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.


5 Responses so far »

  1. 1

    Angieqq said,

    Peace be with you Karly. Thank you for your beautiful post today. I hope you have some easier days ahead. We love you.

  2. 2

    pinkroselady60 said,

    Hi Karly
    I LOVED your blog today.

    You have found the secret to life that so many others spend their whole life chasing …and die before they find it. You are a wise woman who has so much insight to share. The hope, peace and love you have for life brings you the courage and contentment to wake up each morning, despite the challenges you know are waiting for you. But you persevere for the next challenge, excitement, funny experience and warm hug that awaits you. I hope there is never a day that goes by where you don’t experience love from others, hope for tomorrow and the peace that you get knowing that “Heaven is Real.” (By the way have you read this book with your Mom yet? It is so great!) Have a wonderful day Karly.
    Your friend, Ann Strom

  3. 3

    Phyllis McCann said,

    We have a granddaughter, Brianna, who has Rhett Syndrome also. It would be so wonderful if she could be able to tell how she feels and to be able to communitcate the way you have. You are an inspiration and a blessing just to be able to read your thoughts and about your life. Your outlook is great! God bless you and your family. Phyllis McCann

  4. 4

    Barbara McAfee said,

    My Sweet Friend,
    I was so moved by your words today! I haven’t visited your blog for some time and will be continuing to read back through those lovely poems you posted. I miss you and hope to get out for a visit in the next few weeks!

    Meanwhile, I am holding you in love and song.

    Big hugs,

  5. 5

    Karly, Thanks so much for your encouraging words. You truly are an inspiration to me. I also attend Woodland Hills. Today when I was leaving the Heroes Gate area the 1st Service was just ending. I saw your picture on the screen and Jeff talking and I realized who he was talking about. I, unfortunately, have not heard the sermon yet, but I came home and read your blog to confirm that Jeff was talking about you (I interviewed with your mom a few months ago to possibly work with you.) Anyway, I am looking forward to hearing the sermon. I hope you continue to find peace and strength on your journey. Never forget how much you are changing lives every day! I will stop by and say hi if I ever see you at church. Blessings ~

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