A Letter to Myself

I have been taking time to relax this week because I have been sick. I feel better and I am eager to share something today.  In times when I am quiet, I think of things to write about.  Today I feel up for writing.  

11 years old

I have many memories of days when I couldn’t write, before I could communicate,  before I could answer yes and no questions, not knowing if I would ever be able to do that.  Today I am writing a message to myself, a message I would have wanted to hear when I was young and had no words to share with others.  No hope that it would ever be different.  Today I can write this letter.  This is what I needed to hear.

Me at 9 years with Roxanne, one of my favorite people

My Dear Little Karly,

You see and can’t respond. You hear and cannot speak. You dream and cannot make those dreams come true.  Your hope is long gone that these things will be yours.  It is your life that is different than everyone around you.   You do not get the same treatment in school that other students get.   You hear people speaking to you like you are an infant.  You cannot respond with something suitable to that kind of disrespect.  There seems to be so little that is right for you.  It seems so hopeless right now.  Your life seems to hard to bear.  It’s not the life you would have loved to live.  There has been little to ease your worried mind.  

It will not always be this way.   You will have many things happen to you that you would not have chosen, but your life will be different than it is today.  Rett Syndrome will be discovered and there will be answers for what happened to you.  Do NOT fear your life. Do not fear what will happen.  You will be loved in ways you couldn’t have imagined.  You will be respected for what you can do, not pitied for what you are unable to do.  You will have a voice.  Your words will matter to many people.  

Remember these days long enough to write down your experiences, then let them go.  They are a heavy burden on your heart.  But other families need to know what you have lived through.  You will always have a place in this world.  Even if it looks hopeless now, your life will make a difference and you will have opportunities to contribute to this world.  

You will have joy.  You will find peace when you are outdoors.  You will discover a love of water and how much it will soothe you to spend time at the lake and watch the river boats on the St Croix.  You have always loved music and heard many songs played in your home, but what you don’t know now is that you will compose music.  You will have a voice through your music that others can hear with their ears.  You will not know how many people will be blessed by your songs.  But, most of all, you will be loved by God.  You will have a blessed life.  Not only for the things you can do, but because you are so loved by God and He will make your life worth living.  He will give you peace in the many difficult days you will have.  He will make the impossible happen.  He will bring hope to a life that seems impossible to enjoy.  Love will be the reason you are alive.  

It will be possible for you to have hope.  Don’t look at what you cannot do because that will discourage you.  Look at what you are capable of. Much will be discovered yet.  You do not need to be discouraged. For each difficult day you will have days that are incredible.  

If you focus on the spiritual side of your life you will be free.  If you focus on your body and your pain and your limitations, you will be in prison your whole life.  In the end you will know how many people have been changed by your story, so don’t be fearful to share the truth.  The truth will set you free and it will help bring understanding to a disorder that is so cruel.  

When your life is finished here on earth you will have such joy in knowing that you did everything you could to help others have hope for themselves.   

Find  joy in the little things. They are often the biggest things.  

You are loved deeply.  


Me on my 1 year birthday

I want to end my blog by saying, I didn’t realize how hard this would be to write, but I am glad I did it.  It’s important for me to remember, but not to focus on it too much.  I hope my experiences in my life can be helpful to other Rett families today.

Love, Karly


13 Responses so far »

  1. 1

    Di Kistler said,

    What a gift you have given to yourself and others by writing this. So deeply beautiful, Karly, profoundly so. I recently finished reading Heaven by Randy Alcorn and all I can do now is imagine how everything will be on the New Earth. Until then, words like these bring a bit of heaven to earth now. Be blessed, my friend. You are love and loved.

  2. 2

    Deb Krug said,

    And ten years from now…oh what a blog that will be!!!

  3. 3

    martha said,

    “Love will be the reason you are alive”…and so it is for us all, Karly!! Roxane is one of my favorite people , too..so glad you had time with her!! Love you!

  4. 4

    Your words are so precious. Thank you for your courage in sharing them. I needed them today.
    Bless you – you are indeed loved.


  5. 5

    I am glad you were given a voice to share all that is inside you.

  6. 6

    Lynn said,

    Thank you, Karly. That was beautiful.

  7. 7

    Mark Schafer said,

    You have a great friend, YOU! What a great letter to yourself and moreso because of the great effort and high cost of many years of enduring. Anyone who endures painful limitations of any sort can take comfort from the thoughts and truths of your words Karly. I sure do. Thanks for sharing sweetie.
    Gregg’s buddy/bro/friend and your yours,

  8. 8

    Jeff Lexvold said,

    WOW karly, this is such a powerful letter that I think EVERY young child or teenager who is struggling with life as they know it should have this letter read to them. If anyone had reasons to give up, it was you. But you didn’t, you had hope, you looked to the Lord and onward to those things beyond your pain and struggles. Thank you for reminding all of us THAT is where our thoughts need to be placed rather than on ourselves. You are an inspiration!

    In Christ,
    Your big brother, Jeff Lexvold

  9. 9

    Michelle said,

    God bless you Karly….you truly make me want to be a better person. Praying you feel better soon. Much love to you and your wonderful family!~

  10. 10

    Mary said,

    Karly – love shines so powerfully and beautifully through you. The truth of your words open up places in my heart. Thank you!

  11. 11

    Reblogged this on Apronhead and commented:
    This is a blog Karly wrote in January. She is gone now, but what I am reminded to do, by her story, is to treat those who are different, who look like they maybe can’t process like you and me, treat them with respect and speak to them as a real person. It can mean the world to someone.

  12. 12

    Peg Mahon said,

    Karly you are a life line of love and healing today, April 9, 2015 and for all time. Lead on bright and beautiful angel, radiant star of the night sky. Dance with the winds and with our precious Maureen, your sister spirit on the other side. God be praised in the work of you angels!

  13. 13

    Natasha said,

    Thankyou Karly, an inspiration.

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