Thread: Kate's On Line Journal

  1. #1151
    Hey, Martha - SO glad to hear you're okay and the fort's still standing! My oldest son and his fiancee are getting ready to move to Winter Park - today! - and seeing those storms really freaked me out! Guess what I ran out and got them as a moving present? A NOAA weather radio! And made them promise to plug it in as soon as they get there, lol!!
    _____________

  2. #1152
    I am smiling knowing that you are safe as is hubbie and the dogs. Glad to hear that everyone weathered the storm ok. I knew you were headed to TX in early Feb. glad to hear you missed the storms.
    Every day I wake up is a good one

  3. #1153

    Kate and Bruce

    Kate and I have known each other over the years, here on CareCure. She has shared many stires insights, laughter, sadness and joy. I know Kate. When we saw each other last year in Crystal City, there was mmediate recognition, a feeling of knowing someone forever. A hug that well closed the gap. How often do you pick up the phone and track down a stranger at a hospital....never really. Yet 2 years ago when Bruce's plate came loose, Martha and I tracked Bruce and Kate down, and talked as if we had known eah other..always.

    Saturday I got Kate's book in the mail, tonight I picked it up and began reading. I know things now, small parts of their story, insights into their pain. I feel a sadness, sort of weird I guess. I wish I had been there on day 4 to hug and support, to try to answer questions. I wish I had been there for my friends.

    Thanks for writing Kate, for filling in the pieces of your families story, for sharing the raw truth so honestly, with no sugar coating.

    Damn I hate this SCI. Glad the mental picture I have of kate and Bruce is of them dancing at the rally.Tonight, I try hard to hold onto that, to shake away the vivid pictures in my mind, painted by the book. I feel a saddness, damn, damn damn.

    Again, thanks Kate and Bruce, for sharing your intimate and darkest moments.

    B~
    Last edited by cheesecake; 02-26-2007 at 01:29 AM.
    Every day I wake up is a good one

  4. #1154
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    Location
    bellevue, wa, usa
    Posts
    10,992

    Thanks Bernadette

    Bruce and Heather went to Utah together last week and left me by myself in our house with our big old Golden Retriever and our 2 cats, Oreo and Sophie. Oreo has lived with our family for 15 years; a couple of weeks ago the poor sweetie got some kind of growth in the back of her throat that makes it hard for her to swallow.

    We've always laughed at her for being such a fatty, but now we're glad in a way, because her fat has probably kept her alive for an extra week or so. She's not looking good . . . bony and dirty because she can't wash herself very well. She still purrs when you pet her, though, and doesn't seem to be in any pain or we'd have taken her to be put down.

    So, all last week I would get up every morning and try to get her to sip a little watery gravy. I'd pet her and avoid looking at her dirty fur, and then go to work and hope all day that she was still breathing when I got home.

    It was a terrible week for me.
    Facing the slow death of a beloved old pet is just not something you should try to do by yourself--and neither is facing SCI.

    That's kind of the point of the book. As Wise has said, SCI happens to families, not just to individuals. It happened to my family, and to yours, and to everybody else's around here. Sometimes I think about how different the last few years would have been without this site and people like yourself who have become a sort of extended family to us.

    I think it would have been like me, wandering through the empty house, worried and dreading the next thing. Instead it's been like this morning, when even if your family can't actually do anything to help or fix things, at least you know you're not alone.

  5. #1155

    Too Quiet Here

    Not sure where all the old timers have gone but it has gotten Soo quiet in here. I guess life changes, huh.
    My oldest just graduated from middle school and was accepted at an all boys high school. Damn I can not believe he is growing up. The days of suction machines, g-tube feeds and metabolic crisis are gone. Now we are dealing with teen age moods, attitude, and well girls, heartache and rejection.
    Never thought I would think the medical issues were easier to deal with, but hey, they were.
    I am so proud of him, amazed at who he has become, what he has accomplished and where he is going in life. After his first trip to DC for the Christopher Reeve Paralysis Act and his return for ESC and the Christopher and Dana Reeve Paralysis Act, he has been bitten by the advocacy bug big time. He is finding his voice and detemined to make a difference.

    With this thread as well as with my son, I ponder, where did time go................
    Every day I wake up is a good one

  6. #1156
    Moderator Obieone's Avatar
    Join Date
    Aug 2001
    Location
    Manitoba,Canada
    Posts
    5,630
    Quote Originally Posted by cheesecake
    Not sure where all the old timers have gone but it has gotten Soo quiet in here. I guess life changes, huh. ......... etc. etc. and then .....

    With this thread as well as with my son, I ponder, where did time go................
    Old timers ... yes well you know what they say Cheese "birds of a feather" ...... !! Any way I've been wondering the same thing and admit to some guilt for not coming to the Journal thread more often myself !!

    I too have Kate's book but have not gotten through the entire thing yet ..... I have a feeling it may take me most of the summer because I read a little .. which inevitably leads me down memory lane ... resurrects an old memory from Bill's and my experience which I sit and ponder for a while, analyze a little, have a little cry ... marvel at how far we've come and all the life changes since and then carry on reading ! I'm so sad yet so thankful there are those out there that I have connected with that truly understand this journey .... you speak so plainly Kate and in some parts of your story its as though you got right inside my head ...... I so get it and totally understood some of the frustrations you dealt with ......

    So ... now for a brief update on our little family ... and I do mean little! I still haven't wrapped my mind around the fact that three of my kids are up and out and pretty well on their own .. it all happened so fast ... reading the graduation threads in the other forums brings it all back they are such bittersweet events .... but thank gawd for Laure-Jane our 13 year old (going on 21 ) ! She will most certainly be a diversion this summer ... she has blossomed into a full blown teen (oy vey .. as Wise would say ) which is a good thing I suppose with Bill still recovering in the hospital from those damn pressure sores (4 months now) ... dealing with her angst and issues is the most normal thing about our life at the moment!

    And speaking of Bill .. in spite of the interminable time in hosp there has been progress and both sores are much better and healing well .... however ... he has developed a skin erruption (I know of no other way to describe it) on his belly on the site where he had his gall bladder surgery right near the old incision line. Two small pin holes that look like they could be pimples or cysts under the skin ... our doc wondered if it might be a stitch that has worked its way up from before but just isn't sure ... so we are investigating that ...... doesn't look serious but with Bill what starts out looking like nothing always seems to turn in to something ...... aside from that he is in relatively good spirits .... I guess on the upside being in a small country hosp (13 beds) he does see alot of people and gets lots of visitors (too many at times) so thank goodness for small mercies ... for myself I'm always mindful there are many far worse off then we ...... so I remind myself to count our blessings ......

    Oh ... one funny thing (not so funny to Bill) .. sometimes he comes home on a pass for a few hours and will be so happy to see our dog Shady ... only problem is it always seems to take Shady quite a wee while to warm up to him and it really hurts Bill's feelings .... someone suggested it is probably the hospital smells on him ... does that make sense ?? Usually by the time he is going back they have made friends again and they are as they were but its a dance they both seem to have to do each time ..... makes me kind of sad for them both .......

    The weather has been very nice except for a little too much rain .... but I don't mind... it makes everything so full and juicy and green and beautiful .... our little prairie town comes alive in the summer and I love it so .... its a good thing because it sustains me through our long cold winters ! I didn't just say the "w" word did I ????????

    Well I must dash off to work now ..... so yes .. come on out from behind that rock you "old timers" you and you young uns' too .... carers all .... its fun to read about whats going on with everyone .... I know I have that pipe around here somewhere and if that doesn't suit there's always the ice cream to share ........ stay strong ...

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  7. #1157
    Senior Member zillazangel's Avatar
    Join Date
    May 2004
    Location
    North Carolina, USA
    Posts
    3,399
    So glad to hear Bill is doing better Obie. About the dog - is it possible the dog feels abandoned by Bill? He can't know that Bill has no choice in being gone, as a dog, all he knows is that he is gone. Maybe he is distrustful and it takes awhile to get past that, and then the cycle repeats itself? Just a thought ... I'm no dog expert though!

    Old timers ... I have been with Chad 3-1/2 years now .... that kinda blows me away. It seems like my first visit here was not very long ago at all. Wow.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  8. #1158

    Teenage Sadness/Anger

    I am dealing with a son torn with anger and sadness tonight. He just doesn't get our President. My 9 year old piped up, "If I get stem cells, how come Bush doesn't?" Ah, the innocence of youth.

    The 14 year old is both discouraged but at the same time wanting to go to DC and give the President a piece of his mind. I keep reminding him that he did help push Congressman Gilchrist for a Yes vote and we got it.

    On the up side, Bush just put more fire in the sons belly to keep pushing forward. He does have that teen age mentality that "he could talk the president into it". He is a very spiritual and religious young man but keeps asking, "Why is our Presidents religious views getting in the way of science?"
    He told us that Bush says this is about ethics, but wants to know where Bush's ethics are at. "Mom, so many people are suffering, where is the right in that?"

    I wish I had the answers, all I can do is listen and take him back to D.C. again, and again and again and again if needed.
    Every day I wake up is a good one

  9. #1159
    Moderator Obieone's Avatar
    Join Date
    Aug 2001
    Location
    Manitoba,Canada
    Posts
    5,630
    It's a bit of kismet that you should post about your son's feeling about the Stem Cell Bill Cheese ... because I too had a very visceral reaction to the news when I read it in a headline while at work today .... I had to literally stop and compose myself because of the flood of emotion I felt! My thoughts immediately went to CC and all of the advocates here that work so hard for a cure!

    Try not to be discouraged ... rage on and it will be done someday ..... I feel it in my bones. I know you probably feel as though time is a wasting but "he'll" be gone soon and with any luck you'll have a president who listens to the people and isn't afraid to support the science!
    I've often wondered if politicians would vote/feel the same if they have a family member or some one else close to the them in our circumstances ..... peace .. and a hug to your boy!!

    Obieone
    Last edited by Obieone; 06-21-2007 at 12:56 AM.
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  10. #1160
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    Location
    bellevue, wa, usa
    Posts
    10,992
    Quote Originally Posted by Obieone
    It's a bit of kismet that you should post about your son's feeling about the Stem Cell Bill Cheese ... because I too had a very visceral reaction to the news when I read it in a headline while at work today ...
    We all had a visceral reaction today, Joyce. The sheer ugliness of waste is so hard to witness, especially when accompanied by sanctimonious posturing in the face of such desperate need.

    I'm so glad we were in DC this year, especially with our amazing Heather. She came home and wrote her American Gov't paper on the question of federal funding for escr . . . sometimes I want to just hug that child and never let her go.

    Thanks for your thoughts about the book--I had to re-read it myself recently to prepare for a reading at a local bookstore. !!

    If I hadn't written this stuff down when i did, it would certainly be long gone. There are payoffs, though. At the reading there was a 60-something woman whose husband broke his back during our incredible December storm last year. She sat in the front row wiping her eyes, and I could hardly look at her and keep going. She told me later that this bookstore event was her very first outing without her husband since his injury, and that she had been feeling so guilty about wanting to get out.

    She said that she was glad she came, and that she felt like herself for the first time in months . . . so I told her she's the reason for the book. Because I wanted so much for somebody to give me a roadmap and some reassurance, and there was just not much out there. Please tell me it makes you laugh sometimes! We did laugh, and we still do.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •