The following blog is the result of collaborations with two of my wonderful children, Alyssa and Jimmy...
How Cushing’s affects children and their families:
So, I saw this question and really wanted to give people the chance to see this disease from my kids point of view. I ask my kids how this has affected them and this is what they told me.
Jimmy is my 8 year old son. He is currently in the 2nd grade. When I first started getting sick, in 2011, he was 4 years old. He turned 5 later that year and started pre-school. It was at the end of his pre-school year that I learned I had Cushing's Syndrome.
Jimmy says: I have missed a lot of his school performances either because of being in the hospital, or just in too much pain to function. At school performances it would upset him when he saw other kids with their parents and I, his mom, wasn't there for him. He says he felt like he had no one to talk to. He had no one who would listen to him. He didn't feel like he had anyone who he could trust to keep his secrets. So, he felt alone and like there was no one he could open up to.
Jimmy now has separation anxiety and panic attacks because of all the time I was away from him. He is currently in therapy for this and some abuse he suffered under the hands of the devil. The devil physically, verbally, and mentally abused him while I was in the hospital. I had no idea until last year when the FBI showed up at my house and things started coming out. Jimmy has trouble making friends at school because he has a low self esteem.
Every time I get sick, Jimmy get scared now. He's afraid I'm going to end up in the hospital again and he's unsure where he will be. Who will take care of him? He just doesn't know what to do. It is just really uncertain for him every day because there are so many things I have to do and so many medicines I have to take to function and be ok.
A few weeks ago we were able to walk to the park. I haven't been able to walk to the park in over 3 years. We were able to be there and played for 3 hours before we walked back home. Jimmy says it felt good and like he could actually move for once because he was at the park and able to play. So, there are good times ahead, but he still gets scared a lot and feels uncertain about things.
Alyssa is my 12 year old daughter. She is in the 6th grade now. When I first started having symptoms of Cushing's she was 8 years old and going through her personal hell. She was in the 3rd grade when this all started.
Alyssa says: Of course we cannot fail to mention that because of my illness the devil molested her. He used my illness against her. Told her that if she told me what he was doing the stress of the situation would make me so sick that it would kill me. Alyssa had just lost her father two to three years earlier so she was scared to death of losing me and therefore didn't tell me. When she did tell me was at the height of my symptoms of Cushing's and between the Cushing's, medication, and other things going wrong with me I had impaired judgment and did not do as I should have done. Alyssa begged me to not tell anyone. She didn't want the devil to be turned in. I didn't know at the time that this was because she was protecting me. The devil had convinced her that she loved him. She wanted a father so badly that she was afraid of losing him. She begged me not to turn him in. I talked to the devil and he assured he it would never happen again. I trusted him. I was scared myself of him killing me. He had me convinced I couldn't live without him. I was stupid and made a very stupid decision. I didn't want to further hurt Alyssa by making her go through telling more people about the abuse, so I kept quiet. That's a decision I will regret for the rest of my life. I was on so much medication that my memory was gone quickly of this and I didn't hear about it again until the FBI showed up at my house last year. That's when it came back to me and I told them about it. That's when this horrible, unspeakable wrong started to be righted.
She remembers that she had a friend that wanted to come over and spend the night, but she always had to tell her "no" because I was always in the hospital and because she wanted to protect her friend from the devil. It scared her that I was sick so much and always in the hospital. She didn't want me to die. She had had nutrition classes at school and she knew that the stuff I was eating was not good for me. I didn't eat much and I was laying in bed all the time. She was afraid I was going to get blood clots from not moving around and they would kill me. She remembers the nutrition teacher saying that if you don't eat at all and you don't move at all that you can end up dying from it.
Alyssa says she felt like an orphan. Because she had lost her father and I was in the hospital so much that it was like I didn't exist anymore. Most of the kids at school knew she didn't have a father because they had had a "Bring Your Father to School Day". All of the kids brought their father to school except Alyssa. She was the only one without a father. Most of the kids didn't know she had a mom because I was never there. I wasn't there for the holiday parties, or parent/teacher conferences, or even just to pick her up from school. She felt very isolated and alone. She felt like she didn't even exist because she felt so alone. She felt like she wasn't even there.
November 23, 2013... This was Alyssa's 11th birthday. It was supposed to be a day full of happiness and fun and unicorns. I remember taking her to Incredible Pizza for her birthday lunch. This was with our family. I remember paying for the meal and sitting down at a table feeling very shaky..... and that was it for a couple of days for me. Later in that day, I ended up in the ER unresponsive and near death. I had pneumonia, was in respiratory distress, kidney failure, respiratory failure, and the list goes on and on. I'm told I had IVs in my arms and legs and anywhere else they could stick them. The ER staff were scared I was on my way out. They sent me to ICU thinking I did not have long to live. I woke up a couple of days later on a ventilator. I spent a total of about 4 days in ICU and another 4 or 5 days after moving to a regular room.
She says she can remember her grandma and the devil taking me to the ER and then not seeing me for over a week. They told her she didn't want to see me like that. I had needles and tubes everywhere and they were afraid it would scare her. They told her she could not come up there to see me. One hell of a birthday for her. Her mother dies and has to be revived and put on a ventilator.
Alyssa has separation anxiety, panic attacks and has been suicidal as a result of my illness and frequent hospitalizations. She felt so scared at one point in time during the peak of my hospital stays and illness that she wanted to end it all and kill herself so that she wouldn't have to hurt so much anymore. She is currently in therapy for these things and she is making progress.
This disease has torn my family apart. Many of my family members don't believe that I can possibly be as sick as I am. They think it's gone on for too long and I should have been cured by now. There's no way a disease can make you this sick. They think I'm just lazy and don't want to get out and work. It is very hurtful the things that people can say and do. It's incredible how much they think they know about this disease. They aren't the ones living it. It takes someone very special, caring, dependable, and courageous to be there for those of us living with Cushing's. It is a true testament to unconditional love.....
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