The Days When I Lose Hope

Days like this, days in which I lose hope, are the hardest. They happen, sometimes more often, sometimes less. But they always happen.

When stress and tiredness unite their forces, they manage to make me crumble and fall into a deep and dark place. There, at the bottom of the pit, there is no light, there is no ladder, there is no hope.

All of a sudden, that precious, chimeric concept that keeps me going, HOPE, is gone like it has never existed, leaving a huge emptiness behind it.
I feel small and lost. I feel like the person I was yesterday, that person that could take on the world, is gone and I’m afraid she may never return.
And then I panic. I panic because only she can take care of my son and his needs. I panic because I could never keep up with the things she does. I panic because I am not a fighter. I panic...

But then I remember this quote I read with the corner of my eye on a subway poster.
“When you get tired, learn to rest not to give up”.

It took me a while to understand this but I think I finally got a hold of it. I cannot stop stressful things from happening any more than I can stop being tired. So, I cannot prevent these days from happening but I can stop fueling them with my fears. So I just step back for a couple of days, breathe deeply and try to release as much stress as I can.

If Stress + Tiredness < Critical then my “take on the world” self will return. I'm counting on it!

My Little Fish in the Forest

Sometimes children come and ask me what is wrong with Andreas-Rares. How come he is not running and playing with the other kids. I thought long and hard of what the answer to that question should be. Children understand things that sometimes even adults struggle with. But what I have noticed is that children feel more than they understand and sometimes, what they understand is filtered through their feelings.

If there is one thing I learned during the last years is that exclusion starts from home. Society comes to strongly reinforce what people have already led their children to believe. Most parents don’t even realize they are doing it because it has to do with their feeling of “normality” which, they expect to be accepted as a given. 

In my opinion, social “normality” does not exist. 

The problem with this approach is that a parent would start from the premises that their actions and their children’s actions need to fit, embrace or otherwise obey the society rules. So they are raising their children to fit in. Which is not absurd but it defeats the purpose of parenting. 

I believe a parent’s purpose should be to nurture and shape the child’s world within. Help them learn how to express better their needs, how not to be scared of expressing their feeling no matter what society will label them as, how to solve their own problems without always looking for the easy way out, how to ask for help when they need to, in short, how to think independently.

The thing is that society changes its rules every generation. The rules that parents are familiar with from their childhood and they are trying to impose to their children are already obsolete.

Why is it important to give children a chance to shape their own society, with their own set of new rules? Because the old rules are broken, because for generations we keep hanging on to stereotype thinking that unless we let go, they won’t disappear. Things like: 

-          - Child screaming in the supermarket. Everyone gives killer looks to the mother – “Bad mother” look; “Make him stop” look; “You are bothering me” look and so on. Succumbing under social pressure the mother turns to the child and threatens him.

-           - Special needs child has a repetitive spastic movement in his wheel chair in the middle of a crowded mall. People either look at him like at a wounded animal that needs to be put down or turn their faces in disgust.

-          - Severely spastic child, wheelchair bound. His parents take him out for walks only after dark.

It takes strength to go against the “society rules” and when you have a special needs child, strength is something you don’t have to spare.

Here, as in many other countries, under the shiny glow of the special needs programs and activities there lies a very old and twisted believe that it’s a shame to have a special needs child. A special needs child is something to be hidden from the light of day, forgotten somewhere in a corner and never to be spoke of again.

You would think that this mentality is only reserved for the people in the villages, the ones who barely read or write, but you would be wrong. We even had a doctor telling us that it’s bad for his soul (the doctor’s) to have a patient who will never improve since he has a syndrome. It’s sad but very true unfortunately. 

Getting back to our story, I decided to explain to the kids that Andreas-Rares is like a fish in a forest. He’s is perfect as he is. He is neither “damaged” nor inferior in any way. He is just in the wrong place, like a fish in a forest.  Just because it’s harder to get to know his world it doesn’t mean that it’s less valuable or less meaningful.

Vaccines - Yet Another Funny Conspiracy Theory

These days, mass media is flooded with news about the measles epidemic in Romania. The ministry of health is pointing fingers to the parents who didn’t vaccinate their children, the parents are fighting back with arguments of misleading information and conspiracy theories, people started getting agitated on the socializing networks, everyone knows best, friends are arguing amongst themselves, I’ve even seen a post something like “If you haven’t vaccinated your child unfriend me now!” Seriously, people, Get a grip!

First off I think it’s a good moment to keep our shirts on and not jump at each others thoughts. (From my experience that never amounts to anything good). And let’s try to see things a bit differently. I acknowledge the fact that there are bits of truths in both sides and I strongly believe that fighting over this is plain stupid.

Let’s start by placing some ground ideas like:

-          “Measles exists.” It is not a made up disease to scare the people who don’t know any better into buying the vaccine.

-          “Measles kill people.” This is also a fact. The disease has the capacity of killing, so it’s serious. 

-          “There is no treatment for measles”. Fact.

If you don’t agree with these ground ideas please stop reading now, there is no reason for you to waste your time any further.

I’m a more pragmatic personality. For the decision of vaccinating or not, it all came down to numbers and probabilities.
 - Yes, vaccines may have devastating side effects.
-  Yes, the life threatening side effects of vaccines should be more medically documented. But if you know where to look, you will find enough information.
- No, no one thinks “Nice vaccine, let’s make it”. Vaccines are, at best, the better of two evils. 

So in the end, all comes down to which evil you consider greater and more probable: the disease or the risk of side effects?

In its essence, not vaccinating is not a bad idea. It’s just very, very wrong placed in time…or maybe, for some interested parties, very well placed in time.

Let’s imagine this scenario:

I’m a pharma company and I’m looking over my portfolio and I see that, damn! Even though vaccines are still bringing a good part of the pie right now, for my future estimations, things are not going well. Why? Simple! Because most of the disease I have vaccines for will be eradicated in 20-30-50 years.

F..ck!! that is not good. Lost source of income, bad-bad for business, something needs to be done. But what? We can’t just release a virus “accidentally” in the population. In this era of internet, someone will eventually dig deep enough and it will be traced back to us.. that would be even worse for business…No No No.. We need another solution. 

Then, the evil genius of the bunch comes up with a brilliant plan. How about we make people unwillingly work for us? Rule number one of mass manipulation: Always make the target believe it was their idea!
We “accidentally” slip some damaging information about vaccines in general. The idea will catch up and start spreading like wild fire.
1. The whole “back to nature” wave will be an advantage so we’ll certainly have those people on board.

2. Nobody likes pharma companies so even the ones that are not very natural living will still catch on for the simple reason that they don’t like us.

They will start arguing about the safety and necessity of vaccines and all of a sudden we will have a war, people against people. A divided crowd is always easier to conquer. But what they won’t realize in their struggle to find new arguments against each other is that they are both filling up our pockets. 

The ones that are vaccinating their children because they are paying and they ones that aren’t  because they are the ones who reset the clocks. They are the hidden weapon. Without realizing, they create the premises for outbreaks which will reset the clock on eradicating diseases. 

If in 50 years from now we could all have been vaccines free since the diseases would have been eradicated, now, we just reset the clock and we gave the pharma companies another 100 years of making vaccines.

As I said, not vaccinating is a very good idea, in about 100 years, maybe more seeing how things are going.

PS I heard a comment today; I don’t really remember which side she was on. She said that if you vaccinate you won’t catch the disease. Excuse my bluntness but you need to be extremely daft to believe that. The vaccine does not put a note on you indicating to the disease to go around you. Instead what it does is give your body some weapons (antibodies) to fight the disease which IF you are exposed to you will catch anyway.

So, bottom line: vaccines help you NOT DIE, nothing else.

Flight Experience with Ryanair

Remember those happy faces we’ve posted from the airport before leaving Bucharest? Well, forget about them. After that all hell broke loose.

We went to the boarding gate of our Ryanair flight. There were lots of people and a not so welcoming lady from the flight company who was commenting on what luggage people had. For example when we got in front her reaction that went with a sour face was “ah, look, a baby carriage”. As if she was suppose to carry the luggage herself to Athens.

Anyhow, she said there is no place on the plane for luggage and I cannot travel with it inside the aircraft so she took it. It’s not the first time they take the luggage because they have no space and they return it at the stairs of the plane, along with the carriage. So I wasn’t worried. 

I started getting though when I got off the airplane and only saw the carriage. I asked one of the handlers and he said they’ve sent them all to luggage claim area. We had another flight in an hour so time was short. I figured I could talk to them at the gate and they would put my luggage in this plane particularly since my luggage was a cabin luggage and it shouldn’t have ended up in the luggage claim area in the first place. I took Andreas-Rares and went to the other end of the airport where the gate of our next flight was. After queues, security checks, passport control I finally get to the gate and expressed my problem to one of the ladies there. 

She looked blank at me and she told me that there is nothing she can do. I should have taken my luggage and she kept insisting that Ryanair is a “point to point” company. By then I really started getting agitated. I’ve been on the road for 12h already and my nerves were not in the best of shape. With the last calm breath I had I asked her what exactly does “point to point mean” and she told me, with an increasingly risen voice, that I should have read the Terms and Conditions form the Ryanair site when I bought the tickets. That everything is clearly written there, Ryanair doesn’t deliver luggage to destination if you have more than one flight. You need to go pick it up and go to your next flight.  

“Ok, but that was my CABIN luggage that you people misplaced! What am I suppose to do now? “

“Talk to Ryan Air!”

“But YOU ARE Ryanair!” 

She continued yelling, telling me that I should have read the Terms and Conditions on the site, that it’s not their fault and that I should have brought my luggage with me.

Back to the real world, the choices I had were two and I didn't like any: either lose the plane and get the luggage or lose the luggage (with probably no chance of getting it back considering the level of professionalism I’ve encountered) and take the plane. 

I had Andreas-Rares medication from the medical trial in the luggage so choosing the plane was not really an option. 

At 10PM last night I was in the Athens airport, tired, with no other flight going to Thessaloniki that day, with a tired, hungry and already scared baby and with no one to turn to for help in the city. I broke down and cried. I just needed to let it out. Andreas-Rares looked at me and he started laughing. I must have been a very amusing site. Somehow that laugh got me back on my feet. 

I went and reclaimed the luggage, called my husband who found a buss leaving from to Thessaloniki in the next hour. Took a cab, went to the bus station and everything seemed to get back in track.

Everything was ok until we got into the buss and it started moving. Andreas-Rares has never been in a bus before. He traveled by car, plane, train but never by bus so the sounds the bus is making were totally unknown to him. He jumped up terrified 5 minutes after the bus had left and I couldn’t calm his screams for more than two hours. He was exhausted and so was I. He finally managed to fall asleep in my arms. That is the second time in his life he did that. The first one was when we ended up in the ER this summer with that bad case of vomiting. 

We got to Thessaloniki at 6AM after a total of 20 hours of travel. After this experience, one thing is for sure, Ryanair is not a flight company I want to fly again with.  

Some Lessons Learned the Hard Way

People say that the best way to learn is from other people’s mistakes. I must admit I was never able to do that. Unless I bump my head on the problem and feel my forehead hurt I can’t really understand the dimension of the problem, nor the way to solve it. So here are some problems that I bumped my head into during this last couple of years. Some, I must admit, left a mark. Some are so fresh they are still hurting. And some...well some it would have been nice to have been able to learn them from someone else...

Stand your ground!
 Here is the understatement of the day: “Being a special needs parent is never easy”. Yes it’s not, it’s damn straight hard. Sometimes you are so tired you feel you are burning energy directly from your soul, the only “power supply” left. You keep going because this is what needs to be done, because your child needs you and because you love him/her more than you love life. Here is the thing though about having a special needs child: Problems never end! You always need to be in standby, you always need to be prepared, and this continue surge of energy is draining you.  Don’t let it! Make being prepared a state of mind not a state of restlessness.  You will never be able to do anything but survive the day unless you get a hold on the ground beneath your feet.

Get rid of unnecessary emotional baggage. Yes it’s hard to make peace with the idea that your child was the unlucky winner of a genetic death sentence and it’s even harder to accept the fact that there is nothing you can do about it. But carrying that emotional weight after you day in and day out will not help anyone, least of all your child. Accept it and move on!

Start controlling things instead of letting things control you. Every institution we’ve met in regards to my son until now has based its reaction on the fact that we have too much on our plate and we won’t have the energy or the courage to go against them, that we will accept how things are because… “That’s how things are”, that we will complain about it to our friends and family, victimize ourselves for a while, get a couple of sympathetic shoulders to cry on and move on.  I am a firm believer that you should change what you can change and accept what you can’t change but this situation does not, under any circumstances, fall in the accepting category. This needs to be fought with a vengeance.
There are 30 million people living with rare diseases in the EU alone. That is almost half the population of France.  Can you even imagine the impact 30 million voices could have?
Everyone counts on special needs parents and patients to be quiet, compliant and retreated in their words. The best thing you can do is prove them wrong.

Don’t expect others to make the change you need.
Gandhi said it better and obviously more inspirational than me: “Be the change you want to see in the world”. I’m telling it as I see it. If you expect others to make the change you need, you’ll be waiting for a very long time. The system will not change easily and no one else, except yourself, will go the extra mile for you. I’m not being bitter, just harshly realistic.
So stop waiting around for decision makers, doctors, insurance companies or health care providers. I know you feel that after everything you’re going through you deserve some help, you deserve a break and you are right but the one person who can help you the most is you.

Don’t judge others by how bad your day was. Be sure that if you were to compare fairly, your best day would probably be anyone’s worse nightmare. You have a complicated and hard life. This is why, comparing others problems with your own is never helpful. Yes all those problems seem small and insignificant to you, yes they might have no long term impact like your problems do (You cannot compare spilling your coffee on your favorite shirt to your child’s unexplainable spasms that not even the doctors can explain) but you should not look down on “normal” people’s problems. You were a “normal” person once. It’s no one’s fault that you were upgraded to special needs parenting.

Don’t demand help, appreciate it! A helping hand, a smile, a good word… appreciate them. Don’t consider that you deserve everyone’s time, love and affection because of your situation. Be grateful when people chose to get involved and help you in any way they can even though they might have other things to do.

Trust your judgment. Read, research, ask, talk to specialists, therapists, doctors anyone you think will help you get a different perspective on things but in the end use that information to make your own decision. 

…and last but not least…

Never let go of hope! It’s not always easy to keep hoping when life hits you this hard but you should never let go of it. Hope gives you strength you never knew you had.