soaking her in

I recently got an information packet in the mail from an organization that does cleft repairs for free across the globe. They do incredible work. They change lives. And I will support their work for as long as I can. And, yet, there was something so very hard for me as I read through their information about clefts.

“Disfigurement”

“Defect”

“Isolated”

“Shunned from society”

“Believed to be cursed”

“Unable to speak”

“Unable to eat”

“Heartache”

“Not allowed to attend school”

“A lifetime of emotional pain”

I read those words and many more with my beautiful daughter on my lap. Words that are true. Words that describe what many children and adults around the world with un-repaired clefts know as a way of life. I can’t explain how strange that was…to read those words with my silly, happy, sweet daughter in my arms.  Right now she doesn’t know her lip was created any differently. She is full of joy and life. She is surrounded by love. She is celebrated. She is adored. She is cherished beyond words.

There are an estimated 150,000+ babies born each year with a cleft lip or palate. Because of poverty, most are unable to have surgical repairs and they face great hardship and pain. It breaks my heart.

What shatters my heart the most is that so much of their pain is because of how others view their cleft, not the actual cleft itself.

Right now I am celebrating and rejoicing in my daughter. I will soak in every single sweet clefty smile I can get before surgery in January. And when the day comes that I have to kiss her sweet lips one last time before a doctor changes them, I will bawl like a baby. And then I will walk in gratitude that we have the means to provide surgery for our daughter because in my head I know that is best for her. I just wish I my heart felt the same. Bittersweet….gloriously made.

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  • Jackie - Your photos of her are beautiful!

    What lens did you use? What settings were used here?

  • angie webb - Beautiful post.
    The picture of her head tilted to the side and the one of her uber big nose scrunched smile is the best.

  • Amanda - Oh my word… LOVE the scrunchy nose pictures!!! =D

  • Rebecca - You know, when you first posted pictures of her, of course the first thing I noticed (besides how adorable she is) was her cleft lip. But, as time has gone on and I have seen more and more pictures of her, I don’t even notice it anymore. While it is an important part of her story and her life right now, it does not define who she is. What I see now when I see her sweet little face on my computer screen is a happy, blessed, gorgeous little girl. Like you, I think many of us will miss that sweet little grin as well, but no matter if her lip is cleft or “normal” (because who defines normal anyways?) she will still be that sweet little lady who lights up our world, even if it’s only for a few minutes, every morning when we log onto your blog. While many may say upsetting things about cleft lips and while many cultures and societies sees this as all those hurtful words and phrases you posted earlier, how you see her and how she grows to see herself is most important. We cannot change society, we can change ourselves.

  • Kayla - That crinkled nose smile is so heart-melting-good it’s contagious.
    oh my!!!

  • Karli - what a beautiful post! i love her little scrunched up nose smile. she sure is precious :)

  • Martina - I’m trying to hold back the tears here at my desk. She is a beautiful, beautiful girl and you have a beautiful heart. That last picture completely melts me. So much joy and her hands almost seem to be saying, “bring it on, world!” She is an overcomer.

  • Emily - I’ve been a reader of the blog for a few months now. The other week i found myself starting at your first post and going through them each night and have now officially made my way through each one (do i have way too much spare time on my hands at night?). I’m not a mum, but am a nanny and i just love watching how much fun you have with your children and how much you care to create such a fun, loving and creative environment for them. Your whole family is just beautiful and I will never get tired of hearing all your amazing stories!

  • Monica - Hi Ashley. I am new in reading your blog. I am so lucky that I found it. I have started reading the last one the 5 hundred something , now I am in the 260 page. This blog is like reading a excelent book, where it has a lot of thing that I enjoy and the only thing that I want is to continue reading, to learn and experience things similar in your life.
    I want to said to you congratulations! not just for the blog. It is a big conratulations about all the things that you do. Being a mom of 5 kids, being a wife, a helper for others.
    I love your blog or your life that is almost the same :). I like also photography but I am not that good YET :). I love to do crafts, I love my kids ( I just have 2 girls , one is 3 years old and the little one is only 3 months). I saw that your daughter also born in 07/07/09. Is that correct? If it is mine born teh same day. :). Well I aill continue reading your blog this weekend. I would like to have more time to do all teh things that I love. I am a Engineer so I work in a company, makes me sad that I don’t spend too much time with my kids being at home. But I try to enjoy the most that I can, hopefully one day I can be a home mom. Also when I was reading in looking thru yoru pictures just make me feel that I want to have more kids. I think that is funny because I was just thinking to have these 2, but we will see. Seems that is so nice to have a big family but I really don’t know how you do it and you haven’t get crazy yet. LOL . I am 32 years old.
    About the new blog that you post I just want to say that your daughter is sooo beutiful. Wjen I was reading your post makes me cry. Hopefully more people read and lear that for the eyes of GOD we are all the same. The most thing that count is our heart and soul, and for sure your daugther has that and when she grows up she will be greatfull with GOD to give her a wonderful family.
    Seriously I will like to be your friend, because having that kind of friends make us to have a greater heart learning and sharing a wonderful stories . I live in Illinois 5 years ago. I am from Mexico. Well you have my email , I know you maybe will not have the time to answer or say hello. But it is glad to meeting you and your family. If you send me an email I will send you a pic of my family and me. Have a nice weekend!

  • Jessica R - She is so beautiful. I’m so glad that she has adjusted so well!

  • Ayesha Riaz - You know i don’t post often so today’s one of those days when i post because i feel sometimes something’s are better said….. Baby has changed she smiles a different smile now a more loved and carefree happy smile i am not just saying that, but with pure genuineness she has grown in your care and you have helped her grow i always pray she blesses you and your family with nothing but happiness and joy but it seems the opposite is happening too may you all continue to blossom as a family and may you all have nothing but happiness and carefree smiles forever in the future x

  • Jessica P - These pictures are so great. Beautiful girl with a beautiful smile! And the nose crinkle is perfection!

  • Elizabeth - I am NOT a cryer but somehow tears manage to find their way out, when I read your blog. She is so beautiful and perfect.

  • Tammia - Sweet sentiments. While I never got to see my little girl before her lip was repaired, I treasure the few photos we do have. And I framed them and hung them on the wall because she was beautiful and I missed out on that part of her life. We look at those photos often and talk about how her lip used to be open. Because you take (and share) so many gorgeous pictures of your Little One, I have plenty of opportunity to share your pictures with my daughter. I remember reading one time about a woman (in her 60′s I think?) whose parents had never showed her a baby picture before her cleft lip was closed. When she finally saw one, she cried and cried. She had felt ashamed her whole life and was grieving the part of her she never knew. As is true with everything in life, honesty and openness is best. Thanks for sharing your journey.

  • mosey - These pictures took my breath away, she is SO precious and SO happy and loved, it just sparkles in her eyes! Your words… beautiful. :)

  • Anna - I love the way her little nose crinkles when she is smiling so hard! (second to last photo may be my very favorite.)

  • irene - She is a gem! She does indeed look like Firecracker now, such a happy and healthy baby :)

  • Kelli Rippee - Ashley, Loved the post. I’ve been bittersweet enjoying the photos also because I know a change is coming. However, today I had a question. What kind of recovery in the way of adjustment do these repairs carry? She is used to eating a certain way, breathing a certain way, and the lay of the tongue and that sort of thing. Is it difficult for the children to adjust to the change that surgery brings to the overall structure of things. I wonder if it effects the sense of smell. All just a new angle of thought for me and I appreciate the opportunity to grow.

  • Kristin S - Her whole face smiles! She shares that trait with her brothers and sister too.

  • jennie - she is perfection

  • ashlee - Everytime i see her beautiful face i see my daughter who is the same age as Little One. I could not imagine my sweet Maizie without a fanily for her first year. I am blessed beyond belief by your family and your sweet girl:)

  • Kelly - Oh, I have tears. My daughter was also born with a cleft, 10 years ago, she’s most likely had all her surgeries & I have the tears remembering her extra wide smile & knowing so well that bittersweet feeling. And remembering the feeling of them wheeling my heart away from me on that surgical bed with each surgery. You will all cherish these pictures more than you know when that big smile is made just a little less wide.

  • pattilouwho - oh my goodness…i just love that scrunchy-nosed smile. that’s the sweetest thing i’ve ever seen (next to my own daughter’s scrunchy-nosed smile of course.) ;)

  • stephanie - I am going to bawl with you on that day too, because as you said, she is so happy and oblivious to the fact that she looks any different than anyone else. in some ways, i wonder if it would be better to challenge those around her to see her the way we all see her right now: PERFECT. it’s a tough call because we love our children and do not want them to face any unnecessary pain. she is so beautiful it makes my heartache that i will never be able to meet her in person and tell her how amazing she is.

    i can never decide who more blessed, you or Little One!

  • Jelena - Those last 2 pictures are great! She is really relaxed and happy, big change since the first days. :)

  • Maria - My little guy had his surgery last Jan. and I read a very similar article with him on my lap. Until I had him in my arms and saw how expressive he could be with the little wings on the sides of his cleft, I didn’t understand parents who said they would miss the smile. I saw his smile (5 days after we got him…) and fell in LOVE. I miss it, although I am so, so thankful for his excellent repair.

    I also remember fondly many people in China who were kind to him and to me, and I remember the sting of people who hid their faces from him as soon as they saw him.

    Your daughter is beautiful, and I’m praying her surgery goes very well.

  • Shelley G - Oh I love seeing pictures of her smiling…she has a great smile-her eyes, her whole face seem SO happy! She is loved and she belongs…no matter what. I’m so happy you are able to give her this gift…I pray the bittersweet will be ‘oh so sweet’ once you all see and kiss her new lips. Always praying for your family!

  • Amanda - Your daughter is so gorgeous and her smile just lights up everything. Seeing these pictures made my heart smile through and through. I hope she knows how amazing she is.

  • Cate - Wow…what an adorably, wrinkle-nosed, sweet smile! You’ll miss that smile, but you get to have another smile from her to fall in love with!

  • Trish - what a beautiful post! your heart is just so sweet. i see jesus in you! your daughter is gorgeous and what a sweet thing to see her so full of joy! hugs!

  • chantelle - She is so beautiful and she knows it! Look at her confident smile and wrinkled little nose-her love sings from her heart an shines right through.
    Ashley-do you have many idea how many people you change by posts like this? You are amazing.

  • Sue - I had to comment because I had an experience that puts “deformity” in perspective. When my second son was born, he had a cleft lip and palate and a hernia. I remember thinking how I would explain my less than “perfect” child. In less than 45 minutes, we learned that his appearance issues were the least of our worries since he had a genetic abnormality which would result in his death in 10 months.
    It is always so much better when we keep sight of the BIG picture, isn’t it? Your daughter is happy and has your love. As you wrote, thankfully, she will be spared shallow and superficial slights.

  • the.mrs - I love this post. I am right there with the others who are crying like a fool in public and telling all of my friends that they need to come cry with me.

    Little One is so so so so SO very beautiful! Breathtaking actually!

    I’m so glad that you have shared her with us. I love how Little One has changed me forever in that I look at your blog every single day and don’t see her as a baby with a cleft lip. I see a strong and amazing little girl with a crunched up little smiling nose and sweet interactions with her siblings and parents. I love that.

  • Carlene Danielek - You are and amazing woman Miss Ashley!!! I’m so glad you have a blog and I have the privelage of reading your posts!! Thank you so much…from a mother, grandmother, wife, daughter and neonatal intensive care nurse. Carlene

  • karen - look at that happy baby!!!

  • mandi@herbanhomestead - Gloriously made- you’ve got that right! She is such a beauty Ashley!

  • ari - OMG she’s beautiful!!

  • Michelle Adams - When my son, 13 months old now, had his cleft repaired back in March, my husband and I wanted to find a way we could give back. We were so very pleased with our surgeon and his staff that we asked him for suggestions. One of his office partners created LEAP Foundation (http://www.leap-foundation.org/) here in Dallas. We did some research on the foundation and were amazed by what the doctors, nurses, and other medical practitioners are able to do.
    Like you I was brought to tears by the way people with clefts are seen in other parts of the world. To think that they are thought to be evil somehow, that the cleft was caused because the parents angered God, and that those people are shunned from society. It just blows my mind.
    It is such a blessing that we live in a country where not only do we have those medical services available to us, but we also have insurance that can help with the financial burden of the surgeries.
    I greatly enjoy following your posts about your newest little angel. She is beautiful, and after her surgery you will be AMAZED how even more beautiful she becomes. I wish you all of God’s blessings, strength, and patience in you and your family’s journey.

  • Ramona Parent-Boyd - Oh my goodness, hearing you speak is like the words are coming out of my mouth. Our daughter, Molly (now 12), was born with a cleft lip. She was operated at 3 months old and I remember having mixed emotions about her having a surgery. We thought she was perfect already and her cleft (we called it her broken lip) was just a part of her. I remembered when she returned from surgery i was shocked at how much she had changed, personality wise because now she looked so ‘prim and proper’ with her new little pout. It took some getting used to. Those gorgeous wide smiles. You are wise to take a lot of photos, we did this also and the day before we had a major photo shoot with lots of close ups so that we could show her exactly what she looked like when she was born. We still keep a cleft photo on our fridge. Anyway just had to let you know how your words were speaking to me. I’d love to chat more & would love to show you our Molly then and now. She’s been beautiful every step of the way. oh and what a great journal of your feelings for her to read when she is older. rpboyd@telus.net

  • Julie Boyd - Hi! A sweet friend of mine sent your blog to me to read. She told me that we had a few things in common. 1) Photography and 2) A sweet China doll with cleft lip/palate. I have really enjoyed readying your blog!! This post really took a hold of my heart strings! I know exactly how you feel and can relate in so many ways. We brought our daughter home from China in August of this year. She had her 1st surgery, lip repair, in October. She has done so well…….but I will be honest I miss her overly huge smile! Now, don’t get me wrong, I love love her new smile and wouldn’t trade it for anything. But there is something about that sweet overly huge smile that just stole my heart! I suppose since she was placed in my arms with that gorgeous smile and I didn’t want to change anything. I am in love with her smile and firecracker personality now! She is a God sent and I am so thankful she was placed in our forever family. I will pray for you and your sweet angel!! Your daughter will be so thankful for these wonderful photographs! :)

    Ruthie had surgery here in Birmingham and they did a fabulous job! I am totally impressed and so thankful for the doctors that held her!! God bless you!!

    Julie Boyd

  • Marissa Noe - I read this post as my 5 year old daughter looked over my shoulder and asked what happened to her lip. I went on to tell her that some babies were born that way. She smiled really big at her and said “mom- she’s so cute!!” If only we could be more like a child- loving and accepting of anyone no matter how they look. Thanks for sharing your story. I know you hear it over and over again from many but it truly touches my soul. When I think about all the other children out there who are alone and need a family… well, I hope some day I will be in the position to do the same for one of these sweet little ones!!

  • elizabeth H - Little One is {BEAUTIFUL}…that’s all i have to say.
    LOVE her smile…LOVE her spirit!

  • Alycia S - Im a couple of days behind, so Im just getting to this post. I (normally) check your blog every.single.day. I love it, it makes me smile, laugh, cry at my desk like a baby, but mostly it fills my heart with warmth. You have a tremendously beautiful family and Little One is no exception to that. You have opened my eyes to what beauty truly is and its very apparent that you have done that with so many others. Thank you for warming my heart.

  • Katie - She is beautiful beyond words!

  • Amy Kay - The first thing I noticed in these photos was the way she crinkles her nose. Second was her expressive eyes. She is just beautiful and she looks happy and LOVED!

  • Sarah C. - My husband was born with a cleft lip, and he is thankful everyday that he was able to have surgical repair. While I think he’s the handsomest man in the world, he doesn’t love his scar and is sensitive even talking about it. While you love your daughter and her sweet smile, I can be very nearly certain that she will always be thankful that she was able to have surgery. She is so very lucky/blessed in so many different ways.

  • maggie - what a darling child..those giggling pics brought tears. :)

  • molly june. - GAH! she kills me. she is SO adorable. with a contagious laugh, i’m sure :) something about her reminds me of my daughter. her smile is most definitely my favorite thing about her though.

  • Kirra Sue - She is so incredibly beautiful!

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