Labor Day Weekend

Looks like no one reads my posts which is FINE with me. I have no wisdom to impart and i'm certainly no one who's going to inspire. I don't even want that job. So i feel free to say what i want to say. Its a holiday weekend but one day is the same as the next for me and probably Amy, too. We're here living our lives with pretty much no interaction from the outside world except for our helpers and even that gets old. Amy is going to the mall with her previous bus driver today. I hope i can get someone to lift me onto my bed for that time.....................im done. im bummed.

Title to come later

Yesterday we, my daughter, her dad and I visited the training center/workshop where she will be spending most of her week days when she moves to the group home she has chosen to move to this fall. Words fail me at this point because if anyone reads this blog who has a cognitively disabled child, I might offend them. My child is physically and cognitively disabled also but her IQ is at the high end of the spectrum for those served by the Association for Independent Development, the agency providing her housing and day services. Its as if she is the smartest kid in her class, yet the most physically disabled, and for that reason she is the hardest person for whom to find a job.

I held back tears as we walked thru the job center. It does not seem like the right place for someone like amy to be. It is full of retarded adults who look as tho they have nothing in common with Amy. The work is not suited to amy's ability except for may one job where the guy counted out ten large nails and dropped them into a package. And he was out of work at the time because they had run out of nails. Its called downtime and it looked there was a lot of it at that place.

I laid in bed last nite crying and sick at heart at my daughter's plight. I can't go on right now.

Rain Rain Go Away

We've had four days in a row of rain, lots of rain. My mood has been down and I felt bad this morning when Amy hollered to me while she was getting her shower, "Mom, don't be depressed today." That knocked a little sense into me and I vowed a better day.

Not up to doing this right now. Maybe later today.

Bitch Bitch Bitch...............

i'm going crazy. There is no one to turn to. That's what being this age is about. No one wants to hear your worries or problems. They just want you to make no waves, no complications for them and their lives. And I get that. But this is lonely. Amy has been home from camp for a week now. Mostly during the day she listens to books on tape and for that I feel guily that I'm not interacting with her. Just doing mindless housework from my wheelchair. She's leaving home soon to live somewhere else. It hangs above us like a threat and at the same time it is exciting and a new part of life for her. Daily she tells me she's SO glad she's not going to school anymore. She will be working at a work center in the area she's moving to. I am full of worries that she will sit without work to do during slow times or without meaningful work at all due to her physical and visual involvement.

And i'm worn out. Tired of being in this chair, having to be lifted out at bedtime. Wanting to spend more and more time in bed. Now I've been told I'm anemic and that may explain the weakness and joint pain increase lately.

And while I'm here alone making the best, HE is not working, sitting all day at his kitchen counter playing with facebook, doing who knows what. Drinking. Putting his life and others including his girls' lives in jeapordy because of it. Living as he wants to selfdestructing all the while. While the money my mom left me dwindles away. I am powerless in this situation. I'm watching as my life unravels and he self destructs. Goddam it.

Jiggety Jig

The title to this post has to do with Amy being home from Shady Oaks Camp as of yesterday. It's part of a nursery rhyme that starts out "To market to market........... Its day two on a Sunday morning just before 11am. Amy is listening to a book on tape, a novel I read recently by Elizabeth Berg, Durable Goods. Shortly, I'll get on with my day and shower etc. because I'm going out in public today to grocery shop. The van is fixed again $1500 later.

Still no word regarding medical coverage. I've been in this chair coming up on five months. Don't know if I mentioned in previous entry that Amy has received "funding' from the state enabling her to move to a group home and begin living independent from me. She could me leaving home as soon as two weeks from now. She told me she hoped she wouldn't be moving out right after camp was over and I can understand that. I know she knows this is a break from one life and is a little apprehensive about it. I am too............
But she has always adapted well to changes. This is a big one.

Yesterday evening I had a moment. I was sitting in my wheelchair on my front driveway with Zoe on my lap. Cares were whizzing by on a Saturday evening and I was remembering when I was out and about going here and there particularly on the weekend. I started feeling sorry for myself sitting there--- all alone, no where to go, stuck in the wheelchair. Then I had the moment. Something gave me a good kick in the head bringing on a reality check. Here I was sitting in my own yard, my beautiful yard, on a warm summer evening, in good health, with my little Zoe snuggled on my lap. I spoke outloud to myself then and there saying something like wake up and smell the coffe and stop the pity party. So I did.

I've failed to blog this summer as I'd intended to. The past eight weeks may have been somewhat predictable due to circumstances, but I did read many books, I got closer to Sheila and Pam my sis in laws, I delighted more than ever in my talks with Allison and Annie, and I even lost some weight.
I got a haircut/trim and noticed I don't look bad for a woman nearing 60 except for the weight. I made some real promises to myself that when I am ambulatory again I will be there for those who need me with no excuses of bad knees or inability to get out because its difficult sometimes to do so with Amy. No more excuses I like to call it.

Ok this is getting old and my right hand is now numb another new glitch in the ongoing saga of a deteriorating body. But we're all in the same boat, just in different parts of the voyage. yay me!! yay life!!

A Different Summer

This has been a summer of waiting. Waiting for approval of medical coverage so that I can have double knee replacement surgery. The past several summers with Amy gone at camp I was able to get out and visit friends and family and run errands. This summer I'm not in pain because I'm in this wheelchair and not bearing weight so its easier to do house work and cooking etc but I can't get out on my own unless someone drives me. I've done a lot of reading. I go bed early because I need assistance getting onto the bed so I watch a lot of tv till late at night. I stay in bed in the moring sleeping and reading because I know that I get up too early I'll be in the chair all day till seven pm. or so. I really feel like a senior citizen and I'm only 58!!

My plan is to regain my life after surgery and rehab so I can get back to independence and an active life style. This weekend Allison is moving to a house from an apartment; I wish I could be there "helping" her and experiencing it with her. I can't right now tho. Before the surgery I have to be cleared to have it by going thru many types of exams and tests. I hope i'm healthy enough to have it!

Took a shower today. I drape my wheelchair seat and back with shower curtain liners. It works just fine. My SIL is coming to visit tomorrow. I'm going outside to read for awhile. that's all I got.

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