Blog · June 28, 2018

It Begs the Question

I was watching “The View” this morning and it got me real upset. Megan McCain, who has no children, let alone sick children, can spew out her superior “Pro-Life” views (It’s “Murder”” she screams, over and over again), but what begs the question is WHY her party consistently and persistently doesn’t care about children when they get out of the womb, you know, those that are already here and suffering.

I’ve made no secret of the fact that I’ve had TWO bankruptcies to try to take care of my child, who was born with Epidermolysis Bullosa, and I ALWAYS had insurance. Him being born with EB is not a choice I made, it’s what life handed me.

When Nicky was a baby he cried for hours in pain, even if I medicated him, while standing over him trying to change his wound bandages. The first time he slept through the night he was 3.5 years old after we put a g-tube on him.
21 years later, Nicky cannot go a single month with some kind of procedure, many times multiple ones, including dilatations, iron infusions, labs, and the list goes on and on. He requires really strong opioids to keep him in somewhat decent shape. I adore Nicky (and adore is a mild word for the love I feel for him) but I hate the EB monster. I wouldn’t wish this upon anyone or anyone’s child. I don’t wish any sick child on any United States parent. This is not the country that really cares about them. If they did, we would have Universal Health Care.

The question is this: WHEN?

WHEN will Pro-Lifers start caring about Children and Adults with all kinds of diseases and disorders, including mental illness? WHEN? If anyone calls themselves PRO-LIFE, it should be ‘their whole life’, not only while it’s inside their mother’s belly.

Of course, the argument is always the same… they cite some obscure bad case in Europe or Canada/Australia or whatever country has a National Health Care System to make their point. The truth is, that is happening here too, and at a much higher rate. Those horrible cases in the US, well, they ignore those. It’s laughable. To pretend it does not happen here is madness. Madness. Insurance companies refuse to pay for stuff all the time. They refused to pay for Nicky’s life-saving supplies for years. They are constantly giving me grief over this and that. It’s never ending.
The truth is that I have lived in Europe, my family is there, nobody ever died because of anything related to health not being offered. Ever. It’s very sad when particular bad stories get blown up as if this happens all the time. Trust me, they do not. Here, on the other hand, I am part of the statistic people want to ignore.

But providing health care is only part of the puzzle. Patients with rare diseases, chronic illnesses, and disabilities often have a set of unusual circumstances that can affect their daily lives. Special Need parents need help all around. For example, I was never offered a nurse. Oh, I asked for one, many times, and my requests were always denied. It’s at the point now that Nicky only trusts me and his dad to do his bandages. For some of us special need moms, staying at home it’s not a choice. My son needs me 24/7. Financially speaking it was catastrophic, and yet I had no choice. I find it interesting how our society expects special need moms of children with catastrophic illnesses to work. I know many that do-although I know some have help with their families or nurses. All the while, I am still, always asked “what I do”. It’s like taking care of my son it’s always an “afterthought”, something “easy to do”. I challenge anyone to come and do what I do. Maybe after that, I might get some respect.

Another argument is to blame the unhealthy. You’re healthy, why should you have to pay for insurance at all? Amazing. It clearly shows you know very little about our health care system. What we are stuck right now is an “insurance” poll. They collect premiums to pay for everyone’s health care. The more customers the lower the premiums. It’s not brain surgery. But this is why we need to get away from it because people just don’t get it. People that don’t get it feel superior and they will never abandon their high and mighty selfishness and will never start caring for the people that actually suffer around them.

What we NEED is an administration that gives a rats ass about living, suffering children.

Here’s my tweet to Meghan McCain:

@MeghanMcCain I make you a deal. At the moment that every human being is guaranteed health care in the US, you can ban abortion. The fact that republicans don’t care about people that are already born and suffering is what keeps me pro-choice. Period.

Love & Light,