A Day at the Park…

It’s a beautiful Sunday afternoon and we are at William Davie Park near our house in South Charlotte.  It’s been a while since we had Atticus to a park, but now that winter is starting to fade into the past, we are excited to get him out onto some swings and slides. Atticus walks around, swings on the swings, and even grasps the concept of tilting himself forward and backward to keep the swing going all by himself.  Brian and I slide with him down some of the bigger slides, but then we find a nice little slide suitable for a child Atticus’ height.  So Brian is up on the slide and Atticus keeps going up the stairs, down the slide, up the stairs, over and over again.  He loves it.  He’s happy and smiling.

Two older boys come over, maybe 6 years old and start playing on the slide.  One says to the other one as he looks at my beautiful baby, “what’s in his mouth?  It’s disgusting.”  And then they walk away.  Disgusting?  Is that really a word that was just used to describe my beautiful happy little boy?  My little Atticus with his gorgeous strawberry blond hair, sparkling blue eyes, button nose and rosy round cheeks.  Disgusting?  I felt like I had been punched in the stomach.  I felt like I had the wind knocked out of me.  I am used to the stares and long gazes geared at Atticus wherever we go.  I can handle those.  I am used to questions and curious kids and adults.  I have no problem with that.  But did a 6 year old boy just call part of my baby’s face disgusting?  Yes, he did.

I wanted to grab Atticus and run back to the car and go home.  But to me that would mean the boys won.  I was hurt and felt like crying, but I let Atticus play on the playground for about 15 minutes more.  We got into the car to go grocery shopping and I could have broken down in tears right there, but I pulled myself together.  I’ll cry later, I thought.

When I was still pregnant and when Atticus was first born, I was worried about what was wrong with him.  When we learned that he was just as healthy as can be, I was grateful, but worried about the challenges that he would face having a large protruding tongue.  I feel awful saying this, but I felt that we were being robbed of cute baby pictures.  I just wanted the tongue to be ‘normal’.

Atticus had more than 1/2 of his tongue surgically removed when he was 6 months old.  I’m sure that drastically reduced the amount of stares and comments that we get, but his tongue and lip are still much larger than a normal tongue and a normal lip.  I don’t know how else to spin the ‘disgusting’ comment into something positive except to say that at least we have come almost 2 years without ever hearing anything like that aimed at our child.  Most kids are sweet about it – just a little bit curious – but this was the first cruel thing that was said about it by another kid.  Way to go random kid at William Davie Park – are you proud of yourself for breaking that streak?

I know the kid was just a kid and I need to not be angry.  I just wonder why some 6 year olds don’t have the filter to know that something like that is wrong and hurtful?  I have always been so aware of my effect on other people.  Even as a child, I couldn’t imagine not knowing better than that.  Thank you mom and dad for teaching me to be sensitive to other people and non-judgmental about other people’s differences.

The ‘disgusting’ comment raised other issues in my mind.  For the most part, I go about my life being very positive, and in order to do that, you almost need to shut off  your worries about the future and almost naively believe that everything is going to be OK.  I don’t mean to say that only naive people think that, but there something a little out-of-touch-feeling about being so positive.  Have you ever heard that saying that depressed people have a more accurate view of the world than non-depressed people?  It’s probably true, but I cannot live my life being negative.  For the first time probably since Atticus was only weeks old, I thought about challenges that he might face in school when he is around a lot of kids.  What if he gets made fun of for his tongue and lip?  What if he has a speech impediment and gets mocked?  What if other kids don’t want to be his friend because he looks different?  What if he has to hear words like ‘disgusting’ hurled at him by other insensitive kids?

When we got home from the park and grocery shopping, I just kept looking at Atticus, thinking about how innocent he is in all of this.  Here is a little 21 month old toddler who just wants to play at the park like everyone else.  Yet, his face is being scrutinized and judged.  He’s not aware of it right now, but it’s not going to stay that way forever.  Right now, it’s more painful for me and Brian.

Atticus has such an amazing spirit and he is so happy and determined.  I will not let the meanness of other kids break his spirit.  My journey and goal is to raise my child to be strong enough to not care what others think of him, to be proud of himself and his differences, and to be sensitive to others.  I still think that there is a reason for all of this and that Atticus will be destined for great things.  All of these challenges will build his character.  He may need to overcome some extra things in life – but that will only make him stronger.

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.

Valentine’s Day 2014

It is Valentine’s Day, which I really don’t think is a big deal since it’s important to show others that you love them everyday, but it’s still fun to have a holiday or a reason to go out to eat.  I think back to last Valentine’s Day – our first with Atticus – and how we spent it at Levine Children’s Hospital in Charlotte.  It was the first time Atticus was sick and he had bronchiolitis which swells the bronchioles that lead to the lungs and can be really serious in kids under age two.  Since he has a trach and was only 9 months at the time, his pediatrician admitted him to the hospital especially since his 02 saturations were low.

I remember thinking, OK this probably isn’t that serious, but when they told me we had to go to the hospital via ambulance, I realized that it was more serious than I had thought.  I thought we would just drive him over to the hospital.  That was my first time in an ambulance – another first that Atticus would experience way before his mom.  He was 9 months and I was 30.

My parents were visiting us from Pennsylvania for the week.  They arrived on a Saturday morning and we went out to Concord Mills and to Cabo Fish Taco on Saturday evening.  By the following Tuesday, Atticus was in the hospital and on oxygen.  Those days that he was in the hospital, we joked with my parents how he was just fine on Saturday when the picture below was taken and we jokingly referred to that picture as “simpler times”.

At Cabo Fish Taco 2/9/13

At Levine Children’s Hospital 2/14/13

The hospital stay cut into my parents trip a bit, but what are you going to do?  At least they were there to help and support us, and got to see another North Carolina hospital :).  Atticus spent his first Halloween in a hospital, his first Valentine’s Day in a hospital, and almost his first Thanksgiving.  It was a hectic first year, but we made it through.  Things are looking a lot better this Valentine’s Day.  I don’t think we are going to fight the crowd to go out to eat but we may do a family night at Whole Foods, which has become a new favorite weekend outing for us.

If you’re wondering how grocery shopping can be a fun family outing, then you must not have ever been to a Whole Foods before.  That is all for now.  Have a great Valentine’s Day and don’t eat too much candy!