I obviously left a lot out in our back story. A lot of emotional baggage. I’ve found in my research and dealing with other medical families, that although our situation is extreme, it’s not really unique. Unless the person who is ill can get on some sort of assistance, and for some, even then, most medical families face financial ruin. We choose between appointments, medications, food, rent, utilities. In today’s society, we believe the government is taking care of our disabled. Or families step in. That is so not the case. If a family makes above a certain amount, it doesn’t matter what the illness is outside of cancer or certain other terminal illnesses. If Jamey had been born with severe Down’s Syndrome, he could have been on disability from birth. But even that goes on he families income.
Even though Jamey is not able to go to school because of the pain, even though he can’t work through the dizziness, the near passing out. Even with early cirrhosis which can be terminal, Jamey is not considered disabled by the government. I might be able to get something for depression when I refile. And yes, I plan on refiling. Jamey is not getting any better anytime soon and he has a long difficult route to travel. And unfortunately, we can’t even support ourselves right now. It’s not a matter of bad choices this time, although I fully admit to making them before. It’s a matter of so many specialists and appointments and medication co pays. Hospitalizations…
Yes there are agencies out there that help. Communities usually do come together to help out families. But it’s usually for transplants, or cancer treatments. Chronic conditions, even when they lead to terminal conditions usually don’t see the same kind of support. And our situation goes a little deeper in that my parents could not handle Jamey’s diagnosis. In the beginning, my father thought I was exaggerating and my mother absolutely refused to believe he was as sick as he is despite all the hospitalizations and appointments. Denial is human nature.
Neurology refused to sign for homebound even though they were recommending an hour a day in the classroom. He couldn’t go even that. The buzzing from the light fixtures drove him nuts, the bells had him literally in tears. That didn’t help matters at all when we had to go in front of a magistrate for truancy. His PCP filled out the paperwork we needed. Thank Heavens. The school has a responsibility to report truancy. I was failing in my responsibility in getting the needed paperwork to prove that he was ill because Neurology refused to fill it out. And maybe they had their reasons. It did lead to meeting two of the best psychiatrists around. I hold Neurology responsible for that mess. And even though this is a grudging admission, when his guidance counselor questioned the validity of his illness, how can I really blame him when the doctors weren’t backing up our claims to what Jamey could actually do? It still shouldn’t have been said infront of Jamey.
When the argument over the rats came around I fully admit I lied and snuck them in. If Mom hadn’t been invading our privacy and digging through the attic, she would have never found them. Granted that doesn’t make my lie any less of a lie. Wrong is wrong. But I don’t regret it. My boys were loosing their home, they were going into an attic with their parents. They lost almost everything. Those rats gave them some comfort. They helped Jamey. Everyone lost their heads over the argument. Dad had people convinced that I left Mom laying on the porch when I was actually the one to call the police so that we could remove our belongings without a problem. I called the ambulance when she fell. She didn’t allow me even on the porch. And she told my 17 year old to go to hell. He hasn’t forgotten that. We’ve moved past it. But I wasn’t the only one who lost my mind.
My sisters swore that they would take care of Mom and Dad. Which was easy when Mom was in the hospital. When the doctor decided that she couldn’t be home alone and put her in a nursing home is when things changed. I was the spawn of Satan, still am to a lot of the family, but I’m the one entrusted to completely care for Mom. And yes, I’m a bit bitter about it, but bitterness helps no one. If I didn’t have full Mom duties, I could actually be working at least part time which would better our situation. Jamey is much better at standing up for himself with the doctors and letting them know exactly what is going on. But I can’t work and take care of Mom fulltime as well.
August 1st, 2013. The date we were given that we had to be out of my sister in laws home. Her mother in law was coming home, they didn’t have room. And it was a financial strain even with us buying groceries. We had no where to go, the engine in the car had blown, we literally walked away with what we could carry and a ferret at 7 pm at night. My friend Paula agreed to take the boys for a few nights But, knowing what was coming, I had tried to get either my sister to allow me to sign the boys over until we got on our feet or them placed in foster care. I could not have a 12 year old and a sick 17 year old without a roof over their heads. That’s why I’m devil spawn. I was “getting rid” of my responsibilities. Jim and I stayed between friends, Carrie and Paula’s. The very thought of being away from the boys gave me panic attacks. We spent one night in the car. Not many people can take in a family of four. And we had literally nothing.
It was the middle of August before my parents agreed to let us stay here again. We were thinking about heading to Pittsburgh for the homeless shelters, the area ones were full. There literally was no where else to go. As long as I live and as long as I am able, no one I love will ever have that feeling.
And of course, the night we spent in the car… CYF was called about it. I was all kinds of evil for trying to voluntarily make sure my kids were safe, but the person who called is a hero saving the boys from neglect and abuse. Thankfully, being homeless is not a crime. And when CYF called, I was out of the county. Ed could still be in foster care if that had happened.
I’ve been accused of being on a dark path. And yes, I do love horror, gore, zombies and I own a tarot deck or four. I’m the black sheep and proud of it, I’ve joked with my nephew about being the black sheep of the black sheep in both families. But I am a good person. I treat people how I want to be treated, I will help out whomever I can. I’ve taught my boys to stand up for the underdog. I don’t talk about people behind their backs or at least I don’t say anything that I wouldn’t say to their faces. (OK mostly, we all have our moments.) Yes, I cuss a lot more than I should. I’m no angel. I don’t pretend to be. But you always know where you stand with me. And I am so very grateful for the people we’ve had in our lives, both good and bad who have taught me extremely important lessons.
It might be cliche, but the good show me who I want to be and how to better myself. And the bad show me who I don’t want to be and how far I have come. And I am slowly learning to put things behind me. I’ve learned to stand up for myself without loosing my darned mind in the process. I’ve learned to walk away when I see the edges blurring. Everything in life is a lesson. Especially while dealing with the human element.
Human nature is, when things go wrong, we tend to do one of three things, we deny, we ignore, or we run to help. You don’t have to be a medical family in order to see this in any degree. But once someone in the family gets very ill, you will see it. It doesn’t take long to figure out who will be there for you and who won’t be. And sometimes, that is very surprising. And you will always find those who either purposely or unwittingly make a bad situation worse.
And with this, I conclude the beginning part of this blog.