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.

“Your Child Is Too Young to Walk”

Thessaloniki, 12^th of April 2016. Today we were called to meet the official committee in order to evaluate Andreas-Rares’ special needs so that we may obtain some form of support from the state to help with his therapies because, at this moment, everything we do for him is exclusively on our money and the money from your donations.

The meeting with the committee lasted less than 5 minutes time in which none of the three members examined Andreas-Rares in any way. They asked if he is walking, the answer was obviously “no”; if he is sitting unassisted and again the answer was “no”. And then, without looking over the pile of documentation and medical papers that we provided and without asking any more details, they reached their their final assessment: 

“Your child is too young to walk. Come back in two years.“

We are definitely going to make an appeal. Unfortunately that is going to take time, time equals expenses so we can just say that we are running out of...time.

Even though I promised I will not allow myself to get dragged into that anger swirl that tormented me for months I think today is that special day for a major relapse!

What is Rare Disease Day?

“Do people actually celebrate having a rare disease?”

 If you asked yourself this questions, don’t worry, you are not the only one. This is one question most people that are not affected by a rare disease have in mind when thinking of Rare Disease Day “celebration”.

If you think of “celebrating” as the birthday party you attended last week or the winning of the world cup by your favorite sports team then you are totally right to ask this question. Because celebrating a birthday and celebrating Rare Disease Day have as much in common as a sun explosion and a toothpick. I don’t know anyone and for that matter I don’t believe there is a person affected by a rare disease on this planet that celebrates the date they found out they were sick. So, “celebrating” in this context is used more with the meaning of “marking the event” or “making the event count” but that sounds long and boring so “celebrating” will have to do.

 “Celebrating” Rare Disease Day is meant for both people affected and not affected by rare diseases. First and foremost, this event tries to make people more aware of the realities of rare diseases.
People with rare diseases are invisible to our society. This is a fact unfortunately and this is why this event cries out:  “Look at us! We exist! Choose to see us!”
It also tries to inform and correct misconceptions like “people affected by rare diseases are few since rare diseases are…well…rare”.
Last but not least, the event tries to get people involved in finding cures or in improving the quality of life for patients with rare diseases in general.

For people affected by rare diseases, this event exists to create bridges, to help patients connect and understand they are not alone, to break isolation. Isolation is the most frequent phenomenon in families with rare disease children. The pain in so strong and so much that people affected feel they can only survive it by absorbing it and lock  it inside themselves. Either they have their friends and family close or not, isolation will set in and it will become a second nature. Breaking isolation is the hardest thing to do after accepting the reality of the disease. This event tries the help people affected by rare diseases to find their voices again by sharing stories, experiences, even pain.

Concluding, the answer to the question from the beginning of the article is “No”. No one celebrates having a rare disease. What we do celebrate and this event is the best occasion for it, is life and the minuscule victories that we achieve over the disease, no matter how scarce.

Rare Disese Day is celebrated every year on the last day of February and is a EURORDIS initiative. This year, Rare Disease Day is on February 29^th 2016.

Calling your monsters by name

Monsters are always scarier when they are unnamed, unknown, hidden in the shadows. But what happens when you can call them by name? 

It took us a lot of months to find out who our monster is and what is its name. When we finally did, we were devastated thinking of how this monster will affect our baby, of how many opportunities he will miss, of how much of life he will miss. 

That’s the thing about monsters you see, they are scary…But the more you fear, the more you question your decisions, the more paralyzed you get by it, the less you do about it. Fear holds you back and eats at you slowly and deadly.

All of those dreadful scenarios we imagined, all of those things going from bad to worse, all the missed opportunities of life, they all have a probability of happening and I accept that. But I refuse to help the odds of these scenarios by fearing them and by somehow making them self fulfilling. 

Don’t get me wrong, I’m not saying we have a shot of defeating this monster. It would be delusional to rely on miracles but now I don’t fear it anymore and I can go the extra mile. 

Sun Tsu once said that a conquering army should always leave their opponents a way to retreat. That way when put to choose between fighting to the death or saving their lives, they will choose their lives. Otherwise, they will have nothing to lose and fight with devastating force and determination.

The one who taught me this life lesson is the best and the most surprising teacher I have ever had, my son. 

Last week I let him roam around the balcony on his walker. He is active but obviously nothing like the kids his age so I didn’t really take any precautions to hide or lift things from his way. I had just finished cleaning the balcony so the chairs were still on the table. The thought of what could happen didn’t even have time to form in my mind because I heard a scream followed by a cry and I saw him literally running away from the table. 

I ran to him and found him with a mouth full of blood and crying with sobs. Thankfully he had no chipped teeth and no bruises. Just a major scare and a split lip. He apparently reached for the chair that I left, unsuspectingly, on top of the table and dragged it down on top of his walker. 

After I calm him down I started shaking uncontrollably, thinking of what could have happened and, like in an absurd theater play, crying with joy for his achievement. 

It was then that I realized how low my expectation of him were and how these expectations mirrored not his potential but my fears. 

If he has the courage to challenge the odds who am I to hold him back?