When it comes to raising kids, what you don’t know can hurt you…and them.  I see it with my own children.  When I fail to connect with their hearts and seek to understand what they are thinking and how they are thinking and why they are thinking in that way, I fail to fully understand them as people and our relationship suffers to some degree.

Little by little, there is a separation.

Little by little I lose their hearts and they seek comfort elsewhere.  They desire encouragement from sourced outside of the family.  They seek affirmation from others instead of from me.

That little by little shift over the course of 18 years leaves children and parents as far apart as I was from my parents at the age of 18.

I am certain they never saw it happening.  But one day they woke up realizing that they did not have the close-knit relationship with me that they wanted, yet they had no clue as to what went wrong.  What was the moment that turned the tables? 

But there was no single moment, there were a multitude of little moments over the course of a childhood.

But they gave me everything I needed.  They encouraged me in my activities.  They told me I could accomplish anything and never held me back.

And yet a relationship was not forged.  Oh, I’m sure they thought they were forging a relationship…mainly through activities, sports, etc, but in the ways that mattered, the missed it.

If you have PS, you are likely understanding what I am saying.  If you are a parent of a child with PS, you are either perplexed, concerned or confident that “this isn’t you.”

I have spoken with too many PS folks over the years who have echoed my thoughts: they have felt isolated and have felt alone in dealing with Poland Syndrome.  Too many of these conversations have taken place for it to be pure coincidence.  Too many of these conversations for it to be a matter of purely bad parenting.

Most parents think they do a good job.  All parents want what is best for their child.  The problem arises when a parent doesn’t know what is best in a certain scenario because it is a situation or circumstance outside of the realm of experience.  And most of the time the people offering advice have no direct knowledge either.  It is pure speculation based on what one can see.

Johnny is well adjusted.

Jennifer is such a happy child and she has so many friends.

Peter has great confidence.  His hand never bothers him.  If anyone ever says anything negative, he does a great job of shrugging it off.

If you put “Melissa” in each of those sentences, those are exactly the kinds of statements my parents either articulated or thought while I was growing up.

I sure appeared well adjusted and seemed a happy child.  I was, for the most part, except when I wasn’t.  I did a great job of putting on airs and appearing fully confident.  Any challenge or negative comment that came my way appeared to slide right off my back, no harm done.

But it was all a facade.  Some of it I knew was a facade at the time and much of it I could not recognize or articulate until much later in life.

Every funny look I received when someone first saw my hand seemed harmless on the outside, but killed me on the inside.  If my mom asked if that kind of thing bothered me, I’d be quick to shrug it off and say “No,” but the truth is that if felt like a thousand deaths.  It deflated me.  It embarrassed me.  It reminded me that I was different, and made me want to run and hide. But I never did because showing emotions was a weakness, so my logic went, and letting anyone know that this difference bothered me was the worst of all sins.

How I appeared on the outside and how I felt on the inside were two very different realities.  And no one knew.  I fooled everyone.  EVERYONE.  My brothers, my parents, my closest friends.  No one had any idea the agony I was often feeling, and until I began to open up to a few choice people in college and since, no one would ever have known.

The greatest skills I have developed as a result of being born with Poland Syndrome is the skill of putting on a mask.  And for you parents reading, I fear that your child is also developing that skill.

I sure hope not.  I hope that things are handled in your home in a more productive and beneficial way than they were in mine. (Not for lack of intent, but lack of knowledge)  But I fear that you don’t know what you don’t know…and what you don’t know can hurt you…and them.