Kennedy’s Cause

Kennedy is a 16 year-old girl who was born with lymphatic malformation.  She is an inspiration and through her non-profit organization, Kennedy’s Cause, she is raising awareness and funds to help improve research and treatment options for others with lymphatic malformation.  The message behind her cause is ‘Let your inner beauty shine’.  She was recently featured on Katie Couric’s talk show.  Even Katie Couric, who I’m sure has met tons of people, says that she had never heard of lymphatic malformation before meeting Kennedy.  I am so happy that Kennedy was featured on this show, first to bring awareness to LM, but also so that people can see that individuals with lymphatic malformation can and do lead happy and productive lives.  Kennedy is an accomplished violinist and volleyball player.  Nothing stops these kids – at an early age they learn to be strong and push through obstacles that others will never know.

I am happy that lymphatic malformation is finally getting some awareness.  Click here for the video of Kennedy on Katie Couric!

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.

Shame on You, DirectTV

I am so glad that I am NOT a DirectTV customer.  If I was, I would have certainly severed ties with them by now.  I don’t watch much TV, and if I do it is usually Netflix, so I never see any commercials.  However, it was brought to my attention a few days ago that a new commercial by DirectTV shows a man getting stung by an insect and his face swelling up on one side, similar to the way that LM can present itself.  The man in the commercial can’t get a decent job because of his appearance and goes on to be mocked and made fun of by a group of children.

Even if the people at DirectTV were unaware of LM and the fact that some people actually do look like this because they are born that way, the commercial clearly presents a man being made fun of because of the way he looks.  This is so not OK.  The swelling of the man’s face so clearly mirroring a person with LM makes it not only not OK, but extremely offensive to anyone with LM, including family members of those with LM.

As a parent of a son with LM (his presents mostly in his tongue and lower lip) it is my mission to make sure that my child is not treated differently just because of the way he looks.  We parents have to be so strong for our kids.  We can’t get upset that no matter where we go, we see people staring at our kids, wanting to ask “What’s wrong?”.  Other kids are curious, and for LM families there’s really no such thing as just going out to eat, going to a grocery store, going to a park.  We have to be prepared for the stares and the questions.  It seems like no one has ever heard of LM before so it becomes our burden (and one that we take on wholeheartedly) to educate the world, so that our kids aren’t looked at like outcasts.

We go about our days, strong for our kids, answering the questions of strangers, explaining delicately to other children why our child’s face looks different.  We explain that our kids are just as smart, just as beautiful, just as curious, just as silly as other kids.  They are not lesser just because they happened to be born with a condition that makes their face look different from what is considered ‘normal’.

And then comes this insensitive, atrocious commercial that I certainly will NOT post on my blog because I don’t want that garbage on here.  First of all, it is NEVER OK to make fun of someone because they are different.  I’m talking race, gender, sexual orientation, disability, etc.  It is just never acceptable to make fun of anyone, or imply that because someone might not fit in with the majority, that it is OK to make fun of them or imply that they won’t be successful in life.

The people at DirectTV probably know better than to, say, have someone being made fun of in their commercial for being gay or for being a cancer patient.  They probably don’t even know that LM exits, but that doesn’t excuse the horrific nature of their commercial.

This commercial makes me realize that more awareness needs to be given to the condition of Lymphatic/Vascular malformations.  The kids and adults who suffer from LM are just like you and me. They might not look exactly the same as us, but that is OK.  They are unique and don’t dissolve into a crowd the way the rest of us do.  They are to be celebrated, for being so strong, and for enduring all that they have to endure.  They go through countless surgeries throughout their lifetimes, in an effort to improve functionality, but unfortunately also to reduce the impact of the emotionally draining effects of looking different.

My son, who is less than 2, has had 4 surgeries so far, and another coming up in less than a month.  He breathes through a tracheotomy.  All because he was born with a tongue and lower lip that are bigger than normal.  He should never be made to feel like lesser of a person and should never have to endure the mocking and being made fun of that is shown in the DirectTV commercial.  If anything, he should be praised for overcoming everything that he has overcome in his less than 2 years.  He will grow up to be stronger and more unique than most.

I have been fortunate enough to have joined several LM groups on social media, and there I have met some of the most dedicated and hopeful parents I have ever seen.  Their responses to the execs at DirectTV have been so intelligently and strongly written that they have made me cry.  I give kudos to all of the LM parents out there who fight everyday to find the best medical treatment for their kids and who advocate for their children to be treated with the respect they deserve.

Let’s keep going LM families.  This commercial has made me realize, that although we have come a long way, there is still A LOT of work that needs to be done concerning LM awareness.