A recent visit to the ER for my son Nicky powerfully reminded me how much power we have, as parents of children with rare diseases, to control the situation. To control how we are treated. To make sure we are listened to. We are, after all, the experts on our kids! Nicky may be 21, but he’s still MY kid. Speaking up for my son, especially if something doesn’t sit or seem right is now a way of life.
No one knows their child like his parents. Even so, parents are often treated by doctors in general in a dismissive and condescending way. It’s up to us to make sure they understand that it’s our job to tirelessly fight for our children’s health. It’s up to us to make sure that those who work FOR us acknowledge the validity and credibility of our point of view.
But, it didn’t start that way.
I dreamed of having a little boy long before he was born, and those dreams did not involve a rare disorder. I found myself in uncharted waters, unsure how to navigate this new voyage, knowing in the deep recesses of my soul that his life was most likely going to end before mine. Not many understand this concept, this journey, but the intense love for my child propelled me forward, made me move mountains.
It took 9 months for the insurance to approve Nicky being seen by Doctors that were familiar with his condition (at Stanford) after he was born. 9 months! Call after insane call, the Insurance didn’t understand “why” I couldn’t take Nicky to a “local” or at least “in State” or “in Network” provider. We lived in Arizona at the time. They just wouldn’t believe that there were none. That’s life with an orphan condition.
That was only the beginning of my journey, a journey where I had daily challenges. I hurt daily from unacceptance. I felt isolated, scared, frustrated.
Whenever you or a loved one is affected by a rare disease, the single, most effective thing you can do is advocate. But, how?
“I’m all I’ve got”, I told myself. I had to learn to be my own rock. Strength comes from within. I am all this child has, and he needed me to speak for him. What was sad most of all was all the other stuff that comes with EB that can get bent. Here I was, trying to take care of my son, yet bandages were almost impossible to get, a basic 101 for RDEB patients, and the depression set in. Crying became a daily occurence in the beginning.
“Everything will be okay.” I learned that this phrase is never used in sincerity, only as a platitude. It’s almost as if they don’t want us to fight. The truth is, everything may not be okay. Every day I am afraid Nicky will lose his bandages, or his rights-he has a pre-existing condition after all. There is a constant level of trauma that will always, ALWAYS lay beneath the surface for parents like me.
The difference between parent of a child with a rare disorder and a doctor is that we are in the forefront of our child’s life. We see first hand how the disorder affects our unique child, we don’t read medical journals or see “other” patients. Every patient is different. We always anticipate crisis and health declines. There is a difference between treating a disease and living a disease. Over the years it became my quest to be heard. It may have taken many years, but I think I “got it now”. Thank goodness.
Doctors are not the only people we need to harness our power with, however. There are others.
A while back a woman with EB decided to heavily criticize how I raise EB Awareness. Apparently, parent’s feelings need to be sterilized and not talked about. The only feelings that matter are those of the patient, according to her. I disagree. Just last month I saw a mom of an older daughter with EB completely lose it in a lake of tears. How can we, or anyone, say that the parent’s feelings do not matter? It boggles the mind. If I am just ONE voice to express the parent’s struggles, I will be that voice. I harness that power.
Other people want special needs parents to take “Hope” out of the equation. “Hope” is part of my being. “Hope” is part of who I am. I couldn’t take it out of the equation if I wanted to. Hope is powerful. I will never, ever give it up.
Then there are those that feel people on “social services” are leeches, moochers, lazy. This one drives me crazy. People on welfare aren’t lazy. I’ve been to these offices myself and I was treated like a criminal. It was HORRIBLE!
The truth is that most of them don’t stay on it for very long, are members of working families, and almost 75% are elderly or disabled. That number climbs to 91% if we include the working poor. You read that right 91% of those on social services are either elderly, disabled or are indeed working. We must remember that full-time jobs in America don’t guarantee a living wage, and people that need help shouldn’t be shamed for it. If Walmart cannot pay their employees a living wage, it’s Walmart who in the end is getting welfare. That’s how I see it. Expecting those in poverty or who are chronically ill to ‘pull themselves up by their bootstraps’, either forgetting or not understanding that many have no boots, is not only judgmental about people in situations they know nothing about, it is simply wrong. I just don’t understand why anyone would vilify a single mom on food stamps. How about those 1.5 million Veterans on Food Stamps? Are they blocking anyone from their American dream? Would they prefer them living under a bridge or commit crimes just to eat and have a roof over their head? Aren’t we all SAFER if the underprivileged is taken care of considering how easy it is to get a gun?
I’m always amazed at how many people I know who complain about taxpayer dollars funding welfare for the poor or the elderly and disabled, are silent or ignorant when it comes to the vastly larger sums pumped into corporate welfare. Where is their compassion, empathy? Non-existent. Yet someone that takes a tax deduction is a “smart businessman”. Also, all those memes that claim “illegal immigrants” come here for the Welfare? I am sorry to tell you this, but undocumented populations are ineligible for all welfare programs, except emergency medical care.
Treat others as you’d like to be treated. Don’t judge people whose shoes you’ve not walked in. We all have different experiences in life which brings us to our values. Shut up and listen sometimes, we all are in a learning journey. Harness your Compassion.
Love & Light,
