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Thread: Triennial Review of Jon's Services

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    Exclamation Triennial Review of Jon's Services

    ((((((HUGS TO ALL)))))) ~

    On Friday, Jon’s new County Case Manager (CM) will visit to conduct Jon’s triennial review for services, which he is receiving and/or might need. Since Jon has been in the System for nearly 40 years, we no longer have to endure the annual visit. We have email and phone contact with Jon’s CM throughout the years, and then she visits the third year.

    As this CM has never met Jon, I felt that it was important to provide a document detailing the past 3 years, with highlights of the issues Jon has faced. This document, which I emailed to the CM today, is 11 pages long, when printed out in small font, and contains everything anyone would ever want to know about Jon.

    His physicians, home health nurses, medical suppliers. The supplies he uses. His equipment. The specifics of his 6 hospitalizations in 10 years. He was intubated and in ICU each time. His functioning levels and communication abilities. The whole closed feeding system saga, with the gagging, choking, vomiting drama. His “favorite things.” His personality ~ his lovable, beautiful, sweet personality.

    I provided our evacuation plan in case of a catastrophic emergency. Let me know if you’d like me to post it! It’s out there, but it’s all we've got.

    I discussed our request for a home health Physical Therapist consult to provide us with professional advice regarding Jon’s left leg and hip. His hip is gone, and his leg turns inward, which causes edema on that side of his body, as he’s twisted. It is also causing pressure of his thigh onto his testicles, which can’t be good with an enlarged prostate, as well as a yeast infection in the fold of his leg and groin. We await authorization for the PT visit. I can’t imagine it would be denied, but who knows in these times of cutbacks?

    Additionally, I listed our Goals, as that is one of the focuses of the County’s assessment of our family.

    Here’s our Number One Goal:

    1. Jon will remain in his own home, with his mother and stepfather as his 24 hour care givers, for the rest of his life.

    That is our primary goal for Jon, and since this agency attempted to remove Jon from our home a couple of years ago (around Christmas time, of course), I felt that this had to be our #1 Goal. Everyone at that agency surely learned their lesson after that fiasco. But, I don’t count on anything anymore. I want it in writing, and I want everyone signed on in agreement.

    That’s why I wrote this lengthy, detailed document about Jon, which has taken me days to accomplish. I have had to set it aside numerous times, when the pain of describing Jon’s life during this century has been heart-wrenching.

    Only 14 months after losing his beloved brother, Michael, Jon was in surgery fighting for his life with a twisted colon and septic infection. The surgeon told us that Jon was about 4 hours from joining Michael, when he began surgery.

    And I’m not convinced that anyone can truly understand the magnitude of Jon’s ordeal these past 11 years, unless they’ve lived through it with us, like the hospital personnel and home health care. And, someone, who has never met Jon, or us, or been in our home, or seen us with Jon, could fathom what we’ve been through on our journey.

    With the document I sent today, anyone, who doesn’t know us, will definitely have all of the information they need to determine that Jon is a remarkable young man, deeply loved by his parents, and receiving superior care from the medical professionals on his team.

    He is exactly where he belongs. And I’m confident that every member of Jon’s medical team would testify to that under oath.

    Now, I will spend the next 3 days scrubbing floors, waxing furniture, washing windows, and making our run down abode sparkle! I don’t have a lot to work with ~ this happens when you’re in remodel limbo for 8 years … Jon’s nurse, and the podiatry gals, couldn’t care less about our windows, as they pay total attention to Jon and his needs and our concerns. But this is different. And right now, I’m wishing I could hire the Property Brothers to remake our home in 3 days!

    Oh, well. I’ve warned her that we’re in remodel limbo, so she can just deal with it, like everyone else (including doctors) has.

    I also warned her today that Jim has had Shingles since 6/30, a mild case, but nonetheless, if she hasn’t had chicken pox or the vaccine, she shouldn’t visit us, until Jim’s rash is fully healed.

    Yeah. We’ve been dealing with Shingles for a while here. Because the fun just never stops.

    So far neither Jon nor I have had Shingles. But I did have my usual intestinal conflict followed by a 3 day rash on my torso, which looks like a sunburn. Thanks, Stress.

    Ever onward. Ever upward.

    Ever faithful.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 07-21-2014 at 08:31 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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    Wow Rose I'm exhausted just reading what you've been preparing for. I will be thinking of you all on Friday sending good vibes for a smooth meeting. I had to chuckle a bit reading about getting your house ready. That's exactly how I feel when I'm preparing for company. I think everyone's afraid to open a closet when they know I've been cleaning for company. Sounds like you are very well prepared and hopefully the new CM will appreciate all the work you've put into making this transition easier for everyone. Most of all i hope she sees how much love you have in your family and that Jon is a lucky man to have you and Jim caring for him. How could anyone say that this is not the best place for your son...

    So sorry about the shingles! From what I hear it can be pretty painful. I pray you and Jon stay clear of this. Keep us posted about the meeting.
    Mary Grace

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    ((((((Mary Grace)))))) ~

    The individual, who speculated that Jon's in home placement was inappropriate, was a financial manager for the agency. Jon's CM at that time knew us and Jon, and she advocated on our behalf with tremendous fervor. It wasn't until I called the Executive Director of the agency, who was CM for Jon and Michael for many years in the 1980s, and informed him of what was happening, that the nightmare ended.

    The financial manager was educated by quite a few folks at the agency, including the absolute, provable fact that it is far more cost effective to the state for Jon to live at home, with us as his paid caregivers, than for Jon to be placed in a nursing facility. He has a trache, GTube, and indwelling catheter. He can't go just anywhere.

    I just realized that, while I mentioned in the document that we have purchased beds, mattresses, and pulse ox machines (expensive ones ~ we use it constantly every day/night, and we need accuracy), I forgot to indicate the costs of those items. I think that would blow their minds to realize the amount of money we have spent on Jon's needs, because Medicaid either refused or offered lower quality equipment. But that means digging through files, and finding receipts. I just don't want to do that.

    There are actually people in society, who think that Jim and I are raking in the dough, scamming the system and robbing the taxpayers, while we buy ourselves a Mercedes and vacation in Tahiti. Hand raised. I swear, there are.

    And there are also people, who think that Jim and I should volunteer our care for Jon, without reimbursement from any source, or work a job outside of our home, AND provide 24 hour care to Jon. We sure aren't independently wealthy, so how are we supposed to support ourselves and Jon? And, we're in our mid-60s, so what kind of job could we possibly get in the outside world? Wal-Mart Greeter? Seriously!

    As for as house-cleaning, I go berserk when a new person is visiting, and Jim just shakes his head, while he watches me scrubbing and waxing and mopping. I should hand him a mop! But I have to feel that the house is spic 'n span to be comfortable with greeting the new CM. I don't mean to imply that I'm slovenly the rest of the time! But I do as much housework as I'm able to do on a regular basis, and sometimes I let the deep cleaning slide. So now, I'm deep cleaning, which is a good thing, because it needs to be done, and now I have motivation.

    Thankfully, Jim's Shingles look like they are on their way out today. And thankfully, he didn't experience debilitating pain from them. It was a very mild case, and we are so grateful for that. Let's hope that it was his one and only outbreak! And that Jon and I will never have an outbreak. Ever.

    Everything will be fine. That's my new mantra.

    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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    Distinguished Community Member andromeda31's Avatar
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    Hello!

    Oh my gosh! I will definitely be thinking of you on Friday Rose!!! I sure hope you & Jon don't get the shingles...I had them a few years ago (from stress) and it sucked. And Logan is unvaccinated for chicken pox, but nobody else caught it. Mine were on the side of the hip so it was covered up all the time. Hope Jim's aren't in a bad place, I know my uncle had them on his face which I can't imagine! I can understand the cleaning frenzy...there is just that feeling that they will be judging everything they see when it is a new person coming in. Even with the same old people I freak out. My biggest trick is to toss my 'piles' into laundry baskets and put them in my bedroom. I am a piler, there is always a pile next to my computer and my other many dumping spots. I agree with having the number one goal listed as keeping Jon at home...I can't imagine how it felt to have someone question that. Fingers crossed that the new CM doesn't do anything to mess with that. I would love to read the disaster plan, I think about that sometimes, especially since I just finished reading World War Z (really good btw!). We are so dependent on medicines and do not have much of a 'cushion' in the event of some kind of extended disaster. Anyway, hope all the services get approved, and stay the same (or better!) for the next 3 years. Just think how relieved you will feel after Friday is over...(((hugs))) :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    ((((((Lisa)))))) ~

    Jim's Shingles are on his lower back, just above the "plumber/repairman/cable guy" demarcation line! Initially, we thought that it was a spider bite, but Jon's nurse looked at it last week, when she was here to change Jon's catheter, and she immediately declared, "That's Shingles!" Thankfully, Jim didn't have too much pain, although he hid 2 days of leg pain from me, saying, "I have no pain," every time I asked him! I told him that he is never allowed to do that again. He doesn't want to worry me, but the fact is that we are Seniors, and pain can be an indication of something serious.

    I am ridiculously tired from cleaning! Still more to do. When I start deep cleaning, I get a bee in my bonnet and tend to go overboard. Then my body pays. I hope I'm not hunched over, shuffling, when she arrives tomorrow! That wouldn't give a good first impression!

    Here's our emergency evacuation plan, such that it is, which I included in the Review document:

    We postulated a scenario, which requires research to determine whether it would be possible.

    1. Jim somehow gets to a 24 hour truck rental place; he rents a truck with a back lift.
    2. Jim returns with the truck. We get Jon out of his bed. Jim rolls the bed to the truck lift/into the truck.
    3. We also load his lift, IV pole, and any other items he needs onto the truck.
    4. We put Jon in his wheelchair, and we load him into our van.
    5. Jim drives the truck. I drive the van. We go to a hotel/motel a safe distance away from the devastation.
    6. We find an ADA/handicapped room. We call in advance to ask them to move the furniture, and we bring in Jonís bed/mattress/supplies.
    7. We bring Jon into the room and lift him onto the bed. Hook him up to his food.
    8. We collapse from exhaustion and pray that we have a home to which to return.

    Research: 24 hour truck rental locations, and hotel/motels with ADA rooms.


    The research would involve contacting hotels/motels, discussing our scenario and asking whether they could accommodate us in an emergency. But the question is: how far would we have to go to escape the devastation in a catastrophic emergency? 10 miles? 20? 100? We likely can't know that in advance.

    Our scenario will take hours to execute, so it's useless in a case where we're given 15 minutes to evacuate, which does happen in some cases, like wildfires. But, if a wildfire was near enough to us that we could be in danger, we'd evacuate, before the order to do so.

    Our scenario is also based on the premise that neighbors will be available to take Jim to the truck rental place, and perhaps firefighters/neighbors might assist us in loading Jon's equipment. But what if our street is torn up with a broken water or gas main, and Jim can't get out? The only option is for firefighters/paramedics to put Jon in an ambulance or a boat or ... ?????? No room for a helicopter to air lift him out, although we do live next to a municipal airport and copters fly right over us many times every day/night.

    It's a plan with many flaws, which probably wouldn't work out, but we had to come up with something.

    I did ask our CM a couple of months ago whether her agency had any information on emergency evacuations for people, who have severe disabilities. She said, "That's a good question, and something we've been discussing a lot recently. I will look into it." So we'll see what she has tomorrow, if anything. There should be a consortium of agencies with a systematic plan for folks like Jon. And her agency should take the lead. I will suggest that, if none exists.

    It is highly unlikely that anyone is going to suggest that Jon move out of our home, and I know that all I have to do is make one phone call to put the kibosh any such effort. But that episode in our journey did unnerve me, and I'm on guard now. My ducks are in a row. As Jim is fond of saying, "You picked the wrong Mama to mess with!"

    That 11 page document justifies our existence and reasons for support. It specifies Jon's level of need and our provision of care to meet that need, with the support of medical in-home care professionals. I'm not worried.

    Now, for my next cleaning project: Jon! Spa treatment tonight!

    Lisa ~ did you have pain with your Shingles? How long did the outbreak last? And, oh, your poor Uncle!

    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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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    I had shingles back in 2009, when Caitlin had that really really bad year. It was inbetween hospitalizations...I thought at first that it was a staph rash, that I had picked up bad bacteria from the hospital or something. I had quite a bit of pain though, which was why I went to the doctor to have it looked at. I thought for sure I would be blown off, oh only a skin rash....nope! The doctor took one look and said, "you have shingles!". I think it took about 3-4 weeks for them to go away completely. The pain did not last that long though, if I remember right, I did get some kind of medication for it from the doctor that was supposed to shorten the duration.

    I think your evacuation plan sounds great! I sure hope it will never have to be implemented!! :) If a truck is not available for Jon's bed, would you be able to just take him in the van and whatever equipment would fit in the van with you all and go to a hospital (one not in a danger zone)....would they house him in an emergency situation? They would likely have any equipment that you would not have had time or room to bring? I can't imagine how awful it would be to have to evacuate a medically fragile person...one time when C was in the hospital for a shunt infection (so a 3 wk stay)...Brian came to relieve me for overnight...so I went home and he stayed with her and a tornado/strong storm happened and they had to get everyone into the hallways! He said it was horrible! I can't remember if the power went out or not, but I sure was glad I didn't have to do that!

    Hope you get a good night's sleep and feel ready for the visit!! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    ((((((Lisa)))))) ~

    Most likely you were given Acyclovir to treat your Shingles. There is a vaccine now for Chicken Pox and for Shingles. The Shingles vaccine doesn't prevent an outbreak, but purportedly lessens it, if it does occur. I've read accounts of utter debilitation for some seniors, who were hit with a vicious case of Shingles. Typically, we're not fond of vaccines (although we had all of our childhood ones, including small pox). We don't get flu shots. But given the potential for a serious case of Shingles, Jim and I are discussing whether we should get the vaccine.

    Our hospital is 4 miles from our home, so I'm not sure if there was a major catastrophic disaster, if it would be safe to be there. Moreover, it would likely be packed with people injured from the disaster, or suffering heart attacks, etc. The hospital couldn't possibly accommodate all of the disabled folks in the area, who need a place to go.

    ABOUT THE VISIT ~

    The CM is very young and inexperienced, but quite sweet and compassionate. She opened her folder to my 11 page document and began going over it, which was fine. But she repeatedly asked me, "Is that correct?" when she read something directly from the document. Internally, it was driving me batty, but I responded appropriately each time, with, "Yes," and then expounded on what I'd written with more details.

    Example: "Jon's last hospitalization was in 2012? Is that correct?" "And he had a seizure and MRSA on his left big toe? Is that correct?" "Jon has a wound on his coccyx? Is that correct?" "And you and his nurses are keeping an eye on it? Is that correct?"



    When she met Jon, he reached out his hand for her, as he always does to anyone, who enters his room. He likes to hold hands. I intervened and told Jon that she hadn't washed her hands yet, so she wasn't ready to hold his hand. I held Jon's hand, as I sat beside him, and she stood a slight distance away from him, repeating what I said about hand washing. She probably thinks I'm bonkers. I am. That's fine.

    She asked what movie he was watching, and fortunately, I had changed his movie to "Hoot," since it is a nice family film. Jon is a 44 year old man, and he does have R rated movies, nothing violent or raunchy, of course. But a new CM doesn't need to happen in on a scene where an F-bomb is dropped, if you get my drift. Jon said Hello and gave her a beautiful big grin, and then we were off for the interrogation, er, I mean, interview.

    I got to relive all of Jon's hospitalizations, his coding in ER in 2012, his fluid retention, gagging, choking, vomiting, his wounds, his bleeding into his catheter adventures. I don't think that she, like most professionals in social work or medicine, truly understands how painful and stressful it is to relive those memories. Over and over and over again, because that's how the system works. Every agency, every nurse, every new social worker, everyone wants to know the details of Jon's life. It becomes draining, especially when it distracts the focus from how he is now. Today. Right now. That's what matters to us.

    Jim pointed out how Jon wakes up every morning with a big smile on his face, a huge hug, and "I love you," and that Jon has his own special language, which we cannot understand, but we love to hear him speaking it. It's indescribable. Sometimes he's singing. Sometimes he's just vocalizing. Sometimes he's being goofy, and sometimes, he is expressing pain. And we spoke about Jon's indomitable spirit and courage, and his amazingly sweet personality.

    She offered Respite Care, and we explained why we haven't used the service since 1997, when our trusted CNA walked out and left our boys with a new, unknown RN. That was it for us with respite care. We reassured her that we each take time to relax, and that we work in shifts so that we each are able to get some modicum of sleep. We also explained to her that we love taking care of Jon, and we enjoy being at home with him.

    "We don't know how long Jon is going to be with us. And we don't want to miss a minute with him. We also don't feel comfortable with saying, 'Bye Jon. We're going out to have fun now. And you're not.' We can't do that to him. If we go out for fun, we want it to be the three of us. Otherwise, Jim and I can't have fun. It's impossible." It's the best way I can think of to explain it.

    It's difficult for some people to understand that Jim and I do not feel that we are sacrificing anything. We feel extremely blessed by Michael and Jonathan, and we have committed our lives to their care and loving them.

    After an hour, she closed her folder and announced, "Jon is so very lucky to have you as his parents. You clearly are providing him with excellent care and a loving, safe, completely equipped home environment. I think you're all amazing."

    I walked her down the street to her car, and as she passed our van, she asked me, "Will Jon be riding in this van again soon?"

    And I replied, "That is our ultimate goal. He and we want that more than anything. We are going to make it happen."

    Maybe it was the bright sunlight in her eyes, but I noticed tears. That's when I hugged her.

    When she said Jon's next review will be in 2017, Jim asked her, "Will you be here then?" and she replied, "I don't know. This is a challenging job."

    Indeed.

    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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    Rose I always love reading your updates. Your words are beautiful, your account of "life with Jon" and what he communicates to you, and what you get from him brought tears to my eyes. Happy warm tears... A parent's love for a child is amazing. As I'm sure you do too, I get "how do you do it" all the time. My answer is always "You would do anything for your child too I'm sure". "She makes it so easy since she gives me so much back" I think it's a concept that others don't fully get but it sounds like your new CM "got it" watching and hearing your words and seeing your family. That's awesome. I hope you took her kind words and and gave yourself a pat on the back. Your emergency plan is so well thought out. I don't think any plan is perfect bu I'm sure if you need to improvise you will do everything you can to make it safe for your family. I'm so glad that Jim's feeling better.
    Oh and your certainly not crazy for the handwashing thing! We're anal about washing hands it's a huge step that's important to stay healthy. Proven Fact!!! Thanks for keeping us updated
    Mary Grace

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    Hi Rose, I am back in Ottawa for a pain appt. this morning with Nick (which I'll post about separately) and I'm just reading through your posts now. Oh my friend, what a drama for you ... and your description of it all had me on the edge of my seat. I'm glad that you got a kind hearted soul to do your review, but I feel for you having to repeat your traumatic history. It's so painful. At least it's all done now and you're off the hook for a couple of years. I can just imagine the conversation at her dinner table the night after she met you all!!! I bet there were more tears.
    Oh well, I'm glad it's behind you. Sending much love, Donna xo
    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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    ((((((Mary Grace)))))) ~

    "We're anal about washing hands ..."

    Thank You!!! I am admittedly anal retentive about many things, which I've been working on for years, but the hand washing I will always remain anal about! I really need to implement the "please wash your hands at the kitchen sink" rule for visitors. Nurses, no problem. Toe nail gals, no problem, and they immediately don gloves. Others just walk right into Jon's room, and I feel awkward saying, "Let's wash our hands first," which is silly. I KNOW Jon is going to reach his hand out to whoever walks into his room! Duh! So, instead of denying them contact, I just need to gently guide them to the sink to wash their hands. It's absolutely vital to keeping germs at bay. So, I now resolve to do it!

    In their last visit, the toe nail gals stopped in Michael's room to look at photos of the boys and me and the boys and Jim, which we had enlarged for Michael's service. We talked about our life "before," and then about our life now, and they both told us that every time they visit, they get in the car to go to the next patient's house, and they talk about us. We give them Christmas gifts, and little tokens for Valentine's day, Easter, etc. And sometimes they leave with food. Just our way of saying "Thank You." But they said, "The second we walk into your home, we are surrounded by this love, and this positive, hopeful energy. It's amazing. You take such good care of Jon, and you're great advocates for him. And the love we see between all of you ... it's so beautiful."

    Of course, all of this praise makes us feel good, but not because we're patting ourselves on the back. We feel good that others feel loved when they are with us, as well as see the love we share with each other. We are ourselves. We put on no airs or graces. And we want everyone, who visits us to be themselves, to be comfortable, relaxed, and to be loved. When you leave us, we want that to be your take-away.

    When people see us together, they get it. And you're so right that it's hard to fathom unless you live it with us in some way. Like you, I've told people that they would do the same for their child, but they still shake their heads and think that they couldn't. Well, if anyone had asked me, before I had my sons, if I could handle what I've handled for 45 years, I would most likely have shouted, "No Way!" So, I thank God that I wasn't asked. I was just given the blessing of my children, and love did the rest.

    ABOUT THE EMERGENCY EVACUATION PLAN ~

    I forgot to mention the CM's input on an emergency evacuation plan for Jon! She handed us a pamphlet from FEMA, with Allstate's logo on the front cover. It is absolutely useless!!! Gaahhh! I suggested to her that her agency needs to pull together a committee or a commission or a consortium or something to address this issue. Every state should have evacuation plans for people with disabilities. I just think about the aftermath of Katrina, and all of the people with disabilities, who perished. Why aren't our tax dollars being spent on preparing plans for people with disabilities?! This pertains to everyone of us here at CN, and probably most of our BT members. If a disaster occurs, where will you go?

    It has been 4 months since our initial earthquake, and I am still on edge, waiting for another one at any time. Everyone, who lives in our neighborhood, feels the same, at least based on my random chats with other folks I meet on my morning walks. I've lived through hundreds of quakes, but this one was horrifying. All I could think about was how we could evacuate Jon, if we had to do so. We still only have a vague concept, one which relies on many factors to be implemented successfully. And that makes me extremely nervous.

    So, I guess we just pray that we don't have a catastrophic event. Which I do. Every day.

    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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