Kate's On Line Journal

[Obieone]

Welcome georgiacare ..... our opening line here is "sorry you had to but really glad you found us".
My husband Bill has a T5 injury he received almost 12 years ago now ... I know what you mean about knocking on wood it's like you're afraid to give air to the thought in case you jinx something ! But it's kind of indicitive of how we live our lives after a sci .... one day at a time ... savouring every moment in a way we took completely for granted pre injury .... even moment by moment.
In fact you've caught me enjoying one of those moments right now since I'm still on a high from witnessing our Olympic victory yesterday in the hockey game ..... I hate to admit it but I'm one of those fair weather fans and only truly enjoy a hockey game when there's something in it for us ..... although all my kids played .... including the girls .... geez maybe I'm not really "canajun'" deep down ...... NOT ....
Look forward to getting to know you gerogiacare ....

Obieone

[georgiacaregiver]

Thanks Obieone and congratulations on ALL of Canada's metals. I too am a fair weather fan of all sports, except for NASCAR. I'm down here in the middle of that and have been a huge fan since early 80's. I did watch some of the games this time and have to say the winter games are probably my favorite. I do love the equestrian events in summer though. We're on the brink of spring down here. The news today is rain and possible snow through midnight tonight. UGGH! I am so ready for spring. I ride and compete in barell racing and competitions start this weekend. Haven't had much saddle time either. I'll bet you are up to your eyes in snow up there? My husband too is tending a pressure sore. Had flap surgery in October and, bless his heart, has been in bed almost every day since then. He can get up but on days like this, he just opts to stay in bed and off of it. Well, better go, have to go to work.

[u2treasure]

I'd like to join in this online journal. I am another SCI mom. I'm having some rough times lately dealing with my daughter's anger and non-comliance issues and lack of socialbility My daughter was in her accident July 4th 2008 while my husband and I were riding our Harleys to Ashland OR. At that time, Meadow was 13-yrs old and now just turned 15 in January. We just got home from Shriner's Hospital where she was supposed to spent 2-3 weeks in their advance PT program; however, she was sent home because she didn't want to participate fully. She's rude to people and will tell you straight out she doesn't like people. I'm the only one who can see the positive qualities in her becasue I'm the only one she allows to see them--the laughing, the heart-felt talks we have on what her goals in life are, her sense of humor and playfullness. Leaving her at Shriners and on her own, was a test run for bigger things supposed to happen this summer, like Project Walk in Southern California, which is expensive and I would need to take off 3 weeks off from work. My husband and I are not sure if we would be spending our money wisely since she was so non-compliant at Shriners, although, project Walk does not impose nearly the same rules. We don't impose a lot of rules in our home as long as she follows the basics, but I'm not sure if I am enabling her. I want her to be successful and strong-willed, but I don't know how to redirect her strong-willed temperment towards recovery. Can anyone out there give sound advice on getting my SCI teen out of this dark place. I'm a social worker that works with family of special needs children and I just can't apply my knowledge to my own situation.

[kate]

I'd like to join in this online journal. I am another SCI mom. I'm having some rough times lately dealing with my daughter's anger and non-comliance issues and lack of socialbility My daughter was in her accident July 4th 2008 while my husband and I were riding our Harleys to Ashland OR. At that time, Meadow was 13-yrs old and now just turned 15 in January. We just got home from Shriner's Hospital where she was supposed to spent 2-3 weeks in their advance PT program; however, she was sent home because she didn't want to participate fully. She's rude to people and will tell you straight out she doesn't like people. I'm the only one who can see the positive qualities in her becasue I'm the only one she allows to see them--the laughing, the heart-felt talks we have on what her goals in life are, her sense of humor and playfullness. Leaving her at Shriners and on her own, was a test run for bigger things supposed to happen this summer, like Project Walk in Southern California, which is expensive and I would need to take off 3 weeks off from work. My husband and I are not sure if we would be spending our money wisely since she was so non-compliant at Shriners, although, project Walk does not impose nearly the same rules. We don't impose a lot of rules in our home as long as she follows the basics, but I'm not sure if I am enabling her. I want her to be successful and strong-willed, but I don't know how to redirect her strong-willed temperment towards recovery. Can anyone out there give sound advice on getting my SCI teen out of this dark place. I'm a social worker that works with family of special needs children and I just can't apply my knowledge to my own situation.

Hi, u2treasure

I don't have a disabled child -- my husband broke c6 9 years ago yesterday -- but I do have a couple of daughters, now 19 and 21, who were in middle school when he got hurt.

What's Meadow's injury level? How incomplete is she? What form did the noncompliance at Shriner's take? Was she antisocial before the accident, or is that new?

I'm sure you've heard this before, but it's important to remember that it takes a long time for both body and spirit to recover even a fraction of the old energy, and that pretty much goes for all of you . . . I've heard Wise say that a cervical injury will steal 5 years of your life, a lower one at least 2.

Seems about right to me. Maybe some others here can speak to your specific question, but in the meantime I wanted to say good job, Mom! Sounds like she's lucky to have you.

-----------

On another note . . . been awhile since I read this journal, or wrote in it, for that matter. The daughter I was helping with her math all those years ago is graduating from college in a couple of months, and getting married right after that. Yikes!

I remember when the four of us were in his hospital room, the night before he finally got to come home. By that time I'd realized what a tough thing was ahead of us . . . those wretched first months trying to adjust & keep our heads up and not look back at how it used to be. My terror about whether or not I could manage, whether or not he'd be okay, whether or not the girls would ever be happy again. I said then that I just didn't want to deal with the next few years, that I wanted it to be 5 or 10 years later, like magic.

And now it is. My instinct then was right . . . somehow we did get through to the other side, and all of us sort of found ways to cope and even thrive. But I still hate SCI passionately and completely.

[rdf]

I remember when the four of us were in his hospital room, the night before he finally got to come home. By that time I'd realized what a tough thing was ahead of us . . . those wretched first months trying to adjust & keep our heads up and not look back at how it used to be. My terror about whether or not I could manage, whether or not he'd be okay, whether or not the girls would ever be happy again. I said then that I just didn't want to deal with the next few years, that I wanted it to be 5 or 10 years later, like magic.

And now it is. My instinct then was right . . . somehow we did get through to the other side, and all of us sort of found ways to cope and even thrive. But I still hate SCI passionately and completely.

Amen Kate.

[martha]

Happy Holidays

I just stopped by to wish all of you WONDERFUL "members" of Kate's Journal the happiest of holiday seasons. I think of you all often and the incredible friendship and support that I found here. I truly hope that you are all well.

Happy Thanksgiving!

[kate]

I just stopped by to wish all of you WONDERFUL "members" of Kate's Journal the happiest of holiday seasons. I think of you all often and the incredible friendship and support that I found here. I truly hope that you are all well.

Happy Thanksgiving!

Oh, god, Martha! Where are you?

[cheesecake]

Oh, god, Martha! Where are you?

She's here with us, like she always has been Kate. Don't ya know that's the beauty of this thread?

Love ya Martha. Peek out from under that rock every now and them. Now we need Marmalady to pop in and Russ too.

[martha]

Hi Kate! Like that proverbial bad penny, I keep popping up. I'm finally back in Texas where I belong. And CC is right, I've always been here in spirit and think of all of you often and you're all often in my prayers. You were all such a HUGE part of my life and those feelings never change. I was hoping to 'catch up' on how everyone is but it seems to have been a bit quiet in the Journal lately. I hope others will stop by and check in.

Love you too CC! And all of the incredible "members" of KJ!

[noregrets]

New SCI wife

This is my first time reaching out in any way in dealing with my husband accident. But if I don't do somthing I feel like running away and never stopping. But I know that this is just a feeling. I just need some one to just listen and get what I am feeling. To tell me that I do have rights to hurt, cry, get mad, and yell. with out being judge that I can't handle this because of it.

[martha]

This is my first time reaching out in any way in dealing with my husband accident. But if I don't do somthing I feel like running away and never stopping. But I know that this is just a feeling. I just need some one to just listen and get what I am feeling. To tell me that I do have rights to hurt, cry, get mad, and yell. with out being judge that I can't handle this because of it.

You've definitely come to the right place. I'm sorry you had the need for this resource, but glad that you found it. The wonderful people here kept me from going insane after my husband's accident and through all of the "unknowns" as they popped up. You can express any feeling, ask any question or just vent and talk here without judgment. This is an incredible group of people and they ALL know exactly what you're going through. I hope you find the support and friendship here that I did and that we all need. Absolutely everyone was wonderful and I formed some lifelong friendships here. I'll never forget the night that Kate literally sat up all night with me on the computer helping me through one of Julian's first crises after coming home. I would have never made it without this beautiful group of people.

And one other thing -- this was the one place I could come and actually laugh over the absurdities in our new reality or cry with people who understood why.

Good luck, stay strong and use this site as it was intended -- for the support and education and friendship that we all need.

Hugs,
martha

[LindaT]

Hi noregrets, I often read the old threads here and helps to find others are as overwhelmed or have the same feelings I do.
Keeping my head above water is tough some days as my husband has a lot of complications and pain.
Family dynamics change in ways I never would have dreamed.
My adult children are devoted to their step dad and his own family were first in denial and now scarce.
I miss our old simple life.
I don't see as much caregiver advice or support as I used to or thought I would find lately, but there are some great people here who understand the trials of SCI, equipment, docs etc.
Best wishes.

[gjnl]

This is my first time reaching out in any way in dealing with my husband accident. But if I don't do somthing I feel like running away and never stopping. But I know that this is just a feeling. I just need some one to just listen and get what I am feeling. To tell me that I do have rights to hurt, cry, get mad, and yell. with out being judge that I can't handle this because of it.

Hi "Noregrets,"
There is a forum called Caregivers, and it is membership only and a relatively private place to talk to people who have and are experiencing what you are. Unfortunately the forum is slow and not very well used, but there are some excellent threads from the past that you might find helpful just by reading them. All of us who are close family caregivers share a core of common feelings. We are all in this together in some way and we care about you.

May you find many things for which to give thanks.

NL (GJ's wife and caregiver)

[kate]

I just need some one to . . . tell me that I do have rights to hurt, cry, get mad, and yell. with out being judge that I can't handle this because of it.

Hello, noregrets . . .

You have every right to be sad, or enraged, or devastated, or frustrated, or broken-hearted. In fact, you kind of must experience some of that in order to handle your situation.

The only people who would judge you over those things are people who don't know what SCI is -- and their opinions are not valid.

It always feels wrong to me to say welcome . . . I mean, it's not like any of us is here by choice, eh? Still, you are welcome and I hope you feel free to say whatever you like here.

[Obieone]

Martha ..... I'm just so ridiculously happy to see your face - finally - after all these years (a borrowed phrase from Betheny - after I posted my avatar awhile back ) I'm always so glad when you poke your head in from time to time to say "hey "

Caregiving is a unique place .... there is a quiet sacredness about it .... most of us find at some point our need is no longer as urgently required because our significant other has either passed or moved on in some other direction - and that is always bitter sweet. Sometimes - its because the person requiring the caring in our lives has reached the point where we are not as needed as we once were or we've just got comfortable with where we are at .... and the urgency seems a little less desperate . Whatever is going on in each of our unique situations ... we here in Caregiving are always .... still here ...

What I know for a fact is there is a lot of reading goes on in this lonely little place - and we become connected without even realizing - we start to know each other without exchanging a single post .....

Still ... I'm also always ridiculously happy when everyone comes out from behind their rock now and again and lets the rest of us know ...... "we are here, we are here, we are here ....... "

Obieone