"I cannot speak for myself. I cannot write. I cannot type. I cannot communicate. But I will be heard, today, tomorrow and every day from now until someone listens.
I am scared. I am depressed. I am lonely. I am worried what this is doing to my mom and dad.
It is 21 days since I left the Center for Discovery. My parents tell me that New Jersey demanded I come back but they only have institutional placements for me because I use a feeding tube and have seizures. Why couldn't I stay in my home in New York where they were able to give me the support I needed to live like a civilized person? I now sit at home with little to do but stare at the tv and whine. Whining is the only way I can be heard. It is a shrill uncomfortable noise, but I have no other way to let everyone know how unhappy I am.
I get stiffer by the day, sitting in this wheelchair. The therapies that helped keep me from deteriorating have not been given. I've had some seizures while my mom's been showering me and one time I cut my foot on the metal shower door track. I felt worse for my mom because there was no one home to help her lay me down and then lift me back up after it was over. Mom's back is killing her as she has to try to deal with getting me up and down all day. She is popping Motrin way too much. It hurts me to see her in pain.
Mom, Dad, our family friend Joanne, and I went to visit the places that the State of NJ says are appropriate to handle my needs. You would not want anyone you loved to be there. Living in a hospital like setting in a room with 3 other people. No working shower, receiving therapies in a depressing basement where the laundry is being done. No one even close to my age. It was a sad and uncomfortable environment. I want to live in a home, not an institution. My privacy and dignity have meaning and are not just empty words. Is there no hope in this world?
I miss my friends at the Center for Discovery. I miss my prom date. I got an email from the staff at my house where I lived for the last 3 years. They say Adam is flirting with Abby now. It was heartbreaking to read their words telling me how much they miss me. I miss that life too!
I wait each day for someone to do right by me. In the meantime, I suffer in silence because I have no voice. But just because I can't speak doesn't mean I should not be heard. Please listen. I am begging you to listen."
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Oh this is so sad. Jon Corzine is an unsympathetic bastard trying to destroy new jersey. So much for taking care of the most vulnerable, huh?! Please get in touch with NJ 101.5, they hear the voices of your beautiful daughter and shine a big huge spotlight on these types of stories. I will be trying to contact them as well. Best of luck to your family and hopefully things will be changing around here soon!
ReplyDeleteI'm sending this around, as are a lot of other people. Hopefully something can be done for Annie and anyone else out there suffering. It seems they forget what its like to be Human. The government imposes laws, taxes, and fines with the guise of protection and safety, yet they let millions suffer when they can easily make change and actually help us.
ReplyDeleteMy prayers go out to this family! I wonder doesn't New Jersey have a home health aid/nursing program? It is much cheaper on the state to have aids come to the house and take care of patients. My neice also has a nurse twice a day to get her up and put her to bed. The aids stay all day to care for her. It might sound odd but to me it sounds like the mother just wants her out of the home.
ReplyDeleteAnnie lived at home for the first 18 years of her life, with her mother providing much of her care. But as someone with complex mental and physical needs, it is extremely difficult to provide Annie with the medical care, physical and occupational therapy, education, psychological well-being, and socialization that she requires in a home setting, even with help. And it is not so easy to get the state to provide aides for all of those services outside of a licensed facility. Annie's family loves her very, very much, and wants her to have the most comfortable, healthy, stimulating life that she can lead given her significant disabilities and medical needs. She thrived at the Center for Discovery, where all of her needs were met by a caring and attentive staff in an enriching environment, and her family visited her every week, and brought her home when possible, as well. As much as they would love Annie to live at home, her parents realize that they cannot provide her with the quality of life that a well-run facility can. However, they also do NOT want her put away in a hospital-like facility, where she is treated as an ill medical patient and nothing more. This is the struggle that Annie faces today.
ReplyDeleteThis is so heartbreaking!
ReplyDeleteWhat can I do to help??
My heart goes out to you. I pray for the best for you!
ReplyDeleteIf you don't mind me asking...if Annie can't communicate in any way, then how is she writing this blog? Even if someone's typing it for her, how is she communicating the things she's saying?
It is horrible what you are going through. Its amazing that even though your dealing with this tragedy that you are sharing your story. stay strong and remember everything happens for a reason!
ReplyDeleteI'm on the other side of the world from you, but I hear you Annie..And I will continue to listen.. :)
ReplyDeleteSaravie
I am wondering how difficult it would be to establish NY residency. Since she is over 18 would the Discovery facility be considered her home and make her a New York resident? I do not know who DDD is. Does NY have programs to help?
ReplyDeletei am sending prayers to the lord and lady that the gov does what he needs to and that you get the proper help you need i know how hard it is to take care of a loved one i take care of my father everyday but he is not half what you are he is just bed ridden due to sores and arthritus but i use a hoyer to transfer him and we cant give him showers so as i said i will say my prayers for you and send you love from my heart i wish i could do more
ReplyDeleteThis is just so typical of a government that does'nt live up to what is commonly known as basic human rights, so angry it makes me as i am a mother of 3 children with a disability. My heart literally aches with hearing this story Annie. Please we need someone to start stepping up for our beautiful loved ones and lend them and us a gentle, loving and caring helping hand. Living in oz i only wish that there was more i could do ?
ReplyDeleteThese are the words of Annie's family, as best as they express what she is going through now from her perspective. Though Annie cannot speak or write, she can show joy and sadness, irritation and contentment, and can exhibit the negative effects of not having all of her physical, medical, nutritional, and psychosocial needs met appropriately. In an effort to ensure that she is provided for and her story is told, they are blogging about their daughter's present situation, giving a voice to the voiceless.
ReplyDeleteHi Annie!! We hear you sweetheart! I hope & pray that you receive the care & treatment you so richly deserve. There are so many girls out there just like you & you need to know that you are not alone & we are fighting for a cure & a better life for you.
ReplyDeleteGod bless you & your family!!
Tracy www.freewebs.com/foreverangelspageant benefiting the IRSF.
Hi Annie! I am your cousin Nicole's friend. I am sorry to hear about this, I hope you feel better. what can I do to help?
ReplyDeleteWe all love you Annie and hope that your voice will be heard and you will get to go back to your home at Center for Discovery.
ReplyDeleteI'm the mom of a 14 year old Rett angel named Brenna. She was undiagnosed for over 13 years. We just got our diagnosis on 6/11/09. I'm trying get our Silent Angels voices heard, Annie, yours too. I started a letter writting campaign to get Oprah to do a show about Rett syndrome. We have over 60 schools all over the country and almost 55,000 letters in just a few months. Oprah's publicist called me last week, she knows what I'm doing. They are worried about what they are going to do with an 18 wheeler full of letters from around the world. Can you help Annie? We're almost to the finish line. I would love you on stage with us telling your story, fighting for your right to be heard and to be cared for in the facility you like. "Ask" your mom and dad if they can join this campaign and support me. I just met Clint Black last night at a concert he did for Rett Research. I have support from country music singer Collin Raye. We need all the support we can get so Oprah can't say no. Please help, contact me. My web-site is www.rettsyndromeawareness.com
ReplyDeleteLove you Annie and all your little girlfriends. Sincerely, Lora & Rett angel Brenna.