Archive for June, 2009

Sending Grandpa Home

June 26, 2009 · Filed under Poetry, Rett Syndrome Intelligence, Writing, Writing Memoirs

Grandpa, Leah and I when I was one month old

Grandpa, Leah and I when I was one month old

 I wanted to let everyone know that my Grandpa died last Friday night on June 19 at 11:30.  His children were all around him.  I am so glad that I got to spend his last day on earth with him.  I look forward to being free like he is now, of the things make this life difficult for me.  I know we will have a long hug, because in this life I was not able to hug him.  I love the Grandpa I spent the last two months with.  God’s peace Grandpa!  I know you know what that means now.

Love, Karly

 

 I am taking a writing class.  We are focusing on poetry right now, so I thought I would write a poem about my grandpa.  Here is my rough copy. After class today I will try and post my edited version. 

 

                              Sending Grandpa Home

I came to earth with challenges you had never seen

I’ve lived a life apart from yours

I understood what you said to me but did not answer with language you received

You felt pity, I felt the same

I wanted a Grandpa who could play

 

In your final months I saw a change

I felt your love

I saw your pain

You tried to understand

You heard my typing and questioned me about who I am

I know you saw my chair, but it no longer scared

You saw me

We could be real

We saw each others eyes

I will see you soon Grandpa

I will see you soon

 Karly W

 

 

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Saying Good-bye to Grandpa

June 19, 2009 · Filed under Disability Awareness, My Faith, Rett Syndrome Intelligence, Understanding Rett Syndrome

Grandpa and me in May 2009 Grandpa and me in May 2009

I had an unusual and wonderful time today. I knew this morning that Grandpa was not doing well and would not be alive much longer. It was so important to me to get to the nursing home to see him again.  We got there around 9:30A and stayed there until 1:30P. 

 He and I have been seeing each other more in the past two months, than we did for many years.  I looked forward to seeing him every single time because he started really seeing me.  In the past, he didn’t know how to interact with me, so he would either ignore me or talk loud to me.  But since he has gotten very ill, his view of me has opened, so he can see me. Those of us who struggle in our bodies from a very young age, often find those who are elderly to better relate to us.  If they don’t pity us, but can see us for who we are, we heal.  For me and Grandpa there became an understanding. When I sent him cards the hospice nurse said he valued them so much.  He couldn’t believe that I would notice him. He always thought he needed to care for me.

I look forward to going to heaven when it’s my time.  I don’t fear death.  I know some people think they need to shelter me, because I might not handle it too well when someone is dying, but I think I am as real as anyone in the room.  I live with death nearby.  It’s not frightening to me. I understand that in heaven I am free.  I’m not stuck in this body that has given me so many struggles.  I was glad to be there today.  Grandpa was able to put his arm against my leg while I rested it on his bed.  He seemed to find comfort in it.  I told him good-bye and that I would see him in heaven.  I hope he goes without struggling so much.  There is little to stay here for.  I love what has become of a long and difficult relationship.  I feel peace and I wish Grandpa the same.  He will see me soon through new eyes. 

 Go in peace Grandpa. I love you.

Karly

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I am Stressed Out

June 16, 2009 · Filed under Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged

I wrote about how I have been feeling for the past week.  My Mom learned recently at a Rett event that girls with Rett have high anxiety, so maybe that’s what I’m having, but it stinks.  I wrote about how I’ve been feeling inside on MY RETT BODY.

love, Karly

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My Documentary

June 5, 2009 · Filed under Rett Syndrome, Writing

I have an announcement to make about my documentary.  It has been a long time getting to this day, but it is close to having the first 13 minutes ready!  Our film guy, Dan, is working on putting some more scenes into the film and my song For Strength.  When that is done it will be ready to show.  I hope to have it done for camp in July.  It will help introduce me to groups, so I don’t just show up and have someone start talking about me.  That is always awkward. I have worked hard with my Mom and Gregg and Dan to get it just right, because it is about me.  I want to make sure that it is accurate.  I wrote the script over a year ago. 

 The woman who I chose to be my voice, has a brother who has autism, and went to school with my friend Elizabeth.  We may make a longer DVD at some point, but for now, I’m just going to have the first 13 minutes.  I hope it helps people see those of us who are non-verbal in a different way..that our lives are not all that different on the inside than others.  It will be fun to share it with everyone. 

Love, Karly

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