Taking Time to Remember

I wrote my first blog March 26, 2008.  It has been nearly a year, and much has happened.  I don’t feel very happy today. Not only is it raining, but one of my best friends, who was suppose to come today, didn’t.  She is home sick.

I try to imagine what I would be like if I didn’t have my disability.  I imagine I would have a busy life.  It would be full of school and learning,  and friends, and school breaks where I get to go to warm places.  A car of my own. Interesting activities. Food of my choosing, without limitations.  Easy access to family and friends through email, and cell phones, and texting.  Independent of my Mom’s support.  I would have energy for my own personal interests, which I am sure would be many.  I may even be married by now. 

I hear other women, who are in my life because they help meet my needs, talking about their lives.  They try to fit me into their busyness.  My needs require energy and willingness. Many times I need extra help to even eat and drink. 

If you have read other blog entries I have written, you will know that most days I am content.  Today, I am grieving. I am sad for me, my Mom and step-dad.  We have had four people who I am dependent on to even live, cause us great grief and stress in the past week.  They are just meeting their needs. They want us to be undestanding, and accomodate them.  It is a simple request. If it was just one, on occasion, it wouldn’t be so devestating.  But to have four in a row, not fulfill their promises, is devestating.  I can think of no other word.

If my life were full of what it could be, or I was a typical person, these little setbacks wouldn’t be so disappointing.  I look forward to what would be so simple to others, with great anticipation and excitement.  Most people don’t mean to be hurtful, but since I can’t go to them, or pick up the phone and call, I am left to their thoughtfulness.  It is often lacking. 

Most people expect that my Mom will just keep on doing whatever it takes to meet my needs and that if it doesn’t work out for them to come, it isn’t a big deal.  What they don’t know is how incredibly hard she works everyday to meet my needs, and sacrifices so many things about her own life in order to give me a life of value.  When people expect her to pick up their lack, it takes away from the very little time she has to relax, let alone leave and go for a walk by herself.  She gets so weary and because she’s my Mom, she keeps going no matter how exhausted she is.  Because I cannot live without care, this is so painful for me.  I hurt inside, seeing how much sacrifice she makes for me.  In addition to that, my step-dad has been taking time from his work to help us.  I love him for it and yet it’s not the life any of us deserve.  When people who we are counting on, don’t respect how much of a burden they place on my family when they are inconsistent, causes me so much grief.  It makes me weary of living. 

My sister has moved far away. I rarely see her and I miss her.  I hate to feel like my life is just a burden to others.  That meeting my needs is  just a paycheck to people, and yet the only people I see besides my Mom and step-dad everyday, are those who are paid to be here.  That is more than I can take. 



5 Responses so far »

  1. 1

    Sandy said,

    I am so sorry to hear you are in so much pain. I wish there was something I could do t help. I pray that the right women will soon enter your life. I cannot imagine what you and your family must do to get through each day, but please know that it is all worth it, you are worth it!- I hope and pray that God gives you, your mom and step-dad all the strength you need to get through this tough time. I am always just across the pond – only a phone-call or e-mail away – never be afraid to reach out! – I am here if you need me!
    Love Sandy

  2. 2

    Mag said,

    Hi Karly,

    I found your blog through another sufferer of Rett. Upon hearing about her symptoms I was devastated to learn that such suffering has to take place. I thought about the limitations and pain that she has to endure and thought that life would be nothing but a struggle for her. I thought about her family and all the sacrifices they would have to make and the heartbreak they would feel as they watched their daughter struggle. But after finding you and realizing that you can communicate and that you are very intelligent and strong and passionate, I see that there is hope and happiness too.

    I have checked in several times to read your blog and see how you’re doing. I’m so sorry that you’re down and that you have been hurt by the disappointment of others. I can only imagine how much your family has done for you and how badly how must want to see them get some much needed rest and relaxation.

    Don’t forget though, they do it out of love and enjoyment. You are worth every bit of sweat and tears that go into your care. You are their blessing that they love and I’m sure that caring for you has brought them such joy. You are so special and are giving a voice to those suffering from Rett. You inspire me unbelievably and I have never really been affected by Rett. I can only imagine how meaningful you are to others who suffer or have loved ones who suffer. So please, don’t despair, just keep your chin up and keep on loving life.

    Your friend, Mag

  3. 3

    Natalie Millhouse said,

    Hi Karly,
    I dont know if you remember me, i own Stewie. I am so sorry to hear about all that has been going on lately. I just wanted you to know that if you ever need to get out of the house, you can come over and see Stewie and all the other horses.
    Also, you mentioned that you try to imagine what your life would be like without your disability. You are the most successful, well educated woman i know. You do not have a disability, you have a gift. You are a smart, talented person that just happens to have Rett Syndrome.


  4. 4

    Missy Millhouse said,

    Hi Karly,

    Hopefully you are having better days since you wrote this. Whenever I read your writings on this blog I am struck by your deep insight and thoughts. Something you said here made me think. You were talking about the women in your life trying to fit you into their “busyness”.

    You are so right about this. So many of us are so involved in “busyness”. Because of this we don’t take the time to really reflect or appreciate the pure and simple. In some ways we let the important things in life (which are the pure and simple), pass by us un-noticed. We don’t see the forest through the trees because we are just too busy. We don’t see the un-thoughtful acts because we let the “busyness” fill that thought.

    You have given me something to think about again. That is one of your many talents.

    Your friend and neighbor,

    Missy Millhouse

  5. 5

    Darby said,

    Hello again Karly!
    I wanted to check in today to see how you’re doing and if you are still writing. I’m glad to see that you are. I have to agree with many of the responses that I’ve seen. You are more than just a person someone helps to collect a paycheck. You are a beam of light for thousands out there. Every time I read your entries I am struck by the thoughtfulness and insight you have and I always come away from your blog with a more open mind. Sometimes I wonder if I’m doing enough for my daughter, Jenna (3years old) or if I’m getting too caught up in the business of the day too much and not spending enough time with her. Yesterday I felt so bad because she was crying and I couldn’t figure out what she wanted for the first time ever. I tried everything until my husband suggested letting her sleep for a while. I laid her down and she put her fingers in her mouth and was ready for bed. I felt horrible that I didn’t understand her and I told her that. She giggled and went to sleep. I cannot express my thanks to you for opening my eyes to realize that just explaining things to her helps. Since I last emailed you, I’ve been talking to her a lot more and explaining EVERYTHING. She has responded extremely well to that and seems much happier overall. Don’t ever feel like you are a burden to anyone. You have helped so many people just because you care enough about everyone else to take the time to write about yourself, your experiences, and your feelings. We have all grown to love you and I hope you know that. Thank you Karly and when you’re feeling down, remember all of the lives you’ve impacted and all of the hearts you’ve touched.

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