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

To the Mother of the Newborn with Treacher Collins…

One of my oldest and dearest called me the other day to let me know that there was a friend of a friend who just had a child with Treacher Collins. As I heard her say the diagnosis that has shaped my life for two years, I swiftly made space in my heart for this mother. For the entire family. Saving space for when they need us, our support, and our love. They found out at the baby’s birth just like we did. Same shock and confusion, mixed with joy and hope. 

I quickly realized this may be the first family and mother I might truly be able to help. But where to start? What advice do you really give when it’s a journey that each mother takes in her own unique way?  When I reflect on those days in the hospital and a few months following, I realize I would have given anything to hear from someone just like me that had lived this life for a couple years. To not feel so alone. And this sentiment of connecting with other mothers through this blog, no matter what you face, is always my goal. To provide a place for people to come and feel a part of something. 

This blog post is for you. For the mother in the NICU googling “what is treacher collins” to the parent of a child with any special need that’s wavering between happiness and crippling sadness over what may or may not be lost. I hope this helps in some way…

The Information Overload.

It’ll be overwhelming. It’ll be confusing. Let it be. Know that you will eventually know all you need to know, and you don’t have to know it in a week. It’ll take time, it’ll take a fresh pair of eyes and a clear head. So don’t forget to really sleep. Don’t forget to take care of yourself in any way that you need to have that clear head. I remember this suffocating feeling of too many terms, too much information, thousands of forms and acronyms. I couldn’t retain it all.  As new mothers, we’re depleted and our brains just work differently. Tell your mother or your sister or your friend to buy you a huge plastic filing bin. Stick all papers in there. You’ll eventually organize it, but it doesn’t matter when. Just find a home for it all so it feels organized in your brain.  

In order for you to properly process the amount of change happening, you must also choose you. Try yoga. Try running. Try something for yourself when you can. Make the time for you so that this information can seep in while you do it.  It really makes a world of difference. If you don’t put yourself first every now and then, the pressure will take over. Doing whatever makes you your best self is what you choose instead.

The Basics.

The basics of feeding and caring for your baby will be more difficult. It just will. Your birth story may be hard for you to come to grips with for a while. You will eventually. But you’ll master your new mothering craft just like all mothers of kids like yours have before. You might not breastfeed because TCS babies’ mouths are different. It might not work for you. That’s completely fine and your baby will thrive and be just as healthy. You’ll have to find special bottles. Maybe even special formula. It’s annoying… for sure… but you can do it. You and he/she will get the hang of it together and feeding time will still be a special bond for y’all.  You might see a new mother nursing her child effortlessly and feel guilty, angry and resentful. While it’s natural to feel these things, just remember that YOU are doing what’s best for YOUR child. You’re showing up and giving it your all. Nothing else matters.

You’ll probably be living in the NICU, unlike most of your momma friends. It’s a very dear place but one you probably hate visiting. It signifies how different your story is. How everything you’d planned in your birth plan has changed. You’ll get to a point where leaving is all that consumes you. And then when you do, you’ll sob. This experience will make the word “nurse” sound the same as “hero.” 

Friends.

In the beginning, those friends that are sisters… the ones that have seen it all with you and still love you… they’ll rise up. They will be nervous of what to say. Let them be. They’ll want to cry with you like it’s their baby. Let them cry. Your friends are who will pull you out of your deeper holes. They will help you keep perspective when it’s too hard to smile.  Let them in. Share things with them that you’d rather keep private. It will keep you sane. 

There will also be friends that will break your heart. New or old, there are women that will not be sensitive to what you’re going through. That won’t call or write or come see you and the baby. There will be new friends that will complain constantly about baby or toddler things that you’d give your left arm if that was all you had to worry about. New friendships can be treasures… but some will not get you. And that’s okay. Weeding out the unhealthy things or people in your life will come naturally. Just let things be and cherish the friends that rise up. 

The amazing thing is that you will meet an entire new family of friends because of your child. Friends that you’ll possibly never meet in person but it doesn’t matter. You’ll text and email and love each other’s children. It’ll feel like you’ve known these women all your lives. It’s a wonderful club. 

The Marriage Story. 

You can be the world’s closest couple who never fights or the couple that battles constantly yet loves endlessly. It doesn’t really matter what you’re working with when you enter this journey… it’s gonna get hard at times. You just gotta keep the faith. You’ll both handle things with this child differently. You may resent him or her for their lack of emotion. You may not understand why you do all the speech and feeding therapy alone. Just ask him or her to help. Just ask and share in these experiences. Once I finally asked for more support, to share in the therapy… I felt a million times better. 

Your marriage will probably change for a while as you adjust to your new role as special needs or TCS mother. You will focus on the babe for a while. You’ll need to in order to gain some control over your whirlwind of a life. And that’s okay. Let it take over for a bit but don’t forget that other person. As you grow more confident as a mother with all you’re now handling, let that love come back to you from your husband or partner. Let it return and try to put them first every now and then. Talk very honestly about all you’re feeling. Share in anything together from dishes to a movie. Sharing is key. Love wins if you let it.

The Future Perfect. 

When you were pregnant I bet you had those daydreams about what it would be like with this baby and what your family would look like. How you’d be in the world. ETC. At first after your child is born and the shock of what is happening to them still has its grip around you, it’ll be hard to see those dreams. To see what the future holds. Slowly and surely as your child reveals herself or himself to you… it’ll return. And your dreams will be grander. You’ll see and feel their purpose of being incredibly important as you start to learn from them. When I look at Landon now I just see this incredibly bright light. A light that others gravitate towards. She doesn’t have special needs to me anymore… she is just incredibly special. And people feel it. They want to be a part of it. It makes my heart sing and I know she has an unbelievable life ahead of her.

The Hunt for Therapy.

The process starts quickly. I went from learning the term TCS- to filling out forms for NY State Early Intervention- to having an evaluation all before I had figured out how to breastfeed in public or pack the diaper bag. It was a messy nightmare where I didn’t know what she had, what to call her hearing loss, what the terms for her ears were, and so on. I was so lost. That is the moment when you reach out to someone else who has been there. On Facebook, on Instagram or here. Find a friend who has been in the trenches before.

When it comes to your actual therapists, you won’t know what you’re looking for and that’s fine. Let it begin and let the relationship unfold. As you learn the craft of speech therapy and/or feeding therapy, remember that you have a voice. Remember that when you feel frustrated or concerned. Speak up and make a change if you need to. If you live in a state where Early Intervention is a struggle (basically anywhere outside of NY)… you’ll need to put your helmet on and get aggressive. It’ll test your patience. Your sanity. But in it you’ll learn there is no limit to your strength. When there’s a breakthrough you’ll feel like superwoman. And you are.

The Surgeries.

They will come. Some children face them sooner and more often than others. My only advice on this score is to find the surgeon or specialist you are most comfortable with. You’ll know when you’re not. Trust those instincts. We met with several teams before choosing her cranio-facial team. That research and time spent in awkward meetings made me a specialist myself. After a little while I felt completely capable challenging and questioning and presenting our family to rooms FULL of doctors. For a while, you will spend countless hours in waiting rooms when you should be on the playground. It does suck, I’m not going to argue. You may feel resentful of the pictures your friends post online playing outside while you wait in a cold, sad waiting room. Don’t let the resentment win. Snuggle your little one tighter and remember that you can do hard things. Small or large, you were built for these hard things. And when you leave the doctors, go do something totally normal like sit in a park or push your little one in the swing.

The surgeries never get easier to prepare for. You will find your way through them in your own unique way. I like watching hilarious or ridiculous movies with noise canceling Bose headphones. I drown out where I am as best I can so that I can actually breathe. You must breathe. Oh and having my mother there. That’s the other requirement. 

The Fighter Still Remains.

You’ll learn to become a fighter. For her needs and then for other’s needs. While at first you will ask your mom, God and anyone close to you… “Why was I chosen for this?” You will wake up one day and realize it’s because you have the fight in you. You’ll champion your child and others. You will pay it forward and feel more complete than ever before. You will write this note to someone else in two years’ time. 

You can do this. If you ever doubt it, let me know. I’m happy to remind and encourage. To all of you wonderful mommas, welcome to the club.

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xoxo,

Eloise