I have had trouble with Rett Syndrome lately. I have felt so hyper and so much anxiety for about 10 days then I had some seizures this weekend. I think it was becasue I have not been able to swallow easily for over 2 weeks. We have found if I drink 120 ounces everyday that i usually don’t have seizures. I still can’t swallow easy so it’s been hard.
My step-grandpa is in the hospital very ill and my grandma ended up going into a nursing home near us to get stronger. She wants to go back home. So there have been many struggles in our lives. I haven’t felt like writing much.
But something wonderful happened last night! I went to bed but my Mom went to the Dog Days Poetry Reading. It included my Mulberry Poet friends and there were about 35 people who came. I submitted 3 poems. My Mom read my introduction of myself and 2 of my poems and John read the third one. I love how his voice sounds when he reads. It was a hot summer night and some of our friends came too. I am honored by that and I hope that a few more people learned about Rett Syndrome and most of all that a few more people had their hearts opened to those of us who live without a voice that they can hear.
Here’s is what was shared with them last night.
1. My introduction
Dog Days Poetry Reading
August 23rd, 2011
I am not here tonight because I am home in bed. 🙂
I have asked my mom to share this message with you, and she and John will read the three poems I have submitted for tonights reading. I live with Rett Syndrome a rare disorder that primarily affects females and causes us many challenges in our bodies. I am not able to walk independently or care for my own needs. I have spoken one word in my life. I have many challenges that made others believe for most of my school years that I was profoundly mentally impaired. I was introduced to a keyboard by a woman who believed in people like me who were non-verbal when I was ten years old. That was the first time that I could share my needs and thoughts. I had taught myself to read by following the letters closely as my parents read to me and my sister everyday while I sat on their lap. By the time I was given a keyboard I knew how to spell words.
Throughout my childhood I was surrounded by books and music and I found my voice through my music and my typed messages. I have composed music for sixteen years and I have many things yet to write. I have found a love of poetry and though I am just beginning to learn how to write that well, I love being able to share my thoughts in a few words well chosen. I hope when you meet someone who is non-verbal you assume they have intelligence because the experts might be wrong about them.
My first poem:
I wrote this poem on the last day of a very wonderful trip with my parents and a caregiver in an RV. It was the first long road trip I had ever taken. I remember many things about that trip but the most precious to me, is that we did it!
It was a trip that holds a lot of memories. My wish is to have more trips, but for now, I hold these memories close to my heart.
My Impossible Yes!
I sit in the shadows of the Black-hills and all their beauty
I am in awe!
For me to travel has been a great feat
I am not alone here
You see, I depend on the legs and backs of many people to enjoy this magnificent place
If I were able, I would drive through the hills, and feed the curious burros that came to greet me
I would take pictures of buffalo as they wandered the hills in herds
I would run up and down the hills, shouting with joy!
I would sit quietly watching the wild horses who live in as much freedom as they are able,
Their family bonds offering safety and comfort
I carry these memories in my heart
Thanks to my family I have done the impossible!
My second poem:
This poem came to me because of all the ways we are judged and judge others. Our inability to really see into people’s minds and hearts, keep many of us living lives apart from others.
Thoughts In My Head
Talk is cheap they say
It comes so easily off the tongue
It rolls around mouths and exits into people’s ears
forming thoughts in the listening heart
Talk is cheap for those who never think twice
about making sounds that form words
Words that form other people’s opinions
But for those of us who have no words others can hear
their thoughts are formed by our appearance
by the lack of words,
never seeing beyond the visible
to hear the hearts who live in silence,
who live in bodies that betray their intellect
I say talk is cheap but thoughts are expensive
Thoughts formed without questions hurt many
My third poem read by John:
This poem came to me while we were in a beautiful cabin during a rainy day on the North Shore. I felt so peaceful there and I want to have that feeling stay in my mind. This is not easy to do somedays, but I find a place inside me that holds the memories of that day, and I feel peace all over again.
A Resting Place
People get busy
They overlook, overwork, get weary
keep going…and going
They ignore signs of hope
the call to rest
leaving behind and getting away seems impossible
like there’s obligations bigger than they
It’s a call often ignored
but the North Shore restores mind and soul
It gives a break from life as we know it,
providing comfort in its solitude.
Thank you Lake Superior for helping us slow down
explore what is lovely inside each of us
Together we love
apart we long for peace and harmony