Sunday, September 30, 2012

Grateful for lazy weekends

As a mom of three little boys - a Pre-K and Kindergartner and a newborn - life has been a bit crazy lately. We've had to adjust to a new schedule of waking up every morning at 6:45am to get Ethan, 5, out the door for school while juggling the logistics of feeding Hudson (2 months) at just the right time and making sure Aiden is either dressed for school too (Tuesdays and Thursdays) or ready to walk with us to drop Ethan off.

I want to be the "do it all" type - PTA mom, Susie homemaker, volunteer, advocate for my kids, etc. and I'm grateful that I am able to "stay at home" to take on these roles. My days are filled with running around, making appointments, keeping up the house and trying to make time for a shower now and then. I love it, don't get me wrong. But sometimes it can be tough.

As the weeks come to an end, I glance at my calendar to see what is on our agenda for the weekend. Often times it is jam packed with the fun stuff we can't do as a family throughout the busy week. Going to community events, heading out to the park to enjoy the weather, squeezing in as much as we can before the daily grind starts all over again on Monday.

We love having fun and doing things together, however sometimes I wonder if we try to do too much. Which is why the few times a month when the Saturday and Sundays are wide open with no plans scratched into my planner, I breathe a long sigh of relief. Ahhhh. No obligations. No appointments. No schedule. No reason to get out of our pajamas if we don't want to. It's wonderful.

This was one of those lazy, rainy, stay at home and read books on the couch weekends. And I am so grateful it was.

Thursday, September 27, 2012

From Behind the Tree

When I was four years old, one of my best friends was an enormous tree, which was in the center of our front yard. I can still hear the sounds of the wind blowing through the branches and rustling the leaves. The tree was a strong fixture in my life and never made fun of me for being different.

 I lived with my family next to an elementary school, and a lot of children would pass by the yard on their way to school or other activities. I had not started school yet, so I would often play outside in an imaginary world where I was in control.

 I developed a keen ear for impending danger. Whenever I would hear the sound of children approaching, I would run behind the tree and stand quietly until the children had passed. I was different from the other children and was often teased about how I looked.

One day I was caught off guard and didn’t hear when some children approached. I ran to get behind the tree, and a boy saw me running through the yard. He jumped the fence and yelled that I could not hide from him. When I saw him jump the fence, I immediately left the tree and tried to get into my house. I made it up three of the steps before he pulled me from behind and punched me in the stomach.

My mother heard my cries and helped me up the steps into the house, where she held me until I stopped crying. I remember her telling me that life isn’t always fair but that I was safe.

Now, 29 years later, I still often visit that child under the tree. I tell him not to worry because his life will work out and although the road may be rocky at times, there are people who will always be there to help. Most important—I will never let him down or let him be left alone.

In my opinion a child should be allowed to hide behind trees as needed, but a strong sense of independence should be fostered in the child so that he/she can eventually stand independently of the tree and interact with other people. A balance is needed between the relief of “crutches“ and the pain that is necessary to move through for growth.

Guest Blogger Stephen Wright is 43 years old and works in San Francisco at Wells Fargo Bank. Stephen is a published writer with two articles published in PARADE magazine. He has also been featured in a Canadian magazine about craniofacial issues. Stephen has Crouzon’s Syndrome and has had 23 surgeries which includes complete reconstruction of the face as well as skull restructuring.

Monday, September 24, 2012

Grateful for Siblings

This week, it's easy to think of what I'm grateful for: my super sib sister, Emily. Tuesday is my sister's birthday and I am so proud of the woman she's become. My sister is the one person who I can call in crisis mode who will talk me through it with the advice of someone who thinks like me when I'm not in crisis mode. That's sister speak for “she gets me”.

She’s my little sister by five years, so growing up, I tended to protect her; I was her "junior mother" who made sure she wore her coat on the playground (our classrooms were 5 doors apart) and taught her about telling time using "Rugrats," the 90s television show. I also made sure she had a healthy imagination... since I may or may not have tortured her by pretending I could turn into a vampire named "Vampira.”  

But I wasn't the only one who was taking care of her sister. My sister was there to show me how to keep things in perspective, even from a very young age. Her silly sensibility coupled with her fierce attitude and rebellious streak kept life fun, exciting, and challenging. She seems so carefree, like she doesn't worry like me ... or my mom ... or my grandmother. I don't know if she missed that trait in the genetic roulette or if maybe she does worry like we do, but channels it into humor and play and being an excellent listener.

Regardless of the character of your super sibs or the role they play in your life (younger or older, sister or brother), I'm sure that my CCA friends would agree, siblings just "get it." They know how to show compassion without pity, worry, or burden, and they know when to send you a funny card or punch you in the arm.  They know the difference between when you need a tub of chocolate ice cream and when you really need a shot of Patron!

Happy birthday, Emily, and thanks for being awesome. Keep it up ... or I'll kick your butt, anyway. :)


Thursday, September 20, 2012

A Mother's Love has no Limits

One of my favorite scenes from the book Wonder by R.J. Palacio is from Via, the older sibling of Auggie who has a craniofacial syndrome.  Here's the excerpt from Via's voice...

"Once, I got up in the middle of the night because I was thirsty, and I saw Mom standing outside Auggie's room.  Her hand was on the doorknob, her forehead leaning on the door, which was ajar.  She wasn't going in his room or stepping out:  just standing right outside the door, as if she was listening to the sound of his breathing as he slept.  The hallway lights were out.  The only thing illuminating her was the blue night-light in August's bedroom.  She looked ghostlike standing there.  Or maybe I should say angelic...  I wonder how many nights she's stood outside his door.  And I wonder if she's ever stood outside my door like that."

How many nights have you stood outside the door of your craniofacial child's room and done that exact same thing?  This excerpt strikes me on several levels.  First, Peter's breathing has been a constant concern since he was seconds old.  He had a tracheotomy when he was only three days old, and he spent his first three months on a ventilator.  When he came home, he slept in our bedroom for two years.  I spent countless hours awake at night watching the numbers on his pulse/ox machine go up and down.  When he moved to his own bedroom, I used a video monitor so that I could both hear and see him.  A decade later, I still listen to his breathing at night, although not nearly as intensely or often as those early years.

The way Via describes her mother in that scene is a mixture of beauty, sadness, and respect.   It provides insight into a sibling's understanding of how emotionally intense it is to parent a child like Auggie.   It also reveals how much Via desires her mother's love and attention.  Throughout the story, you learn how Via grew up quicker, complained less, and took care of herself more often as a result of having Auggie as her brother.  This makes me both sad and proud when I think of my youngest son, Jacob.  

Unlike Via's character, Jacob is four years younger than his sibling.   Thankfully he didn't suffer from the trauma, anxiety, grief, depression, and overwhelming exhaustion that my husband and I endured during Peter's early years.  Nevertheless, he is influenced both positively and negatively by having a brother who looks different and requires a lot of medical attention.  I know there have been times when Jacob was sick that I thought, "You're fine compared to what your brother's been through."  Or, we have joked that it sure would be easier to get Jacob to take his medicine if he only had a feeding tube!  On the positive side, being a sibling like Via gives gifts of compassion and empathy that can never be taught.  We are, after all, a collection of our life experiences.

If you have more than one child, then you understand what a delicate balancing act it is to make sure each of your children feels equally loved.  If one of those children requires intense attention the other sibling(s) are no doubt going to feel the shift in balance.  At our house, we really try to give both of our boys the attention they need.  It's not always possible to make things equal though.  Peter's needs are focused on medical care and extra help with homework and self-care every night.  Jacob's needs revolve around his love of sports and after-school activities.

Sometimes I feel guilty that the time Peter gets is often in the "less-than-fun" range.  Other times the guilt is because Jacob doesn't get as much attention in the evenings when Peter requires so much one-on-one help with homework.  All that being said, life is messy and unfair:  there are no guarantees, promises get broken, plans change, and we all have trials.  One thing that remains consistent in our home is that we take a few minutes every night to read a book together, talk about our day, and give hugs goodnight.  AND, here's my little secret that I want to share with Via...  On numerous nights, I still stand not only outside Peter's door but Jacob's as well.

Thursday, September 13, 2012

And THIS is why it's important to spread awareness

I have a Google Alert set up to receive emails any time Apert syndrome is mentioned in the news or on the internet. It's exciting to see all the articles across the United States about families who are doing their part to raise awareness about their child's condition and the organizations like CCA that help them.

However sometimes I get an alert that links to message boards where people are asking questions about Apert syndrome - whether it be for a school project or some other reason.

A while back, I clicked on one of those alerts and it brought me to a message board where people were discussing various medical conditions. The banter back and forth seemed to be among educated individuals so when I read this particular mention of Apert syndrome I was floored.

"Can my child get Apert syndrome by touching another person affected with it?"


Nobody had responded to the question yet, but my fingers began typing at warp speed to set the record straight. What I wanted to say and what I ended up saying are two completely different things. Rather than bash this person for their ignorance, I decided to use it as an opportunity to educate them about Apert syndrome - what it was and what it most certainly was NOT (ie. a communicable disease you can spread by TOUCH).

I encouraged them to respond to me via email if they had any further questions. Needless to say I never heard from them.

When you have a facial difference - or any physical difference for that matter - it is not uncommon for people to stare. To be curious. To wonder. But it never occurred to me that people might think that Apert syndrome was something one could "get" through casual contact. It truly opened my eyes to just how important it is for us to spread awareness and advocate for our loved ones affected by facial differences.

So during this month of awareness - I hope that each of you will do your part to educate others. Host a picnic. Hang a poster. Talk to your child's school. Or even just start a conversation with the people who linger in their looking at the park or grocery store.

Let's get the word out there and set the record straight. These individuals deserve social acceptance and to know that "Beyond the Face is a Heart".

To read how I am doing my part - visit my personal blog 
and read my awareness post: What It's Like

Friday, September 7, 2012

Where do you belong?

The TV is seldom my first priority even when it’s on, so I wasn’t paying close attention to this Nationwide ad that I saw the other day until I heard, “Wherever you belong, you belong where you’re appreciated.” I stopped. I had cold chills. I put down the dust rag I was cleaning with and went right over to my laptop to YouTube the whole ad. 

“Where do you belong?” the commercial asks over faces of teenage girls singing in a car and post-hipsters in retro swimsuits rushing into a freezing ocean. “Where do you belong?” With the triple-dog-darers? The up-all-nighters? The hearty smiles and warm embraces told the story: we are all different but yet, we all belong here. Here on this shared space we call Earth.

You see, when you look different, you don’t just grapple with belonging on an existential, quarter-life crisis level. You face it early on, when you walk into the lunchroom, looking for an open seat next to a friendly face. You handle the stress this question brings as you cross your fingers and conceal them into fists hoping you belong as one of the first names shouted as team captains call dibs. You search out “belonging” on the playground when everyone else runs off with their friend group as soon as the school door opens, claiming their respective spots. The top of the slide is reserved for the cool girls to perch on and peer down at their “subjects.” The seesaws are for the rowdy boys, surfing the creaking planks as if they’re riding waves in SoCal. The swings are, of course, for the kids who still think that being a kid is about having fun. And then there’s you (and by you, I mean me), book in hand, content to read Anne of Green Gables for a fourth time, enjoying the quiet of the bench and the cool breeze. But in the back of your mind a question nags: Where do I belong among these kids? Why don’t they want me in their group?

This question for me was the hardest in late elementary and early middle school. Once I got to high school, most of the mean-spiritedness my peers developed faded as mysteriously and as quickly as it had appeared. There were hold outs, of course, who insisted on rude remarks and subtle exclusion, but they were the exceptions. I felt, even if tenuously so, that I belonged to my school. I belonged with my little group of friends—“The Good Girls,” they called us. I belonged in yearbook and Anchor Club and youth group at church. I had a sense of belonging and I was happy. 

But as our lives change, we grow up and move out of our happy comfort zones and onto new life experiences. The question, “Where do I belong,” resurfaces a lot. I think that looking different has the potential to increase anxiety about taking on new challenges and subconsciously discourages us from stepping out of those comfort zones. We fear rejection like SEC football teams fear the Crimson Tide (couldn’t resist, y’all). 

But don’t let the fear of rejection prevent you from finding your niche. I’m almost sad to say that a commercial drove that message home to me this week. "You belong where you’re appreciated." Looking different or having a sibling who is differently-abled, allows us to experience an alternative lifestyle. We have a unique vantage point; we see life from a perspective others do not. Empathy for others, a connection to one’s spiritual self, and a strong will to practice kindness characterize many of us that grew up watching others react to how we look, not who we are. So don’t settle for belonging where it’s easy, convenient or comfortable. Try new things, because it’s very likely that you have something to offer—something that is valued and appreciated. You are more than a sum of your parts and you belong where people appreciate you for your refreshing perspective, cutting wit, artistic insights, or athletic prowess. Many, many times you’ll ask yourself, “Do I belong here?” and your honest answer may be “No.” But one place you do belong is CCA. So, consider this your invitation to join the nation of craniofacial advocates who are living full, exciting lives and furthering the message of acceptance and appreciation, one heart at a time. 


Guest Blogger Erica Mossholder is a 20-something living with a craniofacial difference. She is happily married, gainfully employed, and is pursuing her MBA. Erica serves on the Board of Directors for Children's Craniofacial Association

*Note: Nationwide Insurance has no affiliation with CCA nor does CCA endorse this company.

Sunday, September 2, 2012

Grateful for Acceptance at School

"While reading bedtime books a few nights ago, I mentioned to Peter that some of his teachers might be hanging up “Craniofacial Acceptance Month” posters in their classrooms.  Jacob then said, “What about my teacher?”  Well, I replied, “I don’t know who your teacher is yet, but you can take one to school with you next week.”  Peter promptly chimes in, “Now Jacob, don’t start bragging about your brother who has all these cool differences.”  Oh boy, I thought, we’ve created an egotistical monster!

Seriously though, I’m glad that Peter is so comfortable at school.  I know that he is accepted without question.  His classmates already understand that there is nothing to fear about being friends with someone who looks different.  This Sunday I’m grateful that our school is full of students, teachers, and staff who already embrace a community of acceptance.  While Peter may or may not be “Mr. Popularity”, he has without a doubt shown his fellow students that, “Beyond the Face is a Heart”.

Please contact Annie Reeves at [email protected]
to request "Craniofacial Acceptance Month" posters!