Kate's On Line Journal

[trice]

Well, I pray that I will have a smile like you guys when we come through everything that lies ahead for us. We have good days but now we are having more bad than good. I will continue to read and post before I explode. I am glad you all created this for us.

[Obieone]

Hi Trice .... welcome ... if you ever feel like sharing some of your story we're here!! And if you do happen to explode .... we'll be here then too ... sometimes it does feel like 1 step forward two steps back ! We all just try to "keep breathing" ......

Obieone

[jeweleyez68]

Hi everyone
We have a problem..... and im trying to understand.
We had a very special little boy that was in our lives before his mother was taken away in a very tragic car accident. He was alone in the house when the state Trooper delivered the news to us. Normally dfcs is called in when a child is left by themselves being he was 3 yrs old at the time but i asked if he could stay with us till a family memeber could come get him.
They allowed us to keep him untill a family memeber came to get him(he was used to seeing us every day before his mother died).
They have excluded us from him since.....Today was his B-day we werent invited, I'm pissed he is the little brother of my stepson he got to go, we wanted to but never was personally invited...
Why do people want to that to some-one who thinks of a child as if he were there own? Rollin allways told me that his ex-wife's family allways thought of no-one but themselves.......I Believe you now baby.
Thanks guys for letting me vent...............

[cheesecake]

Hi~
Just poking my headin to give a shout to everyone. Life here has changed a lot, almost like fast forward. Another Halloween just around the corner, cold weather and time to pass the pipe. We just finished an early round this week.
Hopefully we don't see another for awhile.
Hope everyone is well and going strong. Miss your voices.
Cheesecake

[kate]

It's getting ridiculous how quickly time passes . . . here's the news about my world.

Bruce broke the 5th metatarsal in his right foot a couple of weeks ago. For those who don't know, he's got a c-6 incomplete injury that he has ever-so-slowly learned to work around. His motor injury is mostly on the right side of his body -- the left side is screwed up sensation-wise. He was walking, sans cane, across our dining room and not paying attention when he put his weight on his right foot before it had actually planted . . . cccrrrruuunnnccchhh.

Sigh.

As I write, he's at the doctor getting his first follow-up x-ray, so please send a good thought our way. I think he's busier now than he was before he got hurt, so it's been kind of a challenge to be slammed with the need to slow way down again. Plus, many very depressing reminders of some grim times.

Emily (the one who was needing help with her algebra when I wrote the first entry in this thread) is about to start her 2nd year of college on Wednesday. Her big issue this week is that she borrowed her boyfriend's beater of a car while he was stationed briefly in Korea, and somebody smashed in the passenger window and stole his CD collection . . . she's been that very cute girl you see driving around with saran wrap duct-taped to the car. You know the one!

Heather (who came with us to W2W in Washington last April) is in her senior year . . . planning to go to the University of Utah next fall if she can get in. She's a marvelous kid, and I'm kind of embarrassed to admit that I spent most of yesterday afternoon doing what moms of teens should never do: cleaning up after her. Sigh again . . . I've so failed at teaching her how to stay organized, and she's going to pay the price for my enjoyment of taking care of her this way. That's weird, isn't it? I like doing it. I like the feeling of seeing her space all glowing and welcoming, knowing that she will (correctly) understand that my chances to "take care" of her this way are getting extremely limited. I know, I know--it would be a lot kinder to make her do it herself in the long run. I suck at mothering in many ways!

I am working a lot, like Bruce. Mostly very contented, lots of creative projects and plenty of freedom to do them however I think best. Plus, next Tuesday I'm taking a short sabbatical to go work on a new writing project of my own. I'll be in the mountains outside Albuquerque, living in an artist's house while she travels . . .

Every day--every single day I still come to these forums first thing and look for news of the cure. Every day.

Almost forgot--here's a photo from last summer when we were all at camp together.

[cheesecake]

spent almost an hr on a post, my hand went into spasm, hit touch pad and it vanished.

maybe tomorrow.

[krajaxa]

Hey, you all!

Seems like I haven't posted here in ages. Which is probably true. Seems like one of the last few times I was here the boys were just babies - they are 3 1/2 years old now and enjoying pre-school! Unbelievably, after reading some of these posts, seems like everyone had been having their hands full!

The boys were the best thing that had happened to us! Bob became completely independent, actually, he volunteered to be the stay-at-home daddy. He had mastered the task being the organizer and planner he was before his injury. Someone once told us while he was in rehab, that what you are going to be same what you were prior the injury. It was all true!

God bless you all, you have helped us to get where we are at now!

[Obieone]

Hey has anyone else noticed we've had over 54,000 hits on our Journal thread ....... amazing!!!

Tells me there's a lot of reading going on out there ...... maybe its time to juice it up a little .... how about joining the conversation ......

And since we're talking .... has anyone noticed is just around the corner?? Oh you haven't lived until you've spent at least one winter on the Canadian prairie .... and this year ..... NO GARAGE ....
Oh well .. if the next few months go as fast as the last few went .... Spring is not too far off

Stay strong ya'll ......

Obieone

[vacowboy60]

OK, here goes it,

Hi all, my name is David, I'm a single father of 4 and Caregiver of my oldest (DC). My story begins July 9, 2002, three days before DC's 22nd birthday. The day started as any other, work, socializing, home (TV); I don't remember what was on when the knock at the door came. It was my oldest step-son from a previous marriage, crying hysterically "D's on the ground, he can't move, we called 911, come quick"....seems they were at a party horse playing and he got pile drove onto a tree stump. *Blur* rush to friends house *Blur* "Dad, I can't feel anything" *Blur* Riverside Hospital *Blur* MRI *Blur* hours *Blur* crushed vertebrae C5 incomplete *Blur*....... Mind drifts 17 years prior, holding him as the ER Doctor does a spinal tap, Spinal Meningitis, 30% chance he'll live Thur the next 48 hours, 50% chance for the following 72 hours, ICU at his side (leaving only to shower and change, 3 weeks later he can go home.........(back to present)..."emergency surgery to rebuild vertebrae at AM, will probably take 6 hours", "chances are he won't walk again". Excuse me while I blow my nose..sometimes I'm too in touch with my feminine side (hehe).

Five years four months later, here we are in a one bedroom apt., living off his SS (as I can't keep a job, because home health care is unreliable at best; as many of you know), although that is changing as I was finally able to get him into a day program (new to the area) called Hope Unity Freedom (HUF). He leaves about AM (if logisticare schedules the correct van ride) and gets home around 3 or PM, Mon-Fri, where his aid will hopefully be waiting to care for him till PM (maybe). My youngest son (15) stays with us and helps me on the weekends and when there's no school; he sleeps in the other bed in DC's room, I sleep on the sofa (as always) in the living room. Why is it that in this day and time, there is no housing for the totally disabled AND their caregivers, unless it's in the part of town you wouldn't board your pit bull, let alone a loved one? Why will the government spend millions on sub-standard care from agencies and nursing homes to provide so-called care (and give them monthly *bonuses*), but won't pay a family caregiver for providing "better" care for their loved one? My son was in a nursing home (2 actually) for about 2 years, and was constantly sent to the hospital with UTI'S and STAFF among other things. He was lucky to get a shower once a week because they were always short staffed. After two years in this apartment, we finally stopped all the UTI'S (about 6 months ago) because I refused to allow him to change to a leg bag during the day, thereby keeping the supra pubic cath sterile. He was going to the hospital 2-3 times a month and staying 4-6 days each time with UTI and the last time he was sent home with MRSA and on IV antibiotics (which I changed every 6 hours for 10 days).

I am sorry I've chewed on your ears this long, but I think I have found a "port in the storm" if you'll allow me. I have to go for now, I have a meeting with some people trying to put together a fundraiser to get a van so we can have a little freedom. I look forward to posting more and reading more of all of your stories in our struggles for normalcy. Take care and God bless.

[BeeBee]

Welcome to the "port", David. My son's a T12, so much more independent. He was injured in Aug 2002 when he was 17, close to your DC's date. Sorry, no words of assistance, just a shoulder for your feminine side to cry on, if needed. I hope things continue to improve.