Beauty Really Is Perception

Although Jameson is only 2 months I have done enough reading about what other parents have experienced living/learning/growing with a child with a disorder like this.  I have read about what it feels like to have people stare at your child;  I have read about what it feels like to hear other people say things about your child’s appearance.  So, I can’t say I was surprised that it happened to me.  But you all know what I’m talking about – the moment that you have tried to prepare yourself for because you knew eventually it was going to happen compared to the moment it actually happens.

Feeling something for the first time, no matter the knowledge beforehand,  is pretty much indescribable.

I can honestly say that I have made a point NOT to shelter Jameson.  I want him to grow up feeling he was treated like any other;  I want him to grow up feeling like he can do anything any other person can do;  I want him to grow up and know there are no limits, no matter what.  So, I take him everywhere I go.  And really that isn’t much, but I take him everywhere I would take Jackson – which mostly ends up being Walmart or the Commisary, but that is simply due to his age and to where we live right now.  (Farmer’s Market’s will be open soon, so that’s next on the list).  But, we had our first encounter…

I can’t say it made me mad, it was so innocent.  But like I said, when it’s the first time, it always feels different.  Anyway, I was holding Jameson and a little girl came over and asked me what was wrong with his eyes.  I told her nothing was wrong with his eyes, that’s just the way he was born.  She told me she didn’t like him, he doesn’t look like other babies.  I had no response.

This little girl didn’t make me mad.  She is so innocent and doesn’t even understand.  What made me mad was myself.  I didn’t know how to react or what to say, and that completely frustrates me.  And it wasn’t out of embarrassment or ashamement that I didn’t know what to say.  I didn’t know what to say because she was right — and wrong at the same time.  No, he doesn’t look like other babies, but that doesn’t mean she can’t like him.  And this is probably exactly what I should have said, but in the heat of the moment I was flustered, and I also have this apprehension about over stepping my boundaries with other peoples children.

So, this entire week I have thought about how I need to and should confidently react when this happens again.  I want to be able to gently acknowledge what a child (who is not mine) is saying while conveying the reality of what their words can do to another;  and through all of this maintain dignity and integrity for Jameson.  I’ll be honest, I haven’t found answers; so this is a path I will follow until I do.

This brings me full circle a week later.  Today Jameson had a doctor’s appointment with his pediatrician.  I’ll be honest with you, sitting in the waiting room at the pediatrician’s office always has my heart racing.  It’s not like going to a specialist because there you’re surrounded with other kids with special needs and actually feel normal.  Going to the pediatrician you’re surrounded with normal kids and feel you stick out like a sore thumb.  Especially ours – after you check in at the desk you have to dress down to nothing but diaper in the waiting room.

Anyway, we were sitting there, and there were 3 kids watching the TV.  Their mom was in back with the Dr. with her little baby as she left her oldest (11 I think) to watch the younger 2.  There we were – Jameson pretty much naked and myself- and this little boy comes and sits right next to me, I mean right next to me – he got all up close and looked closely at Jameson and said –

‘Oh my gosh!  He’s sooooo cute!’

My head cocked and I looked at him.  Was he being serious?

I looked at his inquisitive face and knew immediately he was.  I told him thank you with a huge grin and asked him how old he was – he proudly said ‘4’.  His sister came over and told me she was 6 and then echoed how cute she thought Jameson was as well.  The 4 year old asked how old he was and I told him 2 months – then the oldest chimed in and said he loved babies this small.

As I drove home this afternoon I couldn’t help but think about these children.  Don’t get me wrong, I think my sweet lil Jimmy is as adorable as can be – but I am his mama and I am a little biased, lol.  But I also can’t hide behind a rock and I know he looks different.  So, what was the difference between a child thinking Jameson looked weird from one thinking he was cute?

I honestly have no idea.

My only conclusion is that beauty really is in the eye of the beholder and maybe we just see what we want to see.

I never saw the mother of these three children, and she will never know who I am or who Jameson is.  And neither her or her children will know that this afternoon was something I will probably remember for the rest of my life.

* Side Note:  I’m sure you’ve noticed I try to post a new picture with each post – Here is lil Jimmy with what is currently his favorite toy.

5 thoughts on “Beauty Really Is Perception

  1. Kids are amazing. Some find differences in others as a threat to their sense of security, while others see those same differences and embrace them as something unique and to be celebrated. Your feelings are totally appropriate as you too are learning as you go. It would be interesting for you to hear from other mothers in the same situations. love dad

  2. In ME, while at the store, I was talking to a former patient who had gone through our Rehab program. A little girl came up to his wheelchair and announced that he had funny face and talked funny too. Her mother started to apologize for her daughter and saying she was sorry she was rude. This gentleman stopped the mom and said her daughter was only stating the obvious and that her curiosity about people/things that were different was great and he loved to respond. He welcomed the opportunity to tell people about what had happened to him. He said adults often turned away making him feel that he was invisible and no longer a part of life Anyway, he said, let her ask and question everything but simply teach her to say, “Excuse me but why is your face different and your speech funny?” So, that long story is to say your responses will get better and faster each time and you may find that you will enjoy the teachable moment.

    1. You know I have actually noticed that already – about adults turning away. Especially because he’s so little and everyone always wants to say their Ooo’s and Aaah’s when they see a newborn, and I can always see that moment in their face. It reminds me of the Sienfeld episode with Elaine and “the beautiful baby”. I would much rather have someone ask me in a polite manner about Jameson’s features. A part of me wants to preface any encounter with someone that wants to see Jameson with – “He has Pfieffer Syndrome, so he looks different”, but that just doesn’t seem fair to Jameson because I’d be letting the syndrome define him rather than him defining himself. But, I do hope I get better with my responses – so I can also teach both boys how to response themselves when they are in the same situation.

  3. My s-i-l was just telling me about this; she has two children with cranio of some sort. And a little boy told my niece that she had funny eyes; she’s 4 so this hurt her feelings. My husband (also with cranio) still remembers people commenting on his eyes in a negative manner. Such a hard thing to deal with…

  4. Your sweet little baby is beautiful, and although he was born with unique features, I’m sure I don’t have to tell you God sent him to you with a purpose. Thank you for a wonderful blog about life and the unique challenges we face as parents, some a bit harder than others. I appreciate your insight in how to appropriately guide our little ones to make everyone feel included and special.

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