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Thread: A Heavenly Reunion For Jim and Our Boys

  1. #31
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    Default Day Five

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

    Thank you all so much for you ideas and suggestions.

    jeannie ~

    I'm a planner, because I've had to do that my entire adult life. I have to be ready to evacuate, as in having clean clothes (I don't have luggage) to take with me. That means laundry and soon. I'm also a worrier, for the same reason. I wish I could just not fret over this, but it isn't in my DNA.

    SuzE-Q ~

    I would rather stay with John than in a hotel, in a bed where thousands have slept. I would never get into a "public" jacuzzi or even a private jacuzzi. Mine, yes, except that I don't have one. I'm a germaphobe, as you know, and hotel/motel rooms are known for being quite germy (like curtains, phones, etc.). Also, I'd probably be unable to get out of a tub or a jacuzzi now physically. Sitting on a hard surface would not be good for my back.

    I asked our pharmacy if they would take unused or left over meds, and they said "No." This isn't an urgent thing that I need to do, just something that does need to be done eventually.

    John's sister and brother in law would probably be more than willing to search for charities, which accept medical supplies. That's also not urgent, but should be done, because these supplies, unopened and unused, are sitting in our garage, when they could be helping someone in need.

    jingle ~

    I'll have to see whether our PD has the same set up, although I'd be surprised if it does. There should be somewhere that will dispose of these meds!

    Donna ~

    Unfortunately, the organization in your link is located in Largo, Florida. But, thank you as always, for searching for me.

    The mold removal company will be selected by my insurance company. I doubt I'll have any say in who does the work. I'll ask if we can hire our plumbers for the plumbing aspects. They don't install bathrooms, but they do install toilets, sinks, etc. once the mold is removed, and the structure is in place.

    agate ~

    I read your post, and I thought it was helpful. It's reassuring that your neighbor was allowed to stay in her apartment.

    We had a slab leak in our downstairs bathroom in 2001. The plumbing was rerouted through the ceiling in Michael's room to the kitchen. That meant that the ceiling had to be opened and repaired. We have "cottage cheese" ceilings (acoustic, I think they may be called). Everyone now scrapes their ceilings, which I want to have done throughout the house someday.

    They had to test for asbestos, so they closed off Michael's room with heavy plastic, had blowers in the backyard, wore space suits, and had 3 plastic showers in the front yard for them when they left. Jon's room was our office, and the boys were upstairs in what is now our office. We were allowed to stay during that process.

    I don't know, and I won't know until I put the process in motion. But not today. I am just utterly wiped out, and I am not up to calling our agent to set this all up. I have been busy every second since Jim passed, and I need a break. Physically, emotionally, spiritually, etc. I'm too tired to do anything.

    Last night, I made frozen cauliflower risotto, a Gardein turk'y cutlet with gravy, and organic house fries. All frozen, but at least it was a real meal. When I was finished, I put the dishes in the sink, got into Jon's recliner, turned on a movie and fell asleep. I woke at 11, checked all the locks and went to the futon bed. I slept until 3 a.m., got up to potty, and remembered that I had to turn on the dishwasher, so put the dishes in and turned it on.

    Back to bed, slept a little more and got up at dawn, 6 a.m. I'm just functioning right now.

    That mold has been there for a long time, and it can stay there for a few more days to allow me time to catch my breath and recover a little from the trauma of losing Jim. This is going to be an ordeal whether I stay or go to John's house. I'm not up to yet.

    Thank you all so much for your love and kindness. I love you and pray for all of 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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  3. #32
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Thank you all so much for you ideas and suggestions.

    jeannie ~

    I'm a planner, because I've had to do that my entire adult life. I have to be ready to evacuate, as in having clean clothes (I don't have luggage) to take with me. That means laundry and soon. I'm also a worrier, for the same reason. I wish I could just not fret over this, but it isn't in my DNA.

    SuzE-Q ~

    I would rather stay with John than in a hotel, in a bed where thousands have slept. I would never get into a "public" jacuzzi or even a private jacuzzi. Mine, yes, except that I don't have one. I'm a germaphobe, as you know, and hotel/motel rooms are known for being quite germy (like curtains, phones, etc.). Also, I'd probably be unable to get out of a tub or a jacuzzi now physically. Sitting on a hard surface would not be good for my back.

    I asked our pharmacy if they would take unused or left over meds, and they said "No." This isn't an urgent thing that I need to do, just something that does need to be done eventually.

    John's sister and brother in law would probably be more than willing to search for charities, which accept medical supplies. That's also not urgent, but should be done, because these supplies, unopened and unused, are sitting in our garage, when they could be helping someone in need.

    jingle ~

    I'll have to see whether our PD has the same set up, although I'd be surprised if it does. There should be somewhere that will dispose of these meds!

    Donna ~

    Unfortunately, the organization in your link is located in Largo, Florida. But, thank you as always, for searching for me.

    The mold removal company will be selected by my insurance company. I doubt I'll have any say in who does the work. I'll ask if we can hire our plumbers for the plumbing aspects. They don't install bathrooms, but they do install toilets, sinks, etc. once the mold is removed, and the structure is in place.

    agate ~

    I read your post, and I thought it was helpful. It's reassuring that your neighbor was allowed to stay in her apartment.

    We had a slab leak in our downstairs bathroom in 2001. The plumbing was rerouted through the ceiling in Michael's room to the kitchen. That meant that the ceiling had to be opened and repaired. We have "cottage cheese" ceilings (acoustic, I think they may be called). Everyone now scrapes their ceilings, which I want to have done throughout the house someday.

    They had to test for asbestos, so they closed off Michael's room with heavy plastic, had blowers in the backyard, wore space suits, and had 3 plastic showers in the front yard for them when they left. Jon's room was our office, and the boys were upstairs in what is now our office. We were allowed to stay during that process.

    I don't know, and I won't know until I put the process in motion. But not today. I am just utterly wiped out, and I am not up to calling our agent to set this all up. I have been busy every second since Jim passed, and I need a break. Physically, emotionally, spiritually, etc. I'm too tired to do anything.

    Last night, I made frozen cauliflower risotto, a Gardein turk'y cutlet with gravy, and organic house fries. All frozen, but at least it was a real meal. When I was finished, I put the dishes in the sink, got into Jon's recliner, turned on a movie and fell asleep. I woke at 11, checked all the locks and went to the futon bed. I slept until 3 a.m., got up to potty, and remembered that I had to turn on the dishwasher, so put the dishes in and turned it on.

    Back to bed, slept a little more and got up at dawn, 6 a.m. I'm just functioning right now.

    That mold has been there for a long time, and it can stay there for a few more days to allow me time to catch my breath and recover a little from the trauma of losing Jim. This is going to be an ordeal whether I stay or go to John's house. I'm not up to yet.

    Thank you all so much for your love and kindness. I love you and pray for all of you and your loved ones.

    Love & Light,



    Rose
    Hi Rose,
    I agree that staying with John would be safer. I know some people were successfully able to leave states like FL and stay in hotels to get back to their main home but you are physically vulnerable now and hotels are too stressful. I would let you stay with me if it was possible. You're welcome! Your meal sounds YUMMY. :)
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  5. #33
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    Default More of Day Five

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

    funnylegs4 ~

    Awww ... thank you so much.

    I tried to rest today, watching movies and snacking. A sweet movie, with a lovely ending, Sandra Bullock, "While You Were Sleeping." I'll try to have another "meal" this evening.

    Our mortuary director called today to tell me that he has Jim's ashes. Such a sweet and gentle man. Later in the afternoon, Jim's urn was delivered. John will be here Sunday to continue to clean out Jonathan's closet, so I will give him Jim's urn then, and he will coordinate the transfer of the ashes.

    It was a stifling 100 degrees here today, and I have fans running throughout the house. He said, "I know, and I'm wearing black and was outside today." He was probably attending to a burial. Sadly, his business has picked up with COVID-19.

    To sum up, it's been 5 days since Jim's passing, a year and 12 days since Jon's passing, coming up to 17 years since Michael's passing. A plague is spreading around the globe. We have a huge mold problem in our home. It is absurdly hot, but maybe that will help the mold dry out. I don't know. I just know that I'm sweating quite profusely. I do not do well in heat.

    And I cannot think of a word to describe properly how exhausted I am. How I just want all of this stress to vanish, yet I know it will not. And all of the help from John and his family still means work for me. Whether I stay or leave, it will be disruption, when I most need peace and quiet. As soon as the mold mitigation and resconstruction of the bathroom and closet begins, I will be affected until it's finished. I have to select colors, style of tub/shower replacement, etc. A floor, faucets, shower heads, blah, blah, blah.

    I am not up to doing that right now.

    I am less afraid of the people working on the mold and plumbing and reconstruction will bring in COVID, because they all wear masks and suits. Still ... it is scary.

    I just have to keep pushing myself to move forward. But I vowed that I would take today and tomorrow to rest. I will call John on Sunday, and we'll discuss what is next and whether I am up to it.

    A well-made rope remains strong, until the tension, weather, strain, and use of it causes the threads to unravel. I am holding on and trying to reweave those threads.

    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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  7. #34
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    Rose, you are doing so much better than you think. You are functioning, you are trying to eat and take as much care of yourself as you can. It has been such a short time, I think all that strength that you have put into taking care of your family is still there, even if you don't realize it. You are smart to realize when you feel you have taken your last step and it is time to take a couple of days for yourself. You are making your own decisions. I can remember where you are and all I can do is marvel at how much strength you are showing.

    I was trying to get all my insurance and finances straightened out in a hurry because my husband's brother-in-law was in his last stages of cancer and I knew he did not have long. I wanted to see him and made plans to fly from N.C. to where they lived in Georgia two weeks from the day of my husband's funeral. When I arrived, it turned out he had died and his body had been removed from their house just 5 minutes before. I don't know how I got through another funeral so soon, but thinking back I think I was just on auto pilot and also so stunned over all that happened in a six months period. Both of them had been healthy just six months before. I think there are times that we just do what we have to, but you do need to realize your limits. This is just so soon.

    Grieving, as you know, is hard work, and needs to be on your own terms. No two people grieve alike. I am counting on you to put one foot in front of the other and also to rest when you need to. I hope you can sleep and eat. I saw the movie "While You Were Sleeping". I really liked it. Good for you for watching it.

    You will make it through all of this, but there will be times when you think you just can't and there will probably be times when you feel you don't care if you do or not. When those times come remember there are just so many people who truly care about you. You have been such support to those of us on the MS forum while supporting people on Child Neurology and taking care of Jon and then Jim.
    Virginia

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  9. #35
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    Beautiful, wise words, Virginia.
    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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  11. #36
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    Default Day Six

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

    Virginia ~

    Thank you so very much for sharing your insight and experiences with me. I am so sorry for your losses and for the stressful, sad time you had. How I wish you and your husband and brother in law had more time with you.

    I agree with Donna. You have much wisdom and a kind, loving heart. And, I thank you so much for your friendship and support.

    Much like Jonathan's passing, I am in a surreal world right now. I didn't have time to process Jon's passing, because Jim was quite ill, and then we ended up in the ER only 5 days later. He came home ill, requiring intense care. As everyone knows, his status was up and down so much thereafter. Jim was on 3 liters of O2, when we saw Dr. K in May last year. That's when Dr. K talked to us about end of life care.

    Yet, in October, he was off of O2 and strong enough to endure 15 days of radiation therapy, walking to/from John's car. Jim never ceased to amaze me with his determination and resiliency.

    While I did my best to prepare for Jim's passing, and I knew it was imminent, I still can't believe that he isn't physically here. Every time I'm in Jon's room, I look for Jim. That vacant bed, again. It's the startling reminder of Jim's and Jon's absence. And just ripping it apart a day after Jim's passing, has not been healthy for me spiritually or emotionally. It took me quite awhile, before I was able to remove everything from Jon's room after he passed. I had the "luxury" of waiting until I could handle it. I don't have that now, with the emergent mold issue.

    And, the emergent mold issue is a perfect example of when I need Jim here to help me understand what's going on, make the right and best decisions, choices, and just support me through it. For nearly 28 years, we made every decision together, small or large. Even during the past year, Jim told me what to do when the van wouldn't start, the van's tire was deflated, etc. And, every problem we had with The System, Jim was my listening ear and counsel. We talked about EVERYTHING.

    John will help me, of course, as will everyone in my loving circle. It's just not the same as turning to Jim, and saying, "What should we do, honey?"

    Also, I have to wonder if somehow Jim's passing wasn't accelerated, because we had this mold issue. It may have been a contributing factor for Jonathan too, although there wasn't any mold last year. By this, I mean that Jim knew that the leak issue couldn't continue much longer unaddressed. He said that to me just 3 days before he passed. But, Jim also knew, I'm sure, that nothing could be done, while he was in the bedroom, and there was nowhere else for him to go in the house.

    I strongly feel, as do many of my friends and loved ones, that Michael called to Jonathan, "Dad's really ill. It's going to get worse. Mom's wearing out. Come join me, and let's watch over them together. Dad needs Mom now."

    So, it's possible that Jonathan and Michael called Jim, "Mom is wearing out. You are very close to joining us, and now is a good time, so she can get the house repaired. Waiting for you with love and light."

    While I cherish those images, and I fully believe that life goes on after we leave our vessels, and they ARE together, there are three giant holes in my heart and soul. My life, my everything, my reason for living, for fighting, for loving. It's an indescribable abyss of sorrow and emptiness. Because, I am still human and Earth bound.

    And everything I have given to others here on BT, and throughout my life, came from them. From my children and my husband, who taught me about love and courage and perseverance. Maybe I had a small amount of those qualities, before they came into my life. But that small amount emerged and grew, because of them.

    Jonathan, Michael, and Jim are the heroes in our love story. If I am regarded as a hero, it's only because I was blessed to be their mother and wife.

    Tomorrow, will be one week since Jim began failing. I don't want to relive it, but I know that I will. I try hard to not think about it. But that is also denying the grief process, which might benefit me in some way.

    I do feel their presence, every so often, I feel a bit calmer and know that they are helping me. I talk to them constantly. I remembered when Jim and I last watched "While You Were Sleeping," both of us teary-eyed, and Jim said, "That's us."

    I have no idea where this next phase will take me. I know it will be chaos, with people coming into the house every day tearing it apart. If it's too much, I will go sit on John's patio during the day, until they finish. And, when it is finished, I will have time to rest a little. I will have a new bathroom and no mold. The other house issues can then wait for awhile. My next project will be getting a will and doing our taxes before July.

    Virginia, I love you and pray for you and your family. I also pray that you get your Instacart issues resolved very soon. I know how stressful that is. I've been through it with Instacart too. However, today was a good Instacart day for me. I ordered and it was delivered in 1 hour, by a shopper, who knows me. Silver linings.

    Thank you all for your love, prayers and support. I love you and pray for you and your loved ones always.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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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  13. #37
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    Default Day Six Continued




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

    Last night's sleep seemed restful, when I woke up an hour before dawn. I squeezed oranges for my juice, started my decaf, and I took a walk for 3/4 mile.

    A gorgeous, warm morning, so I shed my "cold weather" walking clothes for Spring/Summer. I was unsure of how far I would be able to walk, but I rested a few times on garden retaining walls. I spotted one neighbor, but she didn't see me.

    The morning mist hovered over the lakes as the sun bathed the trees in early light. I paused, taking my time for a panoramic view, embracing the beauty of a new day.

    Once home, I brought the trash bins up from the street and retrieved our mail. I noticed that the front yard had been watered during the night, which means that the reprogramming I did on the sprinkler system worked. I celebrated a small victory there.

    I dared to order from Instacart, and much to my surprise, I could have delivery within 5 hours. Then, to my greater surprise, a shopper began shopping immediately and delivered my order to the front porch within an hour! This shopper has shopped for me several times, a very nice young man. I spoke to him through the front door and thanked him profusely for helping me. He called back, "It's my pleasure, Rose. Stay safe and well."

    I wished him the same and said, "Bless You! I appreciate everything you are doing on the front lines."

    He thanked me, and off he went to help someone else. Heroes in a pandemic.

    I cleaned everything, threw out the bags, and put it all away. I ordered food, which I could easily take to John's house, so that I could have what I know I can eat, and they can have whatever they enjoy eating (meat, poultry, etc.) Throw it in the microwave or the oven, and I don't even need a plate. As I said before, I'm a planner.

    Also, I gathered up all of my clothes in our bedroom, which I've just been laying out on our bed for easy access, when I need them. Several bags of laundry, when I'll do that, I don't know. But I need clothes, whether I leave or stay.

    For me to transition comfortably out of our home, I need to know that I have everything to help me do that in place. I'm not there yet.

    Thank you all for your love, prayers, and continuing support. I 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.


  14. #38
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Last night's sleep seemed restful, when I woke up an hour before dawn. I squeezed oranges for my juice, started my decaf, and I took a walk for 3/4 mile.

    A gorgeous, warm morning, so I shed my "cold weather" walking clothes for Spring/Summer. I was unsure of how far I would be able to walk, but I rested a few times on garden retaining walls. I spotted one neighbor, but she didn't see me.

    The morning mist hovered over the lakes as the sun bathed the trees in early light. I paused, taking my time for a panoramic view, embracing the beauty of a new day.

    Once home, I brought the trash bins up from the street and retrieved our mail. I noticed that the front yard had been watered during the night, which means that the reprogramming I did on the sprinkler system worked. I celebrated a small victory there.

    I dared to order from Instacart, and much to my surprise, I could have delivery within 5 hours. Then, to my greater surprise, a shopper began shopping immediately and delivered my order to the front porch within an hour! This shopper has shopped for me several times, a very nice young man. I spoke to him through the front door and thanked him profusely for helping me. He called back, "It's my pleasure, Rose. Stay safe and well."

    I wished him the same and said, "Bless You! I appreciate everything you are doing on the front lines."

    He thanked me, and off he went to help someone else. Heroes in a pandemic.

    I cleaned everything, threw out the bags, and put it all away. I ordered food, which I could easily take to John's house, so that I could have what I know I can eat, and they can have whatever they enjoy eating (meat, poultry, etc.) Throw it in the microwave or the oven, and I don't even need a plate. As I said before, I'm a planner.

    Also, I gathered up all of my clothes in our bedroom, which I've just been laying out on our bed for easy access, when I need them. Several bags of laundry, when I'll do that, I don't know. But I need clothes, whether I leave or stay.

    For me to transition comfortably out of our home, I need to know that I have everything to help me do that in place. I'm not there yet.

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

    Love & Light,



    Rose
    Hi Rose,
    You're very very welcome!! You are extremely smart to get your food and clothes together now in case you need to go to John's house. I always find it so useful to have food that is part of my normal diet with me during travel if possible because it keeps my digestive system more cooperative. Please bring things with you that bring you comfort if you can if/when the time comes to leave. It helps me feel more emotionally stable if I have comforts so I can forget the new environment for a moment if need be. I try to remind myself of the comforts I still have while in social distancing, that some things are still the same. I can't believe Jim's no longer here either. I love the thought of Jon and Michael leading Jim into the spiritual world the way you describe it. I love that photo of your 3 angels.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  16. #39
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    Default Day Seven

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

    funnylegs4 ~

    Thank you so much for relating so well to my need to plan and organize. That is a very special photo of Jim, Jon and Michael taken on our one and only vacation.

    We had an Aerostar, and Jim built a trailer in which we stowed the boys' wheelchairs, assorted supplies, our luggage. Two weeks on the road, and everywhere we stopped to stay, Jim unloaded all of that, then reloaded it to get back on the trail. Of course, he also lifted Jon and Michael into/out of their chairs, the car, etc.

    I took that photo after Jim and I had attempted to push Jon's and Michael's chairs up a steep and rugged hill for a vista. Tourists coming down told us it wasn't safe for us to continue. So, we struggled to go down. We found this resting area near the gift shop for the park, and we took a breather. A couple of minutes after I took the photo, a soft summer rain began, so we moved into the gift shop. There I found a wedding vase, which Jim and I used in our wedding ceremony.

    DAY SEVEN

    This morning I noticed an email from the health portal, which was sent on 4/20. I had missed it, so I logged into the health portal today to find an email from Dr. K in response to my email that day thanking him, the infusion center, the radiation oncology unit, and all of the medical personnel, who cared for Jim.

    Dr. K simply said:

    "Your husband would not have lasted as long as he did, without your support. He was an amazing gentleman."

    Since Iím already a bubbling fountain of tears, I wept.

    Jim loved Dr. K and his staff, and the nurses, and everyone, who took care of him. And they loved him. Once Jim told them our story, they knew that he was ďan amazing gentleman.Ē

    Jim never felt sorry for himself or bemoaned, ďWoe is me.Ē He demonstrated extraordinary strength and courage, always hopeful, with every procedure and treatment.

    I know that he will be remembered fondly by all of his caregivers. That warms my heart and comforts my soul.

    JOHNíS VISIT TODAY

    When John called this afternoon, he asked if I was up to cleaning out the closet. Iím not, but I know it must be done, and John was available and wanted to help.

    When he arrived, I told him that Iím utterly exhausted, and Iím trying to do small things each day. For example, my clothes were strewn all across the upstairs bed, and I had tons of laundry, which needed to be sorted. Now, itís neat with the door open to air it out. The bathroom doors are closed.

    Iím thinking that the less there is in each room, the better it will be during mold removal. They may have to use the upstairs bedroom window for their extraction of toxins. I have no idea, but Iím trying to be prepared.

    So, John cleared out the remaining stuff in Jonís closet, and we had so many bags full of Jonís clothes, it was astonishing. It was painful for me. I remember him wearing these clothes, when he was well and able to go out and enjoy life. After the second bag, I burst into tears.

    John stopped, ďOh Rose. Are you remembering something?Ē

    ďIím remembering everything. Everything.Ē I paused, ďExcept this sweater.Ē A beautiful Izod buttercream sweater, so soft, and never worn. ďHe never got to wear this sweater.Ē More tears.

    John was sympathetic, but then he turned it around, as he often does, to see the positive side. ďI know this has to be so hard for you Rose, but once itís done, itís done. And you wonít have to go through it again. Iím sorry.Ē

    I saved Jonís designer gowns, as I just canít part with them yet. We threw out dozens of indwelling catheters, all of which we paid for, because the agency couldnít find them.

    John put all of the clothes bags in the garage. I will ask the mold experts whether it is safe to donate them after being in the mold closet. If not, then they will have to go into the trash, because there is no way that I will live long enough to wash all of those clothes. Eventually, I will wash Jimís clothes, which are in the garage, and donate them. All of those nice, soft, cozy fleece shirts and pants he wore for his radiation treatments, as well as his flannel pjs and t-shirts.

    The rest of the bags John took to the dumpsters below his home. And, he told me that they were having the interior of their home painted today. So, his house is in a bit of an upset today also.

    We left a few more things in the closet, and we agreed that we wouldnít remove anything against the wall, so as not to disturb the mold.

    We wore masks and gloves, of course. I keep the closet door closed, but it has slats in it to allow air.

    RAW GRIEF

    While John said that he understands my exhaustion, sorrow, trauma, stress, he still encouraged me to call my insurance agent ďearly in the week.Ē He said, ďI know this is going to be a lot of disruption and stress, but the sooner you get this taken care of, the sooner you can relax and grieve.Ē

    I tried to explain to him that it isnít that easy.

    ďJim began dying last Sunday, a week ago, John, about this time in the day. I was all alone with him. No one here to console me or help me. Then, I had paramedics, police, CSI, and mortuary attendants. Itís been nonstop since with this mold issue. I am old, worn out, and barely functioning. Everyone thinks Iím so strong. Well, I am, but at some point, Iím going to break. Iím actually quite fragile now, like that beautiful urn youíre taking to the mortuary for Jim. So carefully wrapped and protected from harm. Iím not carefully wrapped or protected right now.Ē

    He sighed, ďI know, Rose. Iím just concerned about the mold problem, because Iím concerned about you.Ē

    ďHow long do you think Iíve been living with this mold? It didnít just happen overnight. I fear the ceiling falling in too. But Iím falling right now. And that has to be factored into whatever happens next.Ē

    I know that I have to put on my Big Girl Pants and do what needs to be done. Iíve been doing that for 7 days. Or, I guess, my entire life. But, I donít know whether I have the stamina to keep up with this pace.

    John did take Jimís urn, and he will take it tomorrow to the mortuary, where it will be filled and returned to him within a few minutes. Then, he will bring Jim home to me. Iíve been trying to decide the best location for Jimís urn. I donít think his urn will fit on the table with Jonís and Michaelís urns.

    I will ask John to remove a tabletop fountain and CD player on the credenza with Michaelís other bronze urn (which I was unable to replicate for Jonathan or Jim). He will need to move the credenza out to access the plugs to them. I may try to do that this evening or tomorrow. I just want to have a space ready for Jim.

    And now, the sacred space, where Jonathan and Jim passed, their bed, is loaded with ďsaveĒ items from the closet. Only a week ago, Jim was in this bed, and we were saying ďI love youĒ over and over and over.

    This isnít right. It shouldnít be this way. Yet, it is.

    I canít thank you all enough for your love, prayers, compassion, and continuing support. I love you and pray for you and your loved ones every day. Please take good care of yourselves and be well.

    Now, I leave you with this in memory of my beloved husband, Jim. You may need kleenex or something like it. I do, of course.

    https://www.youtube.com/watch?v=LvdgFLCFy6o

    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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  18. #40
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    Dear Rose,
    Thank you so much for sharing your thoughts and emotions with us. It is an honour and privilege to read and imagine being there with you through these dark days. I am glad that you are allowing the grief to wash over you, this is something you need - it has been too hard holding in the loss of Jonathan all these months. Now is the time to feel his loss and Jim's. But also to remember and continue finding ways to share their special presence and Michael's with the world. There is something powerful in collectively remembering and holding them dear, I believe.

    Our house is quiet. Yesterday I made chocolate chips cookies and oatmeal honey bread. We cleaned. The day before yesterday, Jim built a raised outdoor garden and filled it with earth. We will try to grow vegetables this summer. In the afternoon I watched the documentary Crip Camp on Netflix - it is truly inspiring (tears and laughter) - those kids (and their counsellors!!!) were fantastic. Bring back the spirit of the 70's, I say. The film is on Netflix. Today I'll walk the dog in the woods, work on an OpEd I'm writing about allowing parents of ppl with disabilities into hospitals as essential partners in care and make homemade baked beans in the crockpot. Life is much slower these days. Every day we talk to Nick and my sister. Frank is getting along OK - slow but sure recovery - he's better in the mornings and very tired by the afternoon.

    Sending much love my friend,
    Donna xox
    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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