Remembering My Days

I am sitting today on the deck with Mom and Gregg. It’s a day I’ve looked forward to for a long time.  It’s my 26th birthday! I asked to share this day with Mom and Gregg. I have had many parades in my life. On many of my birthdays, I was not feeling good. I have had a rough start today because I cannot stop chewing and hyperventilating so even typing is hard.  Both my Mom and I are weary.  

July 5th 1985 with my big sister Leah

I was too young to remember this one! I was one week old.

At one month I could hold my head up.

My 1st birthday

With my friend Roxanne Carrington when I was 9 years old.

I’m 11 years old. This is on our deck when it was new.
On my 12th birthday in a rowboat. I remember this day because I could communicate then and I wrote a story about a fish. It was a fun time.

It’s been a quiet week, so I’ve had many hours to think.  I know that I am very fortunate because even though I have Rett Syndrome, I am able to communicate and I have had many great things happen in my life.  I realize that even though my life has been challenging and at times I wished that I could die, I have given others a view they probably wouldn’t have without my story.  That gives me comfort today.  I know that without my ability to communicate, many families and girls with Rett Syndrome would not be seen as young girls who lost something they couldn’t help. 

I am eager to say that I feel like God has given me the gift of communication because my life is suppose to be more open to others.  If I didn’t have it and I didn’t have family who believe in me and give me opportunities to share my story and my vision and my life, I would be so sad today.  But inside even though I am struggling today, I feel much gratitude and I feel like it’s been a life worth living.   I understand how hard it is to live with Rett Syndrome.  My Mom and family do too.  I think my Mom would say today, it’s more than she wants to handle!  

Yesterday in my grandparents back yard. My back has been sore so I try to lay down everyday.

Today, we would just like to celebrate, so we are going to the lake.  I have asked for a picnic and a chance to be in the water.  No parade today.  Sometimes the noise is too loud for me and I don’t enjoy it, so today we are going to be by ourselves.  

At the beach I sit in my beach chair in the water. Gregg carried me to my chair.

Our lake has a beach wheelchair that goes in the water and over the sand. I love it because it allows me to get in the water easily.

The water calms me. I felt so much better when we got there.

I hope everyone has a great day today, and for those of you who are struggling and suffering from illnesses and disorders you never expected to have in your life, I send you a prayer for peace, because it’s not an easy life. But I know that when I get through this life I will understand some things that I cannot while I am still alive.  I know that I am loved by many today and that God loves me even more, so I feel content and my heart is glad for my days.  

I know that many of you have written to me and I haven’t felt up to responding yet, but I have many answers on my blogpage so I hope you continue to read what I have written over the past three years.  



4 Responses so far »

  1. 1

    Heather said,

    Have a wonderful Birthday! Your words inspire my family and I look forward to reading your posts.

  2. 2

    mali newman said,

    happy birthday, have a wonderful day, you are an insparation to all of us, god blees you, and thank you for all the stories you write for us,

    love the newmans

  3. 3

    cameron parker said,

    Hey Karly,

    I’m glad you enjoyed the weekend. Thank you for persevering when it would be easy to give up and quit on life. Your example is inspiring!Your faith reminds me of a song that I had in my head this weekend by Israel Houghton and the New Breed called “I Am Not Forgotten.”

    God bless,

  4. 4

    Julie said,

    I am glad that you had a wonderful birthday Miss Karly. I truly enjoy your blog. It’s people like you that make the world a wonderful place.


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