Nevus

I vividly recall when my children were growing that I would visit my parents home in Redwood City California.  I remember how my Father would have a total personality transformation the moment my daughters would walk through the door.   Dad told me more than once, “Rich it doesn’t matter how bad your day is going, when a grand-daughter walks through the door and gives you a smile your whole day instantly changes for the better!”

I was on a business trip, staying in one of the most uncomfortable hotels that I’ve ever stayed at in my life in the city of  Timişoara, Romania.  I’m sure, that if you look it up in the travel guides there’s a special reference to the “don’t visit here” section of the guide….especially in November.  I was laying on my bed, wishing there was a minibar (there wasn’t) or even a bottle of water (there wasn’t).  Since Romania has no public smoking restrictions, the thick layer of cigarette smoke that drifted through the hotel was doing it’s part to add to my discomfort.  It was late and back home in Livermore, California my daughter Alyssa was in labor with her first child.  Being a high level techno-geek, I was tuned in with the IP Phone I had installed on my notebook computer and was getting the play-by-play from my wife Jennifer.  Even though I was exhausted from the day’s flight the adrenaline from the anticipation of the birth of my first grandchild was keeping me wide awake and attentive.    As the moment grew closer Jenn and I hung up with the agreed upon strategy that as soon as the baby was delivered I would get an immediate phone call.

After a few short minutes…the phone rang again; it was Jenn with the news!  On the evening of November 14, 2007 my daughter Alyssa and her husband Chris gave me the most precious gift imaginable… a beautiful baby grand-daughter!  Alinea Rae (Linny) was welcomed into this world early in the evening local time; I was ecstatic!  As we chatted on the phone my joy subsided somewhat when Jenn paused for a moment and said  “Rich, there is a little problem.”   After a longer pause, Jenn said the baby has a “problem with her leg…..”   I asked her what that meant and she replied that she really didn’t have details but understood it to be mostly cosmetic and that the Doctor didn’t seem too concerned.  I was at a loss as to how I should respond.  Everything else was perfect…the breathing…ten fingers ten toes…..lots of hair (a Carlson trait).  But Jenn said her leg was “concerning,” she didn’t offer any other information.  It is important to note that Carlson’s are fixers…they like to fix stuff, even when stuff doesn’t need fixing.  It’s in our genes!  My first instinct was to fix this…to be with Jenn, Chris (Linny’s Dad) and Alyssa and make things better.  But I was half way around the world and that was not an option.  What I learned much later was that Linny’s leg blemish was not an easy fix, and even more important what Linny soon taught me was that it didn’t need to be fixed.

My grand daughter Alinea Rae, who as my father promised, brings a smile to my face just by entering a room. On her new bicycle, Christmas 2012.

My grand-daughter Alinea Rae, who as my father promised, brings a smile to my face just by entering a room. On her new bicycle, Christmas 2012.

In the months that followed our family became educated on a rare condition known as giant congenital melanocytic nevi (CMN, or just NEVUS).  Nevus is a condition where a large part of the body, in the case of Linny her right leg from the knee down to the top of her foot,  is covered by a large birthmark or a mole.  It’s a condition that affects thousands of people world-wide and while some cases are correctable with extensive surgery, many are not.  So the issue becomes one of what can be done to decrease the risk of related side diseases such as melanoma and what can be done to reduce the discomfort of the sensitive areas that are prone to tears, scratches and abrasions.  That’s where one of my top organizations comes in.  The Nevus Outreach program has been instrumental in assisting Alyssa and Chris on the special care that Linny needs going forward.  When I say special care, I mean issues such as reducing the tendency for open wounds that kids get when they fall and how to lower the discomfort as her skin adjusts.  Adjusting to the psychological effects of having this condition is another issue where peer support is extremely helpful.  The people in this organization are fabulous and work together using their own experiences to support one another.  Additionally, the Nevus Facebook Page has been extremely helpful in understanding the effects and treatments for Nevus.  The people in that Facebook group share experiences and are able to ask and offer advice.   Thank heavens for these organizations and the great things that they do.

Linny’s leg is but a small blemish compared to her bubbling outgoing personality.  At first, I was so afraid what others would think…would I explain her blemished leg to others?  I have found that I simply tell people that Linny has Nevus.  I then explain to them a little about Nevus and the risks involved, that it is merely cosmetic but we watch her due to the cancer risk.  Over time, I have found that Linny is just fine with her leg, rarely does she even mention it and I have gotten quite comfortable discussing it with family and friends (even strangers)!  I have found as well that others are extremely interested in the subject since few have heard of Nevus.  I’m sure that as she matures Linny will have times when the stares…the questions from other kids (and even adults) will become somewhat of a challenge.  But I’m just as sure that Linny will handle those situations with grace and confidence.  When Linny was born, the movie “Finding Nemo” had just been released and we decided that what she had was a “lucky leg.”   And that it is exactly what it is….and we are lucky to have Linny!  Linny has a smile that can light up a city and a disposition that is amazingly confident…and that is the stuff that matters.  I have no doubt that as she matures she will be the comforting element to others with this condition and seeing that spirit in her makes me happy!   Thank goodness for kids like Linny who are born with less than perfect bodies.  Thank goodness God has put them on this earth to help others (like me) understand that beauty comes from within!  My father was right, it doesn’t matter how bad my day is going…the instant my grand-daughter walks into my living room, my day instantly gets better.

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