Archive for October, 2010

Having Time Alone

October 29, 2010 · Filed under Caregiver, Disability Awareness, My Faith, PCA's, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged

My Mom and I planted this pot for Mother's Day

I have not felt great lately.  I am discouraged that life is so hard.  I have been so hyper.  It makes me hold my breath and hyperventilate all day long.  It’s not fun to feel out of control.  I know that my other Rett friends struggle with anxiety too, but I don’t see them acting the way I do.  I haven’t been able to breathe normal most of this week.  I was so discouraged yesterday because I was feeling how hard my life was.  I don’t feel like I have much interest in living in a body that causes me so much struggle.

I’ve had a few days in my life where I didn’t hold my breath and hyperventilate until I was exhausted.  It has become really sad for me.  I thought a long time about whether I should write about this on my blog.  But since I am honest about Rett Syndrome and how it has affected me I decided to be honest about this too.  I have had great health and I have had opportunities that other females with Rett don’t have, but I have not had an easy life.  I struggle daily to find peace and calm.  I struggle a LOT with anxiety.  I struggle with breathing normally.  My stomach often hurts.  I’m living in a body that gives me so little rest.  I get discouraged when I see how exhausted my parents get, trying to meet my needs.  I like comfort as much as anyone does.  It’s so difficult to love people so much and know that my needs wear them out.  I never forget how hard it is for others to care for me.  I haven’t wanted to have so many people in my life who are here and trying to figure out how to best meet my needs.

I haven’t had a day in my life that is just for me.  That I do whatever I want.  That I just stay in bed if I want.  I can’t go anywhere by myself.  Even going to the bathroom, where most people have privacy, I have none.  I don’t see how I can ever be alone in this life.  It’s so stressful for me to always have someone in my site.  I decided yesterday that everyday I want to have time alone in my room.  I asked my Mom to help with this so I could listen to music or book on cd by myself.  I’m glad for this because I have some peace in my room.

When my days seem to hard to live I just pray and ask God to see how I can help others.  If I just have to struggle and I can’t use it to give others insight into Rett Syndrome it’s not worth the pain.  I hope you understand that there are many days that those of us who live with Rett Syndrome live, wanting something more from this life than separation and pain.  It’s not easy to be this discouraged, but I wanted to let you know.

Love, Karly

I love this garden fairy. She is in the living room now by our plants.

 

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I Can Hear Just Fine

October 20, 2010 · Filed under Disability Awareness, My Faith, Rett Syndrome Intelligence, Understanding Rett Syndrome

Something happened today that made me feel invisible.  Sometimes I want to be invisible and unnoticed for being different.  But this was in the Bible Study group for women.  I’ve been going with my Mom.  I have worked hard on the workbook.  I have contributed my answers by having my Mom read them out loud during our group time.  I have shared my story with them so they know a little about me.

I was introduced to others today who are very kind to me and I am so glad, but at the end of the group time today one of the women said something nice about my answers and told my Mom to tell me what she had just said.  I was sitting there right beside my Mom.  It’s not something she realized but it made me feel very funny inside.  I couldn’t tell her anything with my mouth.  I couldn’t walk over to her, but it was a moment that made me feel sad inside.

I know I am not the only person who has a disability who feels like others are uninformed about how to be around us.  It’s hard to be heard when we don’t speak, but I want to say something that I have said before.  Being silent does NOT mean we are ignorant. It means our voices are quiet, not our minds.  I can hear everything that is happening in a room.  I don’t need people to talk loud.  I can hear just fine.

Love, Karly

 

It's been a fun summer with Beau. He likes to sit on his exercise ball.

 

 

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I Am Here

October 14, 2010 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence · Tagged ,

 

Orange is my favorite color.

 

 

I haven’t been writing much this time of year.  I enjoy being outdoors and I love the leaves that are turning many beautiful colors.  I can’t see them unless I am close but I can see their colors.  My Mom and I have been going on drives and using my Flip Video camera to record the leaves changing colors.  It’s been great to watch those videos on my new computer.

One of the things that I love is being near water.  It makes me feel so peaceful.  I don’t hold my breath or hyperventilate as much near water.  I live in a state where there are thousands of lakes and rivers and ponds, so I can be close to water in the warm months.  But when it is cold I can’t be outside, because my body can’t handle the cold.  I can’t stay warm then.  We decided this summer to video water so I could watch it during the winter.  My Mom has gotten about 12 different videos for me to watch of water.  Some of it is calm and peaceful and others are waterfalls that I need on days when I am hyper.

I have had a hard time with my anxiety.  I feel so restless.  In the Rettgirl brochure they talk about Rett Syndrome being a combination of five disorders.  Parkinson’s Disease, Epilepsy, Autism, Cerebral Palsy and Anxiety Disorder.  Many days I feel calm, but lately I have felt so anxious that I can’t relax.  I sleep good, but I feel so hyper in my body and mind during the day.  I hate days that feel like that, because I don’t feel like writing, or being around people.  I even have shredded my bandanas with teeth.  I feel so frustrated that I can’t just calm down.  We have done many things that have become difficult to manage like exercising in my walker, and standing an hour everyday, and going for drives and being outside listening to calming music and being in my swing.  I want it to stop because it’s not me in my mind, it’s what my body does that I can’t help.  If there was a cure for this part of Rett Syndrome I would be very happy.

Here are some pictures of our state in the Fall.

 

On a road near our house

 

 

My Mom says this bridge reminds her of England...it's near our house too

 

 

Our friend Theresa helped push my chair to the bridge. We had a picnic by the waterfall.

 

 

This bush is right beside our deck.

 

 

Sitting on the dock by one of my favorite lakes. Being near water calms me.

 

 

This is so beautiful! I can see it on my computer after my Mom takes the picture.

 

 

Love, Karly

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