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.

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?

Memorable Quotes from Doctors

Eons from now, when my rage, frustration, disappointment, desperation and all that nice set of fulfilling sentiment would have settled a bit I might even consider these funny. Let me know which is your favorite line. Having lived them all, they are all my favorites.

    1.    Make another kid. Who is going to take care of this one when you die?

2.    Aha, so, he has this Syndrome Aaa..lan-Hern..rndon-Dudley, what do you want from me?

3.    Make another kid, I’m sure! I feel it! That it’s going to be healthy.

4.    You are making TWO kinds of physiotherapy? Pff!!You don’t know anything

5.    You are not to open your mouth while in this office!

6.    You should be a Mother, hold your baby in your arms and love him. That is all you need to do, not go around reading on the internet and get ideas.

7.    You are both irresponsible! You should not go around changing doctors! You should stick to YOUR doctor and TRUST him.

8.    Don’t worry, your child is fine! He’s just lazy.

9.    Let’s not make the genetic tests now. Let’s wait maybe he’ll grow out of it.

10.    This is the first case I see of this syndrome and I hope to God I don’t get to see another one in my life.

11.    I had another case of AHDS. He lost contact with the world and died at 9 months old. How old is your son? 

12.    Your baby’s ears are fine, you’re the one who is stressed over nothing and stressing your baby unnecessarily. (12h later we were in the ER, our baby had otitis)

13.    You are not allowed to be in the same room with your child when we are taking blood. You are stressing the nurses.

 This is not a complete list as you might imagine, merely a list I made up off the top of my head.

Hope as a High End Commodity

These past few months have been tough, with ups and downs, mostly downs but this is not what I want to tell you though…

There is this group of parents and relatives of children with AHDS. Of course, the first thing I did was to start asking around, trying to find out as much info as I could. Ok, there is no treatment but maybe there are still ways of improving. I cannot just give up. That is not acceptable in my book.

I was surprised by the lack of interest and ideas in our conversations and started wondering why. I mean… we are all in the same boat. We should work together and try to find solutions for our children. We should brainstorm and push decision makers and DO things.

I first got a glimpse of what’s really happening while I was talking to one of the mothers and she told me that she cannot go through everything all over again. The whole process: hope, lose hope, scrap for the tiniest bit of hope, nurture it, grow it and then lose it again and then again and again…and again.
I saw and understood her point but I couldn’t relate to it. So I gave up trying to find information from other parents and started searching on my own. From physiotherapy techniques to nutrition researches, to drug development research, to drug delivery via nanosystems, to intrathecal implantable systems, I dug through it all, I contacted people; sometimes I asked more questions than I should, sometimes I annoyed people but I kept pushing…hundreds and hundreds of hours of obsessive reading.
And this was how the process went: I would find information of value, get my hopes up, dig some more, find a flaw to the initial idea, and get my hopes even lower than before. And this carousel went on and on and on…

An example: I found a research that was describing a way to bypass the blood-brain barrier. It seems that other researchers have seen value in researching this also. It wasn’t meant for this syndrome but it doesn’t matter. There were people looking and succeeding to do this. I was ecstatic…Started jumping up and down. I made new contacts; got people together talking, maybe pushed a bit here and there, get my hopes up to the roof.

One fine day, I read another research that didn’t even have anything to do with our case. In a “by the way” kind of phrase there was an information that shattered every small piece of hope I could ever try to salvage. Thyroid hormones NEED to pass through the blood-brain barrier in order to reach the part of the brain where they are useful. Through the other ways, even if the hormones bypass the BBB they don’t have access to the part of the brain that needs the thyroid hormones.

In that moment I could literally hear my hopes shatter.

The more you hope, the harder you fall. But then again, hope is the only thing that keeps us going and when you free fall like that, scrapping for the tiniest piece of hope in order to just get you through the day becomes harder every time.
You start thinking that you cannot afford to hope for the best or even for the half best because picking up your pieces after you break takes time and energy and you have neither. You need hope but not more than a little, just enough to get you through the day.

And this is how you start sabotaging yourself and your opportunities to hope for the best again.

Rares’ blood tests came out last week. For the first time ever his indicators were within normal range. You wish you could hope for the best, if only for a short while but you don’t have the strength to pick yourself up again piece by piece…so..you don't.

Now, I’m doing more than just seeing the other mother’s point. I’m living it.