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Thread: Jim's Journey

  1. #261
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Donna ~

    Since we've had torrential rain, I haven't been walking, so I haven't see the lady. I pray that she's okay and wasn't injured.

    Jim is feeling and eating better, which is a blessing. The MOM caused an explosion, so he's cleared out some room for food. Last night, he ate fresh green beans, carrots, and a baked potato with some cheese and chopped veggie ham on it. He's back on his breakfast cereal and fruit.

    Tonight, I was going to make assorted veggies with Tikka Masala and Korma simmer sauces. We were both looking forward to it. However, Nancy texted to say that she is visiting tomorrow for Jim's re-certification for services and a blood draw. I wasn't expecting her until next week.

    I glanced around the living room, and there is stuff everywhere. It is chaos. I ordered a bunch of things for Jim, more pjs, his favorite tea, Attends wipes, and 3 crossword puzzle books. Santa came early for Jim today! All of those boxes needed to be opened and the stuff put away.

    I have been remiss in ordering the supplies for Jim's draw, so I called my friend, Harold, today at the infusion center. Harold is just wonderful. He took back all of Jonathan's cases of unused formula for me, as I had no clue of how to dispense of them. Now, he is serving Jim. He calls me "Ms. Rose." All supplies will be delivered before 8:30 tonight and left on our doorstep.

    Tomorrow is trash collection day, so I had to gather up all of our trash and take out the bins. It's a gorgeous, clear evening, after days of rain. The sunset was magnificent (at least the little part that I could see from our driveway).

    Because I have missed my walks, my RA is acting up, and my back is on fire. All of this stooping, lifting, bending, standing, etc. does a real number on me.

    I keep seeing the image of an elderly woman, in her 80s at least, walking with a walker, a young-ish man next to her to help her, toward the entrance of the medical offices. John was dropping Jim and me off for his radiation, and we just watched this woman struggle with every step. She was so bent over, we couldn't see her face.

    John said, "I hope that is her son or grandson, as it should be."

    Tears welled as I thought, "I don't want to be her." But, I know that is the direction in which I am heading.

    Anyway, that is a long way of explaining why I'm not up to cooking dinner tonight. Not just cooking, but cleaning up. I just don't have it in me, and Jim understands. He also feels terrible that he cannot help me with any of these tasks.

    I'll probably be in pain and exhausted tomorrow night too, because I have to do so much to prepare for Nancy's visit.

    So, Saturday afternoon, as we wait for our Buckeyes to win the Big 10 Championship game at 5 p.m., I will make Indian food. We can eat, while we watch the game.

    I'm so bummed that I don't have Nancy's Christmas presents pulled together to give her tomorrow. But, well, I'm overwhelmed, and Christmas is just so painful for me this year, I do not want to think about it. I will. I do have ideas, but I'm not implementing them yet. I know it's 20 days away. It is weighing on me heavily. But I'm inert.

    I think about getting out all of the Christmas decorations daily. But the thought of the work that takes just wears me out. Am I letting down Jonathan and Michael by not going all out and decorating their rooms? Am I letting down Jim by not decorating for him? Physically and emotionally, I am just not up to doing what I usually do. Once it is up, I will have to take it down in a couple of weeks. I don't want Christmas to extend to April again.



    GRIEVING

    Yesterday evening, I posted the annual Worldwide Candle Lighting thread, with the list of CN's "Our Precious Angels."

    My hands trembled and tears streamed down my cheeks, as I added Jonathan's name to the list.

    Just another reality reinforcing the pain that Jonathan is not here physically with us. All of the firsts coming at us one after another, with birthdays, Thanksgiving, Christmas, New Year ... And it's so incredibly painful, and I have to stuff it down to keep functioning for Jim.

    I don't have the clarity, the drive, the organizational skills, the forward-thinking assets I once had. For example, I should have called Harold before Thanksgiving for Jim's supplies. Physically, I'm contending with constant pain.

    Every morning, no matter what time I go to bed, even when I avoid falling asleep in Jonathan's recliner with Jim in the evening by forcing myself to stay awake until 11:00, I wake up sometime between 3:45 and 4:15. Every morning. This encompasses the time period during which Jonathan passed. I try everything to go back to sleep, tossing and turning, praying, and it rarely happens. I am engulfed with guilt and remorse. I try to block the memory of his passing and turn my thoughts to others. I try to visualize Jonathan and Michael together, at peace and free.

    It is torment.

    I don't tell this to Jim, because he is carrying enough right now. He knows I'm suffering, and he does his best to help me through it. He knows what time I wake up, and he knows what that signifies to me. He says, "I'm sorry." And we leave it at that.

    Because he knows that nothing he or anyone can say to me will make this go away, or make me feel better, or miss Jonathan and Michael less, or not feel the fear of losing Jim.

    This is life. And death. And we all have to deal with it many times over in our lifetimes.

    The holidays, birthdays, special occasions accentuate our feelings of loss, as well as stir memories we hold close. Nothing unusual is happening to me. I'm grieving for my children and fearing the loss of my husband. And it's the holidays.

    Please take a moment, everyone who is reading this post, to light a candle for Our Precious Angels, a list gathered over 20 years of Child Neurology, which undoubtedly excludes many children, whose parents stopped posting here years ago. Just one candle at 7:00 p.m. on Sunday, 12/8.

    Their parents are probably feeling like we do right now. Please light a candle for all of our children. Thank you so much.

    Donna, we love you and your beautiful family and pray for you all. As we pray for everyone here, and we thank you for your love, prayers, and support.

    Love & Light,



    Rose
    Thanks for the update Rose! When I saw Jonathan's name on the Angel list I cried for you. I promise I will light a candle for Jonathan and all the others. Ah yes the "what to gift to who" feeling. You will get through it. So sorry you are in pain!
    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. #262
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Thank you so much.

    Because we haven't had the opportunity to have a Celebration of Life service for Jonathan, it would be wonderful if everyone reading this post would light a candle for him and for Michael. I can envision it as an online celebration for them. And, it would be comforting for us to know that so many people around the globe were thinking of them on Sunday.

    Jim had a down day today. He can't quite pinpoint why, but I'm sure that he's just exhausted and worried about the future and me. He coughed a lot during the night, but he finally got to sleep for a few hours. Then he slept again this morning.

    I wanted to get on with cleaning and preparing for Nancy's visit, but Jim needed sleep. I managed to get everything accomplished and ready for her arrival. She texted when she was 5 minutes away, and I woke Jim up.

    We had a good visit bringing her up to date on Jim's ups and downs since her last visit.

    We discussed paracentesis, and Jim said that as long as he doesn't feel uncomfortable, he's okay to go without it. I asked her about bacterial peritonitis with unaddressed Ascites, and she said she's never seen it in her 39 years of nursing. She said that any part of our body can be at risk for a bacterial infection. Then, she said that the fluid in our gut is sterile. While in the body, our fluids are sterile. Interesting information there.

    Jim's BP was 116/73, but his heart rate was 93, which is elevated for him. I have to think that is the fluid retention. Thankfully, his BP is still normal.

    We had not eaten all day, as Jim was sleeping or I was cleaning and preparing, so we had a sandwich and a small bowl of soup after Nancy left.

    Now, we wait until next week for results. This always happens when we do things on a Friday.

    Jim had a great shower yesterday, and he shaved with his electric razor this morning. That makes him feel better too, along with his cheerful, red, blue, white, green plaid pjs. He was going to wear the fall colored pjs, but I chose these, "You wore the other ones the last time she was here. Show off your wardrobe. She's practically your second wife."

    As always it was wonderful to see her. Christmas gifts will be given after the New Year now, I guess. That will be her next scheduled monthly visit. We'll stay in touch by text, email, and phone.

    That is our exciting Friday night update. If you managed to stay awake through it, thank you!

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

    Love & Light,



    Rose
    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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  5. #263
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    Rose, I will definitely light a candle for Johnathan and Michael Sunday night. Is there anything else I need to do? Do I need to sign up anywhere? Things are hard, I can tell, but if they were not it would not be normal.

    Sending you love and prayers.
    Virginia

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  7. #264
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    Dear Rose, I will light 2 candles tomorrow - one for Jon and the other for Michael. I will always remember them. xox 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


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  9. #265
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Thank you so much, Virginia and Donna. We truly appreciate your love and support. As you light your candles, please remember all of our Precious Angels and their parents too. The holidays are an especially difficult time for grieving parents.

    Virginia ~ There is nothing else to do, no signing up or anything. Just candle lighting. It is a lovely tradition originated by Compassionate Friends to remember our beloved children.

    JIM'S UPDATE

    Jim had a sleepless night chained to the toilet. At least the pain during urination has subsided. It comes and goes. He's had this issue since his PET scan. We learned later that the PET scan "dye" is concocted differently than those for an MRI or CT scan, and sometimes the urine crystalizes. At the time, he said he felt like he was peeing razors. When he has told doctors, nurses, technicians, etc. about this, they look bewildered. "Never heard of that before," he's been told. Well, there's always a first time, and if it's rare or unusual, it happens to us.

    The aroma of Rogan Josh and Korma are wafting through our home now. I think the aroma of the sauces is soothing Jim's craving for Indian food. I take no credit for the sauces, as they are from jars.

    However, I did pull the veggies together! I steamed them! The Rogan Josh is a tomato based sauce with a nutmeg flavor. I added it to sauteed sweet onion and red and orange peppers and mushrooms, with steamed zucchini, baby carrots, green beans stirred in. For the Korma, I sauteed sweet onion and added chickpeas, steamed small yukon potatoes, and frozen peas. I held off on the unsalted cashews, because Jim still doesn't have his dentures fixed.

    We'll have the Rogan Josh over rice. I use frozen, because I am terrible at making rice for some reason, even with a rice cooker. I grew up on Minute Rice. Jim is the expert on making perfect basmati rice with saffron. He has the night off as the chef, however. So it's frozen or no rice.

    Time for me to suit up for tonight's big championship game! Have to get out all of the cheer gear too!

    Thank you all so much for lighting candles and for your love, prayers, support, and constant friendship. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    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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  11. #266
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    Smile

    :) I am happy for you and Jim that they won. At first I was worried but they came out at halftime with purpose.

    Dr. Charles Stanley had a great sermon on TV this morning about inner peace. I'd like to have it all the time but I fail at times. With love and prayers, Jeanie :)

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  13. #267
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    Rose, Peter and I have a candle burning tonight for Michael and Jonathan.
    Love,
    ANN
    There comes a time when silence is betrayal.- MLK

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  15. #268
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    I'd burn a candle too but it's not possible just now. However, Jonathan and Michael are in my thoughts, Rose.

    Such a long list of children all lost to neurological disorders--very sad.

    At least my daughter had 27 years of a life without major health problems before death claimed her.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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



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  17. #269
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    I lit a candle for your boys last night Rose, as promised. I have never seen frozen rice before. I learned how to cook "Forbidden Rice" in a pot for 50 mins. It's healthier. Saffron rice is wonderful and helps the mood. Sorry Jim has pain.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  19. #270
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    ((((((Hugs to All))))))) ~

    Thank you so much, Jeanie, ANN, agate, and funnylegs4 for your candles, thoughts and prayers. It means so much to us to know that you care for us and support us on this special day.

    I lit candles in Jonathan's and Michael's rooms, and I thanked God for them, because they gave so much to us, to all of us. As did all of our Precious Angels, and all of our Angels here with us on Earth. I am not the only Earth Mother to Angels. There are millions of us.

    Again, I can't thank all of you enough for your gifts to us. God Bless You.

    JIM'S UPDATE

    After our lovely Indian meal, Jim told me yesterday morning that his stools were black. I texted and spoke on the phone with Nancy. We are waiting for the results of his Friday blood draw to see what it shows.

    From my research on the internet yesterday, I discovered that black stools indicate upper GI bleeding, including esophageal tears from coughing. Spicy food can also be a culprit. Diverticulitis would produce maroon bowels, and frank blood indicates a variety of problems.

    Jim does not want me to call Dr. K, or ask for a GI consult, or have paracentesis, or anything. He doesn't want to go to another appointment, then have stuff done to him, then be told to take this or that drug, or to stop eating this or that food. He's quite fed up now, and I don't blame him at all.

    He feels isolated, which we are and have been for years. I reminded him that in the hospital and the medical offices, he is a rock star. Everyone knows and loves him from valets to techs to nurses to doctors. But he doesn't want to go there for socialization or testing or treatments.

    I could always throw a big party and invite whoever might be able to attend. John's family is 10 people, and I can think of at least 10 more, who might attend. There is nowhere for any of them to sit. Or stand. Or eat. Our backyard is mud. Our garage is filled with boxes of supplies and donations. And laundry.

    No one could use the toilet, because that is Jim's domain. And he would spend most of the party in there. Flu season in upon us too, so there's that.

    It sucks, but it's unrealistic. It sucks, because we are very social people, and we remember the parties, the holidays, when we used to have lots of people in our home. We remember when we used to do a lot of things that we can no longer do.

    Grieving also complicates everything for us.

    Tonight, Jim told me that when he's ready to see a doctor or have a test, he will tell me. I reminded him that he has a standing appointment with Dr. K on 12/18, 9 days from today. Jim responded, "If I feel up to it then, I'll go."

    John texted me this morning to ask how we are and if we have any appointments this week. I told him what was going on, and of course, he is deeply concerned. John is wise beyond his years, as he has lost several friends to cancer, as well as his dad, and other relatives.

    So, we wait.

    We thank you so much for your love, prayers, positive, healing energy, and good thoughts for us. We pray for you and your loved ones and give thanks for the blessing you are in our lives.

    Love & Light,



    Rose
    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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