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Remembering Karly’s Life

October 5, 2012 · Filed under Uncategorized

October 4th, in “Karly’s Spiritdances Garden”. This is the view from the chair Karly sat on in her garden the last few months of her life.

October is Rett Syndrome Awarenss month.  As Karly’s mom, I know how much she struggled throughout her life and ultimately died as a result of  the many complications that Rett Syndrome created in her body.  These are her some of her last written words:

“God is my best friend, and He has given me so much comfort to have endured disability and pain.  But it’s been hard, so I hope that there will be a cure for the young girls who are coming into this world affected by Rett.” 

Everyday of her life was full of enormous challenges. She did her best to live well in spite of them. My memory is full of the pain, isolation, stress, grief, loss and fear that Rett Syndrome caused.  Karly’s wish was that she could help other girls affected by this disorder by donating to Rett research.  Our family will be donating from the generous gifts we have received in Karly’s honor.  Please consider doing the same. Karly wrote her own bio for Girlpower2Cure.  Go here for making donations in our dear Karly’s honor.

One of the effects of Rett Syndrome is the loss of purposeful hand movements. That includes holding hands. The last few days of Karly’s life she was able to hold onto our hands. I treasure this photo of her arm entwined with mine.

Karly’s hands remained small and delicate her entire life, here at 27 years of age. Most girls with Rett Syndrome are able to do little with their hands because their hands are busy “fiddling” in Karly’s words, and often stuck at mid-line not allowing them to separate. Karly’s hands were separated each doing their own thing, so it allowed her to eventually find a way  to communicate with us. And she did that so beautifully! I miss hearing her typing.

With much gratitude,

Lois (Karly’s Mom)

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Karly’s Memorial Service

September 17, 2012 · Filed under Uncategorized

We honored Karly’s life the best way we knew how….through her music, her words, her poetry, by hearing her last composition live for the first time during the service, with candles providing the light she loved, beautiful flowers adding to the color she loved, photos of a life well lives and sharing our story. One full of mystery, inspiration, pain, loss, great joy, grief, great love, creativity, faith and freedom.

Thank you to the hundreds who came from all over the country to join us in loving and remembering Karly. She brought so much light into the world and we feel her loss so deeply.  She often told us over the past 12 years to remember, “the day I die will be the best day!  It will be the day I get my freedom.” I always told her if that day came I would try my best to remember her words, because it would be a very sad day for me as her mom.

In a 2010 chapel talk Karly prepared for other adults living with physical disabilities, she said:

“We get caught up in what we want to have happen in our lives, and forget that God has a much bigger vision for us than we could possibly have for ourselves.  

God knows who we should meet.  He knows who will help us fill out His plan for our lives.  We don’t need to force anything  But I can tell you that if I don’t respond when God gives me a chance, even if it seems small, I miss an opportunity to partner with God.  Don’t miss the small opportunities.  They are NOT small to God.  Don’t get so worried about the big things that you neglect the little.  

 God will open doors to you and give you a life you feel great about. I have found that my life, even with all it’s struggles, is a life that I love.  And maybe God is stronger in my life, BECAUSE of my disability, not in SPITE of it.”

This is how she lived, as best she could everyday in spite of enormous challenges. Thanks for all your wisdom, love and light Karly. We will not forget!

With great love, Lois  (Karly’s Mom)

 

Image

Karly’s latest piece of music will remain untitled. She finished it a few weeks before she died and was unable to let us know its’ title.

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Karly’s Obituary

September 1, 2012 · Filed under Uncategorized

This was posted in our local paper last week.

http://stillwatergazette.com/2012/08/27/karly-elizabeth-wahlin/

Lois-Karly’s Mom

This is on the St Croix River, taken 3 years ago.

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A Poem

July 13, 2012 · Filed under Companion Horse, Disability Awareness, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Uncategorized, Understanding Rett Syndrome, Writing, Writing Memoirs

My Spiritdances Garden

 

A Very Personal Story

 

Perspective

 

Looking back…

I have memories of times

I heard birds singing their songs,

of children, running, laughing freely

 

I recall times with Beau

who stood so quietly at my side

careful not to nudge me too hard,

hugging my wheelchair with his head

soothed by his presence

 

Flowers, planted so carefully

by people I have never met

and friends who love so well

surround me with beauty

in solitude I find peace in this garden,

my Spiritdances Garden

 

I remember days when my body

was so peaceful

it reflected the stillness of my spirt

I hear the music that lifted my heart

and gave me hope

 

I find perspective

I find purpose in my struggle

I don’t give in to grief over a body that has limited me,

even now, when my struggle feels too much to bear

and my body betrays my hearts cry for comfort

 

On days that I struggle to find peace, I remember these things

 

 

 

Karly

July 13, 2012

My Beau


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My Talk at Teen Challenge

April 27, 2012 · Filed under Composing for piano, My Faith, piano compositions, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Uncategorized · Tagged , , , ,

I hope you are helped by this chapel talk that I did with my Mom reading it, and Gregg helping with leading and prayer.

Steve Burke (Teen Challenge Director of Education) and me after my talk

Karly Wahlin

December 29, 2011

When I was asked if I could share a message today, I started praying, then I asked God for a message that would find a home in your hearts.  I do not stand up here because I cannot stand without a stander.  I do not speak into the microphone because I have no voice that you can hear with your ears.  I am not on stage because I cannot see far with my eyes.  I am not in front of you because it is hard for me to be visible because of movements I cannot control.  I asked God for something that would be worth your time to share, because empty words are foolish.

About three months ago a pastor named Jeff Lexvold sent me an email asking if he could use my story and my music for a sermon he was preparing.  I have a blog and he had read some of it and was very inspired by my story and noticed how much I write about joy and hope in spite of a very challenging life.  He asked if he come to our home to meet me and my parents, so we did that.  I felt so comfortable with him and respected the way he was going to share his message using some of my words.  He titled his sermon “Lessons From Karly”.  He shared it at our church in front of thousands of people.  Many more people listened to the podcast of that message.  I felt a little awkward, but fortunate that God could use my story to help other people.  What I didn’t understand was how difficult that next month would be.  I became so irritable with high anxiety, overwhelmed by life and had thoughts of death. I couldn’t drink, I couldn’t suck on my cup. I felt crazy!!  And on top of that, I felt embarrassed that my life had been lifted up as an example of joy.  I felt very overwhelmed.  What we didn’t know at the time  was that I was feeling that way because of a new medication I was given to manage my seizures. It was a terrible time for me and my family and I felt like I could never feel better again.  I prayed and it felt like God had fallen asleep on me!!  I asked for help and I couldn’t find it!  The good news is that once I stopped the medication I started to feel better after about ten days, but what I experienced during that time was very dark.  I imagine that some of you have felt those feelings…. I described that medication as “the devil in a bottle”!!!

Sometimes I feel like my life has become a burden to others.  My care is very consuming for my family.  I have many caregivers, many that are very great friends and some that have been with me for years.  But I cannot go one hour without needing something from a caregiver or family member.  It’s a life I would not have chosen for myself, but it’s the life I have been given, and I feel so glad for it, because this life is not just about me!! I don’t believe that God created my disorder. I believe that it’s something that happens to humans for reasons we do not understand, but the thing I want to have you know is, I HAVE A GREAT LIFE BECAUSE MY LIFE IS NOT DEPENDENT ON EASY DAYS OR HOURS, BUT ON MY RELATIONSHIP WITH MY GOD.

I’ve had many hard days. It has not been easy.  I asked God for a reason to live, for a reason to struggle. He gave me my story. One filled with mystery, questions, trouble, hope and most of all, great love.  I’m not living today because of my will, but because of God’s grace to me.  He has made my life visible.  

If you would have known me three years ago you would know how much has changed for me.  I had graduated from high school with no place to go.  The classes offered to me in school were a joke!  They focused on things I will never be able to do.  It was all tasks, not intellect, so I was very discouraged.  I wanted to have more to do.  I had never written or done public speaking.  I couldn’t say a word. I never have!!!   I didn’t think I had much to say but a neighbor and great friend, asked me if she could set up a blogpage for me and encouraged me to share. I didn’t know what a blog was!  I had never heard of it, neither had my Mom!!  But, we learned and now I am writing often.  I’ve had over 82,000 people visit my blog from all over the world!!  Drs, teachers, therapists, researchers and parents. People leave me messages from the Philippines, Korea, France, the Ukraine, England, Egypt, Istanbul Turkey, Australia.  Places I will never go. My blog has been translated by others into many  languages. God has brought my words to them and given them hope.  I was not expected to offer anything of significance to this world.  I was just going to require care my whole life…..but God had another plan!

I want to have you remember something: no matter how difficult our life is, no matter how low we feel, God is with us and only He can lift us up.  He’s our one true friend. Our friend who knows our hurts, our limitations, our failures, our terrible thoughts and loves us anyway.  LOVES US!!!  I feel that in my bones, I NEVER doubt it.  I pray everyday for vision, for that moment.  I share everything with God.  He doesn’t have a hard time understanding me. He gives my heart wings.

There are times in my life when I find that I don’t want to go on but then I see how much God has worked through me and how much we can do together, and I feel like my biggest gift back to God is to be His helper.  I don’t have much that I can do physically, but I can write and I can pray and I can encourage; And I do that every day that I am able.

There will always be trouble in our lives. It’s not perfect here on earth. We cannot expect to have only trouble free days.  It’s how we live in those hard times that matter.  I have found the hardest days for me are the ones where I only focus on what’s right in front of me and I don’t think about the bigger picture of my life.  If I only see the struggle, I will be defeated. But if I step back and ask God to give me a vision of my life from His perspective, I see how He has been there for me through everything.  I have NEVER been alone!!  I do not see that if I am focusing on myself.

I have never had an addiction.  I don’t know what you struggle with everyday, but I know what it’s like to have my body need to do something desperately, that causes me harm.  I drum on surfaces with my left hand. Even if I get slivers in my fingers, my compulsion to drum still happens.  I can’t stop it.  If I try really hard I feel very overwhelmed.  Maybe that’s something like an addiction where your body craves something that if you give in, causes harm.

God has given each of us something to do no matter what our circumstances are.  It’s not our limitations that stop us because God is bigger than our limitations.  God is bigger than our worst struggles.  He is bigger than any discouragement we might feel.  We will have challenges and many of them may seem overwhelming to us.  But God has proven to me that my challenges are Not a barrier for Him.  I have the blessing of having people around me to remind me of that when I get discouraged by my struggles.  Without encouragement from the right people our hearts become heavy, because life can be hard.  It’s important to know that God is near.  He is NOT far away watching us fail.  He is close and wants to lift us up.  Do not ignore the voice of a friend who knows God, who God has brought into your life to bring hope and healing.  There is much to discourage us,…..but God is an encourager.  He encourages our hearts.  He encourages us to look around to see how we can bless someone else.  The encouragement of a friend is NOT something to ignore.  God brought them to you!

I want to share a poem with you that I wrote for my friends at our Bible Study Group.  They have been the best encouragers.  They come to our home with food.  When my Grandpa was dying, they prayed with us.  They check in to see how they can help.  We have fun together.  We talk of spiritual questions.  We don’t ignore real concerns in each others lives.

When Time Stood Still

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.  

Karly Wahlin 

November 2011

I would like to play  my song, “When I Get to See You“. It brings me back to a time in my life that helps me remember, I am not alone.

I hope you find the truth that God put in your heart, to remind you of how He formed you.   How He designed you is unique.  It is not His purpose that you are like everyone else!  I am one of the few women in the world with Rett Syndrome who can communicate.  My ability to type was always wonderful to our family, but not as much to others.  For the first ten years of my life I had no way to communicate.  I couldn’t control my hands, I couldn’t speak, I couldn’t walk, I couldn’t point, my eyes couldn’t see well so I couldn’t stare at things like other girls with Rett do to communicate, so I was stuck inside my body!!!  I felt so oppressed I wanted to die.  I saw no reason to stay alive.  I was little!!!  I was a little girl and I felt that way!  I didn’t have hope that it would ever change.  But my Mom believed in me.

My sister and I would read books everyday with my parents.  What they didn’t know at that time was that I was watching the letters as they read and I figured out how to spell by making the words out as I followed along.  My sister and I were surrounded by books and music, so I was learning. I was intelligent and capable in my mind with no way to let others know.  Even as I got older and demonstrated that I could type, many teachers and professionals said it wasn’t possible for someone with Rett Syndrome to type.  They had made up their minds at that time that girls with Rett Syndrome were not very intelligent, that we lost our intellect along with our other abilities.  That was NOT true!

I know that God gave me this ability to communicate for a reason and as I got older and now have a blogpage that people come to read from all over the world, I hear how hopeful they are for their own daughters who have Rett Syndrome: how much my story has given them encouragement to believe in the intelligence of their girls, and not to believe every professional who tells them that girls with Rett Syndrome are not able people.  They look at my story and my life and tell me how I have blessed them by being honest about my journey.  When I first started writing I had no idea that my life would have any impact at all in this world!!  But now I have researchers and teachers and families and Drs coming to me and asking questions about Rett Syndrome.

It was not clear at the beginning how God would use my life to help anyone else other than provide a paycheck for them.  What He has done through my music and my ability to type is a miracle!  It is a MIRACLE!!  I know you look at your life as very limited right now.  I understand that, but you have a voice and you have a heartbeat and your life WILL be better.  It will not always be a struggle to survive.  On the days I feel great, I am full of joy. I try to remember everything about those days. It helps to remind me when I feel discouraged about who I am and to remember who God created me to be.

I wrote a poem a couple years ago that I recalled recently when I was really struggling.  I asked my Mom to read it out loud to me to remind me of the strength I felt at the time I wrote it.

I am The Flower

I am the flower coming into bloom

I am a tree planted on a hill

I stand in spite of storms,

strong and free

I am a fire

Warming the hearts and souls of many

I give comfort in a world of cold stares

Karly Wahlin

November 16, 2009 

I have found in my life that if I am willing to do the small things that God asks of me, that sometimes those little things can become big.  Not because I made them big, but because God knew He could trust me with the small things and then gave me more.  It is never about my ability, because if God only looked at what I am told I can do by my diagnosis, He would not expect anything from me.  I am where I am today because God trusted me and I said “YES”, even if I was scared, even if I was terrified, even if it sounded impossible for me to do.  I said “yes” because I knew He would make it possible.  I’m not here to say that it was easy. I have really struggled because of my health weaknesses.  But I am here to say that God made the impossible happen.  He made a young girl who was not expected to do anything but wring her hands and chew on objects, and was given goals for many years in a row while she was in school, to sort shapes and match colors, and when she couldn’t even do that, was labeled “profoundly mentally impaired.”  God took that. He took what was stolen from me through Rett Syndrome, and He gave me a life that only He could have created.  I hope you remember my story when your day seems too hard and you remember most of all what God can do.  He can make a dream come true that you didn’t even think was possible! 

In the middle of a very hard time it’s hard to see where we are to go.  But if God is guiding us we will end up in the place He wants us to be.  Our paths on earth will not be easy.  Mine have been very hard to bear sometimes, but when I know that God’s Holy Spirit is the one in charge, it makes the hard days easier.  Sometimes we have made choices that cause the hard times. Other times things have happened to us that we had no say over.  But if God is in charge, we will be ok, no matter how the hard times happened!  If it’s because of our genetics, He is bigger than that! He can make something beautiful out of a big mess.  He doesn’t need perfect people.  He doesn’t need people who have always made great choices, or people who had perfect families.  We don’t need to give up, we just need to trust God and allow the Holy Spirit to make something beautiful out of our messes.  I hope when you remember my story, you remember that God has done something mighty in my life.  I am an unlikely guest speaker, but God found a way. 🙂  Nothing is too hard for Him 🙂   Without my Mom and Gregg this would not have happened. They are the people that God has used to help His word get out and I am so unlimited because of what God has done through the three of us:)

I want to end by saying: I hope you don’t give up. That you remember, you are more than your current challenges.  God has a purpose for your life that will strengthen you and give you meaning and give your struggles perspective.  He has used my hardest days to encourage others and I am so glad for that.

End

Play: “Ever After-Reprise” during meditation 

Love, Karly

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2011 in Review

January 5, 2012 · Filed under Uncategorized

I thought this was really fun. It’s all the information about my blog from 2011.

The WordPress.com stats helper monkeys prepared a 2011 annual report for me.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 21,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 8 sold-out performances for that many people to see it.

Click here to see the complete report.

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A Documentary You Must See!

November 11, 2011 · Filed under Uncategorized

I just watched a movie and I could laugh with excitement, because it’s a documentary about people who have autism and communicate through typing like I do.  It’s the story of Larry and Tracy who discover that their life’s purpose is helping others understand that the shell of our bodies can cause others to think that we are not intelligent.  That our actions disguise what our minds are capable of through no fault of our own. 

I feel so happy about it because they went on a trip around the world visiting other people who have autism and also type to communicate.  The movie is called Wretches and Jabberers.  We bought it to support their work.  I’m going to watch it with my friend Elizabeth when she comes in a few days.  To say I feel inspired, is not accurate, I feel touched, to hear their story and to see how much we are alike in our desire to be valued as humans in this world. I hope that others who see this film are awakened.   I watched it with my Mom and I saw her tears. I want to say that without the support of my Mom I would be so lost.  I haven’t had many carefree days lately but I feel like my mind is returning to normal slowly. My Dr said it could take up to two weeks to have the medication stop it’s side effects. 

 The thing I feel most grateful for is my Mom’s presence and belief in me.  I saw how much the people in the documentary suffered at the hands of others when they were young and I feel so sorry for them.  I am fortunate to be where I am and today I feel glad. I hope you have a chance to watch this movie. 

  http://www.wretchesandjabberers.org/about.php

Love, Karly

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A Very Personal Story!

October 7, 2011 · Filed under Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Uncategorized, Understanding Rett Syndrome, Writing · Tagged , , ,

After Jeff shared his message last Sunday at Woodland Hills Church

It has been a perfect week.  I have had so many great things happen to me.! Last Sunday Pastor Jeff Lexvold shared his message at our church that he titled, Lessons From Karly.  My feelings about it were: honored, overwhelmed, grateful, embarrassed and miraculous.  I didn’t want to be in the audience and noticed, so we sat on the side, but the people who talked with us were so kind and encouraged me by saying that my story changed their lives.  Jeff has been a great new friend.  He has told us that he will be sharing a message at Sonshine Festival that includes my story next July.

It’s amazing what has happened in my life!!  I never even hoped that my story and life would have this much impact on others.  I hoped that I could help other Rett girls and their families, but I never imagined that average people could be changed by my story and our families very personal challenges.  But I guess what has happened, is that God is able to use the most ordinary lives to help others.   There are 20,000 people or more at Sonshine Festival, so to imagine my story helping others feel more joy in their own lives, brings me such contentment.

I was on the Let's Go Fishing boat yesterday and invited my friend Claudia. It's been so great to have a boat I can go on the St Croix River with. I loved every minute!

It was a perfect day!

Many people go on these boats to enjoy the St Croix River.

I hope that you never give up!!  That you don’t wish for someone else’s life.  That you are honest about your own story, because I have found that God uses our struggles to bring light to others.  I sit here today struggling with breath holding and hyperventilation and I wish that would go away.  But in this I do not worry, because what I am experiencing is the same as thousands of others who live with this disorder and I feel connected to them.  I hope my story doesn’t seem impossible to you.  Because if I were to dream a dream that included some of the things that have happened in my life, it would be a fiction, but God made it into a non-fiction.  I love the verse “Delight yourself in the Lord, and He will give you the desires of your heart”.  I know that God turned my nightmare into a dream and for that I am so grateful!!

Here’s the message Jeff titled: Lessons From Karly

Love, Karly

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Great Hope

September 29, 2011 · Filed under Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Uncategorized, Understanding Rett Syndrome · Tagged

Something amazing happened to me and my family last weekend.  I was so surprised when I got a response on my blog from a pastor I have never met, but who knew quite a bit about me!  He saw my story when it was aired on TV last Spring and he has some of my music on his Ipod.  He’s going to be preaching this weekend at our church and asked if he could use some of my blog for his sermon illustration.  He was so enthusiastic because something amazing happened for him and he felt like God lead him to me. This is what Jeff Lexvold shared with us when he came to meet me and my family on Saturday.

This is the Bible verse for his message:

I Thessalonians 5:16- 17 “Be joyful always: pray continually: give thanks in all circumstances, for this is God’s will for you in Christ Jesus.”  Jeff listens to piano music while he is praying. He has many other pianists on his Ipod and a few of my songs! He asked God to bring someone to his mind that lives with great challenges and yet finds joy in living because of their faith and hope in God.  He was driving down the road asking for God’s help when one of my songs came on his Ipod, and he felt so strongly that my story was the inspiration he needed for his sermon.  He leads youth mission trips and uses my TV interview to teach compassion and understanding for his trips into areas where the students will meet many people who are not like them.  He uses my story to demonstrate that people are more than what they appear to be.  I was so grateful that God lead him to me because I had never even heard of Jeff before, and he has been so inspired by my blog.  It gives me courage to continue sharing. I listened to what he was planning on sharing and I told him I was pleased with his message.

It is hard for to be visible because of my greatest challenges in life.  Most people who live without a disorder that others can see, rarely experience what those of us with physical and visible disabilities live with daily.  We are noticed for what we cannot do. Not for our great accomplishments, not for our compassionate hearts, or for the beautiful smile on our faces.  Part of Rett Syndrome even affects our ability to demonstrate how we are feeling because Apraxia sometimes even blocks my ability to smile when I am happy!  It takes a beautiful person to recognize there is so much more than what we can see on the outside of a person. I feel so much gratitude today because Jeff took a risk and asked for my permission to share the hard parts of my life.

He shared something else with us that seemed so enormous that only God could have made it happen.  I don’t want to say anything yet about the details but I wanted to say that Jeff bought two of my CD’s and one of them is going to the band that many people know about, called the Newsboys!  Jeff is the coordinator of Sonshine Festival, a very large event that happens every summer in our state for people who love Christian music.  God is so loving and I feel it today especially.  I wanted to share this now because I have been so grateful this week.

I know what it is to struggle so much in this life.  But I also know God’s love and direction in my life and I know it’s real.

Us with Maury Glover during our TV Interview

Maury Glover the day he interviewed us for 4 hours.

Tim was our cameraman

I have had opportunities in my life that many can hardly imagine. Opportunities, that for a young woman with Rett Syndrome can only be by God’s planning. Most people hear the word Rett Syndrome and their minds close and their eyes look with pity, because they assume I have so little to offer.  I have been a keynote speaker at conferences and annual meetings, at schools and a chapel speaker at week long camps. My music has been recorded in a professional studio.  I have people seeking my guidance for many challenges related to Rett Syndrome.  I am a writer, a poet and I have been on TV many times.  I don’t say any of this to brag.  I feel so fortunate!  I read these words and feel like I am part of a miracle!!  We have not tried to create a life for me that is visible in our community, but it has happened!  My Mom and Gregg have not made me visible.  My words have made me visible.  My story has given people insights into Rett Syndrome and only I can tell that story.  My parents have their own story to tell, but I am the only one who can offer what it is like to be me.  My Mom has done so little to make any of these things happen!  What I mean by that, is these things have been offered to us.  People call us for interviews and speaking engagements and research projects.  We haven’t done any of it.  It’s what God has given me to do with my life, and I say YES when I know it’s right.  My family always has me make the decision about whether I feel it is the right thing to do.

Today I feel so much gratitude.  I sit here in the hospital with Mom trying to get my new wheelchair ready for me.  We started getting my new chair in May of 2010.  Today is the first time I sat in it!!  It will be a while before it is done.  We have been here in the hospital since 8:30 this morning and hope to leave by 3.  It is one of hundreds of appointments we spend our time doing, but I can say this, I have said so many prayers during the times we have waited and driven somewhere.  I try to pray for everyone I meet.  I feel it’s the best thing I can offer.  I send up prayers today for my Rett friends who need so much support in order to live.

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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