what can i do

what can i do
by mary

i know that i have problems talking
and being understood
still i have some language
even if others dont think its too good

but i have this friend i see each day
who can not speak a word
he uses not a bit of sign
i worry he's not heard

i ponder long and deep and hard
to know what i should do
he has the very same feelings
just as strong and just as true

day after day i see him there
just passing his time away
i know he's thinking something
i'm not sure what to do or say

i worry he'll fall through a crack
and no one will ever see
he has to feel so alone
hes the same as you or me

'he thinks! he feels!' i want to yell
but how do i get through
i want the world to notice him
i never want him blue

hes kind and sweet and a gentle man
he helps. he shares. he smiles.
its not fair that he cant talk
its not fair his lonely trials

i dont think i could be so strong
as i see him every day
i just wish i could do something
to brighten up his way.

Posted by group mascot on February 27, 2005 at 09:24 AM in mary's writings | Permalink | Comments (5) | TrackBack

mary on her perfect day

my perfect day starts with sleeping in.  then my pca cooks one of my favorite breakfasts for me of eggs, toast, sausage, oj, and coffee! 

shortly after finishing theres a ring at my door and its my friend jack whose come to take me to the cemetary so i can see my mom.  i love to go visit her and never get to do so as much as i like.  we stop on the way for a huge spray of red roses!  they were her favorite flower, so i get the biggest spread they can make for her. 

the air is fresh and warm, must be in the 80's and feels so good on my skin.  we spend a lil less than two hours there and head home.  my mom and i had a good visit as always.  its been a calm and smooth day so far, those are always welcomed.  jacks been nice to be with.  hes a good man.

when i get home its time to freshen up a lil before going to get scott in our rented limo.  its white and has a beverage bar and tv we can watch while we ride.  we're going to the new mall.  on the way we pick up the mascot because i want her in my perfect day.  we have some soda from the bar while we travel. 

omg!  when we get to the mall scott and i are the 88th, and 89th visitors and each win 1 milllion dollars!  who would have ever dreamed?  we are so excited we dont know what to do!  the malls not very crowded at all so we decide to go get our hair done.  each of us come out styling and looking so good!  scott says my hair looks nice and that makes me feel great.  sometimes my hairstyle makes me crazy, it never does what i want it to.  but today i look like a star!!   i cant tell you how good that feels~

after we come out looking like magazine models, we go clothes shopping!  since we are now rich, we buy an new outfit for each day of the month.  there are so many packages and bundles we have to get someone to help us to carry them!  when we get back to the limo the driver flirts with me.  i blush and tell him its not true, but he keeps flirting anyway.  i just shake my head and smile. he takes us to my favorite resturant, bickfords!!   

at the resturant everyone is unusally friendly to us making us feel very comfortable.  scott picks his fav item from the menu.  i pick mine which is a cheeseburger with french fries~   we both have ice cream chocolate of course!  we are having so much fun and the silly mascot is always finding a way to make us laugh.  at least she didnt draw a mustache on her face this time, thank god!  we leave a huge tip before we head out and thank them for such kind service.

as we drive home, dropping everyone off along the way we think about all the fun we had.  we won a ton of money!!   sure was a blast shopping without worries or rushing.  our food was good, the company great...  we look like movie stars...   and it was so nice to share all this with scott!

when i get home my house has grown.  i dont know why or how, but its twice as big as when i left.  i get excited, eager to go inside.  when i open the door with my electronic key i see its filled with new furnature... comfortable and pretty new furnature.   there are switches everywhere that i can use myself to turn things on or use them by myself!  i'm sooo excited...  i peek around a  new corner and omg!!  look!!  theres a computer of my very own!!  its got all sorts of adaptive and custom voice activated gismos !  i turn it on and second life has even been installed on it.  who did this i wonder??  but i'm too caught up in the excitement to think much about that.

i go inworld and spend 3 hours!  only three times have i played more than an hour... but now there are noooo time constraints... no rules but my own!   so i stay and play and explore and just have a blast!!   

oh my i'm getting sleepy tho.. my pca fixes me a hot mineral bath were i soak till i almost fall asleep.  finishing my bath i get into my new deluxe super soft beautiful white bed!  its covered in stuffed animals-- and even my favorite is there!  its a big black furry teddy bear that my mom gave me when i was a baby.  (my mom didnt really give me one like this, but i imagine her to have.)  the bed is sooo comfortable, and my furry bear snuggles so well that in no time i'm off to dreamland... sweetly dreaming of the good things of this day, and all the good the future holds.

and thats my perfect day!

Posted by group mascot on February 12, 2005 at 09:49 AM in mary's writings | Permalink | Comments (4) | TrackBack

ty mom by mary

hi, my name is mary and i have cerebral palsy. i want to write about my mom.  she was the most powerful influence in my life. 

my mom tired to always help me, even though she too was sick and it was not easy for her.  she was always kind and took time to teach me the important things i would need to know in my life.  my dad died when i was 8 years old.  i had two brothers my mother had to raise as well.  she brought us up on her own.  it was hard for her since she was sick  too.  (i cant share the name of the sickness she had, it doesnt come out clear enough.)

the doctor wanted to put me in an institution because my mother's health problems were so bad.  back in those days the institutions  were horrible places to be.  they were overcrowded and dirty.  people werent treated with dignity, nor human rights like we know them today. 

my mother had no way to take care of me.  i was 39.  she was so sick she had to go stay in the hospital.  she was worried for me and didnt want me to go to an institution.  i'm so grateful for her care for me even though it was a sacrafice for her.  my life would have been so different otherwise.  i ended up going to live with a woman who used to work for my mother. 

shortly after that my mom had to move to a nursing home.  i used to go see her on saturdays.  it made us both so happy!  she got worse and worse and finally died.  a big piece of me died when she died.  she was the best friend of my entire life. 

i was very lonely for my mom.  i missed her very much.   it wasnt long after that i decided to get married to a man named joe who also had cp.  he was in my cerebral palsy group.  at first joe helped me not feel so lonely.  i had to fight really hard for the right to marry joe.  it was a hard struggle. 

i was married 14 years.  the first few were the better ones, but like many marriages after awhile it fell completely apart.  we both agreed it was a good idea to end it.  so i was back on my own again and joe went to a group home.  we stayed friends.

i got married for the wrong reasons, not for love.  at the time i thought i loved him, but it didnt take long for me to realize i didnt even like him.  in the beginning i hoped everything would be alright if i just got married.  it seemed the best thing to do.  all of my friends thought it was the right thing.  after awhile it was obvious it was very bad for me. 

its hard to look back on those times.  i'm very ashamed of what i became.  i used to fight with my husband  and try to run him down in my wheelchair.  i used to kick and hurt him.  sometimes a marriage can bring out the worst in people. sometimes its better to end it.   now i think about these things and feel really badly.  i dont like who i was and how i behaved.  i'm often plagued with shame and guilt from this.  but we are only human and learn from our mistakes. we have to listen to our hearts and not the pressures from friends or what society tells us is the best thing to do.

then i moved to the place i live now.  things have gotten much better for me.  i have very good pca's (personal care assistants) and i'm very happy.

i met this man named ej who had cp.  he was funny and smart and very wise.  he was a dear friend to me and i cared a lot for him.  he fell in love with me.  at first i wasnt sure what i wanted.  then i decided i only wanted to be good friends.  i was afraid to love anyone like that because i didnt want to hurt anyone or be that terrible person again.  it made me a little sad for him that i couldnt return his love.  but i just could not.  he still calls me and asks to be a couple, but i always say no.  i want to just stay friends.  im gonna listen to my heart this time.  i dont need to have a man to be happy.  i'm happy just as i am.

what i've learned from life is to be happy with who i am and not look to another to find that happiness.  we wont always do things the right way, but we can try.   it was my mothers wise instructions and guidance that got me through the hard times.  she gave everything she had for me and was the best example of my life.  even after she was gone her words would come back to me and speak.  they were there in my most difficult times and gave me comfort and guidance.

you cant always know or see the powerful effects of loving someone.  to this day i'm grateful for the love of my mother.  she made all the difference of my life~  THAT she did!  ty mom


Posted by group mascot on January 25, 2005 at 06:12 PM in mary's writings | Permalink | Comments (4) | TrackBack

trapped, by mary

i'm trapped inside my body
trapped inside this shell
while the outside doesnt look so good
the insides doing well

its hard to speak the words dont come
as easy as for you
how can i show you what i feel
or all that i've been through

i yearn to give and share and laugh
i ache to know a friend
i crave to tell you how i feel
that the lonliness would end

i'm trapped i'm trapped but so are you
tho perhaps you see it not
your trapped inside frailities too
your worries make you rot

take my hand oh feeble friend
for i am feeble too
together we can make the world
better for me, better for you

Posted by group mascot on January 13, 2005 at 07:00 AM in mary's writings | Permalink | Comments (2) | TrackBack