Comments for Inspired By Love http://spiritdances.wordpress.com Spirit Dances Weblog Fri, 13 Nov 2009 03:34:39 +0000 http://wordpress.com/ hourly 1 Comment on A Life with Purpose by Joni White http://spiritdances.wordpress.com/2009/07/25/a-life-with-purpose/#comment-454 Joni White Fri, 13 Nov 2009 03:34:39 +0000 http://spiritdances.wordpress.com/?p=569#comment-454 Karly What a beautiful word picture you can paint. I praise God for this gift he has graced you with. A voice. Each person deserves the right to communicate. I have had my own journey with my daughter Calista Grace, who is 11 yrs old now. It is like she has emerged and is showing off that she knows things in the last year! She can identify colors, money, numbers and I believe there is much more stored in her mind that we have yet to see! She has done what not many thought people thought possible...she has been absorbing and learning, experiencing her own feelings and dealing with so much on the inside that she cannot yet communicate. Your words are so sweet and precious to me...I It is hard to completely describe how I feel right now. I am fight back tears as I read your words. I am looking forward to hearing more from you. God has a plan that will knock your socks off...he is not done with you Girl! He is equipping you to speak out & teach. You are already doing it as you write. You simply allow Jesus to be seen in you. Others may think your vessel is cracked, broken, defective, and of no use. I say the cracks allow Jesus' light to be revealed to others. As we have learned with Calista...I say we look at what our Master, Our Potter has created on his potter's wheel and and we see God all over your vessel Karly, radiating out to all around you! Many Blessings to You My Sister in Christ. I pray for the day our paths will cross... Karly
What a beautiful word picture you can paint. I praise God for this gift he has graced you with. A voice. Each person deserves the right to communicate. I have had my own journey with my daughter Calista Grace, who is 11 yrs old now. It is like she has emerged and is showing off that she knows things in the last year! She can identify colors, money, numbers and I believe there is much more stored in her mind that we have yet to see! She has done what not many thought people thought possible…she has been absorbing and learning, experiencing her own feelings and dealing with so much on the inside that she cannot yet communicate. Your words are so sweet and precious to me…I It is hard to completely describe how I feel right now. I am fight back tears as I read your words.
I am looking forward to hearing more from you. God has a plan that will knock your socks off…he is not done with you Girl! He is equipping you to speak out & teach. You are already doing it as you write. You simply allow Jesus to be seen in you. Others may think your vessel is cracked, broken, defective, and of no use. I say the cracks allow Jesus’ light to be revealed to others. As we have learned with Calista…I say we look at what our Master, Our Potter has created on his potter’s wheel and and we see God all over your vessel Karly, radiating out to all around you! Many Blessings to You My Sister in Christ. I pray for the day our paths will cross…

]]> Comment on My Life After Graduation by Joy Thomas http://spiritdances.wordpress.com/2009/09/23/my-life-after-graduation/#comment-453 Joy Thomas Thu, 12 Nov 2009 22:41:15 +0000 http://spiritdances.wordpress.com/?p=611#comment-453 It is so good to see your blog, it is so good to know that you have a "voice" for this syndrome. My grand-daughter Trinity is only 5 right now. I wish so much that she could communicate with us. I know that what we have to offer her is not enough for her happiness, for her to be fulfilled. It brings tears to my eyes, knowing there is so much she wants and needs to say. Karly, you show a glimmer of light. Keep going with you mission! Our girls need you. We need you. I am so grateful that someone has shared your web page with me. I will in turn share it with my family and friends. It is so good to see your blog, it is so good to know that you have a “voice” for this syndrome. My grand-daughter Trinity is only 5 right now. I wish so much that she could communicate with us. I know that what we have to offer her is not enough for her happiness, for her to be fulfilled. It brings tears to my eyes, knowing there is so much she wants and needs to say. Karly, you show a glimmer of light. Keep going with you mission! Our girls need you. We need you. I am so grateful that someone has shared your web page with me. I will in turn share it with my family and friends.

]]> Comment on Peace, Contentment and Hope by Uninvoked http://spiritdances.wordpress.com/2009/11/12/peace-contentment-and-hope/#comment-452 Uninvoked Thu, 12 Nov 2009 18:40:01 +0000 http://spiritdances.wordpress.com/?p=668#comment-452 Beau looks like he's contemplating the tastiness of your shirt. My horse does that sometimes too. It's sooo cute <3 Hope Oprah does that show. Let us know what she says. Beau looks like he’s contemplating the tastiness of your shirt. My horse does that sometimes too. It’s sooo cute <3

Hope Oprah does that show. Let us know what she says.

]]> Comment on Peace, Contentment and Hope by Susan http://spiritdances.wordpress.com/2009/11/12/peace-contentment-and-hope/#comment-451 Susan Thu, 12 Nov 2009 18:22:48 +0000 http://spiritdances.wordpress.com/?p=668#comment-451 Thank you. You are beautiful! My cousin's daughter was diagnosed with Retts two years ago at age three. She is in therapy and has become a bit more verbal. She will be six in January. You are quite an inspiration for her, me and the rest of our family! The cure is around the corner. We just need some help with the bend in the road. You are thoughtful writing to Oprah for all the girls who are challenged by Retts. Oprah has people buying whatever book she likes. With influence like that, she is SURE to spread Retts education and awareness. Thanks again for all you do. -Susan Thank you. You are beautiful! My cousin’s daughter was diagnosed with Retts two years ago at age three. She is in therapy and has become a bit more verbal. She will be six in January. You are quite an inspiration for her, me and the rest of our family! The cure is around the corner. We just need some help with the bend in the road. You are thoughtful writing to Oprah for all the girls who are challenged by Retts. Oprah has people buying whatever book she likes. With influence like that, she is SURE to spread Retts education and awareness. Thanks again for all you do. -Susan

]]> Comment on My Year of Joy by spiritdances http://spiritdances.wordpress.com/2009/11/03/my-year-of-joy/#comment-450 spiritdances Thu, 12 Nov 2009 16:36:46 +0000 http://spiritdances.wordpress.com/?p=655#comment-450 Hello Darby I am so honored by your beautiful message. You are so thoughtful to let me know how my story has changed your life with Jenna. I know she is so happy that you believe in her. You are helping her believe in herself. I am sure that she will be able to communicate more easily someday. There is so much more to offer now than there was a few years ago. I hope you are able to help her express herself. But in the meantime, your love and faith in her will keep her encouraged. She will be able to show you who she is by not getting depressed and lost inside herself. Thanks for hearing my words. Love, Karly Hello Darby
I am so honored by your beautiful message. You are so thoughtful to let me know how my story has changed your life with Jenna. I know she is so happy that you believe in her. You are helping her believe in herself. I am sure that she will be able to communicate more easily someday. There is so much more to offer now than there was a few years ago. I hope you are able to help her express herself. But in the meantime, your love and faith in her will keep her encouraged. She will be able to show you who she is by not getting depressed and lost inside herself. Thanks for hearing my words.
Love, Karly

]]> Comment on My Year of Joy by Darby (Jenna's mom) http://spiritdances.wordpress.com/2009/11/03/my-year-of-joy/#comment-449 Darby (Jenna's mom) Thu, 12 Nov 2009 16:12:05 +0000 http://spiritdances.wordpress.com/?p=655#comment-449 Hello again Karly! I wrote to you a few months ago when I first found your blog. I must confess, I haven't been able to keep up with it lately. I just got laid off from my job and have surprisingly been able to find so much joy in being home again. I really missed spending time with my 4 kids. I don't know if you remember, but I have a little girl, Jenna, who will be 4 in December. She has Rett Syndrome. I think I commented on the part of your blog that talks about what you go through when you sleep and when you wake in the middle of the night. As soon as I read that part of your blog and the part about how unfair it is that people just seem to think that because you can't talk or communicate "normally" that you're less of a person mentally, I knew I had to talk with Jenna about it. That night I took her to bed, laid her down, and as she got herself comfortable I told her all about what I had read during the day and all about you. She couldn't stop smiling. I felt I needed to reassure her that we know she's incredibly bright and we know she understands everything. I also wanted her to know that we love her dearly and that we know she loves us too. I remember reading that you felt frustrated because you had difficulty letting others know how much you love them and that stuck out to me as a very important thing for me to get across to Jenna. The last few months have been great for her. She really seems like she's opening up and wanting to do new things. She loves school and has a new friend that happens to have rett syndrome that goes to her horse therapy with her. I guess I just want to tell you how greatful I am to have someone out there like you that can put your fears aside and put your emotions out there for everyone to see, to feel. It means so much to me to get that insight into what Jenna might be feeling and I think it's made me even more aware of what she needs and wants. We have whole conversations every day and when people ask me why I do that when Jenna doesn't respond, it just kind of makes me laugh because she IS responding and THEY don't get it. So Jenna and I have the last laugh. Keep up the great work Karly and know there are sooooo many people including myself and Jenna that love you and know you're a beautiful person! *hugs from all of us* Jenna and Darby Hello again Karly! I wrote to you a few months ago when I first found your blog. I must confess, I haven’t been able to keep up with it lately. I just got laid off from my job and have surprisingly been able to find so much joy in being home again. I really missed spending time with my 4 kids. I don’t know if you remember, but I have a little girl, Jenna, who will be 4 in December. She has Rett Syndrome. I think I commented on the part of your blog that talks about what you go through when you sleep and when you wake in the middle of the night. As soon as I read that part of your blog and the part about how unfair it is that people just seem to think that because you can’t talk or communicate “normally” that you’re less of a person mentally, I knew I had to talk with Jenna about it. That night I took her to bed, laid her down, and as she got herself comfortable I told her all about what I had read during the day and all about you. She couldn’t stop smiling. I felt I needed to reassure her that we know she’s incredibly bright and we know she understands everything. I also wanted her to know that we love her dearly and that we know she loves us too. I remember reading that you felt frustrated because you had difficulty letting others know how much you love them and that stuck out to me as a very important thing for me to get across to Jenna. The last few months have been great for her. She really seems like she’s opening up and wanting to do new things. She loves school and has a new friend that happens to have rett syndrome that goes to her horse therapy with her. I guess I just want to tell you how greatful I am to have someone out there like you that can put your fears aside and put your emotions out there for everyone to see, to feel. It means so much to me to get that insight into what Jenna might be feeling and I think it’s made me even more aware of what she needs and wants. We have whole conversations every day and when people ask me why I do that when Jenna doesn’t respond, it just kind of makes me laugh because she IS responding and THEY don’t get it. So Jenna and I have the last laugh. Keep up the great work Karly and know there are sooooo many people including myself and Jenna that love you and know you’re a beautiful person! *hugs from all of us*

Jenna and Darby

]]> Comment on My View from My Eyes by Jonathan Hosack http://spiritdances.wordpress.com/2009/08/23/my-view-from-my-eyes/#comment-448 Jonathan Hosack Thu, 12 Nov 2009 14:04:38 +0000 http://spiritdances.wordpress.com/?p=584#comment-448 Thank you, Karly, for letting us in on you perspective. Little things like how you see - it really makes sense now! It really helps me understand Calista! God's really given you an awesome gift as a writer! Keep it up! Thank you, Karly, for letting us in on you perspective. Little things like how you see – it really makes sense now! It really helps me understand Calista! God’s really given you an awesome gift as a writer! Keep it up!

]]> Comment on Q and A by Jen Dalton http://spiritdances.wordpress.com/q-and-a/#comment-447 Jen Dalton Thu, 12 Nov 2009 11:42:05 +0000 http://spiritdances.wordpress.com/?page_id=57#comment-447 Dear Karly, I have been "quietly" reading your blog for some time now. My daughter Emma is 3 1/2 and was diagnosed with Rett in September 2008. I am on the Mother's Advisory Board of Girl Power 2 cure with Ingrid. When I read your words I can honestly say I understand. Emma is so smart and yet, we live in a world where people can be so ignorant. They don't understand that she is trapped in a body that doesn't work the way she wants it to. She understands everything going on around her and has an amazing sense of humor. Most of the time people prefer to see the things she is unable to do at this time. Notice I didn't say "can't". We don't believe in the word can't. In October we hosted a "Rockin For Rett" benefit concert and auction. We raised a bunch of money to help find our cure. We KNOW that cure is out there and please know we are going to get it. Rett Families are amazing.. I know you know that! Please continue your amazing work. Thank you for helping everyone understand Rett Syndrome. Jen Dalton Mom to Emma 3, RTT Dear Karly,

I have been “quietly” reading your blog for some time now. My daughter Emma is 3 1/2 and was diagnosed with Rett in September 2008. I am on the Mother’s Advisory Board of Girl Power 2 cure with Ingrid.

When I read your words I can honestly say I understand. Emma is so smart and yet, we live in a world where people can be so ignorant. They don’t understand that she is trapped in a body that doesn’t work the way she wants it to. She understands everything going on around her and has an amazing sense of humor. Most of the time people prefer to see the things she is unable to do at this time. Notice I didn’t say “can’t”. We don’t believe in the word can’t.

In October we hosted a “Rockin For Rett” benefit concert and auction. We raised a bunch of money to help find our cure. We KNOW that cure is out there and please know we are going to get it. Rett Families are amazing.. I know you know that!

Please continue your amazing work. Thank you for helping everyone understand Rett Syndrome.

Jen Dalton
Mom to Emma 3, RTT

]]> Comment on About Me by A http://spiritdances.wordpress.com/about-me/#comment-446 A Mon, 09 Nov 2009 07:48:15 +0000 http://spiritdances.wordpress.com/?page_id=11#comment-446 I found your blog off of Carlys voice. I'm so glad you are blogging, keep blogging, get your words out there, show the world there is more then meets the eye. I have autism and siezures, I use a lot of sign language to communicate myself, and have mini PECS books, but typing is always my favorite. I think this world and everybody in it, needs to know, verbal communication doesn't make up how intellegent a person is. Just by reading your blog I can tell how intellegent you are, god bless! Never give up, keep fighting, writing, making music, and live your life to the fullest! I'll defintely be checking back on your blog! I know a couple people with rhetts, one little girl in particular who also is blind, i'll going to give her mother your blog, i hope that is okay? either way hope you have a wonderful week! I found your blog off of Carlys voice. I’m so glad you are blogging, keep blogging, get your words out there, show the world there is more then meets the eye. I have autism and siezures, I use a lot of sign language to communicate myself, and have mini PECS books, but typing is always my favorite. I think this world and everybody in it, needs to know, verbal communication doesn’t make up how intellegent a person is. Just by reading your blog I can tell how intellegent you are, god bless! Never give up, keep fighting, writing, making music, and live your life to the fullest! I’ll defintely be checking back on your blog! I know a couple people with rhetts, one little girl in particular who also is blind, i’ll going to give her mother your blog, i hope that is okay? either way hope you have a wonderful week!

]]> Comment on Having Big Dreams by Sandy http://spiritdances.wordpress.com/2009/11/06/having-big-dreams/#comment-445 Sandy Sat, 07 Nov 2009 22:56:25 +0000 http://spiritdances.wordpress.com/?p=662#comment-445 These writings are just more proof that you have so much beauty inside just waiting to come out!! Glad to see you sharing it. These writings are just more proof that you have so much beauty inside just waiting to come out!! Glad to see you sharing it.

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