Archive for December, 2010

Hearing From Others

This tree is outside our living room window

This tree is outside our living room window

Winter in Minnesota

I have had an awesome week!  I heard from some of my best friends.  I got emails and cards and phone calls from people who I love and don’t often see.  I even Skypped with Leah and my family on Christmas day. We can see each other really good and I love that.  I won’t be able to go to her house because it is too far away, and I can’t travel very far without getting exhausted.  So I am glad I can see her on my computer.

I wanted to tell you that people who are non-verbal like I am rely so much on others to stay connected with us.  It seems like an obvious thing but I think other people underestimate how much much their attempts at communicating with those of us who are non-verbal, mean to us.  I am not able to pick up the phone and call and if my friends call me I can’t talk back.  I think that makes some people very uncomfortable.  But I want to have you know that any effort made to be in contact by mail, phone calls or a visit mean so much to me and I know to many of my friends in this world who are unable to talk.  We don’t care what you say but how you say it matters.  I hear people talk to those who are non-verbal like they are infants.  When that happens to me I am so frustrated.  What harm can come from assuming people who are not talking understand everything you are saying? I can’t think of anyone that would be offended or hurt by that.  Assume intelligence, it always gives honor and respect.

I was so happy that my friend and CD producer Barbara came to visit me yesterday.  We had a great comfortable time together and I enjoy hearing from her so much.  I was interested in her stories from this past year.  I love how she helped change my life by making my music ready for others to hear.

Barbara McAfee helped my voice be heard.

My friend Bethany who lives in Utah sent me a long email helping me understand what she is doing now.  I feel so much love in my heart for her.

It has been a beautiful end to this very wonderful and difficult year, to have so much kindness in my life.  My neighbors Sandy and Missy have blessed me so much because they believe in me and they talk to me like I am capable.  I hear from them about how much I help them understand and I feel so happy.

Love, Karly

Beau likes to eat the grass around this tree in the summer



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A Little Tree

My gift from Missy.

We had a great Christmas this year.  I was feeling great and able to focus on others and not on Rett Syndrome.  Our family came to our house this year.  There were a few people missing, but we had 13 for a wonderful day.

I was surprised in the afternoon with a beautiful gift from our friend and neighbor Missy.  She saw a little tree in the floral shop and felt like she was supposed to buy it, but didn’t know who it would be given to.  It was on Christmas morning that she read my blog, “Christmas Love”.  She was looking at the little tree in the pot when she realized it was meant for me.  She wrote me a beautiful letter and delivered this tree to our house.  I wrote “Christmas Love” christmas morning so it could be read to my family to share my heart with them.  I asked my mom to read Missy’s letter to my family and everyone felt so much love.

Her gift wasn’t expected and the message I got from Missy, having the courage to come over that day, was if we listen to the little things God asks us to do and not ignore them, those things become big things.  They grow just like the little tree.  I’m going to keep the tree close this year for the days that I forget that the little things I am able to do are valuable and they are important in this world.  That’s all God ever asks of us.  Our best.

With Love,


When Beau goes out for exercise our cats come too. It makes us smile.


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Christmas Love

Our tree is so beautiful. I often stand by it in my stander and listen to my books on cd.

I was praying one morning and I asked God who He knew that I could help.  I thought He would put someone in my mind I knew who needed encouragement or a visit.  I was surprised that He put a lot of people in my mind who needed my help. I realized that I have ways I can support others.  I am not just someone who needs help, but also someone who can give help.

I have lived with my Mom all my life. She has always been kind and generous to others.  I saw how that affected people, so when I asked God what I could do, my Mom was very pleased to help me.  We talked about some people in this world who have so little, and are so lost and without hope.

This year I decided for Christmas to help them because God opened my eyes.  I want them to stay open.  I know we have a lot of food.  We have friends and neighbors who have little, so we decided to bring food to a food shelf as a family.

I live in a country where I have good medical care if I need it.  There are people with disabilities all over the world who have nothing and are mistreated, or treated like they don’t have value.

My Mom and I heard of a group that is helping children who are born with cleft lip and palates. It’s Operation Smile.  These children look great after their surgery and they have such grateful parents.  They have a chance to be normal with a simple surgery. They need our help to do that.  Gregg, Mom and I are going to donate to Operation Smile this year for Christmas.

I was surprised yesterday by our friends Dave and Margie who felt God told them to give me a gift of money.  I was shocked because they had $100.00 in the card.   They are not wealthy.  I knew right away that Operation Smile would be blessed by this gift and I feel so good to give it to them.

I hope you will think of someone who needs your love and support today.

We have a lot of blessings.  Everyone can help someone.

With much love,


Scarlett kneads Beau's neck. She has been on his back a lot this week.


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Feeling Very Fortunate

The days are so dark right now, but the sunrises are so beautiful out my bedroom window this time of year.

I have been so glad for some things that have happened this year.  I was talking this morning with my Mom and Gregg and I asked them to remind me of all the great things that are happening in my life.  I thought it might be helpful if I shared some of them on my blogpage.

I am eager to have you know that I decided to share these things to encourage you to believe better things for girls with Rett Syndrome and for everyone.  I believe with all my heart that every person has something important to share with this world.  For some it might be more public, and for others it will be their family or close friends or caregivers, but it doesn’t matter how big or small it is, we all deserve the freedom to become who we were created to be.

This summer with Beau.

I have heard from so many people this year, that my story, my life, my blog has helped them.  That my purpose on this earth to share my life’s story has changed their view of girls with Rett and others with disabilities.  That makes my heart content, because I didn’t know when I started writing on my blog, that God would give me so many opportunities to make lives better.   I know that everyday I wake up and do what I can that day, is a great day.  I have had many hard days this year.   I would guess that more than half of them have had great struggles.  Even today, as I write this I am struggling with high energy and breatholding, but my heart is very content and that’s what I count on.

I know that if everyone were to be free to explore themselves and find a way to express it, this world would look different than it does today.

This year has been a miracle for me and I never want to forget how great it has been.  I don’t even know where to start, but I will start with meeting Barbara McAfee a year ago.  She is my friend who believed that my songs were beautiful and they could be created into a CD that would be something others would want to hear.  She gave my heart joy because she listened and she introduced me to some amazing people who helped make my dream come true.  I have a beautiful CD with the songs that have been given to me by God.  My music therapist, Karen Bohnert, and I spent many hundreds of hours over 10 years getting the songs just right, so that what you hear and what I hear in my heart are the same.  I feel so glad for that chance.  Every person who was involved gave me a great gift.  My CD Release Party helped me feel respected and cared about by my family and friends.  I honestly never dreamed that my songs would be heard by others.  That they would just be for me and my family, but God helped make that happen.  My sister Leah’s viola and voice recording added even more.  I love her so much and to this day when I hear my CD, my heart smiles.

Barbara McAfee, Karen Bohnert and I on our first meeting

In the studio on recording days with Leah, Mom, Gregg and Karen Bohnert

Gregory Thiesen played my music, Matthew owns the studio and Barbara

Matthew set up the microphone so Leah could read my poems

My Cd release party with Amy, Mom and Leah

jeff Dunn was my photographer and friend. Elizabeth and her mom were so excited for me.

I have had some requests to speak to audiences this year.  The largest group was over 300 people.  I felt so excited and scared that day, but I felt blessed the most.  I couldn’t have given my message to a better group of people.  They were so respectful and kind to me.

ARC MN Annual Meeting

I wrote my message and had my Mom read it. Amy came on the stage with us.

My music was played and our story told by Karen at an art exhibit opening

I was asked to share my story at a Women's Golf Tournament that raised money for ARC. My Mom read my message

I was interviewed by Maury Glover for our news on TV.  Over 1000 people found my blog that day.  He made my story so true and honest, but not full of pity, and I respect that.

Maury Glover came to our house for 3 hours

We went to Boutwells Landing so they could film me while I walked

I became the chapel speaker again for the camp in Iowa.  I wrote messages for the four days of camp.  Dave and Margie have believed in me and asked me to do something I didn’t think I could.  But God knew better.  They opened the door and asked me to share my thoughts with an audience at camp.  This year was even better than last because my Mom and Gregg were included in sharing my messages.  It was a powerful time for all of us.

The room at Special Touch Camp in Iowa where my messages were shared.

My great friends Emily and Ashley went to camp with us again this year.

I was contacted by a researcher in London, named Sandrine Geranto, who was so excited to hear of me because she is doing research on Rett Syndrome and pain.  It seems that many people believe that girls with Rett Syndrome don’t feel pain the same as typical people.  She read a lot of my blog and contacted me because she was excited to talk with someone who could communicate and had Rett Syndrome.  We have been talking through email and she has developed a questionnaire for people who live in the UK to fill out related to pain.  She has used a lot of my information to help create her questions.  I am so excited because it helps me to know that I can help other girls who cannot yet communicate.  I feel that it is one of the gifts that I can give others.  I am still hopeful because my friend Elizabeth who also has Rett Syndrome has decided to help with these questions that Sandrine is creating because we are only a few of the women who can communicate.  We don’t all have great courage to put our thoughts out where others can see them.  My friend Elizabeth and I are loving to help and this gives us a chance to do that.

I was excited to see that our church was having a women’s study group.  I have been going for a few months with my Mom.  We are working on a huge study book.  It has been a great experience even when I am struggling.  This group of women have been very kind and encouraging to me.  They respect my answers too and I feel like I belong there.  One of the women in my group is part of a women’s group called Women of Today.  They have many thousands of women who belong to it.  They asked if they could have Rett Syndrome be one of their focuses this next year.  My Mom contacted Ingrid Harding and Kelly Butler of Girlpower2cure, to see if they would like to be involved in providing information, support and they could maybe receive some money from this women’s group.  It’s hard for me to understand it yet, but it sounds like a plan that might work!

Ingrid Harding came to my house last year. She has helped so many Rett families.

Barbara McAfee also nominated me for the Ann Bancroft Dream Maker Award again.  I read her letter to the committee yesterday with my parents and it made us feel glad all over again for the great friends that I have and how included I am in this world.  I don’t want to forget these things, and I feel very fortunate today.  I hope you find your dream this year too.

Here is some information about the award: Ann Bancroft is one of the world’s preeminent polar explorers and an internationally recognized leader who is dedicated to inspiring women and girls around the world to unleash the power of their dreams.

Love, Karly



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Big Snow

It has been a winter of lots of snowstorms!  We  had over 20” of snow and lots of wind this past weekend, so it is piled very deep on our patio and on our deck.

Our deck after it snowed on Saturday

Our deck has lots of flowers in the summer. This is how it looks today.

Scarlett watching the bird feeder in the summer on our deck


Beau, my horse, is not able to walk around because it is too deep for him.  He usually loves to roll in snow.  It is so deep he can’t touch the ground with his feet.

In the summer I stand on the patio in my stander a lot.  I love it out there but it is buried now.  Here are some pictures.

My friend Heidi is traveling in Africa. This was her last day with me last March

During the storm this past Saturday

This is how it looks today.

I think the snow is very beautiful but it’s hard on me to not be able to go outside for many months.   My wheelchair gets stuck in the snow.  I can’t stay warm because I chew on my bandanas and they freeze before we can get inside.  I love being outdoors, but Minnesota isn’t good for me in the winter.

This is the flowerpot I gave my Mom for Mother's Day.

This is the flowerpot now

Love, Karly

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Fats Make me Happy

My dear friend Norma made this head wrap for me.

I love it!

I have been feeling really good the past few weeks.  I wanted to share this because it might be connected with something we are doing different for me.  We are working with a woman named Darlene Kvist who specializes in diets for people with neurological disorders.  We changed my diet a lot a few months ago and I felt better right away.  I don’t eat any gluten or dairy.  I haven’t done that for many years and it has helped me so much, but I never wanted to eat meat.  It made me feel bad for the animals and it made me feel sick in my stomach, so I was eating mostly rice and beans and vegetables and some fruits.

In the summer we started talking with Diane and she told me that without meat in my diet, my diet would have trouble because I couldn’t get the right…my Mom says…(Amino Acids.) Without the right amino acids my brain wouldn’t function right, so she really encouraged me to eat meat everyday.  I have two different kinds everyday now and it is usually organic, so it doesn’t have hormones in it.  I now eat four meals each day and I don’t eat much rice.  She said it was too many carbs.  I felt better right away after we changed to this diet.  The other thing she said was to increase my fats a lot…a lot!  I now have a lot of fats in my diet.  I will have my Mom share what I am taking, but I can say that I feel so much calmer and more content.

**Here’s what Karly is now taking daily:

DHA 200: 6  ea day – 200 mg / gel cap=1200 mg / day

Omega -3 1000:  2 ea day

Org Coconut oil: 6 tsps each day

O Olive Oil: 4 tsps. each day

Butter: 4 tsps daily

Instead of Brown Rice Karly is eating more Hand Harvested Wild Rice

(Lois-Karly’s Mom)

Darlene told me that most people can reduce their anxiety and depression by getting the right kinds of fats in the right amount in their bodies everyday.  We made some changes about one month ago, we added more fats. It has made a huge difference.  I wanted to share this because it’s been a few weeks now that we have added the extra fats and I feel like a different person.  I hope this helps other girls with Rett.

Love, Karly

Beau has a yoga stretch he does when he wakes from a nap. It's so cute! That's Scarlett on his back.


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Giving To Others

One of my favorite places, by a lake near our home.


I am so excited to share something today.  Yesterday, my Mom, Gregg and our friend Emily, were talking about Christmas and gifts and how stressful it is to get something  just right for everyone.  We also talked about how we don’t need anything, and how blessed we are.

When my sister Leah called from Ohio, we discussed instead of gifts, giving money to others who are in great need.  We made a list of places that help animals, people who are hungry, people who need clean water to drink, people who help children in parts of the world where they are born with deformities, and can’t get help. We decided this year, to start giving money to some of these groups instead of gifts to each other.  I feel so happy about it because I love helping people.  I imagine that many other Rett girls feel like I do, we are often seen as people in great need and get so much from others, but we rarely are given the chance to help someone else.  I feel so happy to not be the one in the greatest need. I have all the clothes I need.  I have a nice home.  I have food.  I have all the warmth I need.  I have a van that works great, so I can go places easily.  I am safe.  Our family is healthy.  I have the therapies I need.

We live in a place where I can see the sunrise from my bedroom window. I am always up for it! Sept 2010


I know that everyone is not so fortunate.  I am content.  I am eager to see what we can do as a family to give love and help to others. This is my Christmas wish.

Our pastor is giving us messages that give us another way to look at Christmas.  I love this message (Celebrating a Subversive King) If you want to hear his message, this is where you go:

Love, Karly

Beau's favorite kitty is Scarlett. They love being together.


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A Season of Peace

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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