Today
I am going to the library to get more books, I am almost done the Jesus
Life Coach. It's a really good book, I never thought that I would be
reading Christian books. I've always loved to read and it keeps me busy
at nights since my mom doesn't want to do anything with me at nights. I
hope that Ann calls me back today so that I can talk to her about shared
living and the volunteer job. I miss working with lower functional
disabled people it made me feel better about myself. I really need to
move out my mom doesn't need me, she has her life. I'm not sure why Lacy
doesn't sleep with me at nights anymore, we'll be in bed for 5 minutes
then she leaves. She goes and sleeps on the stairs, last week Jorma
almost tripped over her. I wish that she would sleep me with me more
than 5 minutes.
Steph
came this morning and gave my shower and after that was done Ann my dds
worker called me and I got a volunteer job! No more boring days for me,
Monday May 7th I am going to meet with them. I'm so happy that I will
be able to volunteer and get out of the house. I am not sure what will
happen with Steph if she leaves then I'll find another pca who could
come get me ready and get me on the mart bus and then they can come back
and make me dinner. One thing that annoys Steph is that my mom doesn't
do my laundry and it does get annoying. My mom is my pca also but she
only wants the easy parts such as putting me in bed and getting me out
of bed, and filling my medications. But she doesn't hang out with me, I
know that she won't like if a pca is here at nights because then she
can't be in her night time clothes and Jorma can't walk around in his
boxers.
Tomorrow
I am having oral surgery, I have a hard time staying still due to my 3
disabilities. I was telling my mom about a personal problem about my
catheter and she has no idea who I am. She doesn't give me an hour of
her time out of her day but she gives it to everyone else. I need to
move out of here, very quickly. When Steph was leaving today the tears
came to my eyes because my mom never spends time with me, it hurts me
allot. She gets mad if a drink falls on the floor or if Steph doesn't
give me a shower. When I meet with my dds worker on Monday because I am
going to talk with the day program about my volunteer job she's going to
tell her that she doesn't feel comfortable with transferring me into
the shower either. My sister's have no idea who I am either and it is
sad that they have no idea who I really am. Last year when someone from
dds came and she asked my mom "does she get seizures?" and my mom said
"no". I wish my mom needed me more, I was telling Steph that I get the
feeling that she only uses me for the money to get paid but even that
she won't do things with me. She use to take me shopping but she doesn't
do it, only sometimes but not all the time and it makes me sad and it
hurts me too. I'm sick of the rejection, and being ignored by her and
always being in my room night after night.
My
neighbor Bill gave me the relay for life envelop. I need to email my
aunts and uncles and ask them to donate money for relay for life. It's
never easy for me because my dad held the family together and I will
always miss him. The Lutheran pastor still calls me the chocolate queen
and I laugh every time. My dad would come visit me every Wednesday and
he would bring me a chocolate bar. The first Wednesday that he wasn't
there I was looking for him, when he didn't show up it hurt. That same
summer I went to Iowa I went there for track and field. I took the
sports out on his death, I won 6 gold medals when I came back I went to
his grave and I left him one. I'll never forget the lessons that he
taught me, through his cancer I learned how to live. I don't let my 3
disabilities stop me even though I have spasms, pain and seizures I
still go out. Every day I wonder what would life be if he was still
here, would I be in this power chair? he probably would have kept me at
MHS. The hardest part of relay for life is the silent lap and watching
the sun go down. July 1999 we were at the Cape and him & I were on
the beach when the sun went down that's when he told me that when the
sun goes down I go too. I didn't know what that meant until December
23rd 1999. On December 22nd I told him "you can go home now you taught
me how to live" he told me to go in his drawer and there was a chocolate
bar for me. When I see dad's with their daughters that's not easy for
me, when I was at barns and noble I herd a little girl say to her dad
"daddy I want the chocolate cookie because I love chocolate" her dad
said "yes I know you love chocolate" The tears came down and I called
Dawn and helped me so I am glad that she was there for me I will send
him a nice letter to him again at the silent lap I will send it to him
again and I sign it "love always and forever your chocolate queen"
I'm not who I was
Brandon Health
I wish you could see me now
I wish I could show you how
I'm not who I was
I used to be mad at you
A little on the hurt side too
But I'm not who I was
I found my way around
To forgiving you
Some time ago
But I never got to tell you so
I found us in a photograph
I saw me and I had to laugh
You know, I'm not who I was
You were there, you were right above me
And I wonder if you ever loved me
Just for who I was
When the pain came back again
Like a bitter friend
It was all that I could do
To keep myself from blaming you
I reckon it's a funny thing
I figured out I can sing
Now I'm not who I was
I write about love and such
Maybe 'cause I want it so much
I'm not who I was
I was thinking maybe I
I should let you know
I am not the same
But I never did forget your name
Hello
Well the thing I find most amazing
In amazing grace
Is the chance to give it out
Maybe that's what love is all about
I wish you could see me now
I wish I could show you how
I'm not who I was
No comments:
Post a Comment