I never thought it was possible that Rick Santorum could say anything that I would write a diary about. I just don't care what he has to say at this point in the game. I monitor it. I observe it. I form a few opinions on my observations. But to take the time to write a diary about something he has said lately? How would I ever care enough to do that? Yet here I am, and now I will. Because he was part of a gang raping of the soul that I experienced. He was a member of the whole party that did it to me. And he mocks me now while also hiding what he did, and if those he did it to don't tell who will ever know? It was ugly. It was only done to the most downtrodden, the most voiceless, the bone weary and pleading.
"One of the mandates is they require free prenatal testing in every insurance policy in America," Santorum, a conservative Roman Catholic, told a Christian Alliance luncheon in Columbus. "Why? Because it saves money in health care. Why? Because free prenatal testing ends up in more abortions and therefore less care that has to be done, because we cull the ranks of the disabled in our society."
My husband was a soldier in the United States Army under George W Bush. He was when 9/11 went down, and he remains so today. I was a single mom for seven years before meeting my husband. I had health insurance off and on, but I managed to have insurance on my daughter all the time thanks to Medicaid for Children filling in the gaps. Those were tough years. If you've done single mom you know where I'm coming from and if you haven't, I don't think I'm ever going to be able to get you to fully understand how hard to do that is in this country.
When I married my husband, both my daughter and I became insured under Tricare. Some people think that Tricare is government provided insurance similar to Medicare, but it isn't. It is underwritten by four different for profit insurers. They divide us all up based on the regions we are currently living in so no for profit insurer is making the lion's share off of the U.S. military. Tricare insurance can and will deny you services just like the civilians have to deal with. We do have something called patient advocates though and if Tricare denies us, sometimes we can go talk to them and if the denial was for something little magically you can have it. I came to discover (you aren't supposed to discover this) that each facility has a slush fund that they pay for services with that Tricare denies. So you the taxpayer bought the military some crappy insurance and when the insurance wouldn't pay, you paid some more.
I became pregnant with my son Joshua in 1999. I was going to be thirty-five when he was born so I requested an amnio. It came back normal. Now a normal amnio does not mean everything is fine. It just means that things we know how to check for on the DNA helix we can check for. My son was born with a gene mutation called Classic Freeman Sheldon Syndrome. I was shocked, my husband was shocked, it wasn't what we were expecting but we got on with it.
Classic Freeman Sheldon Syndrome comes with a whistling face small mouth, hand contractures that are usually moderate, extreme clubfeet, and extreme scoliosis. When Josh was four the top cure in between his shoulder blades began approaching 80 degrees very swiftly. The more he grew the crazier it got. When it got to 86 degree the doctors would stand in the X ray room looking at his X ray and say NOTHING. Bracing for this type of scoliosis does not work either and really only ever amounts to torture and you end up exerting so much pressure on the ribcage it starts to collapse. When Joshua wore his back brace he was in severe pain and he lost his ability to control his lips and he drooled on everything uncontrollably. It was so degrading for him, but he wore it for me and he wore it for everyone who said he had to wear it.
A doctor mentioned a new procedure called Titanium Rib that could save Josh's life as we were beginning to watch his demise approach on X ray, and he put a request for authorization in for it. Titanium Rib had been under study for 10 years in 4 FDA specified locations in the United States. It was in the process of final approval. Colorado Medicaid had already paid for three "poor children" to have the surgery done because their lives were in jeopardy and 10 years of documentation was all in order. But if you think that Tricare West was going to pay for something like that one day before the official approval made them have to think about paying for it....even in order to save a child's life, you've got another THINK coming under George W Bush and Rick Santorum.
My husband was in Iraq the first time they sent me the letter denying Josh the surgery. I called Tricare, told the nurse on the phone that nothing else was working and I was told too bad. I cried all day that day. I phoned the physician in Salt Lake City and he didn't know what to do at that point. He gave me the date a few months out that the Titanium Rib was supposed to have final approval and I decided to try again then. I did, and they told me that in their view it was still too experimental. A dumb doctor at Evans Army Hospital in the meantime tried to talk me into "letting my son go" as he put it. It would be the kind thing to do he thought. This doctor wasn't very swift though. He was Josh's Pediatrician at birth and placed his I.V. that they ran through is umbilical cord in his liver. I had no idea what the guy was doing, but thank God the nurse did. She kept saying, "Doctor, I'm pretty sure you threaded that into his liver, Doctor, I'm pretty sure you threaded that into his liver." So the doctor finally sent my son for an X ray so she'd shut up and he had threaded it into his liver. I thank her for my son's life too :)
I tried to get my son on Colorado Medicaid. They understood, but they couldn't just save him like that since his dad was a soldier and he had Tricare. They put him on a waiting list that was for kids like him. Kids who did have insurance but were being denied the procedures they needed. I was told he might be able to be considered for coverage in about 18 months. There weren't any weapons of mass destruction either and my child couldn't get the surgery he needed while his father served in a war! If I divorced my husband it wouldn't matter, Joshua would still be covered. I suppose my husband could have done some worthy of courts martial but how long would that take.....is that what we would have to do? I was sort of losing my mind.
My Uncle Leo had been a Potentate in the Shriners, and hell if I really knew what that was. Those guys are just creepy secretive okay? But he heard what was happening and he came from California to Colorado to get Joshua into the Shriners program and an appointment was made at Salt Lake City Shriners for Joshua. My Uncle reassured me that Salt Lake City would see to it that Joshua got the very best of care and screw Tricare, and my husband got home from Iraq. But that isn't exactly what happened.
When we got to the Shrine hospital, which was right across the street from Utah Children's doing Titanium Rib, we discovered that this new Titanium Rib thing was going to replace something called growth rods. Ummmm, guess who one of the surgeons at Utah Shriners was? Yes, he was the guy who invented growth rods. He wasn't sure about this Titanium Rib thing he said. Instead they put Josh into a Risser cast and sent us home for six weeks. I won't go into details. If you're curious go ahead and google Risser cast.
At the end of six weeks we went back to Shriners and took off the cast. Joshua had huge open sores on his hip bones because that was one place that the cast was using for leverage. He did have more of a neck but his neck muscles were so weak from the cast he couldn't hold his head up for a few days. But when they X rayed him, the curve in his spine that was trying to kill him hadn't budged. The growth rod doctor wanted to Risser cast again. My eyes glazed over, my son had been through hell, I was losing my mind. My husband told me to take the kids to the car, go now. I don't know what he said to those men in that room with all those big medical degrees and medical discoveries, but when he got to the car he had an appointment to see Dr. Smith for Titanium Rib the next day and Shriners were paying for it.
Dr. Smith visibly winced when he saw Josh's ribcage the next day. See, the cast was causing it to cave in and it devastated Dr. Smith because you are destroying the person's lung capacity by doing that. You are destroying one thing to fix another. He told us though full of deep sincerity he could help our son. And he did, he saved my son's life. When he was done the killing curve was 11 degrees. And on the day that the surgery was done Tricare phoned someone some place in that hospital and said that finally they would pay. And I don't know why they decided to do that other than I guess maybe they never wanted a serving military family to start talking.
It wasn't just Titanium Rib though. It was everything Joshua needed being denied all the time: physical therapy, speech therapy, swallow studies (and he was aspirating and only because I insisted on nursing him probably hadn't had pneumonia yet), lifts on foot braces, all of his home PT equipment, everything was denied all the time. That was my life before President Obama started working on healthcare reform.
The minute the work on healthcare reform started, a magic thing happened. I didn't get one more denial on anything. I'm not even talking about when things had been passed mind you. I'm only talking about when they started "working" on it. In fact, I began to get 25 physical therapy appointments approved in advance. It felt like a miracle. It happened subtly though, maybe too subtly.
I did have an amnio when Joshua was in the womb 16 weeks along, and if we knew that Joshua was going to have what he has I'm not sure what we would have decided. My husband is quite the Lion though, I'm pretty sure I would have felt fully supported and we would still be here. Now I'm going to get some big honesty out. I'm going to put it right out here for everyone to see.
I've been a single mom with scanty insurance coverage and I survived by the skin of my butt and my wits. I've also been the mother of a disabled child with my husband fighting a war for a bunch of neo-cons, far away from his family while George W Bush and Rick Santorum empowered and chose to represent and support for profit corporations that tortured his child and his family while he was in a war zone. Rick Santorum supported George W Bush 95% of the time, and Rick Santorum says that Obamacare culls the disabled from our population.
Here is my truth, if I knew I was carrying a fetus that was mentally disabled I would abort that fetus because I will die before it does and I can't protect that child and that person from Rick Santorum and the world that Rick Santorum and his followers would create at this time. Rick Santorum, Newt Gingrich, Ron Paul, and even Mitt because he is busy denying his healthcare solutions in MA are in this world and they crave and seek power. They represent the people who already tortured one of my children and this family for profits. I will be brave enough to choose to not carry my mentally handicapped child before I will allow Rick Santorum to deny that child a respectful existence. I will abort my mentally handicapped child before I will eventually have to send it out alone in Rick Santorum's world full of social betrayal and torture. And when George W Bush was President and my husband was fighting in Iraq, Rick Santorum whispered in my child's ear every night, "Suffer Joshua suffer, die Joshua die."
Wed Feb 22, 2012 at 5:49 AM PT: How do you update? I haven't updated on the new DailyKos until now. My husband brought the mail in last night but I didn't open it until this morning. Joshua has been nominated to attend the Junior National Young Leaders Conference in D.C. this summer. Sort of cool how we just find out this morning. Better look out Rick Santorum.