Archive for DSP’s

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. 

Karly

Advertisements

Comments (5) »

Update About My Silence

I have been silent on my blog lately.  I have been doing a lot of writing for my camp talks in July.  We made the decision to accept the camps offer to have me be their chapel speaker for 4 days.  It is exciting and fun and scary for me.  I have never been in front of people for 90 minutes at a time.  Much of that time will be singing or activities, but the speaking part is mine.  I am so honored by that.  The theme is Molded for a Purpose.  It has given me much to think about.  I believe that every person has a purpose.  Sometimes it takes a long time to figure out what that is, but I also know that EVERY life has value to God.  If we were to just believe what others in this world do, those of us with the inability to speak and care for ourselves, would be takers and not contributors.  I KNOW God doesn’t see us that way.  I know that in the bottom of my heart.

My friend Elizabeth, who has Rett, is coming for a visit next week.  I can’t wait to see her.  I have asked her if she can share some of her flowers with us.  She has created the most beautiful flower gardens at her house, and has said that I can have some of the plants for our house. We are thrilled! I love flowers.  She selects the plants at the nursery, and then decides where they go in the garden.  Her parents say the gardens are amazing.  Elizabeth has a talent for finding unique plants that normally are not seen here.  I have not been able to go into her garden because it’s on a steep hill.  She is able to walk so it’s easier for her. 

I have been so happy that the birds that are here in summer, are returning.  We have some bluebird houses in our yard.  My parents have seen them returning this week and starting to build their nests.  I love summer.  Beau is shedding and getting ready for warmer weather.  

My Mom is at home with me now full time.  It has been a difficult time finding new women and getting them trained.  She is tired. 

It is close to one year since I wrote my first blog.  There have been 26,500 people visit it.  I am so glad for the encouragement most of you have given to me to continue writing.  It has changed my life to have so many people find hope and support for their daughters by reading my blog.  I hope Elizabeth and I can write one together again soon.  I love to hear from you.  It makes my day.  I am eager to write more as I think of things to say.  If you have topics that may be helpful to hear about from my experience, please let me know.

Love, Karly

Comments (1) »

Bringing In New People

This past weekend was full of training for my Mom.  We hired a new woman to be with us for a few months until her sister returns from Australia.  I love her.  I want to see her more often.  She will be with me two weekends each month.  For those of you who do not have caregivers in your lives, I thought I could share something that might give you some insight. 

We have had some absolutely wonderful women in our lives over my lifetime.  It was just my Mom until I was five years old.  Then my aunt Martha came a few hours each week.  It gave us an idea of what is was like to have people in our home caring for me.  She made it easy because she was family.  She was with me a few years until it was time for her to go back to school.  We have had people over my life who have been friends who worked for us to care for me.  It has been a few years now since we have hired friends.  Usually they are strangers or friends of people we know.  We don’t live near a college or in the city, so it’s hard to find people.  They have to drive to our house. 

We have some women who have been with us for many years.  Since we are dependent on a team of women to assist me, it is always an effort to keep a full team.   It is not easy to find new people.  It takes a long time to give them all the information they need to know.  It is not something that is easy for my Mom to do anymore.  She has trained so many people in over my lifetime, and we have tried to welcome everyone.   We have had women who have hurt me when my Mom wasn’t here. We have had people steal from us.  One of them took my Mom’s credit card and with her husband got a lot of money.  They were not convicted because they knew how to not get caught, but the police had proof that it was her that stole my Mom’s credit card.  She is a massage therapist, and cared for me many hours every week.  She brought her husband into our home when my Mom wasn’t here.  I had a young woman step on my hand and try to cover it up when my Mom noticed the blood and bruising.   I got swung so hard in  my swing that I hit the post, and got a dark bruise over my back. 

If I didn’t need people to come into my life and help care for me, I would be glad.  There have been many times that I wasn’t able to share with my Mom what it was like for me when she wasn’t here because I wasn’t being abused, but the person I was with was very difficult to be around.  I love many of the women who have cared for me over my life, so I don’t want to have you think that all people are like that, but I am still opening up my life and our families lives to other people.  They often cause concern and at times great joy. 

I have written a lot about caregivers lately.  It has been a time of grief in our lives related to two people who have left their wounds. My Mom and I spend a lot of time together now, and I love that, but it still takes many people to care for me.  Some people say they are interested and can’t wait to come and work with me, and then never call again.  If that happened to them, it would probably upset them, but somehow, it is acceptable.  Families are affected greatly by people who are in their lives.  If they are irresponsible, disrespectful, have no boundaries around acceptable involvment it is difficult for us. 

I want to end by saying, thanks to the wonderful women who I have in my life now and have had in the past, who have shown me great respect and care and love.  You made our lives better. Thank you.

Love, Karly

Comments (2) »

Moving On to Better Things

I am sitting here with my Mom this morning trying to express what is in my thoughts.  I have had a hard week.  My Mom is on a leave from her job so I can be cared for.  When someone walks away from our lives it leaves an enormous challenge for my family. If you need direct care and are reading this, I imagine you have experienced this too.  We are trying to find people with a higher standard for themselves. People who are compassionate and caring.  I want to say that I know my Mom has sacrificed so many things in order for me to have a quality life at home.  It has cost her a lot.  I am so glad that I still live at home.  I know there is no perfect place to live but being with family is so much better than some grouphomes I have visited.  I hope to be in a small home someday with a great friend.  I know that day may come when I will be leaving home, but I am so grateful in the meantime to be here.  We have little support right now, so it is hard, but I am praying for GREAT women.  If you have great care, you are very blessed.

Love, Karly

Comments (1) »

I Can’t Imagine Why

One of the things that has helped me this past week, is writing. 

If you are fortunate enough to have great caregivers who you can count on no matter what, you are fortunate indeed. For those who have younger children in need of extra care, it is hard enough, but for those of us who have grown into adults and still require direct care in order to live and have meaningful lives, it becomes nearly impossible to find the care we deserve.  Our bodies are big, and have adult needs.  Our care is constant. 

Many young girls with Rett have extended families and friends who are actively involved in their care.  By the time I was 15, anyone who knew me and wanted to be involved in my care, had done so.  They were no longer able, and in many cases, uninterested to care for me.   My care frightens many people, not because it is so complex, but because they perceive it to be.  As a result we rely on strangers. We ask lots of questions and do lots of training and have been so disappointed lately. 

The person that walked away last week responded to an ad in our church advertisement paper.  She could be very caring, but to have her walk away without indicating that there was an issue, or even saying goodbye, causes me to not trust people.  Their words are sweet and smooth. They act so nice to me around my parents, but are often quiet and go about caring for me like they would the family dog when we are alone….feeding, toileting, minimal entertaining. 

My Mom is exhausted.  We now have two people who are gone.  She of course will do her best to care for me.  She cannot work at her job and be with me.  It is forcing her to make a decision. 

I speak on behalf of all my silent friends, when I say to caregivers: If you think this is a job you can do to earn some money, you need to check your hearts. If you are NOT caring, genuine, upbeat, reliable, honest, ethical, able to communicate problems as they arise, able to realize what families give up when they bring you into their home, then STAY AWAY.  Work at a shelter and take care of pets, and find out who you are.  Don’t pretend to take care of humans!!!  We have needs for companionship and intelligent conversation and accountability. Stay away  unless that is who you really are.

We are hurt more by your actions than by all the struggles we face as individuals living with involved disabilities.  Our lives are open before you and we deserve honor. Our families deserve respect.  We have a difficult path here on earth.  We need real, genuine and caring people to be in our lives.

And again I pray, please come quickly.

Karly

P.S. I have some wonderful women who have been with me for a long time, even some new ones who help out on the weekends, that I love and respect.  We are very grateful for them. We couldn’t do life without them.

Karly

Leave a comment »