Foxhole Friends

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There is a favorite fable of mine that I first heard on our all-time favorite show “The West Wing.” This story is also popular in a more traditional version on Sunday mornings. It’s read aloud to congregations of varying denominations or emailed by Pastors like is was to my friend. Anyway, I’ve read or been sent this story more than a few times over the years.

The first version of the fable as appeared on the show is told by Leo McGarry to his protégé Josh Lyman- following a grueling therapy session where he discovers he has PTSD from being shot. If you don’t know The West Wing, hop to it… it’s on Netflix friends. Alas, the story is a bit more casual than the church version as you can imagine.

This guy’s walking down the street when he falls in a hole. The walls are so steep he can’t get out.

A doctor passes by and the guy shouts up, ‘Hey you. Can you help me out?’ The doctor writes a prescription, throws it down in the hole and moves on.

Then a priest comes along and the guy shouts up, ‘Father, I’m down in this hole can you help me out?’ The priest writes out a prayer, throws it down in the hole and moves on.

Then a friend walks by, ‘Hey, Joe, it’s me can you help me out?’ And the friend jumps in the hole. Our guy says, ‘Are you stupid? Now we’re both down here.’ The friend says, ‘Yeah, but I’ve been down here before and I know the way out.’

You can read the more religious version online or watch the video that was sent to me here. Both versions speak to me, but there is something a bit more real and tangible from the West Wing story.

I’ve been in a hole. Actually, I’ve been in several different types of holes in my life and in one not too long ago in fact. I know you have too, friends. These holes are the darker times when we don’t know how to help ourselves. We don’t feel we have the tools or the maps to navigate by ourselves.You experience a loss of control, lack the motivation to get out of the hole, and you can lose all sense of time in there also. It feels like shit, frankly and we tend not to want to face why we’re in there in the first place.

As the story goes, our first inclination is toward simply medicating our problems. Just throw a prescription at the issue. My mild post partum was confounded by my painful sense of bewilderment when Landon was born. I remember a distant friend telling me she was on something and I immediately wanted it.  So I hopped on the “Pass the Zoloft” bandwagon and figured I would feel fine in no time. Now I do believe some people need medication. I am not saying it’s not an enormously helpful answer to a lot of very serious diagnoses or problems. But… for most… it’s just the beginning of the answer. It did help me, I believe, and I’m glad for that.  But it was simply one piece of the puzzle.

So… next we head off to church and try to just pray our way out of it. I have heard countless times that if I offer my problems to God, they will be answered and I’ll be taken care of…and so on. YES… I understand and am living proof that this part of the answer also helps one feel whole again. Church and faith absolutely can be part of the answer to finding light again.. But for me and for many others this too is just part of the equation.

The final answer comes in the form of what my friend Haley and I have dubbed the “Foxhole Friend”. That person that you are not necessarily related to OR married to. This is the person or persons that you call when shit gets REAL. It’s who you text when you go into labor, or when you or your spouse loses their job.  When you cannot stop crying because whatever just happened hurts so badly that you need someone else to tell you that you can survive it. It is that face that you need to see or voice you need to hear when you just cannot see past the darkness. They know the light inside you. They know that you’re capable of hard things, and they are in this world to remind you of that.

When Landon was born there were six people I texted. Women that I let into the inner circle of pure helplessness that I was feeling.  Those same women felt my pain and joy alongside me. They have all reminded me over the last two and half years that this child is a gift and they all love her like she is part of their family. Because…she is. These six are the very same women I sent a message to two months ago when we lost the baby. And again, they responded with intense love and understanding. They sent cards, follow up texts. They knew I couldn’t survive the pain without their words. There are certainly more than six that I love like family. Many more who I would fly across the world to support and help them out of their own holes. But there are the few that you try first and that’s just the way of life as we get older. So to those that hopefully know who they are… thank God for you. I have survived these holes in my life because of you. You quite literally lifted me up. I love you.

Here’s to celebrating our Foxhole Friends today and every day.  I hope for all of you that these holes are fewer and far between one another, but if you fall in… call upon these friends. I promise that letting each other in far outweighs any other option.

XOXO,

Eloise

From the pages of myFace magazine

This past month I wrote a piece for a publication printed by one of my favorite organizations in the world. myFace, as I’ve written about and fund-raised for before, is an organization that supports, connects and empowers families as well as quite literally changes the faces of children from all over the world. 

Their “About Me” section moves me in ways I can’t quite put into words:

Without our support, having a facial deformity can be shameful and humiliating while also impeding the basic functions a child needs to survive and grow. In America alone, one in 700 children is born with an oro-facial cleft and one in 1,600 is born with facial asymmetry, a missing ear, a jaw deformity, or a defect of the skull, nerves or facial bones. These are myFace’s children.

myFace, formerly the National Foundation for Facial Reconstruction, was founded to address the all-too-visible plight of those with facial deformity by assuring them access to the comprehensive and highly personalized team care at the Institute of Reconstructive Plastic Surgery (IRPS) at NYU Langone Medical Center. The IRPS provides integrative, highly specialized and personalized team care to all those who request treatment, regardless of the type or severity of the anomaly, the length of treatment, or the family’s ability to afford care.

This organization’s phenomenal group of leaders began publishing a magazine as a way to connect our community and show new members of our tribe that they are not alone.

When asked to write a piece, I was flattered and beyond thrilled. Hoping that my two years could provide some solace and an ounce of wisdom to those newer than myself, I was asked specifically to address these new families and below is my open letter to them.

Dear Friends,

I feel I can call you that… friends… although we are in fact perfect strangers…because the ties that bind us are unique, strong and have great meaning to all of us. If you receive this publication, chances are we have similar experiences, emotions… and children.  In this letter though, I am specifically writing to those of you who are struggling right now. For those of you who are new parents, or new at parenting a child with any variety of syndrome or difference.  Because I want to make sure you know that sometimes the best place to start these incredible journeys…is struggling and feeling like you’re at the bottom. That is certainly where I started.

My daughter, Landon, was born two years ago in New York City. After a healthy and active pregnancy I gave birth to a daughter with Treacher Collins Syndrome. I was told this information by four specialists while recovering from emergency surgery, under anesthesia, alone and at 4 o’clock in the morning. To say that there was no crueler way to be told this information skims the surface on how I feel about that particular morning.  My start as a mother to my beautiful girl was equal parts painful and joyful. I was in mourning for the child I thought I was going to have, while desperately wanting to celebrate the future of a baby I was not sure I knew how to parent.

Now, after two years of this thing called parenting, I’m here to make sure you know that this range of emotions is completely normal and healthy to recognize. For you, I want to draw upon the wisdom I’ve derived from these two years. To mention that which I wish someone had said to me two years ago in that hospital room.

Your child WILL thrive, WILL accomplish everything you’ve ever wanted them to, and WILL teach you more than you can teach them. When I brought Landon home from the hospital, there was so much doubt in my mind and heart as to what her future held. Rare syndromes are a tricky thing. Without a great deal of research, specialists sometimes guess, sometimes tell you what could or will happen without truly knowing. I marvel now at all that Landon does, says, and learns. I would give anything to take back those hours spent worrying or crying over what I thought might be lost in her life. She has proven to me that her life will far surpass anything I wish for her.

Recently, my family had our first taste of cruelty. Our first experience with teasing unfolded over lunch at the hands of an eight year old boy. I’ve known all along this day would come and that there will be more than one of these experiences. Despite knowing this, I wasn’t prepared for what I wanted to do and say to that boy. The art of mastering a brave face, kind voice and using your experience to teach is one of the hardest things you’ll do in your life. Your heart will break wide open. The most important thing is to rise above. Don’t let ugliness settle into your heart or mind. Your child will see themselves as you see them. Your words and your actions will shape how they themselves handle these situations. If you teach, they will teach. If you smile and choose kindness, they too will strive for this.

 A new, very delicate balance is going to emerge. An intense focus on their care and needs while also focusing on them being just normal kids.  A desire for the world to see your child as exactly the same as every other child, yet also making sure they get the special attention they may need.  I emphasize constantly that I don’t want her to get special treatment… and then caveat that with instructions on her bahas, what to do when someone asks about her ears, and a request they try to get her to play with some of the toys from OT.  Walking this tightrope felt hard for a while, until I decided to just let go. I decided to let her be that normal kid. I downplay the hearing aids because they are not at all the most important thing about her. Therapy now is a joy for me and no longer a reminder of how we’re different. Let go of the pressure and don’t forget to just live.

You will not be defined by your child’s differences but by how you respond to them. You will need to become their advocate, their at-home therapist, their beacon of light and happiness when the world feels dark. And eventually, you will become their student, learning what courage truly is from their actions. These past two years have been the most remarkable of my life. They will be for you too because you too can do hard things.

With love,

Eloise

Calling all Parents…

If you are ever going to read anything I write… I implore you to read this one. Sit with it for a while. Digest your emotions and what you will do if this is your child. How will you respond to a teachable moment?

As Landon stumbles into the restaurant, she veers left knowing that’s where the booster seats are parked. Smiling all the way, she throws her little body upwards, climbing into the seat all on her own. Bo casually strolls behind her, beaming at how self sufficient his little girl is. As they settle into their table just outside the playroom, Landon busies herself with reaching for things, looking at the slide in the playroom and asking, as always, for Elmo.

Most children notice Landon. It’s a natural curiosity when they see the hearing aids, the headband, her ears. We’ve grown accustomed to it. Even a while back when I described the silent staring teens, it was just staring. What happened next is the first of its kind in our world. The first time the world was cruel to my baby’s face.

While waiting patiently for their food, a commotion erupted a few tables away.  Bo heard him then.  A boy, 8 or 9 saying something about our girl. As if in slow motion, the boy walks right up to Landon with another girl in tow.

“Ewwwwwww, look! How disgusting is she?!”

The words hung in the air, he said, as rage filled Bo’s body. “WHAT DID YOU JUST SAY?!?” he shouted at the young boy.

Fumbling for words, realizing that my husband’s tone meant trouble, the boy backtracked physically and audibly to explain he used his words wrong. His mother, sensing something must have happened, came over and quickly ushered him out of the place. They left and the altercation was over for all that had overheard. It was over for everyone else except Bo and his parents, who sat quietly and let what happened wash over them.

The encounter, that I didn’t even witness, has found a deep, dark hole in my heart and is resting there. One day this may happen and she’ll understand his words. She’ll know what names are said and that she’s being treated badly by a perfect stranger who knows not even her name.

So far we’ve lived in this bubble of silent stares yet nothing worse. The kids that play with her at her camp adore her. They rush through church and the gym to greet her. They save her favorite book for her and hug her when they see us in town. It’s the happiest bubble that protects our hearts. 

This is a game changer in my endeavor to share our story with the world. This is the moment when we need to change the conversation.

What would you say to your child if he said that?

What would you do if your child asked you what was wrong with that baby?

I heard a story that the author of Wonder is a parent of one of those inquisitive kids. She told this reporter how she was eating ice cream with her child and someone just like Landon and Auggie walked in. Embarrassed by her inability to articulate the differences in another child, the author rushed quickly out of the store and avoided eye contact with the boy or his own mother. She later reflected on how poor of a choice that was for her and wrote the book as a tool and way to celebrate differences. Well since we’re not all authors…

I think it’s important to recognize these awkward times when your child asks something innocent and honest of you. When they ask questions about a child like Landon, I believe the BEST thing is to be honest and kind. Tell them that that child is beautiful and God makes us all different on the inside and outside. What’s most important is seeing the beauty in everyone. Treating everyone as we’d like to be treated. Embracing differences because we ourselves are very unique as well. If you’re so bold, ask if you can introduce your child to the other kid. Meet the mother. Look her in the eyes. Smile. It’s hard to form those words sometimes as you rethink if you’re saying it right. Saying them at all…is all that matters.

Most importantly, find a way to address their comments or questions any way that suits you. Have an open heart. Talk about it instead of shoving it under a blanket statement as in “don’t say that”! and leaving it there. You’ll get so much farther shaping their ability to accept and not bully by going the extra mile to discuss.

And to the little boy and his mother from today…. you should count your lucky stars I wasn’t there. I will pray for you tonight- that you should find manners, grace, kindness and the ability to learn to accept others into your hearts.

Love,

Eloise