A Picture Leads to A Thousand Words

So, picture this.  You are in a meeting at work and a fairly new mom whips out her booklet of recently taken professional photos of her children.  The booklet gets passed around the table and everyone ‘oohhs’ and ‘aahhs’ at the cuties.  Since I am a mom too, I decide that I too should show off my little cutie, so I grab my iPhone and bring up a recent picture of Atticus sitting in his high chair eating.  It gets passed around.   Some at the table already know about the tongue and others don’t.  For me, there is no such thing as just showing a picture of your child.  You always have to be prepared for the confused looks on peoples’ faces and you must quickly follow-up with an explanation of what is going on.

Now, Atticus’ tongue and lip have come a long way from when he was born, but they are still noticeably larger than normal.  One colleague asked, when the iPhone got to him, “What is he doing?”.  It was pretty clear that Atticus was sitting in his high chair eating, so in my head I translated my colleague’s question to really mean, “What is going on in his mouth area?!”

I quickly began my speil concerning Atticus’ condition – one that I’ve given many times before and one that I will continue to give.  I am happy to do it though.  People are typically very interested, as they’ve never heard of lymphatic malformation before.  People usually ask all sorts of questions and are happy to hear that Atticus is a smart and very healthy kid, who just happens to have a big tongue and lower lip.  *In this particular meeting, people were so interested that I ended up drawing the diagram of Atticus’ tongue reduction surgery – a picture I’ve drawn many times before.

It’s an interesting phenomenon though – having to basically share the medical history of your child every time you show his picture to a new colleague or friend, etc.  Other parents just show their kdis’ pictures and the ‘oohhs’ and ‘aahhs’ come rolling in, but then the moment has passed.  When I show a picture of Atticus, people also get a short medical lecture, they get to learn about a condition they’ve never head of before, they hear about surgeries they didn’t even know existed, and they get to hear about a little boy who has overcome a lot in his life, but who is thriving.

It’s not just a quick look at an iPhone or a quick flip through a photo album when it comes to Atticus.  He’s a complex and memorable little boy.  It is like he demands the floor.  We end up talking about him for a longer amount of time because there’s sort of a lot to cover, if people really want to know.

I don’t wish rare conditions on anyone.  I just think there’s something powerful about Atticus and his differences.  He’s not like everyone else. He has some things that really set him apart.  I’m still not sure what challenges those differences are going to bring as he gets older, but I’m slowly learning that those differences truly make him special, memorable, and a stand out kid.  I never ask why this happened to Atticus – I really just never think like that.  I look at the good things about his LM.  This way of thinking is something we need to hold on to so that Atticus has the strength and confidence and pride to overcome all the challenges that his LM may bring him as he grows older.  I have no doubt that he will excel at this.  I just believe in him so much.

It is a process though and one that needs to be worked on.  My overall positive attitude is a huge part of maintaining a positive attitude toward Atticus’ LM.  Everyday, you make a conscious effort to behave a certain way, do certain things, and think certain ways.  Yes, it may have been easier to not whip out my iPhone and spare myself the questions, confused stares, and explanations, but that is not the road that I choose in life.  I am so proud of Atticus and everything about him, and that includes his larger than normal tongue and lip.  I’m not bothered by the questions or stares, but instead I think it’s pretty cool that I get to educate others about a rare condition and tell an inspirational story about a child just by whipping out my iPhone.