Life with an open heart

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I live pretty much with my heart on my sleeve. It’s not the world’s most comfortable place to keep such a thing. With my emotions exposed, I walk this life with immense vulnerability. When something happens- a purposefully cruel message, challenging conversation with a boss or co-worker, someone isn’t kind to my child, or when the ultimate betrayals occurred with my ex-husband,  I have felt these emotional responses longer than what I have always perceived was normal.

I vividly recall having been told by those closest to me not to feel so much, not cry so hard, to keep it together. I’ve been bullied by people that were supposed to accept and love me to “drop it” or “dead it” or repeatedly asked “why do you care so much.”

With my 37th birthday looming, I’ve done some deep, introspective work lately. I’ve meditated more- sometimes for 5 minutes in my car at lunchtime, sometimes pulling over to catch my breath after a rough day, and have written many unpublished pieces  exploring who I am to those I love. In this work I’ve been trying to identify things that I want to improve about myself. How to be a better mother, wife, stepmother, daughter, friend. While exploring these concepts, I keep circling around this concept that I wish other people didn’t affect me as much. Other people have recently tried to throw some of their misery and fear in my lap, and in turn I’ve cried, felt awful and generally just been sad. If only my heart wasn’t so open. If only I wasn’t this vulnerable to what these people said or thought, I’ve said to myself many times.

This morning, upon reflection, I’ve realized that I’m done apologizing for my vulnerability. I’m proud of how much I love other people and how much I try my best to lead with a pure, open heart. I’m proud that I am passionate and emotional. There are certainly destructive paths I’ve gone down to quiet my resentment and pain. I’ve lashed out at others to hide my shame and enormous disappointment. Frankly, I’m done with these uglier ways of treating myself. I’m done with fighting against my nature of living emotionally and I’m tired of the shame of what’s happened to me in  my life. I’m tired of be ashamed of my lack of relationship with my father, and what happened in my first marriage. I’m proud of how I still have an openness to love and the ability to feel things.

I do need to recognize the beautiful good that exists while I process tougher emotions. This perspective is so critical to anyone’s well-being (thank you for the amazing reminder this morning Haley). But I want us more emotional people, who feel that our hearts are sewn on the outside of our clothing, to stop with the self loathing. We need to stop with trying to cover up or apologize for feeling our way through this one life we all have to live.

There will be others trying to shed their own pain near us all, and it’s up to us how we handle that. Do we handle it with our own defensiveness? Or do we find empathy for what they’re experiencing instead. I’m working on that second part at this very moment, and in the meantime I will continue to accept who I am. Bleeding heart and all.

Sending you truth tellers lots of love and hopefully open-hearted inspiration,

Eloise

Five.

Dear Landon,

Today, you turned five. FIVE! This morning as you climbed in my bed at 6am sharp, and snuggled your little body next to mine, I hoped aloud that you would always want to start your days that way.

This past year has been full of incredible experiences and seminal moments for you and our new family. You have surpassed toddler-hood and entered kid-dom, yet you will still excitedly grab older toys or books and proclaim that they’re from “when you were a baby.” This year you’ve continued to conquer making new friends and now keeping old friends. Your burgeoning confidence has emerged, propelling you forward in your little classroom. You began playing soccer, learned to swim, and are mastering the balance beam at gymnastics. You fell more in love with Star Wars and discovered there might be another Disney character besides Elsa to love. You still carry small toys with you most everywhere you go- from Troll dolls to My Little Ponies, Moana and sometimes C3PO. Yet still, your love and devotion to Lenny the lamb is paramount.

Most of all, you and I celebrated our love of two others this year. You once again became someone’s daughter- an adoring stepdaughter to Eric. And of course, you formally became a sister. I say “formally”because you and Anna have behaved as such since you first met one another. You love so easily, sweet girl, and our growing little family is also made to laugh and delight in your jokes, dance moves and hilarious stories.

As I similarly have reflected in each of your birthday letters thus far, your spirit and love have inspired me to become active in helping raise awareness for rare syndromes and hearing loss. This gift, one inspired by your spirit and beauty, has made me realize my true self. Your determination, courage, intelligence and quick wit prove to me and countless others that people should never underestimate you or anyone else with a syndrome or hearing loss. You proudly maneuver through everything with your bahas and operate them almost all on your own now. I am so proud to be your mother.

May you always continue to be as unique, generous, loving and determined. You are my light. You are my joy.

“I carry your heart. I carry it in my heart.”

I love you, sweet girl. Always. 

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This is Treacher Collins Syndrome: Meet Logan!

Treacher Collins has become this incredible way in which I’ve been able to meet people all over the world. Facebook and Instagram have been these wonderful mechanisms for connecting me with families who have changed me, helped me, lifted me up. I cannot wait for Landon to eventually connect with some of these amazing children and adults. These families’ stories give me the opportunity to say “me too!!” excitedly and our beautiful children are just one way we’re able to connect on so much. What’s amazing about the family I am thrilled to introduce you to is that we connected through a mutual friend and our children were born just a month apart.

The next family within our Treacher Collins tribe that I’d like to introduce you is Logan’s family.

  1. Tell us about your family!

Hi!  My name is Nicole Killeen.  I’ve been married to my husband, Matt for 6 years.  We met in college and got married 4 years  later.  Matt is a police officer by day and a volunteer fireman by night.  He enjoys boating, the beach and spending time relaxing by our pool.  I am a high school Business Education teacher in our area.   I enjoy spending time reading and relaxing at the pool and beach.  Our son Logan was born on August 30, 2012.  He is such an outgoing, loving, FUNNY little boy.  Logan will do ANYTHING for a laugh and loves spending time with Mommy, Daddy, and his 2 dogs (labs) – Bailey and Jameson.  He absolutely LOVES trains.  He enjoys when he gets to go to the train station and watch trains go by.  He also loves firetrucks and police cars and wants to be a “train driver and fireman” when he gets older!

  1. Did you know your child had TreacherCollins Syndrome (TCS) before he/she were born?

We did not know.  They thought they saw a cleft palate at my 20 week ultrasound but they brought me back in and did not see the cleft.  Logan was born WITHOUT a cleft palate but we wonder if they started to see some characteristics at this point.

  1. What has your experience with TCS taught you as a parent?

It has taught us to be strong.  It has taught us that God only gives us as much as we can handle.  Most importantly, we have learned that every child is unique and beautiful in their own way.  Logan has a wonderful personality and makes us laugh daily.  He is a character to say the least. He will do ANYTHING to make you laugh.  He always has a smile on his face which keeps a smile on ours even on the hardest days!  Our 4 year old is a true inspiration to my husband and I.

  1. What is the most common misperception about TCS, or what would you like others to know about the syndrome?

That these kids are different and are “sick.”  Logan is a NORMAL 4 year old boy with just smaller facial features and a speech delay.  He enjoys life just like every other 4 year old boy.  He plays, eats and learns like everyone else his age.  He just has to do it with a hearing aide on!  He enjoys playing and learning just like all his friends.  These children are FULL of life and live life to the fullest – they may have features that look a little different than other kids (smaller ears) but they sure are an inspiration to everyone around them.

  1. What is one thing you’re most proud of so far in being a parent of a child with TCS?

We are proud at how strong and tough he is!  He had his first surgery (Jaw distraction) when he was only 3 months old.  He has been a tough cookie ever since. You would never know when he has a simple fever (yes he runs a normal 103 fever)  and he acts 100% normal.  During Christmas break last year he fell and needed multiple stitches.  The doctor was shocked that Logan didn’t even flinch when he started stitching. He just laid there and didn’t make a peep.  The doctor said he’s the only 4 year old he has dealt with that didn’t even flinch!  He sure if tough and teaches us all about life and how to be strong!

  1. How do you feel about Wonder– the book and the upcoming movie? And do you have any special plans to see the film in November?

We personally can’t wait!  We actually did a lesson on movies and entertainment in my high school Sports and Entertainment Marketing class.  During this lesson we look at different trailers for different movies. I introduce my students to TCS and Logan during the first week of class.  During this particular lesson I reminded them about Logan and the struggles we go through on a daily basis – then showed them the trailer.  This class was my crazy, talkative class – but during this trailer EVERY SINGLE STUDENT was silent.  They listened, watched and then clapped and cheered at the end.  It was an amazing reaction that I will NEVER forget.  This made me even more excited to go watch the movie.  My best friend and I plan to go see the movie the day it releases with our husbands.  We are counting down the days!

  1. Is there anything else you’d like to share with us?

We’ve had a crazy few years.  During my pregnancy, my husband Matt was involved in a car accident while on duty (as a police officer.)  He broke his pelvis and tail bone.  He left the hospital and had to do rehab before he was able to come home due to learning how to walk again and using a walker and wheel chair.  He also broke his hands so he had a special walker he had to use.  It was a VERY long few months.  I had to leave my job and take care of him 100%.  At this point, I was about half way through my pregnancy so I was pregnant, having to teach my husband how to walk again.  It took him 3 months to learn how to walk again and then finally get the okay to drive.  He got the all clear to drive approximately 3 weeks before I went into labor.  Luckily, he was able to drive me to the hospital when I went into labor.  We smiled and thought – after all we’ve gone through  the past few months its all behind us and we are ready for our baby boy to be in our hands.  Unfortunately, when Logan James was born it didn’t go as smoothly.  When they looked at me and said something was wrong I thought my world was over.  I didn’t think anything could go wrong – we already had my husband almost die when I was pregnant – this was the light at the end of the tunnel – there can’t be anything wrong. …. and then Logan was taken to the Children’s Hospital of Philadelphia with my husband at 10 hours old and I had to stay at our local hospital.  It was tough – but looking now – it was all worth it in the end.  He is a special little boy – and he’s ALL ours!  He has taught us more about life than anyone ever could!

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Thank you Nicole, you and your family are such beautiful examples or love. Sharing your story will no doubt inspire so many others.

Sending you so much love.

Xoxo,

Eloise

Back to School

As you start your back to school rituals of new haircuts, countless trips to Target and uniform or clothes shopping, I’d like to urge you to sit and have a conversation with your littles before that first bell rings. What I am asking you to discuss is the topic of children with disabilities, children who look different, and the children who might get excluded, or sit by themselves at lunch. Sit with your kids while you still have the summer hours and talk about what kindness looks like in the classroom, the lunch room, and the playground. Talk about what they can do or say if they have any questions about another child’s differences. How should they ask if they want to know what those little boxes are on the sides of a little girl’s head? Or why her ears are small or why she wears that cool pink headband?

Talk about this “hard” stuff with your little ones before school is in full swing and you’re focused on homework and their new teacher, constantly looking through packets and cleaning out their backpack, and the schedule doesn’t allow for nightly conferences on such topics. I’m asking that you open the door to the conversation and see what they fill it with. Ask if they noticed a kid last year who was different, had a disability or simply looked sad often in the lunch room. Ask them if they’ve been in a situation where they were curious about a child and didn’t know what to do. Tell them it is okay to ask you questions, or even ask the child and give them the tools to be kind with their questions. Explain what acceptance and kindness look and sound like.

No age is too young to start this conversation. As children approach Pre-K (and sometimes sooner), these notions of what’s normal and “different” are forming. At 4-5 years old, girls and boys are looking more, pointing sometimes and want an explanation. Much of it is innocent, but some has an added layer of teasing or nonacceptance. All of it can be handled now, as soon as you can, with a conversation.

We sat the other night with my stepdaughter and asked her to reflect on her school year last year. Did she notice anyone with differences or disabilities? We gave her examples to trigger her memory- did she remember meeting or seeing any children with hearing aids like her sister’s, a wheel chair, someone who walked differently? We asked her if she recalls seeing any children sitting or playing alone often. We engaged with her on what she could do to make sure no one felt alone during the school day. What could she say to a child who was somehow different because of a disability (and explained what I meant by that word).  I also told her that I think it’s okay to notice the difference. It’s totally fine to ask how something works. She could also simply sit down and say hello, to be friendly and smile. We openly encouraged her to choose to sit with the kid who sits by themselves.

A lot of adults avoid these conversations because they feel it’s just too hard or maybe you worry you’ll say the wrong thing. Adults often tell their children not to point, don’t notice that difference, stop asking about that little boy and change the subject to avoid anything unpleasant. Inadvertently, adults often close the door to teaching kindness without even knowing it. By not suggesting our children make the kind choice to sit with another child who appears lonely or was made fun of by other kids, we are avoiding it ourselves. WE the parents need to give them these tools, not just the teachers.

Many of you have now read the book Wonder or watched the movie trailer that I’ve posted as often as social media will let me. Many, like yours truly, are struck by the scenes in the cafeteria when two different kids sit down with Auggie and they are friendly, joking with him and laughing together. One of the most poignant moments for me is when a little girl named Summer sits down with him and he says to her “you don’t have to do this,” and she is hurt by that statement, saying “I don’t know what you’re talking about, Auggie.”  I’m curious if any of you thought “would my kid sit down?” I wonder if you simply hoped so or believed they would. Possibly they would, but have you sat down and asked them? Have you talked to them about differences of any kind, not just what’s polite but what actions embody kindness? If not, it’s time.

In spreading kindness, acceptance and love, the conversation isn’t that hard after all. You might fumble through it at first, but that’s all of parenting isn’t it? Sit down, ask them questions and get them talking. It’s more important to try and start somewhere than avoid it because it’s possibly awkward or you worry about what you might say. Children are born to accept and love. Babies and toddlers do not see differences or disabilities. We teach them what to see, how to act, what to say over time and we can change the narrative in the school hallways. We can start with a conversation and spread our message of kindness.

Kindness is contagious, after all.

landon

XOXO

Eloise

 

 

This is Treacher Collins Syndrome: Meet Cassidy!

As I mentioned in a post last month, I’ve decided to branch out beyond telling only our tale and instead feature some of the amazing families I’ve been lucky enough to connect with whose children have Treacher Collins Syndrome (TCS). With the movie Wonder coming to theaters this fall, I feel incredibly passionate about trying to highlight the real stories of Wonder.  While the book and movie are things our community are incredibly supportive of, there’s nothing quite like the real tales these families have to tell.

TCS may be the reason we have all connected, but just as the syndrome does not define our children, nor does it does define what connects us. Our first family is a beautiful example of the kinds of parents I’ve met in the last few years. They are passionate advocates and champions of their daughter, but they  also have passions of their own, and lives that have nothing to do with the syndrome.  These are regular families all lucky enough to have a child that is changing the world in his or her own unique way.

The first family I’ll be introducing you to is Cassidy’s family.

  1. Tell us about your family!

We are a family of four, Dad is Jeremy, a 47-year-old General Manager of a well-established restaurant, Mom is Eva, a 37-year-old photographer who specializes in capturing images of newborns and toddlers.  Cassidy is an adorable, bright almost 5-year-old girl who has TCS and Cameron is a 2 ½-year-old boy who is in to everything and always on the go.  Our family also includes three feline fur babies named Keeker, Cali and Monkey.  We live in Massachusetts.

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  1. Did you know your child had Treacher Collins Syndrome (TCS) before he/she were born?

We found out after Cassidy was born that she had TCS.  Our OB/GYN team did not pick up the telltale signs in any of Eva’s ultrasounds.  Eva couldn’t wait for her next scheduled ultrasound to find out the sex of Cassidy so we went to a clinic in Boston to have an ultrasound done.  The clinic did 3-D ultrasounds for an extra fee and gave us a preview of it.  All that we saw during the preview was Cassidy’s back turned toward us.

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  1. What has your experience with TCS taught you as a parent?

What was at first perceived as a devastating blow to us was really the greatest gift from God to us.  Cassidy’s TCS has definitely made us more cognizant of what truly is important in life.

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  1. What is the most common misconception about TCS, or what would you like others to know about the syndrome?

We feel the most common misconception about TCS is that those who have it are mentally challenged as well.

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  1. What is one thing you’re most proud of so far in being a parent of a child with TCS?

That at a young age Cassidy has accepted herself and acknowledges her differences and that God made her that way.

  1. How do you feel about Wonder– the book and the upcoming movie? And do you have any special plans to see the film in November?

We are so excited that a movie of this magnitude is coming out and love that schools have the book on their reading requirement lists.  Should there be a film premiere for it here in Boston, we will definitely go to it with Cassidy.

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  1. Is there anything else you’d like to share with us?

We truly believe that Cassidy serves a special purpose in this world and is here to do great things.  We imagine that she will follow in Jono Lancaster’s footsteps and be an advocate for children with TCS.  She is an old soul, so much so that Daddy calls her his “little old lady.”

Thank you for sharing dear Eva!

Here is an amazing video featuring Cassidy, and done by the phenomenal folks behind Special Books by Special Kids:

Video care of Special Books by Special Kids:  http://www.specialbooksbyspecialkids.org/

To learn more about TCS, craniofacial differences and to even make a difference yourself in one of these child’s lives please visit the following sites:

Look At Us: https://lookatus.org/

myFace: https://www.myface.org/

Children’s Craniofacial Association: http://www.ccakids.com/

xoxo,

Eloise