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.