Quest for my normal

[shanrucas]

Hi all,

I wish we had a daycare for adults here too, that would really be helpful. Maybe if I ever have enough energy I will look into get something like that started. I hope Jedidiah is doing well, if you see him give him my best.

Linda, boy I just don't know what to say, you are amazing though. Through all your pain and stuff you still reach out to be supportive to others. You are a terrific person.

Hotspot, I am soo curious to find out how that evaluation went, poor kid.

I woke up today with the attitude that I was going to face the day head on and not think and worry myself about the future. I pretty much was able to do that, I guess its the stubborn streak in me that keeps me going. I'd like to think I inherited from my great-grandfather, he lived to be 103, he was sharp of mind and lived in his own home with the help of his daughter, my grandmother. I guess this caregiving of parent runs in the family:p.

So I guess I had a good day, a couple of mom's friends that she went to school with came over to visit, this made her happy, Im so glad they did.

Hope everyone else had a good day.

Shannon

[Lindamomof7]

Good morning Shannon... I am so glad you were able to see your Mom express some joy and understand that she had her friends over. And I am sure you were so relieved and happy to that in her...

You are a wonderful daughter and I know your Mom is so proud of you for being the unselfish, caring, loving and supportive daughter that you are. Keep up the hard work and keep your head focused for what is right ahead of you. That will help you from getting to far ahead of yourself.

But you are right, you do have to plan not only for you but your Mom but keep it in its perspective. And as you already know that is the toughest part of all of this but I know you can do it

Maybe you do have a new calling in life Shannon. Never close the door that creeps open and allows us to see a little bit of change and an opportunity to help and provide something needed to others.... Keep that thought going..................................

We are suppose to get more snow. It looks like Jersey will get hit again with about 3-5 inches and another storm coming on Tuesday. No problem, I love the snow and I often wonder if I have somewhat backward thing going on as I do not like sun and I feel wonderful when the clouds are heavy and ready snow. Ok go figure that one out!!!!

Hope everyone is well and enjoying the weekend...

[shanrucas]

Good morning Linda, mom and I seemed to have slept in a bit, a rare thing, I think we were up to late last night. woke feeling like I might be getting a cold, I hope not. Thanks for the pep talk, I can't get to much of that. I do want to plan for the future, but I also get myself all worked up about things that haven't happened yet.

Your not the only oddball when it comes to the weather, my moms favorite season of the year has been winter. She loves the rain and stormy weather. I like it to,,in the winter. When some summer rolls around I want summer in my summer.

I hope you are having a good day and are keeping warm.

Shannon

[brodman]

Its nice your mom had friends visit. Hope you arent gettin sick either being sick sucks

Had interestin night with the dead people Domino really likes that one stone no idea whats up with that it is weird Anyway Jedidiah is ok gonna see him tomorrow mornin after I drop Domino off at home after work.

Hey hotspot how did it go with the kid? where you hidin

[Hotspot]

It's really great Shannon that your mother had old friends visit. I know that must have lifted her spirits some.

Linda, very sorry about the never seizing medical merry go round you seem to be on.

Brodman, I've not been hiding just very busy. I was chatting with Jedidiah a little while ago, he was showing off his new jammies. How old is that headstone Domino is fasinated by?

Friday morning with my new boy went almost entirely like I expected. I was not looking forward to going any place yesterday morning especially after working Thurs night. The kid was a little confused he thought we were going to see the counselor. As I was driving he told me I was going the wrong way. Briefly explained where we were going and he was OK, I don't think he really understood.

We get there sitting in the waiting room for about 30 minutes before the female evaluator came in. Then I got a death grip hand hold from the kid. I started to walk towards the office with him when she announces that I can't come. My wife had already called the day before explaining the situation and had been told I could accompany him as long as I didn't speak during the testing. I remind her of the call to which she responds that she was told to not allow it, of course she never called to tell my wife this. We are at the office door now when she goes to grab for the kid's hand telling him I'd be waiting for him outside. He went bonkers in the office tossing anything he could get his hands on. She started yelling not a great move. He then threw up all over her rug and proceeded to run down the hallway knocking over everything in his path.

I know I should have stepped in sooner but part of me was kind of enjoying it to be honest. We had forewarned them all and were ignored. His trashing and vomiting the place definitely drove the point home. Finally I stepped in throwing him kicking and screaming over my shoulder. By now a lot of people had come out of their offices to stand and watch. I took him into the restroom to clean him up a little. When I came out still carrying him she was standing there. She goes I won't be able to do the evaluation with him today. I just looked at her like the ignorant ass that she was, walked out and went home. What a waste of time.

[shanrucas]

Wow Hotspot, I just cannot believe the extent of the unprofessionalism surrounding this poor boy. I mean to totally blow you and Mrs. Hotspot off like that and turn around to do just what you warned them against. Im with you I think the evaluator got what she deserved, the topper though is her telling you that she couldn't do the evaluation today...like duh..not after what she did.

Im glad you checked with Jedidiah, I hope all goes well for him, did he have the surgery already? Im kinda in the dark on that one.

Brodman, yeah I think it would be interesting to know more about the headstone that Domino is facinated in, such as who it is and what it says. You also gave me a brilliant idea about a day care center for adults who need 24 hour care like my mom. We don't have anything like that here. I want to research the idea and see what it would take. I think it would be useful here for people like me to be able to take there loved one to a place that is safe and nice for the day, while they work or just have a day to themselves. I would like it to be affordable to...anyway you gave me the idea and just wanted you to know that.

I hope everything is going ok with you Linda, I miss talking to you.

Shannon

[Lindamomof7]

Oh wow hotspot I really can't believe it. I mean I can but again another fumble from the so called "professionals"

I totally understand what you meant by letting him do his thing in front of the "professional" They deserved it especially the throw up on their rug. So it was kind of a haha see you didn't lesten to me moment, I totally get it.

So now what are the plans? I hope you are able to get to a qualified professional who totally gets it....

I'm ok... I guess had a total meltdown yesterday over my husband and the issue with keys so I hit the ground running or driving should I say. I left and didnt come home till early this morning and told him to STOP it with telling me I cant drive. I know his control triggers me but I also know his control is coming from total fear of himself and not being able to handle my issues especially going dissociative when I am out. I get he is scared, but dela with it already. I have been sooooooo patient in not driving for months now hoping her will be less traumatized but a few comments he said thos week and my my issues with the male Dr's this week has really put me in to tolerant, hypersensitive and to the point that i cant deal with the triggers of men. So I said I was coming home ONLY if we would never speak of the key issue again and leave it at that. It didn't help that I woaas driving around all day figuring out what to do in the middle of the snow storm that really didnt materialize into what they thought but still it was an interesting day....

Brodman I thought about you yesterday in my travels. I was sitting at a small local diner and up comes a seniors small bus dropping off some seniors to the small shopping center. And off comes a woman with her walker and an aide. They totally looked mismatched together as she was helping her in the doors.... So I thought about you in my travels and hoping you were driving safe in the slush as well....

Everyone have a good day....

[brodman]

Hotspot that sucks for the kid to have to go through such bullshit like that I hope you and mrs hotspot had filled him up with a good breakfast for that puking I think I would have done the same just let him destroy the damn place. They do say actions speak louder than words lol seriously though poor kid You guys and the shrink had already told that worthless caseworker havin the evaluation where she wanted wasnt good idea and now it was showed not to be whats gonna happen now?

The stone Domino sits staring at is in the new part of the cemetery. Its some guys grave from like a decade ago Other than Domino being drawn to it for some reason there isnt anything different about it from most of the others

Shanrucas its hard to believe there aint any senior centers near you if there arent looking into getting one started is an ambitious and helpful pursuit. Everyone needs a break and time for themselves.

Thankfully I dont drive seniors on weekends anymore 5 days is more than enough because they arent all pleasant and some of their aids really blow I mostly do some taxi driving or limo service and now watch the dead fri and sat nights

Jedidiah is having surgery tomorrow mornin he had to go back to the hospital on fri so they could do presurgery tests and stuff. I went to see him earlier today filled him up with food made it easier for him to get online he was havin trouble with that workin and not. After he has surgery in a few days he probably be up to comin back to post here. Hes gonna have to stay in hospital for long while

[Lindamomof7]

Brodman tell Jedidiah good luck and we are thinking of him....

Hmm interesting about Domino. You should see if there is any history with that person that is out of the ordinary. I believe he is seeing and feeling something. Animals have that sense as well as kids....

I took down the christams tree and have felt pretty energized and focused. I guess it is mania who knows but this darn illness makes me so tired so I have to frequently sit here at the computer or sit on the couch and just chill out. So I am stop and go all day...

Can't wait till tomorrow, I am filled with dr appts all week though and maybe results to my scans as well....

And darn the Eagles lost!!!!

[shanrucas]

Hi Linda, sounds like a busy week. Hang in there,curious to hear what all thoughs tests say. Im glad that you had some energy today, even if it was mania. sorry your eagles lost

yeah Brodman, its hard to believe we don't have senior center,,well we do but its more for a place for seniors to go play bingo. Its isn't staffed with people to handle any seniors with dementia or severe handicaps. But I am going to research it a bit more, maybe I missed something if I did it isn't well advertised, we are a small town so it wouldn't be hard to advertise.

I slept so much today, mom had a good comfortable day so I totally took advantage, normally I try to keep her awake and interested and entertain her during the day...but I was either exhausted or to depressed to do that, maybe a bit of both. She has a doc appt tomorrow, so its good we rested up. It takes alot to get her up and in chair and transported to the medical center. We have to use hoyer lift to transfer her.

I hope everyone had a good weekend.

Shannon

PS. Brodman...Give Jedidiah a hug for me...lol..ok you don't have to hug him just tell him I gave him a hug clear from Oregon.

[Lindamomof7]

Well I have beeen up since 2am I guess it is a little bit of mania, hmm interesting how all of this transpires. I can see now how I have always said my life has turned into some kind of timing.

Some times the brain is working on overdrive and I cant physically get moving and then other times the body is up to going to run an olympic race but the depression keeps that from happening and then there are times like this that both head and body are working in sync.

This is the ideal time....

But I do see how this auto immunity stuff has created havoc on my body and then add triggers, neuro transmitter stuff or whatever and my life is literally held together or not by timing of it all.

I am pretty glad I can recognize it and all that I have said the last 5 yrs really does now make sense...

Hey Shannon, good luck on your outing. I am sure it is difficult but I imagine the trip can be a good way to get your Mom out of the house but I can see how it can be full of anxiety. Hope the weather is good for you

[58corvette]

I to have been up for about the last Hour or so after Having Slept through most of the day. I woke up again very down & depressed but with the same Feelings & Emotions you just mentioned.

I made some Coffee (Generally always helps a bit) & saw a reply Athena made to me in regards to Men & Women, Todays Society & our Differences.

Her Reply made me Feel Much Better About Myself & it was Refreashing for me to hear this from a Woman of Experience, Knowledge & Compassion.

So as this Day Transpires I will Continue to Hold out Hope & Again just Let You Linda & Others know Thank You so much for just Being Here knowing I am not Alone or Abnormal.

Sincerely; Jim

[Lindamomof7]

Hey Jim I know how you feel, it is nice to know others are listening and even though they dont reply I know they are supporting not just you and me but others who all feel and share the same pains.....

I think that accountability to each other in priceless...........

Have a great day and now that it is 8am here I am off and running!!! Busy day and I feel up to challenging it like I used to just do so naturally and without thought or reservation for how "I feel"....

[58corvette]

Yes it is Linda;

You have a Great Day Yourself!!!

Sincerely; Jim

[Hotspot]

Shannon, Have you checked with local churches or synagogues around where you live? They might have members that volunteer their time. Having others chipping in to watch over your mother could give you some added time to do things or to simply recuperate yourself.

Linda, I hope this busy week of yours yields some positive outcomes especially regarding the testing results.

Brodman, I'm glad you have been spending time with Jedidiah he really could use some friends around. btw my new kid on fri had fruity pebbles and cocoa for breakfast his vomit was a nice rainbow. I agree with Shannon and Linda there must be something Domino is finding special about that gravesite. Do a search on the name and see what comes up. If he were doing it at every grave I'd chalk it up to it all being something new to him. Having him sit at the same one over and over again means there must be something special about it.

As for me and my new kid.. Well my wife did get a call from the caseworker today who had been informed by the evaluator of how the testing went on Fri. She has finally come around and accepts the testing to be done the way the counselor advised would be best. Next week we will try again but within the counselors office with both of us remaining in the room. The counselor already believes the kid should be given a home tutor/teacher for the remainder of the school year. Allowing him to continue his intensive therapy. Do the testing to find out exactly where the kid falls academically and then return to school in the fall. His ideas make the most sense to my wife and I. Being put into a special needs class right now would still be more than he could deal with or be handled by teachers.

He really is a nice kid. He is bright, helpful, funny and is petrified of closeness although craving it at the same time. He gets along well with the other boys and animals. He is slowly becoming closer with my wife and is generally my shadow. He has even begun getting closer to my mother. He likes when she snuggles with him to read stories. Huge considering he use to run away screaming going into hide mode. He loves playing games and listening to stories from my father. Overall he fits in well. His frustration and fright tantrums are minimizing. He's learned he doesn't need to hoard food.

Main issues that remain are his being frightened by females and strangers, his not sleeping regularly, continuing nightmares when he does rest. His using the restroom alone has also gotten somewhat better provided he still have occasional reminders and a guard outside the door. He has fallen in love with bath time without it being a real issue any longer providing the bubbles and toys are in there too.

My wife and I have to go to court on Thurs for what should be the final procedure regarding us becoming adoptive parents of one of our other boys. It is long over due.

[finding my way]

Hello hotspot, I hope you don't mind my bursting in on your conversation! I work in special ed, and I just wanted to recommend a couple things for your new charge. Not as some expert, just as someone who has seen a few things and wants to help. Some kids get better sleep under a weighted blanket. Just that bit of pressure is like getting a hug all night. Also, for schoolwork, if you google handwriting without tears, that method is very good for getting the handwriting going. Don't be put off by all the stuff it looks like they want you to buy. Even if you just ordered a handwriting book for his level and worked a little every day with him, it would help. Now that he is liking stories he may be interested in learning more for his own output of letters and writing. Thanks for you and your wife's hard work, hotspot!!! The universe is a better place because of it.

[Lindamomof7]

Hey Hotspot, running again fast and early today but wanted to say to you that I do think it is HUGE that his progress is progressing so well especially with your Mother. I am soooo happy to hear that. And the fact that yo are seeing another side to him other then the side of him in crisis, I think is a wonderful change for both of you.... Keep with it. I think about you and your situation all the time. Believe it or not, it helps keep me in focus with my son Peter..... so thanks for the inspiration I need as a parent and being able to see all of your caring ways...

:-))

[shanrucas]

Hi everyone...Hotspot I am so glad to hear that your message got through..and the progress you have seen in this boy must be a bit exciting.

I wonder how Jedidiah is doing, hope is well, and Linda a busy week for you it sounds I hope everthing goes ok and that no one takes your car keys.

Well I am exhausted as usual, a lot of up and down with mom,,but thats how it goes some days. I will see what the churches have, but I know the what they call the senior centers here is more of a social club for people older than my mom and they are able bodied for the most part and don't require the care my mom needs. Its hard to transport her and I have to use a lift to take from bed to chair and she can't stay in her chair for more than 4 hours at a time. so you see the dilima I have. I keep wanting to research and find help but by the time I have time to do so I am just to exhausted to even talk.

I just do what I can and accept what help I can. At least I know I have a place to live if I should loose the house after all this...I don't want to, its my home, but I have had to start over so many times in my life, I think I can do it again...just wish I could have my home.

Shannon

[brodman]

LOL gotta love the fruity pebbles rainbow puke that must have been something for that idiot to clean up Good that worthless caseworker came around too. Hotspot I hope things go good for you and mrs hotspot in court on thurs.

Shanrucas Hotspot has good idea about lookin into the churches and stuff do gooder people usually are there and could help you It dont hurt to ask around worse that could happen is they dont have noone or they might be able to help you find help if you explained your situation any help would gotta be good for yous Its all too much for you to keep doin it all. I feel bad for you.

Runnin around Linda hope you got good news from your tests try not to be too hard on your hubby cuz I think what you think is control is him carin you arent well physically then add in the mental shit of you gettin lost sometimes if he were a tool he wouldnt bother carin where you go.

We are about to get more snow its already comin down lucky us only good thing about it for me is I dont have to go to work get certain number of paid snow days. Hoping it will be just enough not to have to go into work which it should be and then I can go get my taxes done and see how much uncle sam is gonna bend me over for this year.

Really pissed me off today I went shoppin for that old lady I took to dinner so shed have food throughout the storm I got behind this lady on the line with food stamps. What a crock shes buying shell steaks and lobster tails and bitchin that her cases of beer arent covered. People that really need foodstamps shouldnt be embarrassed for needin them but this bitch buying that kind of stuff rubs me raw. Not 1 container of milk or loaf of bread or anything like that After I paid got out in parking lot and shes getting into 2010 vechicle like please no wonder people that really need help dont get it. Damn scammers shes probably on disability or in some section 8 housing too

I did search on the guys grave Domino sits staring at guy died on september 11 but from records I saw in the cemetery files he isnt the only one from that day buried there so still weird without real answer. Times like this I wish my big guy could talk hes already a great listener but wish i could know what he is thinking sometimes.

Anyway Jedidiah made it through his second surgery ok they are gonna keep him in the icu until at least this weekend. I wish for him that his parents would come see him it bothers him a lot that they wont. He does have many visitors and someone is there with him majority of the time. His shrink is something else never met a guy like him before very attentive and caring and all that. I told Jedidiah about you guys well wishes he told me to say thanks and that he appreciates it a lot. I will go visit him after work this weekend

[58corvette]

I just read your Last post.

I know how it feels to lose everything & keep Starting Over. I Truly Hope All goes Well for you & you are able to Maintain Your HOME. It is so unfortunate for any of us who mean well to Lose Something that gives us Peace & Comfort.

The Best To You Shannon!!!

Sincerely; Jim

[shanrucas]

Thanks Jim for your supportive words, I hope to get a chance to make some calls, I am so exhausted that I don't even know if I can properly explain my situation, guess Im gonna have to write it all down. I know its cause depression has its grip on me and I have been fighting it, it makes me so tired. I just don't know how long I can go on like this, but still I fight as does my mom.

I hope everyone is doing well, Im happy that Jedidiah made it through his surgery. I am sure he is going to feel much better in the future having this done.

I can't believe how much snow you have, it got up to 57 degrees here, nights have been warm to, its windy out, that kind warm stormy wind, more rain expected of course.

Shannon

[Hotspot]

Hello Everyone,

I don't mind your reply at all Findingmyway. My wife has been working with the boy daily for around a month now. Practicing his letter recognition, penmanship, reading and mathematics. We know from having other kids that he is dyslexic. My wife started using the colored overlays with him and it has significantly increased his reading ability.

His sleeping problems have a lot of components to it, therapy and time should help work them out.

Linda, raising average kids is difficult enough. Special needs kids really test every aspect of our beings. I sometimes think going to work is a lot easier and I'm not knitting sweaters. Anyway, did you get any tests results back how is that all going?

Shannon, I know you are stressed out. It is hard to have energy to collect one's thoughts in a situation like yours. You are a trooper though and I'm wishing you and your mother the best. I wish you weren't so, far away.

Brodman, I know what you mean about the scammers. I've gone on calls to find apartments full of children products of multiple fathers and or drug addict mothers. Kids with barely enough clothes or food but the section 8 apartments are outfitted with all the latest electronic gadgets. Then I get calls to other apartments of the truly working poor or elderly that are using their ovens to keep warm, patio furniture and milk crates to furnish their places. It all turns my stomach, the entire system is a flop.

Send me via email the man's name of the grave Domino is fascinated by I am curious. I can not believe it has almost been a decade since that horrible day. I lost so, many good friends that day. My nightmares are filled with that day and the months I spent combing the piles. Even though it has been quite a while I've never really talked much about it all. My wife was a wreck for a while after that and hated that I kept returning. She understood why I had to and was always willing to listen to anything I wanted to share with her. Too many horrible findings and sights that I never really got into it. My counselor thinks it has a lot to do with my problems now ah who knows.

Anyway, I talked with Jedidiah briefly before he fell asleep on me. They have him quite medicated at times I thought he was speaking a different language. I talked with his counselor for a few minutes also, what a nice man he is. He let me know that baring any complications Jedidiah will be moved to a general room for about 7-10 days on Fri. After that he will be moved to the CCU and then have the final surgery. I also wish his parents would come around in their thinking and visit him. I know he says that he understands but it's obvious he feels abandoned. No one should have to feel like that going through what he is.

[Misty]

Shanrucas, I had never read about your situation before.

As you have been so lovely to me thought I would have a read and reply.

I really do know how you feel with looking after your mother. I cared for my grandmother for 2 yrs after she suffered a stroke that basically rendered her completely dependent! It is hard, and sometime you can feel very resentful, that's unavoidable. Just know that it is worth it. I used to put myself in Nan's position and I realised exactly what she meant when she would express her gratitude! My love for her and the love I recieved back from her helped me to just get on with it.

Although not entirely the same as you, I was pregnant and had new babies to look after as well as older children. Life was a daily battle, but I believe Karma will pay me back eventually. Nan has been gone for nearly 2 years now. Her ashes sit on the windowsill in my new place. I miss her tremendously, she was my mother for so long, I felt taking care of her was my way of repaying her for having always been there for me.

I lost my confidante when the stroke hit as it affected her personality as well. But in moments of fleeting clarity she was still the same strong woman that I even today take inspiration from. I was and probably still am very lost without her. But at least I know that I did my bit for her. If it had have been down to her children she would have been stuck in a home, which she would have hated. Don't know if my words will help, or if it's just another blather load.

I just wanted you to know that you're not alone!

[shanrucas]

Misty,,thank you for your kind words, since I have come to this community I have felt less alone. I totally understand what you mean by putting yourself in the place of the person you are caring for. My mom is amazing, I don't know how she doesn't, she keeps smiling, even in times of pain and great comfort. Knowing what I know now..would I do it all over again...yes. It is so worth it to have her happy in her home rather than depressed in another home or facility.

Everyone here has giving me great comfort especially through the bad days.

Hotspot..I not surprised at all that your counselor thinks perhaps the events of September 11 has something to do with your issues...things like that have a tendacy to sneak up later on..at the time of the crisis you are in the moment and no time to process whats happening in front of you...I am honored to call you friend.

everyone take care,

Shannon

[Lindamomof7]

hey guys... Hope everyone is well....

went to Dr today and got ct scan results. Seems I have to get an endoscopy asap as something showed up in my stomach and I guess it could be stomach cancer. There were a few other lymph node issues as well so I have to see gastro Dr and gynecologist.

Had therapy session right after so that helped so I guess I have to just keep things in perspective until all the results are in. Now I need to schedule for echo and stress test and get clearance so they can take me off coumadin and do the endoscopy....

Too many scheduling of tests and coordinating with Dr's.... I think I have had enough. I feel like I am climbing a mountain in a snow storm. Anyone got a ski lift they can send my way???

Ok I guess the game goes on.... UGH.......