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Not much to say, Jaylee`s Birthday coming up. She`ll be 3! I wonder why she came so late in my life....I wonder if I can keep up and live long enough to see her strong and happy in her life. I suppose that I was ready to give up and sit with this disease but Jaylee came and Hospitals and Dr`s and diapers had to be taken care of. Just thinking about it tires me. I don`t know how I accomplished what I did. I didn't God did! I prayed and prayed and cried and cried! I have memories of hanging on to the sink and hoisting a baby into it for a bath.....a broken leg.....a wheelchair....many falls.......a food tube pulling out, stomach contents spewing at 4 am...........falls, lots of falls, I wish I could laugh but all I feel is sad that I can`t give her better. I want to give her a life full of different things, the outside different places to see...water....plants....mountains...clouds. I wish I had my family near, my sisters-mom-brothers-nieces-nephews they could pickup where I left off. I don`t see friends very often my ataxia bothers them and maybe I`m boring. I know when I was moving more I hated to be indoors sitting. Where will it end..........if this is the best now what will it be in another 5 years......I guess I`ll pray again, bye blog ;]

american idol

I am reading my blog wow I need to get up and shut up. Made eggplant parmesan, asparagus and Garlic bread. And a cake too!!! didn`t think I could do it, I was the only one that ate..........oh well I`ll have left-overs.

it`s me.......

wow, I`ve been gone too long. Not much going on just trying to keep moving. It gets harder and harder these days. Could be old age...gotta be this disease. Oh well, Mom has moved to Wash. and everyone is so spread out. It`s difficult to keep in touch with family but, there all I have left who understand this walk we are on. Jaron is getting older[12] and doesn`t want to see or hear his parents and Jaylee....my little baby will be 3 at the end of this month! Jason my oldest son[26 yikes!] will be getting orders for Texas and may be getting shipped off to Iraq.......maybe I will be able to meet my first grandchild he`ll be 1 year old. I had a fall 3-weeks ago and broke my nose, boy was that painful! I am now using a walker in the house and curtailed going out to once or twice a month. Falls in the backyard too...Lord will it ever end........I don`t want to sit but it`s getting harder and harder to keep my resolve. The pain and worse what if I`m all alone with Jaylee, she could be traumatized or worse left without supervision if I knock myself out. I have an appt with the Muscular Dystrophy Dr. tomorrow, why do I go???? no cure, I guess maybe to commiserate. I want to run...I want coordination......I want to be graceful.........Dad says I have a curse-not enough faith-don`t take the right vitamins....I wish it was so simple. I pray and beg and walk in faith but thats not working. I feel like I just need to be quiet and be thankful but Dad says no.....I`m tired of being ashamed and weak and useless. I still cook and clean and take of my family. Eddie I think, after 23 years is good friends........it`s hard to keep romance in a marriage when your disabled. I know I`m not what I use to be...I watch the world and do not participate.......Jaylee she keeps me alive

bowl headed baby!
Go for a ride!

low day

Hi Bloggy long time no see!!!!!! Slow low day, swimming in quick sand I feel........mentally,
physically praying it ends soon. Wishing and wondering why it has to be this way......watching and waiting is all I`m fit to do......why......why????? I miss my sister, my family . Why this walk.........on a happy note, grandchild is here, born 5/28/05 9lbs 11ozs Aiden hehookokkok.....at 4:30a.m. I`m too tired.....byebye

nacotaco

precious lovie!

get me out please!!

Spammed!

BLOG ME! I'VE BEEN SPAMMED!!!!! So that`s what happens when you make a comment! I guess I`ll keep my opinions to my self......how come they are all in German! I can``t even read the spam, Oh mama I've been spammed SAVE ME!!!!!!!

Freedom

Here I am again! Independent Living helping to redo prison!!! Yeah!!!!! wheelchair accessible including bathroom! Jaylee still living life disabled. No safe place for her outside. I ask too much, I want too much.....Freedom , I need it to survive. I love to go for a drive, to see something different besides 4 walls. I take deep breaths and dream of freedom, to walk run dance hop skip under MY own power!!!!! One day the miracle will be mine.........soon...........soon..........hurry up and come!!!!!

wisdom please

Well here I am again, a little wiser and no money again! I am so aware of people ripping you off and I trust no one! but I still got sucked in.........I believe in Jesus body mind and soul and I believed in the people who preach it........joyce m, pat r........but there bios read of millions and millions that they have for 10,000sqft homes, boats, horses. I ration diapers milk , medication to help people around the world and guess what, they are not getting much of it.........mom lives on 650.00 a month , my brother who is disabled can`t afford insurance and I`m giving to people who definitely don`t need it. Oh Lord, I need some wisdom now!!!! Happy Birthday Toni, I thought alot about you.....I pray for Chito, no jail time and finding God. Gloomy Gus out.....

sleeep!~

Up at 4 am, sure wish I could sleep. Joint is killing me and Jaylee has to sleep touching me. Sometimes all this closeness gets me feeling claustrophobic. Took 6 motrin and cipro, please work! oopies like Jaylee says try and hang on till medication sarts working. How much pain is Terry Schiavo in? Pope? I pray they have peace and The Lord to carry them thru to heaven.

tv

It occurs to me watching tv is like window shopping. There is so much to see and do and experience. New ideas places to go things to do. I so much want to be apart of but here I sit. I look thru my window and see a wheelchair.Is this all I get......what have I done......where is my mark.....I want to live, so I pray and pray, hope, hope, hope, I wish and want..........but i`m still here. When a tree falls in the forest who hears, no one. It`s not important. Will I be important enough to hear?????? I pray and pray and pray.......

Quiet ssshhhhhh

I so much enjoy the quiet, listening to TV looking outside as the wind blows.......a storm is coming!! Jaron will be home from school in 30 mins and Jaylee will be up and the fighting will be on!!! Time to pray, time to think, time to..........times up!!! Oh well it was heavenly while it lasted.....

Mama`s Path

Mama's Path has been slow and weary but one her kids were destined to travel later. Mom married our Father years and years ago...... There marriage produced 6 kids, but the marriage only lasted 13 years. Mom was left to raise clothe and feed us on 300.00 a month. She took a job as a clerk in a dry cleaning establishment and then got her last job working as owner-agent for Greyhound Bus Depot. There she worked 6 days a week 10 hours a day for 31 years , no sick leave , no benefits, no vacation, no retirement. The Bus Depot closed its doors in 2002 with 4 hours notice, and mom survived on unemployment and then social security. Life was hard but its all my mother has known. My mother was married to my step-father in 1973. that union was difficult because of alcoholism and physical abuse by my step-father. During this time my mother was diagnosed with a form of Muscular Dystrophy called Freidrich`s Ataxia. This disease takes away balance, speech and muscle coordination eventually a wheelchair is needed within a 10-15 year period. The diagnosis was in 1980. My step-father didn't want to deal with it and left in 1980. All these years my mother has coped with her life changes by herself working and paying the bills living near poverty levels and still she keeps on going. I marvel at the courage and conviction my mom has and stamina!!!! I always thought I would do things differently or better in my life, little did I know I cannot keep up with my Mom nor fill her shoes. My path is the same as my mother's. I have been diagnosed with this disease and every day is a challenge for my family and myself. I scream and cry and rage with frustration but my mom always lights my way by example. She has done without for so many years and still no end in sight. And she continues ........so will I just like my mother has shown me, thank you Mom for being my mother, God has surely blessed me.

OOOOwwhhhiie my back

Today I`m moving slow and bent-over, but I`m still moving! Veterans Day and am very thankful for many who have fought and died so I can vote and live a life with some comforts. Giving my children a life that they can be anything!! No flashlight needed today but an extra cane would surely help. http://anyservicemember.navy.mil/About.html http://anyservicemember.navy.mil/About.html

All grown up How`d that happen.....

Go for a ride!
Go for a ride!

Flashlight is on

I`m walking slow tippy toe walks, but at least I`m moving. C needed 400.00 our half of contributions to T's funeral in November 14 2001. Need to save for Christmas so we don`t have to credit card it. Bills need to be paid off and home needs to be wheelchair accessible. Kids need there things first...... I give it to God because it is too overwhelming, God can work miracles and I will see one come to pass with us.