Karly’s precious little hands. She was so determined to share her thoughts with us, then eventually the world after we found a way for her to communicate at age 10.
As Karly’s health declined, she asked me to post this poem she wrote, after she passed. Her beautiful heart and spirit continued to guide us right to the end of her days. She leaves behind an enormous hole in our hearts and lives.
Lois Swope-Karly’s Mom
The music of heaven fills my heart with longings I cannot ignore
The time spent on earth full of its possibilities,
becomes a distant memory
compared to what I see through weary eyes
I leave my love behind to offer as a beacon
for those who wonder if it’s true,
I have seen, I have heard, I am certain
It’s a small step for me now on this path
I hear the tears of many who have loved me so well.
Love another like you loved me,
and this world will be a better place.
I see the face of God
I see my new beginning and I am full of joy
I will watch for you, please come.
February 17, 2012
Karly and her Beau 2011
The hope in every heart is peace
giving freedom to dreams
Inspiration freely given to those who see
To those who have listening hearts
We are not alone here, living lives without purpose
in homes without contentment
living in quiet solitude
We are not alone
We are part of the divine.
April 22, 2011
I want to share my song: When I Get To See You: 08 Track 08
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
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:
Beau's favorite kitty is Scarlett. They love being together.
I have been writing today for an event that is coming up on May 22nd. I have been asked to be the speaker for an annual meeting for ARC. I am excited about it. My message is short, but I hope that it helps people see people who live with visible disabilities in a new way. I feel so honored to be asked. It is inspiring to me to know I can help others.
I am finishing my talk with this poem that I wrote.
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.
I have been very tired this week because I had a bunch of seizures to recover from, but I feel great today.
Here is a picture my Mom took of my horse and his favorite kitty, Scarlett. She rides him in the mornings. They love each other. It’s fun to watch her play with him.
Scarlett riding Beau
I have written a lot lately about the things that are happening in my life. I can’t imagine it being any better than it is right now. I have had so many great things happen to me in the last few weeks. I have had contact from a local TV newsperson. He wants to do a story on me this week. I asked him some questions on the phone. I asked him what he is going to do with my story. I wanted to tell him that the most important thing to me is that people understand that those of us without a voice that can be heard with people’s ears, may be intelligent and aware of everything going on in our presence and around us.
I have been so fortunate that I have people around me who have given me a chance to be who I am and not get stuck on my limitations. It has freed me. It has opened up my heart and my health challenges have gone. I don’t need to tell you how hard some of my days are, because it will always be that way with Rett Syndrome, but if the purpose of my life is not just to struggle with those challenges, it gives me meaning. It allows me to have hope. It allows me to be seen for my talents, not just my struggles. I have heard that the Rett research group from our state will be interviewing me this weekend too. They are going to share my CD story with the Rett families in our state. I hope that other families can help their girls find their purpose in this life. It is not an easy life. It takes a lot of work. Sometimes it is really scary, but I hope that my story can encourage others to believe in their girls. It took my Mom and I a long time to find a way for me to communicate. I was ten years old before I typed my first word. It wasn’t fast or easy for me, but it opened up the possibility that I was intelligent, and I could eventually share more.
It is hard sometimes for me to become visible when my body and movements draw attention to me. It makes others uncomfortable. They don’t know what to do with someone who is turning blue! It makes them think I am dying! It is hard when I chew on my bandanas because it makes me appear like I am a child. But, that’s just my body, it’s not my mind. I was asked by Jeff Dunn if I would be willing to help him with a training video he was working on for photographers and people interested in hiring him for their photos. I think it was an honor that he wanted to interview me. Unfortunately when they came with their cameras it was a day when I was hyperventilating constantly. It was frustrating for me but I can’t control it. He said he wanted to come anyway because he wants to deal with real life, not false life. I told him during the interview that I was so glad that he saw me! That he made me look beautiful. That he wasn’t uncomfortable with my movements or my drool. It was wonderful to become visible. That’s what he made me. I became visible in a beautiful photograph.
I will be getting my CD in the next 10 days!! It is so beautiful. I am so happy with the way it sounds. I have a chance to help my Rett friends I my music. I want this world to know we are here. We are here and we are intelligent. I send you courage today.
It was a snowy day. We all wore our matching shirts.
I went to Wild Sound Studio on Monday with my Mom and Gregg to help with the mixing; I have never done anything like this before, so it was an interesting time. I have learned so much about how to record songs. I haven’t been able to stop thinking about it, because it has been a gift to me. The people who have been involved in helping my music get recorded have been so kind and thoughtful and respectful. Our photographer, Jeff Dunn, was such a gentleman and he is so eager to help us. I love his photographs of me. Barbara McAfee helped me find my voice in my music by making sure I was heard throughout this process.
We all wore our Wild Sound Studio tshirts that day.
Gregg helped me walk around the studio. I get so sore from sitting in my wheelchair for a long time.
I listened carefully with Barbara and Matthew and decided what I liked best.
It has been so fun to imagine people hearing my music. For those who have heard it so far it has been a wonderful experience. I don’t know what will happen next, but I know that my CD will be ready very soon. It has been a busy two weeks and I’m excited about sharing it with you. My life will be changed because I am heard in a new way.
I was at the Art St. Croix meeting this morning. I am on the advisory committee. They are going to have my CD presented at the art gallery exhibit. I think it will be done by then and it will be fun to share it with our community.