Archive for Caregiver

A Letter to Myself

January 18, 2012 · Filed under Caregiver, Composing for piano, Disability Awareness, My Faith, PCA's, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs

I have been taking time to relax this week because I have been sick. I feel better and I am eager to share something today.  In times when I am quiet, I think of things to write about.  Today I feel up for writing.  

11 years old

I have many memories of days when I couldn’t write, before I could communicate,  before I could answer yes and no questions, not knowing if I would ever be able to do that.  Today I am writing a message to myself, a message I would have wanted to hear when I was young and had no words to share with others.  No hope that it would ever be different.  Today I can write this letter.  This is what I needed to hear.

Me at 9 years with Roxanne, one of my favorite people

My Dear Little Karly,

You see and can’t respond. You hear and cannot speak. You dream and cannot make those dreams come true.  Your hope is long gone that these things will be yours.  It is your life that is different than everyone around you.   You do not get the same treatment in school that other students get.   You hear people speaking to you like you are an infant.  You cannot respond with something suitable to that kind of disrespect.  There seems to be so little that is right for you.  It seems so hopeless right now.  Your life seems to hard to bear.  It’s not the life you would have loved to live.  There has been little to ease your worried mind.  

It will not always be this way.   You will have many things happen to you that you would not have chosen, but your life will be different than it is today.  Rett Syndrome will be discovered and there will be answers for what happened to you.  Do NOT fear your life. Do not fear what will happen.  You will be loved in ways you couldn’t have imagined.  You will be respected for what you can do, not pitied for what you are unable to do.  You will have a voice.  Your words will matter to many people.  

Remember these days long enough to write down your experiences, then let them go.  They are a heavy burden on your heart.  But other families need to know what you have lived through.  You will always have a place in this world.  Even if it looks hopeless now, your life will make a difference and you will have opportunities to contribute to this world.  

You will have joy.  You will find peace when you are outdoors.  You will discover a love of water and how much it will soothe you to spend time at the lake and watch the river boats on the St Croix.  You have always loved music and heard many songs played in your home, but what you don’t know now is that you will compose music.  You will have a voice through your music that others can hear with their ears.  You will not know how many people will be blessed by your songs.  But, most of all, you will be loved by God.  You will have a blessed life.  Not only for the things you can do, but because you are so loved by God and He will make your life worth living.  He will give you peace in the many difficult days you will have.  He will make the impossible happen.  He will bring hope to a life that seems impossible to enjoy.  Love will be the reason you are alive.  

It will be possible for you to have hope.  Don’t look at what you cannot do because that will discourage you.  Look at what you are capable of. Much will be discovered yet.  You do not need to be discouraged. For each difficult day you will have days that are incredible.  

If you focus on the spiritual side of your life you will be free.  If you focus on your body and your pain and your limitations, you will be in prison your whole life.  In the end you will know how many people have been changed by your story, so don’t be fearful to share the truth.  The truth will set you free and it will help bring understanding to a disorder that is so cruel.  

When your life is finished here on earth you will have such joy in knowing that you did everything you could to help others have hope for themselves.   

Find  joy in the little things. They are often the biggest things.  

You are loved deeply.  

~

Me on my 1 year birthday

I want to end my blog by saying, I didn’t realize how hard this would be to write, but I am glad I did it.  It’s important for me to remember, but not to focus on it too much.  I hope my experiences in my life can be helpful to other Rett families today.

Love, Karly

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Thanks For Giving

November 21, 2011 · Filed under Caregiver, Companion Horse, Disability Awareness, My Faith, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged , ,

It has been a wonderful week for me!  Many wonderful gifts have come into my life and I am so thankful today.  The medication finally stopped tormenting me and I am feeling more like myself.  I’m not interested in medication unless it’s absolutely necessary again, so my gratitude is that we tried it, found out what happened and were able to get off of it.  

I was writing a lot last week.  I had many opportunities come to me that I wasn’t expecting.  One of them was to be a chapel speaker at Teen Challenge.  I can choose the date so I asked for one after Christmas.  I worked on my talk for about six hours so far and it feels really good.  It’s a miracle that I am able to share anything at all and I feel so fortunate, truly fortunate to be given an opportunity to share for up to 50 minutes.  It will be in front of 150 people.  Their director, Steve, said that my story is very inspiring especially to people who have some really hard times.  I feel so blessed to be seen as someone who has a message to share!

I was also given the opportunity to write for a horse magazine called Apples ‘n Oats.  I will be writing for the Spring edition, but their winter edition has my favorite photo from riding this summer with a brief message from me.  It’s so beautiful.  It will be an entire page of their magazine, so I feel very happy about that too.  applesnoats

This is the photo in Apples n' Oats. My Mom took it while I was riding in November.

I was contacted because my song Ever After was used in a meditation CD for caregivers.  I think it sounds like a beautiful way for people who provide all kinds of care to others others, be provided and cared for too.  Creative Health Care Management

I wrote a poem for my new friends at Bible Study, but it’s a poem for everyone in my life who has become dear to me.  That is many people this year.  I feel forever changed and so much love.

When Time Stood Still

Karly Wahlin

I saw my life stretching before me, 

longing for connection with others

reaching for a hand so elusive

asking questions not heard

I saw the awkward glances in my direction

hoping they wouldn’t expect 

more than I could give

I begged God for someone who 

knew with their heart

someone who saw with their kind eye

who gave generously of their friendship

seeing my contributions as enough

Hope restored is a powerful thing

giving strength where there was isolation

bringing friends into a circle warmed by 

the fire of unity

I found you!

I have been blessed.

My favorite photo of me and Beau


My dear friend Laurie, and Chester. They have blessed me with some of my favorite moments.

Love, Karly

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Peace

September 11, 2011 · Filed under Caregiver, Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Uncategorized, Understanding Rett Syndrome · Tagged

On the river this week.

Its hard to imagine a day being more beautiful than it is here at home.  It’s sunny and warm and the birds are singing. The flowers are perfect.

It’s not overlooked by most of us, that this day has a history that is painful.  It’s everywhere we look.  Whenever we turn on the tv or listen to the radio it is being discussed and talked about, over and over.  I feel really sad for those who were harmed and have very painful memories.   I asked God for healing for many people because it’s hard to have that hurt inside of us.

I have something in my heart today that I wanted to share with others.  I need to start by saying that people who intentionally hurt others have problems I can’t even imagine because it is ignorant to think that it won’t come back to harm us if we hurt someone else.  I have been thinking much of peace lately.  I am so glad for the days when I feel peace inside of my body.  The peace I can talk about the best is my own.

I’ve had many hard days lately. If I could jump out of my skin and run away, I would never come back to it. I have felt much frustration and sadness over the trouble that Rett Syndrome has caused me.  There are times when I feel that I have a great life in spite of it, and other times, I can’t stand what it has done to me and my family.  I have so many limitations and getting my needs met is getting harder on my caregivers.  That is very hard on me too, because I know what I want to be able to do, and yet I can’t do it.

I have so much trouble trying to just live, but in my heart I have so many things I want to experience in my life.  I don’t know if a cure will come.  It would be a miracle if no other children were born with this disorder.  I haven’t met anyone with Rett Syndrome who has it easy, but I can say this, there is so much hope in my heart today. I know that if I struggle everyday I am not alone.  I have family who have loved me so well. It’s great to be at home with them.  It’s not hard going to bed feeling content everyday, even if it’s been a hard day, because they tell me they love me in so many ways.  I am fortunate and I feel peace because I know there is more than I can see in this world.  I am not going to suffer forever and I feel glad for that.

I have found joy in my heart. I’m not afraid, if I live for a long time or if I die soon.  I am living a life I hope helps others and brings peace to other girls with Rett Syndrome. Their families have concerns that most can’t even imagine.

Peace and hope come even if life is really hard.

Love, Karly

I got to ride Chester early yesterday morning with great friends helping me.

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Communication is For Everyone

August 3, 2011 · Filed under Caregiver, Disability Awareness, Facilitated Communication, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing

This is the second time Amy and Elizabeth have ever facilitated together. It worked great!

Communication is one of the things I never stop thinking about.  Yesterday Elizabeth came again and we had another wonderful time together.  I asked her caregiver to assist my typing again and it worked great again.  It worked well for Amy and Elizabeth too.  I wanted to share this because people have been asking me again about how I learned to type and communicate my thoughts.  It is something I have written about in How I Communicate.  You can find it at the top of my blog.

This is the second time Kristen and I had ever facilitated together. I love doing that with new people.

When Elizabeth went home, Amy, Mom and I decided to write some more about the details of learning to facilitate typing with me.  It was amazing how much information we had when we talked about it together.  I wrote a lot of it and they added their information.  We are planning on using it to teach my caregivers and friends how to  assist me in communicating better.   

We want to have more people use my keyboard.  It will help me so much and give my Mom a break.  I know after having Kristen be able to do it really easily that it’s not impossible for others to learn it.  But it’s been hard to describe how to do it.  I think the information will help a lot.  We will be making a video too.

This is a poem I wrote today for my Mulberry Poets Group that meets on Thursdays.  

 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 our 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.

 

Karly Wahlin

August 3, 2011

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My Story

July 22, 2011 · Filed under Caregiver, CD production, Companion Horse, Composing for piano, Disability Awareness, Facilitated Communication, Music & Art, PCA's, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome

This is where I wrote this today. Beau was very curious about all the equipment.

While I type my Mom reads my words into the recorder then she types them into my computer.

I wrote this today for a group of parents who have daughters with Rett Syndrome. It might help some people so we are going to post it on my blog.

My Mom has told me about this new group and that I could introduce myself when I was ready.  Today is a good day and I am ready to tell you of my story. I hope that it helps you dream big dreams for your daughters who have Rett Syndrome.  I am 26 years old.  For most of my first 12 years we had never met anyone else who was like me.  I didn’t understand what had happened to my body.  It was a very hard life for many years.  I suffered a lot of pain and I wasn’t given opportunities at school to show who I am inside. I lived with no way to communicate my needs or thoughts for 10 years.  I was trying to tell my Mom and others around me that I was in here and wanted to be understood, but I couldn’t communicate that without extra help. I gave so much of my energy at that time.  I was sad and scared and I cried a lot.

Since we had no idea about Rett Syndrome my Mom just kept trying everything she could think of.  We read many books together with my sister who loves to read.  We listened to books on tape, we listened to the radio and while my Mom played piano I sat on her lap and watched the keys.  I loved music.  We did this everyday until I was too big  for my Mom to play around anymore.  I haven’t had an easy life, but I have been surrounded by lots of love.   My parents and sister are very musical and I was surrounded by many different kinds of music.  I didn’t get much hope when I was in school but I got hope from my family.  My mom believed in me and kept trying so many things to help me with my health and with my intelligence and with communication.

 When I was 10 years old my Mom and I read about a man who lived in an institution most of his life.  We read it together and I remember sitting so close to the words and watching my mom read the mans story and how he was able as an adult at 36 years old, to begin typing.  His family gave him a chance and he was able to leave the institution. He even wrote a book.  He needed help with his arm to type, because he couldn’t control much of his movements. But with the right kind of help, he showed that he was very intelligent and just waiting for someone to find out.  I loved every word from his story! 

My Mom didn’t know at that time that I had taught myself how to read by sitting on her lap and looking at the words as she read for so many years, and I figured out how to spell most words. So by the time I was given a typewriter, by a woman who believed in people like me, I could type words. I typed very slow. Many times I couldn’t type no matter how hard I tried because of my movements that I couldn’t control.  But today, if you see me typing, you will see that I type very fast.  I have been so fortunate. Much of my life has changed so much.  I still struggle everyday with Rett Syndrome.  There are times I can’t feed myself, times when hyperventilation and breath holding make my days really hard, times when seizures stop me, times when I have terrible headaches, or frustration I can’t control and anxiety that makes me feel crazy inside.  Nights when I can’t sleep. Days when I can’t stop chewing, but with all of this I have a blessed life.  I have a life that has great times in it.  I am a speaker at times.  I have written for a magazine.  I have my own CD of music I have composed for piano.  I am sitting here today with my miniature horse sleeping by my wheelchair.  I have wonderful caregivers in my life, who have given me opportunities, because of their care for my body to be as healthy as I can be.  I give them lots of credit because my family needs lots of help to care for me.  

So today I hope you hear my story and are inspired to believe in your daughters.  Because if you do, they will show you who they are and what they are able to do.  Don’t believe that the tests are a good indicator of their intellect because the tests I was given in school show that I am profoundly mentally impaired.  It’s not true and those tests caused me much trouble in my life.  I can’t show you my intellect but if you believe that I have it, you will change most of all because you will try many things to help me become the best person I can be.  That was my Mom’s belief and it worked for us.  I have not forgotten everyday the sacrifices and struggles we have had.

Please don’t let Rett Syndrome be the only thing that is said of your daughter.  It’s part of who I am but it’s not all that I am. 

Love, Karly

I was so glad to meet Susan Norwell when she came to my house

January 2010:
I asked Susan Norwell if she would be willing to write something for me to put on my blogpage.  She has worked for many years with people who are challenged with communication.  I had a great visit with her last Fall.  She and I have written to each other by email since then.  I am excited that she believes in Rett girls.  We need people like her to believe in our intellect and not get stuck on our inability to express ourselves easily.
Love, Karly
Dear Karly Bloggers,
I have been working with girls/women with Rett for almost 30 years.  They have all taught be so much, that I wish I could go back and help those first two babies I worked with in 1980.  I would have a lot more to offer them now.  What I have learned, most importantly, is that Rett is definitely a motor disorder and the motor deficits that are affecting cognition is what we should be concerned about.  Instead, professionals dwell on the “apparent” cognitive deficit (evidenced by the lack of motor response) and tremendously undershoot these girls.
I have lost count of the number of girls I have worked with, but this I know for sure….they are cognitively more capable than they are able to express and it is the lack of skill on our part that most hinders their development.  So when I was asked to visit Karly to witness this young lady who was able to ‘Blog” and create music using FC, I was delighted and looking forward to learning something new from her.
For years I have utilized Facilitated Communication with my students with autism.  I was trained by the original Biklen, Syracuse crew back in the early 90’s.  I work hard to decrease support as soon as possible and many of my students have “proved” the typing is theirs by reporting experiences I did not partake in and by continuing to provide correct answers even after I shield myself from their choices.  I never want to influence a student as that would be a dishonest portrayal of their abilities and would be unfair to all involved.  I currently use FC with a young woman with Rett, who types more slowly than Karly, but clearly expresses her ideas and intentions using an AAC device called the tango!
Karly communicated via a keyboard facilitated by her mom.  She was able to answer my questions and make appropriate comments throughout our visit.  Her communication would sometimes halt as she lost the motor plan. In my professional opinion, this proved to validate her communication as those stops are consistent with the disorder.  Karly had wonderful insights, a great sense of humor and spoke in a manner that is more like writing than typical speech.  This is again something I have noticed with other students who use FC.  They typically don’t use the slang we all do and are more precise in their communication, which is more similar to how we communicate in writing.
Karly is very blessed to have a mom that believes in her and others who support her communication and creation.  There are so many girls who are not this fortunate and are still trapped by others’ low expectations.  Please don’t leave any method, style or type of communication untried. We owe it to our “girls.”
Susan Norwell M.A.
Educational Specialist (Rett, Autism

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Happy Heart

July 10, 2011 · Filed under Caregiver, Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged

Our friend Amy and I had so much fun with Kristin and Elizabeth.

Elizabeth can type with Kristin so we can visit easily.

This past week my friend Elizabeth came to visit me and we did something really fun together.  I love to see her and we always enjoy talking together.  She is going to be 30 this summer and she also has Rett Syndrome.  She types with a keyboard too.  It’s like having a friend who knows everything about you.  That’s what we feel about each other.  There is a group of people who give boat rides and fishing opportunities to the elderly and people with disabilities and they have a pontoon in the river near our home.  Elizabeth fished too.  We finished with a picnic.  It makes me so happy to be around another woman with Rett Syndrome who is able to communicate with me.  Sometimes we can do it easily and other times we really struggle to type, but this week we just had fun together.

Our captain was so fun. He joked a lot.

Elizabeth loved to fish!I wanted to share this because I know many of us with Rett Syndrome suffer and struggle.  It’s not a life we would have chosen.  But to know that there are others who understand us brings peace to my heart.  We went to church last night and I felt like there was something very important that happened.  Our pastor was sharing a very sad memory from his childhood and how that memory and those experiences still affect him today.  It was sad. It was real.  He was talking about what he does with God to help heal some very painful experiences in his life.  It made me see how God has helped me accept a life that no one would choose. It’s a life full of challenges that most would not imagine; with dependence on others who rarely stay in your life as a friend,  who can leave because it’s best for them.  Who have goals and dreams that you don’t fit into.  A life filled with physical pain and suffering at times.  A life that requires so much patience.  A life that is lonely.  

But I sit here with a smile on my face and great joy in my heart because my eyes can see how much better off I am than I would be if I never had this disability.  I don’t feel like I have an impossible life. I have seen things that many others can’t.  I have experienced joy that is not from this world.  I see God working in people in ways they can’t understand.  I don’t worry about Rett Syndrome.  It hasn’t stopped me from being loved by God.  God has given me so much peace to endure this life.  I know that even if I have no abilities in my lifetime that others have, that my life mattered while I was here. Because God showed me that even if I struggle, He can use my life and my story to open people’s minds and their hearts to girls with Rett Syndrome.  We are not the limited people we appear to be.  Our hearts are held by God and that is the part of us that really matters.  

So even if everything else seems to be wrong with our physical bodies, I am confident of all the girls I have met with Rett Syndrome, that our hearts are open to God.  I have so much joy because my hope isn’t in a cure.  My hope is not in a life that is easy. My hope is in my heart. It is from God. So to me, Rett Syndrome is God’s gift because He made it become a blessing.  I believe that with all my heart today.  I feel so glad for my Mom and Gregg who live with me everyday and go through many hard things with me. They believe in me always. 

A memory I love from camp two years ago. We talked of spiritual things and loved every minute together.

I send you great joy and hope.

Love, Karly

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My Voice paper

February 20, 2011 · Filed under Caregiver, CD production, Composing for piano, Disability Awareness, Music & Art, PCA's, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged ,

My friend Ashley and I on our way to camp last summer. That's a fun memory for me.

 

It is snowing in Minnesota again! Last week it was beautiful and we lost a lot of snow because it melted.  But today we are suppose to get about 15 inches again.  It is not what we wanted, but we are lucky that we have a warm house.

I wrote something last week for the Minnesota Women’s Press.  My music producer, Barbara McAfee told me that the theme of the newspaper for April is Women and Voice.  I had 450 words that I could write, so this is what I sent in.  I don’t know if it will be chosen, but it was fun to put my story into that many words.  I love to write. It helps my body calm down to get my thoughts out.  I remember how hard it was before I could communciate, so I really feel the struggle in my heart for those who can’t communicate.

In My Own Voice

I have lived for 25 years.  Only my mother has heard me speak.  I was nine months old and I said “meow” when we were reading a book together. It was the first and last word I ever spoke.  I tried really hard to speak, but it has not been possible for me because of Rett Syndrome.  After years of therapy and questions, we got that diagnosis. Many things changed.  It was a burden to be a young girl with Rett Syndrome because little was expected of me by everyone but my mom.  She knew I was in here.  She believed when others talked about her behind her back.  I heard them.  My story is one of great joy and happiness because, in spite of all the things that have been taken away from me in my life, I have had many great gifts.

I began working with my music therapist when I was 14. She believed in me and gave me a voice by developing a way for me to compose.  I didn’t know if it would be possible for anyone to hear what I heard in my head.  But with much effort a song came out. It was heard by others for the first time.  I cannot use my hands to play piano. I cannot hum the song I hear in my head.  I cannot write it down, so each note is slowly and carefully chosen by me from cards that my teacher places in front of me.  Somedays it’s impossible for my hands to work. After many months of effort, my song comes to others’ ears.

It’s been many years since we finished my first song, but that song changed my life.  I was no longer just the young girl with the diagnosis of “profound mental retardation”.  Those who believed, heard my voice and saw me in a more loving way as someone who had lost so much because of a disorder she never chose.  I have finished nine songs. The best day of my life was when I sat with my family and producer in the recording studio, surrounded by people who felt my voice needed to be shared.  I heard my songs performed by a wonderful, professional pianist.  They brought my music into the world on a beautiful CD, that I titled, “In My Own Voice.” My sister’s viola added depth.  I hear more music yet to be composed and I feel content.

I hope when you meet someone who is unable to speak that you assume they are intelligent.  It may change their life to have just one person believe.

Karly Wahlin

 

I’m eager for Leah to come for a visit. This is her and Ludo at a lake near our house last summer.



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A Place in This World

February 10, 2011 · Filed under Caregiver, Composing for piano, Disability Awareness, Music & Art, PCA's, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing · Tagged ,

At four I sat on my Mom's lap everyday while she played piano for me.

 

I have been thinking a lot about my life and what I hope will happen in this world while I am still alive.  I haven’t had as many events and activities as I did last year because of my CD.  It was overwhelming sometimes to have that much attention, but I felt so happy to have a voice that others valued hearing.  Since the Fall I have not been as busy.  I love hearing from others and how they are affected by my songs.  This is the day that my music therapist is coming and I am working on a new song.  I feel very happy about that.  This new song has been waiting for a long time to get out of me.  I am calm today so I hope it will go faster than it does when I am hyper.

My keyboard is the best way I have to communicate. I hope someday it's easier for me.

 

My Mom and I have been reading a book together this morning.  It is called, Disability is Natural.  I like what she is saying because it has been true in my life.  She said that if our world revolves around therapies, and services for people with disabilities that we get stuck in our lives and don’t have many freedoms that an ordinary person would have.  I know that if anyone could see what really happens in some of the day programs in this country they would be very upset.  People are not given lives that matter when they are grouped together with few opportunities to have a normal life.  It’s ridiculous to think that going out in a bus with others twice a month if they are lucky to some store or park makes us part of our community.

For people like me, who cannot make our hands operate things, we are given even fewer opportunities.  I have an intelligent mind but the programs near us underestimate most adults with disabilities who have needs they can’t take care of themselves.  It’s not appreciated that a person can have an intelligent mind and limited physical skills.  We are grouped together with elderly adults who are mentally impaired and have Alzheimer’s.  We are given the same meaningless objects to fiddle with.  Since I am intelligent  we are  going to have to find a way without a day program, to have a life without isolation.  We are exploring everything we can but it’s hard to find people who are open to having someone who doesn’t sit quietly in book discussions.  My writing group ended because my teacher felt not enough people were coming.  I loved going there.  I loved feeling like I could share my thoughts and be heard.  I have a women’s study group that I have been going to but since I haven’t felt well for a while I have missed many days.  I decided to write about this because I know there are many young girls with Rett Syndrome.  I hope you believe they are intelligent.  I was so happy to hear of the comments last week on The View when Anna’s family shared that she is intelligent and understands.  That it’s just her body is not working right, because that is new.  When I was in school and especially when I was young, people assumed girls’ with Rett Syndrome were severely mentally impaired.  Little is offered to girls with that diagnosis.  It seems like that is changing and I am so happy about that because there are so many great things to do if we are seen as intelligent.  For those who have young girls with Rett Syndrome, I hope your schools are believing in her and when she graduates that her life doesn’t end and that she is allowed to show in every way that she is intelligent and capable of doing more than sitting in a room with others who are very impacted by their own disability.

My friend Elizabeth has Rett Syndrome and does not go to a day program either. She is very intelligent and communicates with a keyboard too.

 

My dreams for my life are to live with my family with the right kind of help so I am free to communicate, create art, write, have friends, have great things to look forward to, have people around me who believe in me and help me on the days when I can’t stand to be living in my body.

I have many hopes that one day there will be relief for the many girls and some boys who live with this rare disorder, but in the meantime, we need your kindness and we need your belief that we deserve more than just sitting and waiting in buildings until we die.  My Mom said, after we decided that I would not stay in the adult day program I was in after I graduated from High School, that it was like going to kindergarten and never being able to graduate for your whole life.  I would say, it’s like going to pre-school before you can crawl and talk and never be able to graduate.  It’s painful for those of us who are capable of more.

I have never been able to play music that sounded right to my ears, but I have songs in my heart waiting to come out. Leah has always played beautiful music.

 

Until there's relief for girl's with Rett Syndrome we will live in difficult bodies. My friend Ingrid Harding gave me this magnet for my van. It's from Girlpower2cure. There is hope for us.

 

I believe there are fewer people with low intelligence than many believe.  I think there are many people without the freedom to communicate because no one offered them the dedication it takes to make it possible to share who they are.  If it weren’t for my Mom, some of my teachers and caregivers, I would be just like them and I would hope to die very young.

I shared this because I hope this world continues to change for the better.  We are all better if everyone is valued.  I am sending my Rett friends a big hug today.

Love, Karly

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A Season of Peace

December 4, 2010 · Filed under Caregiver, Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged

I want to tell everyone thanks for your interest in my blogpage and for the many people who have left questions and comments for me.  I always feel so happy to read them.

My friend Karen and I walking with my gait trainer

I have been working with a physical therapist who has fixed my gait trainer, so I feel free when I walk in it.  The adjustments she made to my gait trainer have made my me feel so light and able to move easily.  I walk really fast now.  I was so restricted before because it was too many straps on me.  Now I just have it around my chest and I can walk for 20 minutes without feeling really tired.  It is a great thing for my spirits to be able to move on my own.  I have someone assisting me, but I can take my own steps and I love it!  I have had many people at Boutwell’s Landing, where I go to walk, become friends of mine.  They are so kind and say encouraging things to me.  I feel so happy when I am walking there.

It snowed today. Gregg walks with me whenever he can.

I wish everyone peace this Christmas season.  It has been a year of great struggles for me, but I feel great now, and I am doing whatever I can to stay that way.  I know what it feels like to have rest in my heart and my body. I have that today.  I am so glad for it.  I know that many of us living with Rett Syndrome are really struggling everyday.  I pray for you.  I pray for hope in your heart.  I pray that when you wake up today, you feel rest.

Love, Karly

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Having Time Alone

October 29, 2010 · Filed under Caregiver, Disability Awareness, My Faith, PCA's, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged

My Mom and I planted this pot for Mother's Day

I have not felt great lately.  I am discouraged that life is so hard.  I have been so hyper.  It makes me hold my breath and hyperventilate all day long.  It’s not fun to feel out of control.  I know that my other Rett friends struggle with anxiety too, but I don’t see them acting the way I do.  I haven’t been able to breathe normal most of this week.  I was so discouraged yesterday because I was feeling how hard my life was.  I don’t feel like I have much interest in living in a body that causes me so much struggle.

I’ve had a few days in my life where I didn’t hold my breath and hyperventilate until I was exhausted.  It has become really sad for me.  I thought a long time about whether I should write about this on my blog.  But since I am honest about Rett Syndrome and how it has affected me I decided to be honest about this too.  I have had great health and I have had opportunities that other females with Rett don’t have, but I have not had an easy life.  I struggle daily to find peace and calm.  I struggle a LOT with anxiety.  I struggle with breathing normally.  My stomach often hurts.  I’m living in a body that gives me so little rest.  I get discouraged when I see how exhausted my parents get, trying to meet my needs.  I like comfort as much as anyone does.  It’s so difficult to love people so much and know that my needs wear them out.  I never forget how hard it is for others to care for me.  I haven’t wanted to have so many people in my life who are here and trying to figure out how to best meet my needs.

I haven’t had a day in my life that is just for me.  That I do whatever I want.  That I just stay in bed if I want.  I can’t go anywhere by myself.  Even going to the bathroom, where most people have privacy, I have none.  I don’t see how I can ever be alone in this life.  It’s so stressful for me to always have someone in my site.  I decided yesterday that everyday I want to have time alone in my room.  I asked my Mom to help with this so I could listen to music or book on cd by myself.  I’m glad for this because I have some peace in my room.

When my days seem to hard to live I just pray and ask God to see how I can help others.  If I just have to struggle and I can’t use it to give others insight into Rett Syndrome it’s not worth the pain.  I hope you understand that there are many days that those of us who live with Rett Syndrome live, wanting something more from this life than separation and pain.  It’s not easy to be this discouraged, but I wanted to let you know.

Love, Karly

I love this garden fairy. She is in the living room now by our plants.

 

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