on having a child with a cleft lip

Today I’m going to write about cleft lips.

This is a difficult post to write. Things I’ve been wrestling with for months. Each time I’ve sat down before to write this, I end up closing my computer. This post, these thoughts are from a mother’s perspective. I don’t know how my daughter will feel as she grows regarding being born with a cleft lip and palate. I’ve watched tons and tons of YouTube videos and read blogs of teenagers that share about their experience with clefts. So much insight for me. I am so grateful for all those teenagers that are bravely sharing their struggles, pains and joys. Their words are a gift to me.

But this post isn’t about what it is like to be born with a cleft. I don’t know what that is like.

This post is about what it is like to have a child with a cleft. What the eyes of a mom sees. What the heart of a mom feels.
Me and my girl a couple days after we met.  I was in total bliss and a bit in shock that she was actually in my arms.

****

It wasn’t long before I felt the stares of others. Everywhere we went. Stares. Whispers. Pointing. Some physically using their finger to push up on their own upper lip so as to mimic my sweet baby’s lips. The streets were crowded and at times the stares were suffocating.  I don’t like attention (a minor problem when you are a blond American in China!). I prefer to blend in with the crowds. I tried to focus on the joy of my girl in my arms instead of letting anger build over how others responded to her. To us.

Our oldest two boys were with us in China and I knew they were watching it all. Taking it all in. My oldest still vividly remembers sitting at a restaurant for dinner. Little One got upset so I took her outside. After I left, he looked up to see a couple of waitresses making fun of his little sister. That experience marked him.

The boys were learning from us how to handle the attention and the unkind responses. I was so aware of the boys watching and my girl picking up on my emotions. I remember often whispering in her ear that we would be brave together. We would walk with our heads held high despite the stares and whispers. Despite the gasps. No matter how much we wanted to hide ourselves away, we would not let others rob our joy. Though I whispered in her ear, really the words were for me.

Eventually we arrived back in the US. I remember when the plane touched down in Chicago, hoping things would be different. Hoping for less stares. Hope deferred makes the heart sick. My heart was sick. It was hard. The stares, the comments, the whispers all remained. I will always be thankful for the incredible friends and family we had greeting us at the airport when finally arrived home. They became our support and our safe places. They saw our daughter, not her cleft. They celebrated her and us. They are beautiful people. I am also so thankful for all of you – this online community – that showered us with excitement and support, that loved my daughter and were captivated by her too.

However, when we weren’t in our ‘safe places’ the stares remained.

Those first couple of months home were very hard in regards to watching how others responded to my girl. I would waver between anger and sadness. I just wanted everyone to see my beautiful daughter and it felt like so many could not get past that her lip looked different than theirs. Sometimes I wanted to scream. Sometimes I wanted to cry. Sometimes I wanted to say something I shouldn’t. I wrote about all those emotions in an earlier post.

Eventually I just moved on. I still felt the stares and heard the whispers, but I just didn’t dwell on it. I moved on and we had a new normal. I could predict the places we’d go and get more stares than normal. I learned that there were those that were just downright terrible regarding how they viewed my daughter’s cleft. I also learned that there were those that weren’t sure how to respond or how to talk to us. They would kindly comment on how cute Little One’s shoes were or how her headband was adorable, but not how cute SHE was or how adorable SHE was. It was a big change. I’ve been through motherhood four times before and usually people comment about how cute the baby is and then maybe how cute an accessory is. I soon realized the most people just didn’t know what to say. After all, we life in a world that defines beauty in certain ways and sometimes it is hard to see beauty where the masses do not.

But I saw beauty. Just like her four older siblings, she captivated me. Her big cleft smile completely changed me.

We had four months together before her lip repair surgery. I adored her face, her lips, her smile, the funny way she’d stick her tongue in and out of her cleft. Going into surgery I knew the face I saw when I closed my eyes would soon be very different. Despite all the heartache involving how others viewed her, I just ached and mourned the loss of the beautiful face I knew. Don’t get me wrong, we wanted the surgery for a million reasons and knew it was in her best interest. But that doesn’t change the sense of loss I felt that day.

Post-op was horrible. My sweet, happy girl looked so very different. She was in pain. Swollen. Hurting. Others would comment on what a transformation took place and how amazing she looked. Her surgeon did do an incredible job, but my girl was hurting. It is hard to rejoice and smile when your child is enduring pain. So very hard.

About 6 weeks later she was back to herself and rocking a gorgeous new smile. I love her smile now as much as I did prior to surgery.

Going out and about after she was healed has been so much harder than I could have ever imagined. There are no stares. No whispers. No mean looks or harsh comments. People often stop me to tell me what a beautiful daughter I have and then they might mention they like her outfit too. I am so thankful for that for her. The hard part for me is coming face to face with the harsh reality of the world we live in.

We live in a world where appearance matters tremendously.

A world that defines beauty in certain ways.

A world that can be harsh and mean if you don’t fit inside certain parameters regarding what is on the outside.

A world all too often blinded to beauty.

Goodness my girl is gorgeous – since the day she was born. My daughter will always have a scar from being born with a cleft lip and palate. I pray her scar fades. We chose a surgeon we believed could make her lip look as much like everyone else’s as possible. I want that for her. I don’t want her to feel the stares. To hear the whispers. To see the pointing that others must face. I want her scar to fade.

As thankful as I am for an incredible surgeon and a successful surgery, selfishly at times I miss her cleft lip. It makes me sad that not everyone got to know my girl prior to surgery. I feel like they missed out by not seeing her first beautiful smile. Not many people get to have two completely different but similar smiles in life. But, I do feel like I’ve turned a corner finally. I no longer feel like her smile is ‘new’. It is finally just her smile again.  We have both healed, I guess you could say.

I have a bunch of scars. One from roller blading down a huge hill, one from a hot glue gun, one from chicken pox, and many more. They all tell a story.

Having a child with a cleft lip and watching how the world responds to her pre and post surgery has scarred me in a most wonderful way.  A scar takes place after healing. I am thankful for pain, for the need to be healed and the scar that marks that healing. I hope and pray my scar is big, nasty and gnarly. I hope it never fades. I needed to be changed in this way. My daughter taught me about beauty. I hope in some way I am reminded of this scar everyday. I don’t want this experience to be another thing I forget as time passes. I want this change in me – the one that sees beauty in new and unexpected faces – to last a lifetime.

I want my scar to mark the rest of my life.

***********

UPDATE: Sorry for not clarifying that I do recognize a lot of the stares were from a place of curiosity.  I don’t believe all the world is horrible or responds terribly to those that are different. We have been showed tremendous kindness and met incredible people that have embraced our daughter and her differences. This post was more about the struggles with those that didn’t. I should have done a better job explaining that!  I think it is 100% okay to comment on the headbands, shoes, etc. when you don’t know what to say. I appreciated those comments because I knew they came from a place of kindness. I also recognized that they probably didn’t know what to say, but wanted to say something. Those comments weren’t ‘wrong’. They didn’t make me upset, it made me more just sad that it wasn’t as natural to comment on her beauty. I never took those comments at rude or wrong. I understood the grace in which they were spoken. I apologize for not being more clear on that on this post. Goodness this is a hard post to cover it all!

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  • Ginette - Ashley, I so badly want to tell you this, but at the same time fear that it won’t be taken the way I mean it. So I guess I will just ask that you read this knowing I mean it with love wrapped in kindness. And I pray that it in know way breaks your heart to hear my authenticity.

    I have always had trouble looking at cleft lips. We would receive pictures of children with clefts in the mail, and it was so hard for me to look past the cleft and see that child’s beauty. I sure if I saw a child with one in real life, I would stare, or look away.

    Then I met Little One through your blog….and I fell in love with her. I was able for the first time in my life to look a child with a cleft and see them as beautiful. I see her clefty smile (as I think you have called it) and it is the most stunning, radiant, sunshine smile I have ever seen. Truly. I feel like I have never in my life seen such a glowing smile as her clefty smile. My heart is full when I see pictures of Little One and I wish I could hug her, meet her, hold her, and smile with her. Every time I saw you post a picture of her smile, I would smile with her…it is contagious. When she went in to get surgery, I was so surprised that I too, like you, felt sad to see her clefty smile go. I miss it too. And I have never even met her…

    What amazes me is that I know it was your love, your sharing your journey, your Little One, all changed me…forever. I know that I will be able to look at children with clefts now and see them as beautiful as they really are. That I won’t stare or look away, but just see them as a child. I love that you gave me that. So I guess I just wanted to write all this to say thank you. And thank you for sharing this post, and sharing your heart with all of us. Thank you.

  • AshleyAnn - Ginette – thank you so much for that sweet encouragement and being brave enough to write it…thank you :)

  • Quentin - Being a 17 yo cleftee, I always resented my parents for bringin’ me to life.
    Now that I saw your post, I understand better the feeling a parent can have on the matter.
    Thank you for this beautiful post.

  • oona pohjolainen - This was beautiful and inspiring.
    Oona (adventuredarling.blogspot.fi)

  • Sortido de coisas bonitas… (2) ← Short story of life and style... - [...] ao blog Under the Sycamore através deste post tão duro de ler mas ao mesmo tempo tão tranquilizador.  Duro porque a ideia de que este é [...]

  • Courtney - Thank you for your honest story here. I am a speech therapist actually headed to China this afternoon to join a medical team providing surgeries for children with cleft lip/palate. Knowing I was about to head out, my friend shared with me this blog.

    Professionally, I am prone to see a child with a cleft, both repaired and unrepaired, and zone in on speech and language development. In my mindset, these children are beautiful, but I gravitate towards “fixing” their sounds. Sadly, it’s easy to forget that these patients are children. Just. Children. With families who love them. Thank you for this reminder as I head out.

  • Patricia Coron - Our adorable Susan had a cleft lip but the palet was ok. She was almost 10#s when she was born so the plastic surgery was done within 3 months or less. We took her to Children’s Hospital in Peoria, Ill., where a DR Slaughter with very big fingers, performed his magic. When Susan entered college her lip was sanded and the scar is barely noticeable. Susan is now 48 and has two handsome boys. Susan also had an ear tab on each ear. Those were also removed. Her 16 yr old son was also born with one and as it is very small, he still has it. The ear tabs appear to be a family trait as an aunt of my husband’s had one too. Susan is a beautiful french looking girl and is loved by anyone whose life she touches. If I could post a picture of her, everyone would see how beautiful a person can turn out to be.

  • Stephanie D - Bless your heart for writing this post. I was born with a facial deformity, much like a cleft lip but a cleft on the entire side of my right face.
    I’m forever scarred by the way I was treated during my childhoos and teen years.
    I am 41 now, and still, everyday it is difficult to go out into the world. It is such a difficult thing to live with.

    I believe there is much more knowledge and acceptance of these things these days and for those that must grow up with facial deformities now, I am thankful.

  • Caitlin - I am so glad that I stumbled upon your blog and this post! I was born with a cleft lip and cleft palate and will be 26 in July.

    I love reading from the perspective of CL/CP parents – it reminds me to be thankful for what my parents did for me when I was growing up and the sacrifices they made. I was also happy to hear that you’ve been able to read what teenagers have posted on this topic – I’ve been there, and, through a summer camp in Indiana designed specifically for kids with craniofacial anomalies (including many CL/CPers), I now have many friends who have also been down this road.

    If there’s any advice I could give to you, it would be this: Don’t ever wish her experiences or her scar away. Being born with a CL/CP has made me stronger, and if someone were to ask me if I could do it over again and not be born with it, I’d tell them no. It’s made me who I am, and I’m proud of that. If she’s not ashamed of what she was born with, it will make it harder for other kids to tease her for it. And you’ll be able to play an instrumental role in that – if you teach her that it’s nothing to be ashamed of and work with her on how to explain it to other kids (because they will ask), she’ll be okay.

    Just as your scars tell stories, so will hers. Just as you and I are thankful for our scars (metaphorically and physically), I hope she’ll grow to be thankful for hers, too!

    If you’re interested in learning more about the summer camp I went to, you can check it out here: http://iuhealth.org/riley/cleft/for-patients-and-families/camp-about-face/

    All the best in your journey!

  • AshleyAnn - Caitlin – thank you so much for that comment. I do hope and pray she will see her beautiful scars the way you see yours. I’ve met a lot of people born with CL/CP and not many have your perspective. Your perspective is what I long for for my daughter. Thank you. I’m off to check out that camp…

  • Tara Baum - Hi Ashley Ann,
    I just stumbled across your blog today. My son is 4 1/2 months old and has a cleft lip and palate. His lip surgery is on Monday, I am trying as a mother to find the strength for Monday. I am dreading it. I just LOVE my sons smile and always have and am going to miss it so much! Like you i would never not do the surgery for the little ones sake later on in life but its so hard to even comprehend how different he will look. I am in all honesty so scared. I read your blog and your beautiful little girl is just that she is beautiful!
    I agree with this post in every way. It is so hard as a mother with a baby that has a defect but the people around us; family, friends all help us through the tough times. My husband and I are so fortunate to having a strong foundation around us but it is still hard.
    Anyways, I just wanted to write and let you know that you are not in it alone. In fact your blog has helped me with forshadowing what it will be like in some degree on Monday. For that I am greatful. Thank you!

  • Liz - Hi there, this is so touching. I have a cleft lip and palate… I am 45 and a mom and wife. I have a 9 year old boy/w no issues at all. This just touched my heart so much. I have tears in my eyes. This little girl is so lucky to have you. You are lucky to have found each other. Yes, it is a struggle to have a cleft lip and palate. We are different. We are also very strong, loving, and courageous people. We have a compassion for others because we have had this pain and struggle. Please feel free to email me I am also on FB. I will connect with you on FB. Big hugs to you! Liz Christner.

  • Keira - I just wanted to say what an amazing story. It gave me some perspective to how my Mom would have felt with me. I was born in 1970 with a cleft lip and pallet after many surgeries it was repaired as best as it would ever be. I still get those stares from time to time. When I see children with cleft lips (repaired or not) I always feel compelled to show them my scars. I remember every adult with a cleft lip I ever met and the connection I had with them. I was shopping once and saw a mother, grandmother and and daughter with a recently repaired cleft lip. I approached the mother and asked about her daughter. She was on guard from the start. Short and curt wouldn’t even look me in the face. Grandma turned her back on me. Until I said I was born with a cleft lip and pallet. Then they both had a ton of questions. It was heat-breaking to see them be so cautious of someone asking about a birth defect. I learned along time ago to just start talking about it because most people are curious and want to know why and how and as a society we have been told not to ask because it is impolite. But we are curious by nature and we should not be ashamed of our defects.

  • Cindy Phalen - Just read your story and I am not a mother but a grandmother of a beautiful little boy with cleft lip and palate. Gods grace has been great as he had fed great since birth and now at 10 weeks wt 14+ pounds. We are at the eve of his first surgery to repair his lip. Yesterday his brother who is 3 said he didn’t want babys lip fixed. I know how he feels my grandson smiles with a smile that lights up his whole face. Its a smile that I thankfully get to see daily as they live close. And surgery will go great but is a change and I know that gorgeous smile with change for the better. But his smile will change to a new one and I will love it too. But I so love this smile also. Thank you for sharing. Cindy

  • Lara Korba - Ashley,

    What a beautiful story you have to share – honest, heartbreaking and so very loving. I stumbled across your blog in the midst of research. I work for a non-profit that helps impoverished children with clefts who would never have access to the surgery.

    Your daughter was beautiful before and beautiful now, as is your extraordinary love for her.

    Thank you for sharing your story!!

    Lara Korba
    http://www.leap-foundation.org

  • Sharon - what a lovely well written story, you have a beautiful and gorgeous little girl, love and best wishes to you, her and your other children xx

  • Habib - It’s only been 71 hours me & my wife have a boy with cleft lip & palate, till now i was happy with that but now start weeping, wondering how people will react to our baby. we live in a society where still people think either it’s a curse or a superstition.
    Well written mam, may Allah bless you and your family.

  • gena - I want to do you the favor of letting you know how much I’ve enjoyed your blog these past couple of weeks. Your words and outlook on life are an inspiration. Not to mention your DIY style– color is life!

    About a week after we discovered our baby had a cleft lip and palate (I’m 24 weeks pregnant), I wrote the “bittersweet” quote you posted on our kitchen chalkboard door. It helped guide me from a place of mourning the loss of the baby I expected us to have to a place of total acceptance and excitement for our road ahead.

    Thank you for posting.

  • Melissa - Thank you so much for sharing. I am training to be a speech therapist and we are talking about cleft palates. In school, we focus on the physical/ scientific information regarding cleft palates but its important to get in touch with people’s feelings surrounding the topic. There is no emphasis on the emotional and psychological aspects of it. Also, I am trying to look at lots of images of cleft palates to get used to seeing a different face in the hopes that I don’t stare or react in a way that makes someone uncomfortable when I am working with their child. Your story is beautiful and a great insight into the emotional world of parent’s whose children have cleft palates. I will remember this in the future and I hope it helps me a better, more sensitive clinician. Thank you.

  • Budding Taste: The Nose Knows | Inspired healthy organized - […] from a mother of a daughter who had a cleft lip and palate, go here (more medical description) and here (personal experience of […]

  • Rachel - As a mommy to a cleft baby, I just relived every emotion through your post. I have both tears of sadness and joy streaming down my face…at work, none the less. :)
    I find it absolutely amazing that I always try to seek out the cleft mama’s and how much we can relate, as I didn’t have that through my journey with my son. I received an email from Mpix on how to “improve your phone photography.” After reading the article and admiring the photos I noticed the slight ever so tiny yet all too familiar little scar above your daughters lip. I’m glad I dug deeper into your article and blog. What a ray of sunshine you are.
    Thanks for sharing!

  • Lia - Hi Ashley, your post made me cry, but in a good way. I am a 25 year old girl with a cleft lip and I have always dealed with my condition alone inside my head and always feel uncomfortable when another person would bring it up to me. I always wondered how my own mother felt when she had me as a child. It’s only now that I began to search the internet about other people dealing with this and I find your feelings really moving and inspiring. I am intending to write my own take about my experience and hopefully I could have the same bravery as you did. Your daughter is very beautiful. Thank you so much.

  • AshleyAnn - Lia – thank you so much for sharing your story with me, I am so humbled by that. Your words are a gift to me, thank you!

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