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Thread: Jim's Journey

  1. #251
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Feeling So Much Better Today!

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

    Thank you callyflower, Donna, and Virginia!

    I didn't mean to imply that any of you are a burden! You all make an effort to share your ideas with me, and I want to respond to each of you. I should have clarified that I said I felt the need to respond, as an explanation for my lengthy post. I greatly appreciate all of you, and I love you for your help and your love and prayers.

    Having said that, let me reply to you!

    callyflower ~

    Thank you for your suggestions. So far our day has been peaceful and very good. More on that later ...

    I've thought about using a pill organizer with Jim. However, he has his med system well established, and he rarely forgets whether he's taken something. The difference is when he changes the time on a med, like Lasix. He took it at 8 a.m. today. That will be his new time for it, then he'll take his steroids and CBD about 9:30.

    Jim takes his CBD and THC in capsule form. They take about an hour to kick in, and then they last for as much as 6 hours. I haven't seen a transdermal THC patch. I'll look for it. The only thing about a patch is that Jim's skin is so thin and splattered with purpura. A patch may not be the best for him.

    He is very satisfied with his capsules. We've gradually increased his dosage over the last 3 years, and we feel it is working for him. There are so many kinds of CBD now, none of them are really tested, and there aren't guidelines for dosages. The manufacturer of our CBD and THC capsules has been in business for 11 years. So, we feel pretty comfortable with them.

    Since Jim's first paracentesis in April, when he was in the hospital for 40 hours, the hospital has a new machine for the procedure. It's state of the art for sucking fluid out of the gut, according to the Ultrasound tech, who worked with Jim, when he went in for the second time. It's in a very small room, and I don't think it's portable.

    I would guess that in the ER, the fluid would be removed the old fashioned way, as it was in April, unless the machine was available. That's something we will learn, when Jim has his next paracentesis.

    Donna and Virginia ~

    Thank you for reassuring me and for your love and prayers. We are thinking of you today too.

    Now for Today's News:

    A GOOD DAY!

    Jim took a Tylenol with Codeine early this morning wanting so much to sleep. He'd had about 3 hours in the evening, and he really wanted to sleep more. Thankfully, he got 4 good hours of sound sleep. He woke up feeling "better than I have for weeks!"

    He asked for a pancake with raisins and peaches, and he ate most of it.

    He tried to measure his belly and said he got 45 inches. WHAT?! NO! So, I measured his belly. It is 39"! That means that he has lost an inch in the past few days. YAY!!!

    His belly is softer than it has been also. I think it was the positioning with the wedges. I really do. That's the only change we made.

    Jim has been sitting up in the armchair today, so he's getting out of bed. He just used his electric razor to shave off his Grisly Adams beard!

    Dinner

    So, I started cooking this morning. Potatoes peeled for mashing, carrots ready for boiling (don't feel like messing with our wonderful steamer), Tofurky ham ready to cook for 2 1/2 hours (it's frozen), onions and celery chopped for sauteing to add to the savory herb stuffing mix, packet of gravy mix out, stove full of pans. We'll also have peas, because Jim is British and carrots and peas are the go-to veggies. Unfortunately, our asparagus has gone over.

    I also made Simple Mills chocolate cupcakes, and we have their chocolate frosting in a can to top them. This is to satisfy Jim's recent cravings for chocolate cake.

    He also asks me to find a good apple pie when I shop on Instacart. I keep telling him that apple pies are loaded with sugar, all of them, frozen, fresh, etc. That's why he loves them! We have some apples about to go over, so I'll slice them tomorrow and bake them with cinnamon and a bit of sugar.

    Weather

    Pouring, torrential rain yesterday, all night, and most of today. Perfect weather for entertaining! Ha! I feel bad for all of the folks, who were counting on using their patios for guest overflow today. Kids can't go out in the backyard and play, so everyone is cooped up in the house.

    Lots of snow on the mountains now, but the fire areas are in jeopardy of flooding and mudslides.

    Our backyard is mud now. With puddles. I don't know how many inches of rain we've had, but it's the most in quite awhile. Of course, we give thanks for abundant rain in California. We need it for so many reasons.

    A THANKSGIVING FIRST

    This Thanksgiving is the first time in at least 50 years that I haven't watched the Macy's Thanksgiving Day Parade. I used to watch it, when I was cooking early for Thanksgiving dinner, and always with Jonathan and Michael. They love parades. Through the years, there were times when they were sleeping, or Jim was sleeping, and I watched it alone, with the sound off.

    This morning Jim asked me if I wanted to watch the parade, and I said, "No. I can't. It will just make it harder for me to get through this day."

    Later, Jim asked me if I was enjoying the quiet around us today. No traffic on our streets, no gardeners, no construction, no barking. I said I was in a way, but mostly "it is too quiet in our home." Tears welled, and I got up to go to the kitchen to work on our meal.

    Oh, how I miss my beautiful boys.

    Now, it's time to go back to the kitchen and get this meal on.

    We give thanks that Jim is feeling well today and pray that he will enjoy this meal. He is going to put in his dentures and give it a try.

    We give thanks for all of you, for your enduring friendship, love and prayers.

    We wish you all a beautiful Thanksgiving.

    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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  3. #252
    Distinguished Community Member Jeanie Z's Avatar
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    :) Happy Thanksgiving to both of you. I stayed home and ate a TV dinner. Jim had 13 coming including some toddlers. I am tired and it is just too much to dress get myself in the van and drive 40 minutes. Plus I have no patience with toddlers.

    Jim asked me to leave Lacy at home and I did not want to do that either. Andy will fix me a plate. Andy called and he will bring the plate tomorrow when he comes to grocery shop for me.

    I am okay just lack much enthusiasm for anything. I am sending very few Christmas cards but will try to get them done this weekend.

    Y'all remain in my prayers. I wish Jim was on LDN. Love, Jeanie :)

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  5. #253
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    Happy Thanksgiving Rose! Your thanksgiving dinner sounds fabulous! I was with my family but we had meat Turkey instead of Tofurkey this time.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  7. #254
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    Default Post Thanksgiving Report

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

    Jeanie ~

    I can certainly understand how much effort it is to get ready and drive for 40 minutes, and while toddlers are adorable, they can be exhausting. I'm glad you decided to stay home, and I hope Andy brings you lots of left overs.

    I haven't had an opportunity to discuss LDN with Dr. K. Perhaps we can do that during Jim's December 18 appointment with Dr. K.

    As always we thank you for your prayers, and we send healing energy and prayers your way. I hope you soon conquer that lingering cold.

    funnylegs4 ~

    Happy Thanksgiving to you too!

    Dinner turned out great, and Jim ate a large helping. Then, he took a nap for about 3 hours, and when he woke up, he wanted another helping!

    Today is a different story, as he's a tad constipated. He's only had a piece of toast today. He's saving room for leftovers tonight.

    I spent so much time in the kitchen on my feet yesterday, which I'm not used to doing. We have had an invasion of ants due to the torrential rain, so I had to clean up the kitchen after we ate, and I was wiped out.

    Stuffed and satiated, Jim took a 3 hour nap. When he woke up, he wanted more dinner! I couldn't believe it.

    He tried to nap today, after being up for much of the night, but once again, the toilet called. He took his Lasix at 8 a.m., and that was the time when he usually had relief for a few hours from the toilet to nap. Now, he's going all day. He's very fatigued.

    Tomorrow morning we have our big game with "the team up North," our historical rival, and if we win, we should hold onto the #1 ranking for championship playoffs. OSU won the very first CFP championship, and we've had a remarkable season with a great team. It should be exciting, and Jim and I are looking forward to watching it together.

    Sadly, it's just one more thing reminding us how much we miss Jonathan and Michael. We used to have so much fun watching the games together, singing the fight songs, bringing out all of our OSU fan stuff. Our tradition was pancakes on Saturday morning to get us in the spirit.

    This, and Dodgers during the Spring-Fall, provided Jim and me with a diversion from our grief and our assorted challenges. It gives us something to look forward to and to share together. For that reason alone, I hope that the Buckeyes will go all the way to the championship. We don't want the disappointment we had when the Dodgers blew their shot at the World Series.

    It sounds so superficial and meaningless, but it's essentially all we have for entertainment and engaging our interest away from our trauma and drama.

    That's our exciting, up to the minute news. In the olden days, TV newscasters would say, "Film at 11."

    Here's some film for you ~ At the end of every game, the team gathers before the OSU band to sing the Alma Mater, Carmen Ohio. In this video, look at the stands in the background. They are packed. Buckeyes don't leave until the last note of Carmen Ohio. That's over 100,000 people in the stadium singing Carmen Ohio. It's a pretty amazing experience, and I cry every time I sing it.

    https://www.youtube.com/watch?v=b2fouo_EOxw

    OSU was a very important place for us to be at that time. I received a spectacular education, which has served me well all of my life, and Jonathan and Michael were in the Nisonger Center program at its beginning. It was a fantastic experience for all of us.

    I digress ...



    Jim and I hope that everyone had a pleasant Thanksgiving. We pray that everyone will be well during the holidays, avoid stress and overdoing, and find joy and peace in even the smallest things.

    We thank you for your love, prayers, and continuing support.

    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. #255
    Distinguished Community Member Jeanie Z's Avatar
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    :) Andy did bring a lot of food. I had a plate about 3 PM and later another smaller plate. He bought a pumpkin pie when he grocery shopped for me. Late last night I had a piece of that.

    I have another friend who is a Buckeye fan too. I like watching football, baseball, tennis and occasionally golf.

    Your dinner sounds good and I am glad Jim felt like eating. Love, Jeanie :)

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  11. #256
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    ((((((Hugs to All)))))) ~

    Jeanie ~

    Andy and Jim are such good sons. I'm so glad that you have some homemade food and pumpkin pie.

    I used to enjoy watching tennis, but it just got so super fast and all the grunting ... I lost interest. I will watch a little golf with Jim. For his sake. I grew up with baseball, and it isn't an aggressive or violent sport. But I do love my Buckeye football!

    I bet your Buckeye fan friend is as happy as we are today! Our Buckeyes beat "The Team Up North" 56-27! It was a rough game, as it usually is between these hard core rivals. It was also raining pretty hard during some of it and about 35 degrees.

    Our quarterback, running back, and defensive end are potential contenders for the Heisman Trophy this year.

    At the end of the game, we got to see/hear part of Carmen Ohio, and I began singing and finished the song after the camera cut to the talking heads. I noticed as the camera spanned the stadium that only the Buckeye fans were remaining. They were there for Carmen Ohio.

    Jim had trouble staying awake for most of the game, but he managed to pop open his eyes for the big plays. At half time, I made breakfast for me, since Jim wasn't hungry. At the end of the game, Jim requested a "bubble and squeak" with all of our Thanksgiving leftovers.

    So, I melted some Ghee in the skillet and tossed in mashed potatoes, stuffing, chopped baby carrots, peas, and chopped veggie ham. I "hard" fried an egg beside it (this is what Jim calls breaking the yolk in the skillet). Then I chopped the cooked egg with the spatula and blended it into the rest of the food. Turned up the heat a tad, tossed the mixture so it would get crispy on the outside, and voila!

    It was perfect, and he ate a huge plateful. Then, he took a nap.

    Next week the Buckeyes play Wisconsin for the Big 10 Conference championship. As I said, having something to anticipate like OSU football helps to distract us from our grief and health issues. We need all of the help we can get to cope through the holiday season. And we're taking this as a form of therapy.

    Jeanie, I'm praying for you. I hope you get your strength back soon, and that your cold will abate completely. Please take super good care of yourself. And give Lacy a hug from us.

    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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  13. #257
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    Hi Rose, I didn't know you went to OSU! Our Natalie's partner is from Dayton and that's where they both spent Thanksgiving. Nat's Alex is a buckeyes fan too! They had a sad holiday this year - Alex drove from Madison on the Monday before T'giving, and he stayed with the dog in his grandmother's apartment where she is on home hospice. They had a lovely visit and the rest of the family arrived on Tuesday. Early on Wednesday morning, Alex's grandma passed away peacefully with all the family beside her. They had a reunion and dinner with lots of memory sharing and tears. But I sense it was good - there was so much love.
    I'm glad that Jim enjoyed his dinner and breakfast! That has to be a good sign. Fingers crossed he can have a procedure to drain the ascites this week. Lots of love, 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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  15. #258
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    ((((((Hugs to All)))))) ~

    Donna ~

    I'm so sorry that Alex's grandmother passed. While this places an extra sadness on the holiday, perhaps Grandma planned it this way, so that the family would be together for Thanksgiving. She was surrounded by her loved ones and passed in peace. Then, they celebrated her and shared their memories. As it should be.

    Yes, I am a Buckeye through and through. I'm not sure, but I think it is a legal requirement in Ohio that as a resident, you must be an OSU fan. Hence, Alex's loyalty to the Bucks.

    PAIN

    Today, Jim asked me to call Dr. S, as Jim is now having pain in his shoulders and ribs, possibly from the radiation. It's also possibly a positioning problem, since Jim sleeps on his left side (tumor side) frequently. He's also sleeping on the wedge again, and the reason we eliminated it was because he was uncomfortable with it. So that may change again soon.

    Of course, Dr. S is quite busy. His nurse told the receptionist to tell me to call Dr. K for pain management. I explained that Dr. S was going to manage this pain, as it is from radiation therapy. I told her that Dr. S had said that he would likely increase Jim's steroids for a short period of time. She took a message and said Dr. S would call us.

    This afternoon, Jim said that the pain had subsided quite a bit. So, again, it could be positioning pain.

    Jim's follow up appointment with Dr. S is January 16. He is a busy doctor, only one of two rad oncs actually on staff. Others volunteer from other hospitals to fill in gaps. I don't know why it's so hard for our hospital to get rad oncs. There certainly is a demand for cancer patients to have radiation.

    GUT

    Jim's gut is back to 41", and he's not having successful bowel movements. I tried to encourage him to eat his raisins and prunes, as he has been for the last few years for breakfast, but he's not interested. He hasn't had any for nearly a week, and now he's paying for it. He took some MOM this afternoon, so I hope that helps to get things moving.

    Yesterday, Jim told me that he didn't want to have paracentesis. He said, "I'm fine now. I'll wait til I need. Besides, it will just come back in 24 hours. I don't even know why I'm doing it."

    I tried to explain the risks of not doing it, but he is becoming frustrated and fed up.

    Dr. S told us that radiation is "not a cure." Dr. K and Nancy have said that paracentesis is "not a cure." The goal isn't to cure Jim, just to make him feel better for a little while. We have no idea how long that "little while" is, and no one is willing to give us an idea. Dr. S said that 50% improve, and 50% don't improve with radiation. How lucky are we? Who knows? But we've made it this far.

    So, today Jim's appetite is very low, after devouring the majority of our Thanksgiving meal over the past 4 days. I actually had my first and only second helping of the leftovers for lunch yesterday. Jim ate all the rest of it. And it was a lot of food.

    When I asked him what he wanted for dinner tonight, he said "spaghetti." Then, he fell asleep, because he's constantly drowsy and fatigued. So, that nixed my plan to chop veggies and get it done early so it could simmer.

    I suggested that he stick with soup tonight, until his bowels start cooperating.

    Because it can take time before paracentesis can be scheduled, I am going to ask Dr. K to order it. Jim may think he doesn't need it, but we have to try to do something about his growing gut.

    Sometimes I feel like a cattle rustler trying to bring in stray cattle. Okay, honey, let's get back to where we were before you wandered off. We both need to be on the same page, but he keeps turning the pages every day.

    WALK TRAUMA

    Almost every morning, I encounter a tiny, elderly Korean lady on my walk. She's usually walking toward me. She looks down, as I do, to make sure that there are no obstacles on the sidewalk. Then she looks up at me, smiles, and I say, "Good Morning." She responds, "Morning." I then say, "Have a lovely day." She says, "You too." Her English is quite limited.

    This morning, at the greenbelt juncture, which leads to the golf course trail, I found her on the ground. She had fallen and had dirt on her cheek. She couldn't stand up. "Help me," she cried.

    Although she is very small and thin, I couldn't lift her, and she couldn't bear weight. I didn't know if she'd injured a hip, a knee, an ankle, her spine, etc. She was almost squatting.

    Coming toward us from both directions, two familiar faces. A large Korean man and a cheerful Korean woman, both about middle age. I ran to the man and asked if he spoke English. "Of course." So, I explained that she had fallen and that I couldn't get her up. The woman ran to the elderly lady, as I explained to her what happened. They both spoke in Korean with the lady.

    One on each side of her, thei gradually pulled her up to standing.

    "Is she okay? What is she saying?" I asked frantically.

    "She is okay and wants to go home. We will take her home," the man said.

    They gently supported her on each side, speaking softly to her in Korean to reassure her, and she was hardly bearing weight with either leg.

    I didn't follow them. I should have so that I know where she lives. When I asked her, she just pointed. That's not helpful. We have a large neighborhood.

    One thing I have often noticed is that the lady doesn't wear proper walking shoes. I also think it's possible that she tripped on a metal separator on the sidewalk. When I looked at the separator this morning, I thought that with her shoes, she could easily trip on it.

    There are dangerous places throughout our neighborhood, and I know them all, and have reported them all repeatedly.

    I wasn't there, and I didn't see her fall. But I do know this stretch of our trails very well. I know that separator is there and avoid it every day.

    I will report this, whether it was the culprit or something else occurred to cause her fall. This lady has been walking long distances for months now. By herself. Yes, I'm by myself, but I'm also younger than she is, and I've lived here for 42 years. That said, I've fallen twice in the 13 years I've been walking, once on a slippery sidewalk from overspraying of the greenbelt. I have great walking shoes with good traction, but that didn't stop me from slipping. It happens.

    While I pray that this never happens again, if it does, I will call 911. I wish I had done that today. I just trusted the man and woman to take care of her.

    Nothing like a relaxing walk in the morning to stretch my aching bones and muscles and clear my head.

    Thank you, Donna, and everyone for your love, prayers, and constant support. We love you and pray for you and your loved ones every day.

    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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  17. #259
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    Dear Rose,
    I am so glad you were there to help the Korean lady and that by chance, other Koreans were nearby to help her. Thank goodness. I'm so sorry though that Jim is not feeling well at all - pain on top of everything else (fluid retention, nausea, constiipation) it's all too much. I hope things turn around with positioning and with paracentesis next week. I will pray.
    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


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  19. #260
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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
    Last edited by Earth Mother 2 Angels; 12-05-2019 at 06:21 PM.
    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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