I have to admit it. Through my trials of the past nearly 18 years, not much seems to bother me anymore. I am amazed at the thick skin (pun intended) I’ve developed over the years. I chuckle daily at the things people complain about on Facebook or other social networks, and I know I learned a lot and have come a long way from the teenage girl whose ego was easily bruised. I strive to be the gal who does not care about what people think, what people do, how people behave, but when it comes to my children, some things I just can’t shrug off so easily. But maybe, when it comes to my children, it should bother me, or should it?

“Yes, it bothers me” #1. I suppose the biggest pet peeve I have is how every now and again some folk talk about how God or “Nature” punishes people by giving them dead children or children with disabilities. I am a true target for them since I had both. I chuckle at the nation that “Nature” punishes, I mean… Really? So… I will concentrate on this ‘God’ claim.
For one, I find this offensive because I never did anything illegal or evil, never hurt anyone but… I am being punished. Hmmm… I seem to recall plenty of murderers and downright evil people having perfectly healthy children, and priests and otherwise *wonderful* people suffer greatly, so this “punishment” argument does not hold any water at all. Even so, I researched the Bible quite extensively and all the scriptures I was given do not exactly apply to things in this day and age or they mean something completely different now, OR, different versions of the Bible give different meanings. It’s truly all up to interpretation. To be honest, the God I know and love does not go around punishing people. The God I know and love is there to support, help and love you no matter what.
Since I was still bothered by this whole notion, I went to a priest-this priest officiated Alex’s funeral and lost a child at birth himself, so I felt he was the best person to ask. He shook his head immediately as I was still in the middle of asking. Oh no… no… just go read John 9, read John 9. He kept repeating that, to go read John 9. So, the next day I went to the bookstore to go read John 9. It’s not that I did not have a Bible at my house, I do, BUT, I wanted to be able to read John 9 in all the different versions of the Bible to capture the meaning in each one. While the translation in each one was slightly different, the meaning is the same in each version, which is that a person that is disabled has come to teach us all a lesson, doing the works of God.

OK, “Yes, it bothers me” #2. As many know, when my son was born, the various insurance companies we had (my ex-husband’s work would change companies yearly) would always refuse to pay for the bandages necessary to take care of Nicky’s endless wounds. These products are not cheap, they are, in fact, extraordinarily expensive, which led me to a bankruptcy by the time Nicky was a little over a year old. After that, we survived by disinfecting, washing, re-rolling and reusing bandages, even those whose doctors urged us not to re-use. We had no choice. Read more about what we had to go through on my Blog I wrote about this subject for the EB Info World website: http://blog.ebinfoworld.com/?p=1157
The state of California started picking up the tab when Nicky was 4 and finally only when Nicky was 12 the insurance started paying for these Medically Necessary items. Yes, these are not luxuries, they are Necessities!!!
Some folk out there think we are ‘robbing’ the state or the insurance companies by getting these Necessary Medical Supplies covered, and they do not understand why should anybody but the people with EB and the family members of the person with EB pay for their medical supplies!!!
With this line of thinking, then Diabetes patients should pay for their own supplies, right? What about cancer patients? They should pay for their own chemotherapy treatments. Pregnant moms? They should pay for their own delivery. The reason we purchase an Insurance Plan or Medicare/Medicaid exist is so our Health Care Bills are taken care of. Families with an EB patient only have ONE treatment for their condition: cover the chronic wounds with ointments/creams and bandages. Unfortunately these supplies are outrageously expensive, and some families pay thousands of dollars a month for these products. Which family can afford this? Many families are forced to skimp on their supplies, some have to lie about their income so they can apply for social programs. No family can afford such a bill unless they are independently wealthy.

And this takes me to “Yes, it bothers me” #3. All this talk about “personal responsibility” when it comes to Health Care. Look, I understand the concept. There are many people out there who eat things that makes them sick, too much sugar, too much salt, fried, nasty meat filled with antibiotics and growth hormones, people who drink themselves to oblivious, people who smoke etc. It’s all fine and dandy. BUT… that’s not the real problem, is it? The problem is the price tag of getting Health Insurance. The cost of getting a Health Care Plan in the United States has skyrocketed in the past few years. There are too many jobs out there who DO NOT offer benefits. Also, most part-time jobs come with no benefits AT ALL. Then there are the Freelancers, the ‘Contract’, the Temps. If any of these people want Health Insurance, they have to pay an exorbitant bill to get it, which sometimes is bigger than their mortgage. This problem leads people to go without coverage. It’s simply NOT affordable!
So… what happens if these people have to go to the ER? Since they have no insurance, they have to go to the ER because they ER cannot turn them away. I had a friend who works for a truck company with no benefits and could not afford the $500 premium for Health Insurance. He had a burn the size of half the palm of his hands on his arm. They took care of him, he went home. No, it was not FREE. The ER will treat you, and then they send you a bill. That bill was $5,000! But of course he did not pay it, it was outrageous! And who do you think ends up paying for these bills? The people who buy Health Insurance do, and this increases our insurance costs which helps in the rise in the cost of health care expenses, which leads health insurers to provide more policies with higher deductibles and other limitations that require the consumer to pay a greater share of the cost themselves. This is why Insurance Companies became ‘death panels’ by turning down  people with pre-existing conditions such as cancer and depression. Or EB. Oh yes, this leads insurance companies to REFUSE to pay for treatments and BANDAGES. So, even if you DO have taken Personal Responsibility and are taking care of yourself and bought Health Insurance, but your child, God Forbid, is BORN with a rare, expensive condition, it matters little, you’re still screwed. This is why Health Care Reform was needed. If Hospitals don’t have to overcharge to make up for all the freebies, costs will go down, treatments are covered and everyone is taken care of. It makes so much sense it’s ridiculous I have to sit here and explain it. I am nobody. But, I’ve been greatly affected by the horrid Health Care system of this country, and if I don’t speak out, who will?

“Yes, it bothers me” #4. Relatives that do not care. We all have those… don’t we? I was recently relayed a story where the storyteller was mad at me because, when I was 15, I didn’t seem upset or was eager to visit a relative that was sick in the hospital, which later died. This relative never cared about me. Never talked to me. Never seemed the least bit interested in anything I was doing. Ever. Yes, I knew he was in the hospital. But unless someone ‘drove’ me there, how was I going to go visit? And why would I visit alone, someone that did not care if I was alive or around? I was 15! I would probably go now, yes, for sure, but back then? I was a child for God’s sakes! It makes no sense.
So… this is a piece of advice for yourself and for myself. If you want people to care for YOU in your time of need, take the effort in getting to know them, most especially children. If you don’t make the effort, don’t be surprised at the outcome. We all reap what we sow.

“Yes, it bothers me” #5. I want the countless people who expect my children to speak fluent Italian to please go away. This notion that if they do not become fluent NOW they are never going to is hogwash. Look, my children know ‘some’ Italian. They know many words, they understand a lot when I speak it, but to be honest, I have too much on my plate to teach them to be fluent in Italian on top of it. If there were classes to take I would send them, but Italian seems to be a forgotten language in the US. Besides, there is no guarantee that if I teach them now they will retain it in the long run. My ex-husband was raised in Italy for the first few years of his life and he only spoke Italian. He then moved to the US when he was 6 and he almost forgot everything. And, here’s my personal story: I spoke NO English until I was nearly 18. Can we debunk this now? We do plan to move to Italy eventually when Greg retires, and I guarantee you that when we do my children will speak Italian, end of story. Thank you.

“Yes, it bothers me” #6. OK-this has nothing to do with children, but still, it bothers me. Imagine paying for something all your life. Ever since you got your first job there was a deduction on your paycheck for it. You could not benefit from this until you retire! You pay in this for 50 years… and now, they call it…. drum roll please… an entitlement!!! Nop, sorry. Medicare and Social Security are NOT entitlements, they are EARNED BENEFITS. Period.

“Yes, it bothers me” #7. I get it… Nicky “looks” different. He has problems keeping his mouth clean, he’s covered in Bandages, he rides in a power chair. I get it, trust me. Noticing things that are different from the norm is a very normal reaction. BUT… Is it too much to ask to make my child comfortable while you’re staring at him? I admit that I’ve gotten used to the stares, and my child has too, but what I have a problem with is the jaw drop stupid grin on your face while you’re staring. While you stare at my child, is it too much to ask you to SMILE? A little smirk? A wave? Small talk? “Hey kido, having a good day?”, anything will do. I promise you, he won’t bite.

 

 

 

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