About Me

Palmyra, VA, United States
Jasmine is our special miracle baby. She was born 17 weeks early and stayed in the neonatal intensive care unit for three and half months. She came home with oxygen for a short time and was free and clear for a while. She started out with the usual babbling a couple of months behind the learning curve due to her developmental delay. At 16 months, we were told she needed hearing aides for her mild to moderate hearing loss. It was then we stopped hearing anything from her. At age 2, we found out she was diagnosed with Autism Spectrum Disorder (ASD). Jasmine is non verbal autistic. In the beginning of 2010, she had been hospitalized and diagnosed with viral pneumonia. One week later, she was admitted again for bacterial pneumonia. We spent nearly a month in the hospital overall. We found out she had cysts in her left lung. In September after much debate and continuous problems, the mass and all of her lower left lung lobe had been removed surgically. It was just not any mass but a cancerous one. Jasmine has Pleuropulmonary Blastoma (PPB) -Type II.

Wednesday, March 2, 2011

Week Whatever: Anger

What a waste of time.  I went in for the SSI interview today.  Few words come to mind, disappointment and anger.  I filled out this lengthily child disability report.  It took several hours for me to compile all the medical history information in detail. They wanted to know every doctor she had ever seen, every hospital, last visits to each and for what.  The list goes on.  What kind of test and x rays were taken and for what.  I'm glad that I hoard appointment slips and have a great memory for dates and most every major visit.  It was all in vain.  I had called to set up an interview time in which they took some information from me. They asked me simple things like how many people lived in the house hold, own or rent, both our incomes and what was her disability.  I told them how much we made which leads me why I'm so upset.  We set a date.  I went in and from the start of our interview I'm told that we make too much.  She's disabled but we make $694 too much to be considered.  The girl who took my application anyways and told me they would keep it on file if that fact should change.  I gave her some of the same information I had given in the report and she asked what our medical expenses were.  I told her we owe $10,000 for this year already.  Not to mention we were still paying on last years hospitalizations prior to the diagnosis.  She  went and asked a supervisor if she could count these expenses against our income.  As I suspected, he said no.  I could tell she felt bad and was trying to do what she could.  I thanked her and went on my way and ready for the water works that would follow as I got in the car.  
I contained most of my tears and let it out as soon as I got home.  Angry and upset about how being honest and trying to do the right thing never gets us anywhere.  We try to make an honest living, work hard, faithfully pay our bills (on time for the most part), etc.  Going into that office was like the light at the end of a tunnel and what I thought would answer some of our troubles,....the light has blown out.  I realize that I have a better chance at winning the lottery than getting help from the government or state.  The rope I saw in the distance to save us from drowning was just short of grabbing onto.  I guess we will have to wait until the swells of trouble lift us to it and hope we don't drown before then.  If it were not for the help of others and their kindness, I would have lost all hope.   For now, I have just lost hope in a false system.  The system I have paid into for so long that now I can't even get help from it.  Yet I watch those driving Escalades, walking around with Coach bags, have iphones and go on nice family vacations all reap the benefits of the same assistance I'm asking for.  I"m angered because I'm to damn honest to lie and cheat. I have a conscience. 

3 comments:

  1. I'm sorry Rachel. Life is so unfair!!! Reading this makes me so angry myself. It so true, you see these people on disability, medicaid and collecting food stamps, but they're driving the latest SUV, and their kids have the latest and great toys!!!

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  2. "If it were not for the help of others and their kindness, I would have lost all hope."


    - that's the way it's supposed to be & in the end you will come away with what true gratitude, & humility really are. At some point in your life you will be able to pass that along to someone else who needs it. the govt system is a broken system & can't be counted on.

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  3. Have you contacted Cooper Geraty (I think)? He's an attorney that helps people appeal SSI decisions. Might be worth looking into???

    Rachel

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