A Morning with My Beau

Beau was so sweet to me today

It’s been a frustrating week.  I have a lot of thoughts and feelings running through my mind.  It seems that when that happens my body can’t handle it very well.  I end up feeling so irritated and agitated.  I am holding my breath and hyperventilating a lot this week.  I am sorry for the way I feel, a lot.  I don’t want to hurt myself or anyone else.  It’s so painful to have so many emotions and have so little that I can do with them.  I am doing my therapeutic listening, my joint compression, my calming CD’s, but my body seems to do what it wants.

If you could imagine having some very difficult situations in your life:  Imagine they are emotions that are related to relationships that you want to be different. How do you handle them?  Do you call your friends?  Do you scream? Do you cry?  Do you talk to the person?  Do you run or walk?  Do you eat a bunch of food?  Does it help?  Do you work hard or paint or draw?  I have tried to imagine what that would be like because I can’t do any of those things.  My life has been full of frustrations lately and when that happens my body is not my friend.  I fiddle more, I chew more, I grab things, I have trouble swallowing.  I feel exhausted, I feel overwhelmed and agitated.  My body responds by pushing and shoving.  Sometimes, I get scared because I don’t want to hurt myself or anyone else and then I feel sad about that.

Beau stands close when I type on my keyboard

This morning I am sitting outside with Beau.  I’ve been out here listening to music.  My mom and I am sitting in the paddock with beau.  He is five years old now and he is so perfect on days like today when I am not myself, when my body doesn’t give me a break. He is calm and peaceful and stands close to be my friend.  That is why I named him Beau because he is my sweet handsome friend.  He forgives me when I push.  He just moves back and ten comes closer.  I love him so much.  I have many friends and neighbors who are so good to me.  They have helped pay for so many things that Beau needs.  I feel their love today.  I haven’t been able to cry or scream for many years so it’s hard to let go of some emotions but Beau is making it easier today.

Love, Karly

My Mom brought my laptop to the barn

Beau wants to see what's happening

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7 Responses so far »

  1. 1

    di said,

    Hi Karly,

    I am really feeling your emotions in this post. The frustration, the longing for something to be different. The angst, if only it would change and promise a hoped for outcome?!?

    Your words: “Imagine they are emotions that are related to relationships that you want to be different. How do you handle them? Do you call your friends? Do you scream? Do you cry? Do you talk to the person? Do you run or walk? Do you eat a bunch of food? Does it help? Do you work hard or paint or draw? I have tried to imagine what that would be like because I can’t do any of those things. ”

    These really struck me. I try to imagine how it must feel to not be able to express yourself the way you want to. I have followed your blog and listened to your heart and heard the love and deep compassion and utterly beautiful soul that is in you. I just want to say that sometimes those frustrations you feel related to realtionships – even if you “could” do all those things you mention, the reality is that sometimes even if you could, you can’t. You know? They won’t listen. They might not care as much as you thought they did. It sucks. It is hard. I think you have bumped into something we all do, no matter what, and that is something that could make one cynical and protective.

    Beau is such a gift, isn’t he? I am glad you are feeling that deep love you share – it is rarer than you think. I have said before, and can’t help but say it again – the love that you and your mom and Greg and sister share here, it is eternal. It goes beyond these temporary entrapments of our earthly relationships and earthly bodies.

    I just want to say that you continue to be an inspiration and a beautiful light in this world. Keep shining, sister.

    • 2

      spiritdances said,

      I want to thank you for your kind message Di. You are so sweet to leave me a message. This week has been really hard. I turned 25 last Sunday. It’s been a long difficult struggle for 25 years, but I have been confident that there is a purpose that can come from this. I am free most days. I got from your message that even if I was free to do what the average person can do with their challenges it might not make it better. I’m trying to find comfort because I am a loving person and I don’t want my heart to close. God has a plan for everyones life including mine. I don’t believe He created me to have Rett, but He sure is trying to help others with my story. Thanks again for writing and encouraging me.
      Love, Karly

  2. 3

    di said,

    Hi Karly,

    Happy belated Birthday! You are so gracious and thoughtful, I am so glad my words were an encouragement. Your long difficult struggle might bring someone less spirited and resilient to despair, I cannot express how much strength and beauty I see in you and the expanse of your open heart is a testimony to love. As my friend (and your Mom’s friend) Marcell says, “save a dance for me on the River of Life!” These physical and relational heartaches don’t have the last word. But I’m glad you got what I was saying. I have a relationship or two that even after doing all I can, as much as it depends on me, as Scripture says, there is no restoration or reconciliation….yet. It is so difficult when you just feel stuck and unable to reach another person in love. “Throughout Jesus’ ministry he demonstrated that the simplest acts of love and friendship could reach the most hardened souls and transform them. You cannot hope to give to others what you have not received from God himself. One anothering begins on the inside.” Wayne Jacobsen-Authentic Relationships

    So, take double comfort, my friend – knowing that you are receiving that filling deep inside from God and are able to give to others. And pray that it would be so for those who are mistreating you. Forgive them Father for they know not what they do. Fill Karly’s heart with the comfort only you can give, Lord, that she will always be as open and freeflowing in your love as you desire, and hold her heart in your hands.

    Peace, be still, and know…you are loved, you are loving, you are blessed, and you are a blessing!!

    Love,
    di

  3. 4

    Brenda Tuma said,

    Hi Karly,

    What a blessing it is that you have Beau to help calm you during these difficult times. Most of us certainly do take for granted the many opportunities that we have for dealing with our disapointments and frustrations. Sometimes we choose to engage in activities that may bring temporary relief, but in the long-run only add to our struggles.

    Thank you for reminding me that there are much more healthier activities, behaviors and attitudes that I can engage in when struggling with difficult situations. Perhaps spending too little time practicing the presence of God, avoiding unpleasant responsibilitiies, exercising and eating healthy foods may be contributing to my negative emotions.

    I hope that you experience much peace today and that you will be protected from further disappointments.

    Peace and love,

    Brenda

  4. 5

    Audrey (Moe) Ekman said,

    Karly,
    I found your blog again … listened to your music on the video again … the one that FOX news put out last April. I am very impressed with the person you are!!! Karly, many people have way more beauty inside themselves than others ever see … in fact many of us never really get in touch with who we are deep within. I am proud of you that you have found a way to share who you really are! It is beautiful! But more than that, I am proud of your MOM!!!! I remember her from when she was just a young girl! Lois, you are wonderful to have made such a connection to Karly! This journey of life, with all it’s challenges have brought out such wonderful things in you, too!!! I remember when we use to come over to your house … you were the middle girl in your family and I in mine … I can’t remember any of your siblings names … but I never forgot you! Audrey

  5. 6

    Cam said,

    Hey Karly,

    I just wanted to say thank you again for sharing your story/life with those around you. Your honesty about all the struggles you encounter daily inspire me to keep pushing through the struggles in my life because I am reminded by you that God’s blessings far outweigh any hardship we might face on this side of heaven. Thank you again for the CD and your inspirational words you shared with me last month. I am fighting to “stay awake.” It is a daily decision and choice to live in the knowledge of God’s Presence and purposes in my life. I hope you have a blessed day despite the adversity you may have to deal with today. God’s strenght in your life is amazing. It gives me hope that God can be that strong in my life as well if I will let Him.

    God bless,
    Love, your brother in Christ

  6. 7

    Sandy said,

    Animals, especially horses seem to be very therapeutic for people. They seem to understand without judging….I cannot tell you how many times my horses have heard all my problems, even though they don’t understand english, and each time they manage to give me the comfort I need. I wish everyone could be as lucky as you and me to have such amazing equine friends.


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