for each other, if we didn't have those attributes. Many of us have walked beside each other on our journeys for 20 years, and we know the vital importance of our support, love, and prayers in continuing on our journeys.

    "In the end, the love you take is equal to the love you make."


    I rested today, so tomorrow, I will order from Instacart. Pay bills. Do laundry.

    I may consider attempting to buy us a car, now that we have a break, but it's the holiday season, so I don't know how that will go. I really would like John here, with Jim, to help me do this, so we'll discuss that with John.

    Future Appointments for Jim: Dr. K on 12/18; Dr. S in 6 weeks (I have to make that appointment); possible gut drainage, but again, holidays, may not have an opening until after T-giving. Nancy blood draw and reassessment for services 12/13.

    That's why I'd like to get the car, so we don't have to depend on John during the holidays.

    The Holidays. This will be very difficult for us, and it already is. Thanksgiving and Christmas without our beloved boys. I don't know whether I have the energy to decorate, putting it up, taking it down and packing it away. I don't know which will be worse: not decorating or decorating, in terms of painful memories.

    The Holidays mean putting on my "I'm fine, and we'll get through this" mask, pretending that I am fine. I'm not fine. I will never be fine. However, I am very adept at moving forward and coping on the outside.

    When I ask, "What's next?", I think about Jonathan's sudden passing, and then 5 days later taking Jim to ER with severe dehydration and nearly losing him. These unexpected events constantly remind me that I can never really know what is next. I must be prepared for anything. How do we prepare for "anything?"

    Thank you, Donna, and all of our wonderful friends here for loving, supporting and praying for us. You all inspire us and give us hope and faith. We love you and pray for you and your loved ones.

    Love & Light,

    Last edited by Earth Mother 2 Angels; 11-16-2019 at 06:46 PM.
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  16. #229
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    Rose, as you know there is no right or wrong way as far as Christmas goes. I remember my first one. Friends, thinking they were helping, went to the mountains to get them a fresh tree and without asking bought one for me. So, there I was and because of them I felt that I had to get everything down out of the attic and decorate that tree. I did it and put it in my living room and I stayed in the din. It was probably turned on one time and that was when they came by. However, when it was over I was stuck with having to undecorate that darn tree and get it out of the house since it was live. Would hate to go through that again. But you have Jim and he has you, so that would make some difference. As it comes closer to the time you will be able to make that decision. Personally, I would have put a wreath on the door, set a few things out and forgot about as much of it as my mind would allow.

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  18. #230
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Virginia)))))) ~

    Your friends were well meaning, of course. But they didn't realize the depth of your grief or consider the extra effort you had to go through to decorate and remove the tree. It would have been so nice and thoughtful of them, after giving you the tree, to offer to go to your attic, bring down the decorations and help you decorate. Then, after the holidays, they could have done the reverse. I'm so sorry that you had to go through all of that.

    You are right that I have time to make the decision, and it will be dependent upon how Jim is, and how I am feeling.

    There is trauma associated with the decorations, as well as sadness that our boys aren't here with us to enjoy them. Although it was April, when Jonathan passed, many of the Christmas decorations were still up. Jim had been in and out of the hospital so many times from January to April that I just didn't have the energy to tackle taking them down. And, as everyone who has been reading these threads, knows, it took me some time after Jonathan passed to take them down.

    Sometimes I wonder what the firefighters, police, and mortuary attendants thought when they saw Christmas decorations still up in April. Of course, none of them asked. They saw Jonathan, and we explained all of his issues to them. They saw Jim, and we explained his issues to them. Perhaps they realized that I just didn't have the time to take down Christmas.

    Our home is literally falling apart, and they saw that too. These are real life crises, which prevent us from following the norm.

    What and when to do all of the things, which need to be done to our home, weighs heavily upon me all of the time.


    Repositioning Jim in his bed is working well, and he is feeling relief in his gut, and he is more comfortable eating. He does have an appetite now, so he had his cereal feast, sans prunes as he says they make him feel full, a peeled, quartered apple, and soup.

    I ordered from Instacart today, so he has asked for a salad with all of the goodies, and baked potato with veggie bacon, coconut spread, and a sprinkle of grated cheese for dinner. It may not sound like much, but it's a lot for him.

    Jim suggested that we retry the wedge under his head/shoulders, which he had discarded months ago. I couldn't remember where it was, until I walked into Jon's room. I put it at the head of Jonathan's bed, under his Lakers comforter.

    I could hear Jonathan whisper, "Dad needs this now. I don't."

    So far, Jim reports that he is comfortable, which is a blessing.

    We are so grateful for Jim's progress, and we pray that it continues. No matter whether I put up our Christmas decorations, no matter what we eat on the holidays, even if it's toast, I am thankful that we are still together. I am thankful for every day we have shared together and every day we will share together.

    Right now, I want and need this to be our main focus. Even when it isn't a good day, we are together.

    Thank you so much, Virginia, and all of our wonderful friends here, for your support, guidance, love, and prayers. You know that our prayers are with you and your loved ones always.

    We love you!

    Love & Light,

    Last edited by Earth Mother 2 Angels; 11-17-2019 at 06:01 PM.
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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