Books Books BOOKS!

I have my own personal librarian. Her name is Betty and I remember her extension by the highway of the same name--355. Betty brings books to me at home as a part of the "homebound program" whose title is self explanatory. A service for shut-ins. There's a term I haven't heard in forever.

Before I was a teen, a piece of mail was delivered to my house asking for employment or help for "shut-ins". There was a picture of a pitiful looking man perhaps laying in bed and because of my youth, lack of knowing about life and what can happen to one during it, I laughed at the picture and the ad. I may have done more than laugh at it, perhaps respond to it and not in a kind way. It comes back to me in bits and pieces. It was a letter from this man asking for something. And all I could do was laugh. Talk about Karma. I remember something else that I think I laughed at which has also come and bit me in the butt. It was a book of matches that said "Made by the Handicapped" and when opened, the matches were mangled and broken. Yes, that was funny to me.

So was the Christmas Card I bought in Old Town over my first Christmas Break home from college. It was a picture of Santa hanging on the cross. Inside it said "Let's put Christ back in Christmas". I actually mailed that card to some friends. At the time I thought the card extremely irreverent and edgy. My mom looked at it and said something like "Oh, Kimmy........." but now i realize it wasn't irreverent. It was to the point and true. It wasn't something disrespectful to Jesus, but against over buying and forgetting the real meaning of Christmas. Why didn't I see that then? Maybe I did and have forgotten. There is a big chance of that actually.

So I have my own library lady and its great. I've just finished several short novels by Elizabeth Berg who grew up in the sixties as I did. I believe Amy will enjoy some of these books also and so I ordered some on tape for her today. God bless Amy. That's all I will say now because saying it brings tears to my eyes. I am proud of how she is maturing and dealing with what life has dealt her. She is at camp for eight weeks now, coming home every other weekend. She told me she hoped I didn't feel bad when she told me she does not miss me. I told her that's exactly how a well adapted person feels and that she is exactly that. If all goes as planned she will be leaving home within a couple of months to live in a group home with other adult women. She is ok with it and knows she must strike out on her own away from home to make her own new home. But I worry about evenings and tv and who will tell her what's on and when and who will watch with her? And i worry about everyting else about her care: what she will wear and how will she look, and who will make sure she looks ok, and who will make the bed comfy and clean, and keep her parts clean? and it goes on and on and I realize that I'm the one who's really in for the change..............yep its hard at this end.

My July 4th Weekend

It's July 5. I'm writing before Erica comes to lift me onto my bed with the hoyer. Had more than one lean cuisine for dinner. i'm stuffed. i even took the liberty of using some rooster sauce which is a gamble for my "system" because that there stuff is hot! its an asian spicy type of salsa in a way. My dear sis in law Pam spent the afternoon with me. We sat on the front driveway and simply chatted. i'm always comfortable with Pam. We've known each other for as long as Al's been alive and some before then. Its the same with my other sis in law, sheila. Our husbands are brothers, still hanging out together, smokin and drinking and bs-ing same as always. And we are all divorced from them, them from us. Whatever.

Pleasant afternoon, subway lunch, good conversation. I had some impatiens I hadn't planted yet because i can't get the wheelchair to the spot where i want them. Pam put them in for me--five of them. Now i'm listening to Jack Johnson.

Yesterday, the 4th was rainy till about four. I was invited to Deb's and thought i'd go but it rained all day and i took my time taking a shower and then sat at the kitchen table reading a book my Elizabeth Berg putting off calling over for a ride to Deb's. I kinda thought rog might call and say when should i pick you up, but he didn't. and it wasn't his job to do that either. It was my job to set up my plans and i didn't. And it was fine. Went back and forth between feeling like i should be somewhere with people but my people are grown up and away. Allison called more than once. She is in Washington with walker and his fam. She and W were walking along the edge of the lake his folks live on - on their way to his grandparent's house across the lake for a 4th celebration. Annie sent me a pic of the canoe she was in on a sandbar in some river in N Dakota. She and her bf were camping with friends. Amy called from camp in the morning while her wheelchair was getting decorated for the holiday. The campers go to a park where there's music, food and fireworks. I envy some of the things the girls get to do but am always happy for them. I wonder if my mom ever felt envious of my youthful activities years ago.

I think she may have envied my youth but she had my dad and her life with him and I believe they were happy for the most part. After Ken and I left, they had each other, their boat, the yacht club and friends..........good for them. While i was living my young married life, I never worried about my mom or dad. They had each other. Now I have grown up daughters concerned about me, me being alone, my health, what i'm doing, and while I love talking to them and hearing from them. i don't want to be something in the back of their mind that makes them feel guilty for the full life they're living. and i'm afraid i am.

i'm particularly vulnerable right now with both knees shot, unable to pick myself up out of my wheelchair, needing assistance every night. I'm not even 60. This knee surgery WILL happen and soon. I WILL receive necessary funding for it. I have to. I'm in this chair needing someone every night until i do. its not like i can will myself up and out of the chair. how did i get here? no time for blame tonight. it doesn't help anyway, does it?
no.

I now have my own wheelchair. My knees have finally gotten the best of me and in order live life I bought a wheelchair. Previously I'd used a walker in the house and a cane outside. Then last fall I realized that if I was going to attend school functions for my daughter or take in a movie with her, I'd have to hoist my extra large seat sized walker into the back of the van. Sometime after the start of the new year I found myself giving up and staying in and down--as in not moving around the house much and feeling down. By the time March rolled around my pain level had increased, my legs were weak, and I was spending much of the day on my bed because of its height from the floor. It was easier to stand from a sitting position. I don't quite know what happened after that but I do know that the last time I was able to pull myself up into the van was early in March.

Caring for Amy, my 21 year old daughter with cerebral pasly, became excruciatingly painful and a near impossibility. While transfering her from her wheelchair to bed or her recliner I had to sit and rest every few minutes. I moaned and groaned and cried and cursed making life for poor Amy what it should not be. I stopped cooking meals because I could no bear to stand long enough to cook and prepare and clean up. Life stopped even tho it went on.

Then I did what I should have done months, maybe years earlier. I got some help. I got a list of people from a local advocacy center for the disabled, ironically the place that amy volunteers/works twice a week. The list had names of people looking for work as a personal assistant for people who need assistance in daily living due to illness or disability. I knew that the service was out there for us to use but did not want to take the time to make the call, interview the people, figure out exactly how and when to use these services, etc.

My excuse for not looking for help from this list was from a couple of years ago when I attempted to find some help. Someone answered my call and told me that the person I was calling was "back on the street again" and did not know how to reach her. Somehow that discouraged me from looking further worried that I was taking a chance I wasn't up for in letting a stranger come into my home to care for Amy.

My Bed

When my ex and I picked out this king sized bed 23 years ago after losing all in our bedroom to a fire, little did i know of the many days i'd lay on it overwhelmed by life's circumstances, physically drained from caring for my daughter disabled with with cp and alone, as a single woman, single parent disabled by rheumatoid arthritis and obesity. This is a mahogany four poster bed with pineapple finials topping each post. It is a huge bed sometimes shared by my oldest daughter where she empties her heart to me, tells me how much i mean to her, and where we giggle and laugh together about silly inane things. It is a bed that my parents cuddled with their grandchildren once upon a time in galena. It is a bed holding memories of three little girls and a mom and dad cuddling and laughing.

Boycotting House

The story last night on "House" was about a teacher for children with special needs. Right before the teacher fell over in the classrrom vomiting blood a female student in a wheelchair was shown to pee in her pants. Nice characterization of special needs kids......on top of that, the wheelchair they had her in was the generic type you find parked in kmarts and walmarts for patrons with ambulatory problems. Having a special needs daughter with cp who has been in a wc for 16+ years, kids in wheelchairs that are clearly not their own and ones the must soil their underwear while in them are a pet peeve of mine. Later on House refers to brain damage the teacher may incur if not soon diagnosed and says she will need her own special ed class.

Saturday at the fe fe meeting

Amy is the fe fe and she is at her support group meeting on this saturday morning as I sit in the lobby of Access Living of Chicago and wait for her. This is the first time I've brought my laptop out of the house. I figured out how to find an available network and connect to it and i'm pretty proud of myself. i just ordered lunch from the restaurant across the street, el norte, so i'm looking forward to some mexican food here in a bit. In the background i hear the sounds of the girls' voices in the meeting every now and then picking out amy's voice. i don't know what goes on in the meeting. i spose i could sit in there and amy'd never even know i'm there given her lack of visual acuity. lunch is served during the meeing and today it was chicken wings, fried and something else. hope amy fares well.

i'm sitting in the lobby and i don't think the heat is very high. my feet are numb and i'm about to put on my coat......maybe the spicey food will warm me up. waiting..................

Still Friday Morning

once again changed my blog name and description. just in case i drop dead i want to be clear that there is a bright spot in my life and that is my daughters. all three of them. Just as i know they want me to be around in years to come, let there be no mistake about this. i want to be here too. and it is because of this i feel like a deer in headlights as i try to sort out all the right steps i need to take to insure that i will be here. i feel like i am at a crossroads. its now or never that i have to get things right. find a place for amy to grow and blossom, regain my health before its too late which i pray it is not, and be around to be the mom my girls need in their futures. but where do i start? think i'll do the dishes that have been in the sink for 5 days for starters.