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Thread: Kate's On Line Journal

  1. #431
    Gawd - Here it is the 5th of October already - can't believe we've been here 3 months already! Most of the boxes are put away, but we still have stacks of 'art' to hang.

    Project for the day was ripping the carpet out of the living room and hallway - looked yucky, gathered animal hair and who knows what else; beautiful hardwoods underneath (we knew there were hardwoods, but held our breath re the condition!).

    I think we finally have a bite on the Jersey house - it's all dependent on a contractor getting his ducks in a row to put in a nursing home, and getting approval from the township, so we won't know for sure til the end of October, and won't close til December. I just want it over!!!

    Kath - I just realized no one ever got back to you re your raising money idea for SCI research! Since your post has gotten buried under my little meltdown, here it is:

    "I'm working on this idea and need some help from my good friends. As most of you know I accepted a new position in May working for a company that does fund-raising in schools and for non-profit groups. We offer the Entertainment coupon book as a fundraiser. I am trying to figure out a way to raise money for spinal cord injury through Entertainment. Before I pursue this any further I could use some feedback from you. What group would you donate the proceeds to and would you buy a book in your market if you knew a good percentage was going to this cause? kathy"

    Well - not that i'm biased or anything, but The Spinal Cord Injury Project at Rutgers, headed by a guy named Wise Young, I hear is doing good things! I would absolutely buy a book, but you might want to broaden the field a little, by mentioning other neurologic disorders, i.e. Parkinson's, Alzheimer's, ALS, etc. Wider market and all that. Let us know how it's going!

    And Nanda, thank you for the kind thoughts. If I read your post correctly, you're an M.D.? I often wonder about the impact devastating illnesses have on family members who are in the 'profession', and whether knowledge is a plus or minus? You know our thoughts are with you and your family.

    Take care, all, be well, and let's hear from you!

    _____________
    Tough times don't last - tough people do.

  2. #432
    Member NANDA's Avatar
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    Well things are getting better.... I think, my brother is trying to void for himself, we were doing intermitents caths, now( 5 days ago!!) he feels he has to go an tell us so we may help him with a little Crede s method, of course it is too soon and he hasnt get his Urodinamycs done( I do not know if this is well written)I think it may be a good sign since he feels the urge and even can wait until we help him( sometimes), my mother is very sad sometimes, my father too, he is better now because of the Psychology support, he did not want it at first, but perhaps listening to all the people who has some kind of similar or worse problem and pain as us has been helpful to let him talk an fell about it, my other brother is I dont know perhaps sometimes in and sometimes off the things.... me I dont Know exactly sometimes am not very well(emotionally) I cry a lot when I am alone and sometimes with my brothe when he is down and needs to get some comfort...but on the other side I think we are lucky from a lot of thing we are together and love and care for eacho other Juan Sebastian is getting better, and I just know for a fact that we will be alright( dont know when!),
    Thank you for listening to me...
    Thank you Vicky yes at least there are good news.
    Yes Jackie, this things for a MD are sometimes more devastating, of course I can not say "more" because in my home it has been worse for everyone, but as a Doctor sometimes knowing is painful.. but not knowing is worse I think this just should not happen... NOT happen to anyone.
    (please excuse my english mistakes)

    NANDA

  3. #433
    Nanda, Your brother sounds like he has a tremendous caring support system in you and your family. And I'm a firm believer that that is one of the most important things a person can have! And - I'm sure you know this already! - your tears and sadness are all perfectly normal; what you and your brother and family are feeling are the aftermath of the emotional shock; it's good to let it out; I've seen so many people try to be 'stoic', and not let anyone see their emotions, or even deal with their emotions themselves; better to get it out and deal with it as it comes. I still cry at times, even after almost 5 years. And it takes next to nothing to set me off - watching Matt struggle to do something triggers my tears and just sneaks up on me with no warning at all!

    So happy to hear of your brother's improvements, and may they continue! And what a lovely name he has - Juan Sebastian!

    I'm glad you've joined our group - and please - don't worry at all about your English - it's far better than my Spanish!

    _____________
    Tough times don't last - tough people do.

  4. #434
    Member NANDA's Avatar
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    Hi Jackie: Thank you for your words of support, I completely understand what you say and agree, I hope Matt is doing better, Juan Sebastian is ok, sometimes he is very anxious and he going through a period in which he is afraid of some things ( like water in his head) because is remembering him the accident.. so it is hard to del withit becuase it hurts so much to see him in pain.
    Things are pretty much the same.
    Take care

    NANDA

  5. #435
    Thought I would do a Fall update. The kids are back in school..yee ha and settling in nicely. My son went away for a school outdoor program for 4 days and 3 nights and we never got a phone call. Anyone want to venture how many times I checked the phone for messages? The rigors of sending off a 10 year old..ugh. Then it hit me...he had never been away longer than 18 hours. I had to put his meds and nursing diections together and I found myself wondering, are we ready? My son is NOT SCI but has several disabilities and I have been his caregiver beyond the simple Mom duties. I never realized how much until I had to prepare him for days away. He needed to leave class 8 times a day just for medications. The teacher was a real trooper and carried the meds on the hikes so he could go along. The amazing part was realizing how far we had come....only one machine went (nebulizer) and that was no big deal. It was just 2 years ago and I was packing 3 machines off to school. Life does get better.

    My 5 yr old is becoming a toothless wonder. I am hoping that the loose teeth stay put until after class pictures. Right now he has 3 missing teeth and 4 more very loose teeth. He says he is a Jackaline (Jack-O-Lantern).
    He has only been removed from Kindergarten once so we are already ahead of last year.

    This past weekend we went apple picking, the weekend before, pumpkins. The kids are awiting Halloween with great anticipation and hubbie has already finished off the candy once! No more chocolate for this house.

    Any updates from others?

    "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles"....C. Reeve 1998


  6. #436
    Senior Member kate's Avatar
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    Sunday night, kids gone to bed, Bruce on the floor in the living room, trying to follow his PT's instruction: "More reps, more weights!"

    Radio in our room playing the blues, dishwasher running, dog snoring behind me.

    I was away for 24 days, and here's a couple of things I found out:

    1--My kids are just as capable of housework/yardwork shit as I am, and even better, they're willing to do it!

    2--My husband doesn't need as much sleep as we both thought he did.

    3--I have a better sense of how much work a good day can hold. I don't feel defeated and guilty because it's not ALL done. At least, I haven't felt that way yet.

    4--Do I dare to say it here? I love my life. I still hate SCI passionately, and I'm determined to make a giant noise about what it's like with this book . . . but I love my life.

  7. #437
    Welcome back, Kate!

    _____________
    Tough times don't last - tough people do.

  8. #438
    Happy Hallowe'en!!!

    The fall colors were glorious this year, but they're gone now, for the most part. Living in this beautiful countryside means: no trick or treaters tramping hopefully up to our door!! I'm a little sad about this, although I did get to witness the elementary school's Halloween parade yesterday...that was great fun! I've been working at one of the other library branches this past week. When the kids from the school (which is right next door) came over for their library session, they had to touch a "brain" to get their Halloween candy!!

    My Vista "job" may turn into a REAL job, if all goes well. They would like to keep me around, and I think I should get a real paycheck, with Brianna planning on college in the fall. Wish me luck!

    Speaking of college, Bri LOVED Marshall University! It was like night and day when compared to WVU. The entire campus is FLAT. It's two blocks wide and four blocks long, and everything is RIGHT THERE. They have transportation for disabled students. It was like a dream come true. So...we go apartment hunting soon...the building she has her eye on is one block over from campus. It used to be a hotel, but was turned into apartments. She also found out that she can join a band without being a music major...this was MAJOR good news! If she couldn't participate in band (I think she's leaning toward a concert band) she was planning on....are you ready?....trying out for cheerleader.
    We've come a long way....

    Okay, you guys, check in....if only for Jimmy Mack's sake!!

    Vicky

  9. #439
    The Charleston 'fall' has been cooler than usual, a nice transition for me from the North! Beautiful weather, usually in the 70's during the day ( I remember usual temps in the high 80's in October!).

    Pippin (yes, from LOTR, because he's such a mischief maker) has taken over the house; I've never met a more gregarious or outgoing kitten; after two days, he knew his name and was coming to me when I called him! And absolutely fearless around the other animals who don't quite know what to do with him. His first habit the first few nights was sleeping - or trying to sleep -on my face!!!! After a few firm reminders, he now sleeps on my pillow with one paw on my forehead.

    We have a contract on the Jersey house, but it's complicated - depends on the buyer's house being bought by a developer who's going through all his permits and stuff - we should know by next week. I will be SOOOO glad when this is all over!

    Matt is in physical therapy and will start cognitive therapy in two weeks. Physical therapy is frustrating because he runs so many old tapes from prior sessions, but at least he's getting something.

    We've been doing major yard and house work here - the previous owners had let the yard go, and planted things with no regard as to what they required sun-wise, so I pulled and transplanted and planted some of my own - looks really neat! Hubbie took down a tree from the front yard, and now you can actually see the house! We took up the wall to wall in the LR and hallway, beautiful hardwoods underneath, and just finished installing the toe molding around the borders.

    Don't know if I've mentioned this before, but I'm investigating buying a catering kitchen truck - like the guys that park outside office buildings. Much less $$ than a remodel of the house to do catering; lots off office buildings and hospital/doc's offices to park at and do breakfast and lunch. I'd also be able to do private catering, because all the prep would be done out of the truck.

    Hubbie has some interesting job possibilities in addition to what he's doing now.

    Vicky, I think we'll be just the opposite of you tonight for Halloween - our NJ house was so isolated we got no trick or treaters; now, we're in a medium upscale community, so we've had fun decorating and figuring out just how many bags of candy we should buy!

    How's everyone else doing?

    _____________
    Tough times don't last - tough people do.

  10. #440
    Just in from trick-or-treating here. We headed to friends house in Delaware, had dinner and took the kids out. Both boys were pirates but bits and pieces of the costumes were taken off as the evening progressed. The eye patches kept falling, the wig got itchy and the hats wouldn't stay on.
    The boys actually asked to head home as they pooped out from the walking. They looked marvelous in the costumes and had great fun.
    The weather was great tonight, just a sweater needed....much different that we have been getting. Perfect for tooling around outside.

    It is hard to believe that christmas is less than 2 months away and that I don't have a clue about Thanksgiving! We are on our own aas family is on the West coast...this can be a lonely time of the year. The boys are already for a snow day from school while I can't believe they had 4 days off in October.

    Martha, peek out from under the rock and give us an update..I miss hearing from you. How about others, whats new, the same, good, bad or changing?

    "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles"....C. Reeve 1998


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