to hear her.

I get asked a lot of questions about my youngest daughter’s language skills after being born with a cleft lip and palate. Honestly, it is rough.Β  Really rough. Every child is so different, but with cleft affected kids there is a common bond of speech difficulties. Our daughter’s cleft lip was repaired when she was 19 months old and her palate was repaired when she was 2 years old. For every month that her lip and palate were un-repaired it set her back significantly in regards to learning how to use her lips, mouth and muscles to form proper speech.

She has a handful of words, similar to what a 1 year old can say. BUT – she understands everything. She is so smart. You can imagine how frustrating it is for her to understand and want to communicate, but to be unable to physically form the words she wants to say. We are doing lots of speech therapy (and signing), but it is still such slow hard road for her. As parents it is hard to watch her have to fight for everything – fight to learn to eat, fight to learn to speak, fight to overcome difficulties from her past. And yet, it is her fight, her tiny warrior spirit that defines her in so many ways.

A few weeks ago, the children’s pastor at our church shared a little bit of his story regarding being born with a bilateral cleft lip and palate.Β  He spoke of the difficult journey regarding speech and enduring being made fun of by his peers as a result. His story was so hard to hear for several reasons. However, his story ended with where he is today…a children’s pastor. A man that stands before groups of kids and adults all the time – speaking with clarity and confidence. He talked about how God took his greatest weakness and transformed it into a great strength.

One day my daughter will speak with clarity and confidence. One day others will not ask me, “What is she saying?” One day she will not cry out in frustration. One day speech therapy will be her past. I firmly believe God has great plans for her, plans that include her voice.

One day I’ll sit at the table with her and we’ll have a long conversation. I’ll hear her thoughts and her dreams and her voice. I’ll hear her.

The picture below is from a recent trip to the zoo. It reminds me so much of this stage. We know our girl so well. She is physically and emotionally here with us, yet there is also a part of her we haven’t gotten to know. Like her reflection, we can’t touch or hold it but we know it is there. It is a side of her we unlock a little bit at a time as we tackle communication skills. It is such a bittersweet journey to watch parts of her being – in a way – trapped inside. It is also beautiful when those parts break out little bit by little bit.

2.14zoo-2

Each night she wraps her arms around my neck and in a way only Chris and I can understand she says, “Goodnight Momma, I love you.” And I know she is going to be just fine.

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  • Beth C - And I believe God is seeing everything this little warrior is doing & what she will do in her future and he is saying, “She will be just fine.”

  • Southern Gal - I believe through these difficulties will come great blessings. Your little warrior has just the right parents and family to see her through. Hugs.

  • Steph - That was so gorgeously written, as usual. Adoption never defines a person (adoptee here, everything we do doesn’t revolve around our placement!!) but it is so good and positive to see a beautiful little girl who ended up exactly where she needs to be to get the help she needs. Such a blessing.

    It’s funny, I’ve said a lot of what you just wrote about my own daughter. How she is so intelligent and understands everything but the words are trapped inside. How it is bittersweet to watch her frustration. How only we understand her. How beautiful it is to watch her bloom and click things into place and unlock her thoughts. But…my daughter is one. You’ve just humbled me and made my heart ache for you. I’m so grateful that my daughter is going through this in the easiest most natural way possible. I will be a thousand times more grateful and appreciative of that now.

    As a sidenote, she has physical limitations for which we have intensive therapy. She has a hard road ahead. That process brings up all the same feelings, but as I’m sure you know, it feels good to focus on her strengths and cheer every little victory. Your little warrior gives me hope. If little one can overcome all she has been handed at such a young age, I know mine can too!!

  • TheDenverPack - Our youngest daughter has had her own challenges and communication (and the ability to form words clearly) has been one of her largest. She’s now 13 years old, and we have a 30 minute drive to/from her school. It makes me smile the whole way as she’s so chatty because there were days (much like the ones you captured beautifully above) that I wanted so desperately to hear 1 word. Thank you for sharing.

  • Bird and Bambi - Your words and her story touching me every time! It is so beautiful to see your family helping her to be free, wonderful and amazing!

    Love from far away but still think about you!
    fatcatconnection
    http://lasagnolove.blogspot.de

  • the inadvertent farmer - I have learned through life’s difficulties that God uses them to teach us to depend on Him. If life were perfect, and we had no weaknesses, temptations, and trials we would miss the opportunity to develop a relationship that involves truly leaning on Him. Your sweet little warrior will be a stronger woman someday because of what she and God (and you) are overcoming right now. Now that will give you and she something truly amazing to talk about! Kim

  • Shelly Dennison - Love everything about this post! Our oldest has autism and is non-verbal so while we know he to is here mentally and physically .. we have not gotten to know him through his voice yet. Our youngest was born with a bilateral cleft lip and palate. His speech has come a long way and he now (at 5) talks enough to make up for his brother πŸ™‚ Thank you for sharing your journey with us!

  • Kathleen DeSouza - So many of your post have brought tears to my eyes.
    Even though we’ve never met I know we are sisters in the body of Christ.
    I feel like we are friends in real life- Celebrate with you and weep in your lost.
    I started reading your blog when I was pregnant with my first. He is turning four this year, and I have a two year old as well. My husband and I want two more, you give me so much joy- seeing you love your kids and love God.. It’s radiant. I want to be that kind of family/that kind of mom.
    God is doing amazing things- I am so grateful to see you waiting on The Lord for his promises!! It’s an incredible thing to witness and follow.
    You are a beckon of light to the lost.
    Your little girl is an answer to obedience.

    For whatever is born of God overcomes the world.
    And this is the victory that has overcome the worldβ€” our faith. (1 John 5:4)

    Stay faithful Momma!

  • Elena - My son is 5 and has Down syndrome as well as apraxia. My 20 month old daughter now can out talk him. He too, understands what is going on around him and gets extremely frustrated at times. Sometimes I feel like he’s mad that I can’t just read his mind. Even with his limited vocabulary, he is hysterical. He is outgoing and will chat it up with anyone he meets – even if they can’t understand a word he says. It pains me to watch him have to work so hard to reach every little milestone but in my heart I keep a vision of him as a teenager talking to me about all his favorite things. Thank you for sharing. It’s always nice to know there are others in this journey.

  • Heather - Ashley, I’m tearing up with your beautiful post. I’m so excited to be participating in PPA’s Celebration of Smiles event. One of my best friends growing up had a cleft lip and palate. Her second child was also born with one. As I do this event, know that Little One is on my heart, too. I am so excited that with just 10 mini-sessions, we can provide a cleft palate surgery. This post just blessed me immensely. Thank you, and Blessings!

  • Amy - My son has a speech impediment too, I understand the frustration. He is now 13 & has been in speech 10 years but is giving up. He makes straight A’s, tests at 11 & 12th grade levels but although he has his group of friends there are still those that make fun of him. Theres a few words I still can’t understand, and he adds letters to words and cannot spell to save his life lol. I’m worried about his future, He’s smart enough to be anything he wants, I hope for him his speech problems won’t prevent him from sounding professional. He didn’t have a cleft, he has speech apraxia that doesn’t appear to be getting any better with schools speech therapy and its $100 a session for private therapy. I’m so glad you wrote this article, there’s not to many to talk to about this.

  • lin - I tingled when i read ‘I firmly believe God has great plans for her, plans that include her voice.’ Amen! I believe that too, and I’m rooting for her, and for you Ashley. *hugs*

  • LuSu's Mama - Thank you so much! My baby is 22 months old and had her cleft palate surgery a year ago. My gratitude for sharing your faith and your hopeful words. How amazing all children are, especially in the ways that they triumph and surprise us.

  • Mary - Beautifully written. Thank you for sharing.

  • Taylor - I can only imagine how difficult and frustrating something like that can be for not only your sweet little baby girl, but you as a mother as well. You are so strong and your words are wonderful encouragement whether they directly apply to my life or not. You have a brave and strong little one on your hands, that’s for sure.

    xoxo
    Taylor

    http://www.welcomehometaylor.com

  • Stephanie - This is a wonderful tool for those who have speech delays. I work with kids every day who use this program and it is amazing! You may want to check it out! :o) proloquo2go

  • amber - What a precious, tiny gift you have. She will have a tremendous story one day. What a blessing that it includes your family. Wish I could squish that little lady. Thanks for sharing your great love of her with us.

  • MrsFun - I loved reading this. Every child is so different and faces different challenges. She will get there…. with the love and support you give her she will get there sooner.

  • Amy - This is beautiful. Something I’m sure she’ll read one day and take pride in. That you documented her inspiring journey. That you believed in her before you ever met her. Beautiful, beautiful, beautiful.

  • Emily - What great wonders await you from her little mind. And yay signing! (I’m a huge advocate of everyone everywhere being fluent in ASL – or their native sign language. πŸ™‚ )

  • amy jupin - Good Lord, the tears won’t stop coming.
    Thank you for this beautiful post this morning–reading it feels like a warm hug.
    xo.

  • Elizabeth Beattie - I understand exactly how you feel. My daughter is autistic. She is five years old and just recently said “mommy” and “I love you” for the first time. It’s magical. You are an amazing family and little one is so brave and strong. Sometimes it’s really hard when I know my daughter is trying to communicate and can’t tell me in words. She cries and sometimes hits herself. My heart breaks. But she is so smart and so beautiful and I know that she will be stronger for this part of her journey. “The Journey is the Thing” -Homer

  • Anastasia Curtin - What a nice post! Full of inspiration to never give up! She is a worrier indeed! Ashley, you are a great mom, keep believing and take one day at a time! God didn’t create a World in one day……

  • risa west - your blog inspires me constantly. you bring me to tears more often than not. i love your honesty and your faith. happy belated birthday to your son, and we are all rooting for your daughter, all of you really…

  • Amber - So glad you are choosing to look forward to what God is going to do, because he has big plans! I am a cleft palate/lip mama as well. She is beautiful!!

  • Jenni - My oldest son has been in speech therapy since he was 3. My youngest is 17 months and has not said a word. I hope it is a delay and not something else. It is so hard for a mom to think about her kids to struggle with anything I know I’m not alone in that. It is a part of their story. As we try to figure out about my youngest, I appreciate this more then you know:)

  • Brittany - What a beautiful post! You are wonderful parents and while the road may be long it’s amazing to see how far she has come. Thank you for sharing the journey with us. I love how God takes what we think is a weakness and turns it into a strength for His glory. Bless you for seeing past your current circumstances and imagining what might be. You are an inspiration!

  • Stoich91 - This truly is beautifully written! I guess it is helpful to remember all the deaf/mute/blind people in life who made incredible differences, like Helen Keller! What maters is not the eloquence of speech, but the beautiful spirit you’ve fostered. Even people who speak perfectly but are too shy to articulate themselves in adulthood end up being sometimes the most poetic and inspiring of all when they do talk. Thankful that her spirit is being fostered by such a loving God and family – the unlocking will come in time, and I hope we are all here to celebrate!! πŸ˜€

  • meg w - ashley,
    your words cut deep to my heart… three years ago, i gave birth to twin girls, one that took breath and one that was eternally asleep. our grief was overwhelming and my two year old son who was happy and vocal, lost his voice out of his own grief. only God’s grace carried us through helping him in his sorrow and giving him the courage to find his voice again. God bless you on this journey of healing.

  • Allison - beautiful post – had to grab the tissue for that one.

  • Natalie - Thank you so much for your honest and beautiful posts this week! Our family is in the midst of making decisions regarding home schooling and (separately) our adoption, and I am just so blessed by your sharing.

  • Catherine - Oh, I love this post. I have wondered many times but hadn’t put finger to keyboard to ask. Thank you for sharing these thoughts so beautifully.

  • Victoria / Justice Pirate - I think it is so wonderful that the children’s pastor at your church can totally understand your daughter as she grows and she can be able to know that she is not alone. I love what you wrote about what he stated. So cool!

  • shanna - I think it’s wonderful that your children have a mother who is so able to put her thoughts into words. I can only imagine the frustration parents must feel who are in the same situation you are in and not being able to find the words themselves, let alone for their children.
    But perhaps it’s something every parent grows in, trying to voice their children’s issues and problems they encounter.
    Still, you’re words are very well thought and gentle.

  • RaD - And maybe, just maybe, she’ll live up to her middle name!

  • Jenny B. - Beautiful! Last week, I took my 3rd grader on a field trip to the George Washington Carver National Monument near Diamond, MO. At a couple of spots on the grounds and in the museum, you can listen to radio recordings of GWC speaking. He had an odd sounding voice (possibly from having whooping cough as a child). The park ranger commented on how that his voice is a testament to what a great leader he was because even though he sounded strange, he was able to speak to large groups of people and was a beloved teacher.

  • Tina - I have read your blog for over a year and enjoy it so much. I have often thought about leaving a comment and today seems like a good day! My aunt had a cleft palate and lip repair. She is now in her 70’s. She is such a beautiful, kind, thoughtful person. Really, I could go on and on. My grandparents have passed away but I often wish I could talk to them about how they felt raising their first baby and making long journeys for multiple surgeries. It must not have been easy. I know others were not always kind to her but she doesn’t talk about that. Instead, she has taught her children. grandchildren, nieces, nephews and others the lessons she has learned along the way like to be kind to everyone. I am so thankful for her advice and Godly example. She is a gift to us and I thank God for her often. Good luck with your journey. I will keep you in my prayers.

  • Mary - You write so beautifully and I appreciate everything you share, because your story inspires me! This was absolutely moving. May the road ahead be filled with blessings for you and your special little girl.xo.

  • jody - Darlin’ Ashley,

    I am the momma of three, and the grandma of two. A teacher of 35 years. Don’t spend any time worrying, Honey. Letting Little One know she is normal, fine, and loved is all that matters. No excuses, no “…you’ll catch up…” You just keep giving her love and unconditional family.

    I believe, after all these years of doing what I’ve done and learning along the way, that all is well. All is well. Stuff is going on inside of this little person that we don’t get out here, but it is stuff that is making her make sense of everything, and make it so that she is able to move ahead. We’ll never get it, because who of us have gone through this? Reactive Attachment MAKES SENSE. Honestly, God bless her for having the strength to stick up for herself! She will speak just fine, and she will speak poetry and joy. She’ll simply do it when it’s her time. Actually, she already is–some of us are just to stupid to understand her.

    You are a wonder.

    I promise.

  • Darcie - Ashley – we discussed a little of this at the CW last August. My husband and I have traveled to Israel twice together, with an American tour guide that was born with a cleft lip and palate, and his story is probably similar to your Children’s Pastor. He never imagined that he would be speaking to large groups of people, leading them around the Holy Land and teaching them from Scripture. He was the kid everyone made fun of. And now, he’s had an impact on thousands upon thousands of travelers, teaching them about Scripture and making it come alive for them. How cool. And I know with parents like you and Chris, Little Sister will have an incredible story to share someday about where she came from, where she’s been and how she’s been perfectly designed. A joy to watch her grow!

  • Jenn - Love it

  • Brooke Leigh - My 3 1/2 year old daughter says a handful of words as well. She understands everything I say to her & can follow out tasks non-verbally. She’s had home speech therapy & is now in the school district twice a week. I long to hear a sentence, a phrase, anything more than a one word reply. Not because she’s “behind” but because I want to hear her beautiful voice & learn more about her thoughts. Our daughters voice will be heard, and they will move mountains.

  • Anna - Wow this is beautiful. What you are doing for her is beautiful what she is going for you is beautiful too. I had tears in my eyes reading this and that you sooo much for sharing. You guys have such a lovely relationship I pray that your lives together will be an adventure which brings joy and beauty to all those it touches.

  • Cynthia Contreras - This is such a beautiful post. Your daughter will speak just have faith. I have an 3 year old autistic little girl and she doesnt speak yet either but all her teachers are working hard to help her as well as our whole family. I too cant wait for the day to have a whole conversation with her and even to hear how her voice is going to be. I have dreams all the time that shes talking to me! She is such a smart little girl and I wouldnt trade her for any little girl in the world. Time is the key! Have faith and your daughter will talk! She’s amazing and so are you!

  • Janet @ ordinary mom - My daughter had significant language delays that she is still working on. Hers weren’t due to a cleft lip but were spectrum based we were told. She started school with an 80% gibberish language that only I could mostly understand. I too carried the fear that I would never hear her truly or know her. I wanted a glimpse inside.

    Happily 4 years later and her struggles are so minor that only I notice when she trips over certain phrasing. It’s amazing and such a gift to be able to ask her about her inner voice.

    It is hard to wait but you will get there. And these struggles will become just part of the journey.

  • Kimberly Dial - Ashley, thank you for sharing Little One. I have both laughed & cried as you’ve shared every mile of her journey. I believe she’ll accomplish great things in her life. Thank you again for sharing this awesome story πŸ™‚

  • Katie - What a beautiful post!

  • Chantel - Ashley, your words made me tear up. This is absolutely beautiful!

  • Weekend Favorites « Jen Loves Kev - […] I am so touched by how Ashley shares stories about her daughter. So tender and raw. Love their […]

  • Ernie Treu - Praying for you and your girl πŸ™‚

  • Kate @ Songs Kate Sang - Thank you so much for sharing this journey. I am so thankful that you were placed in her path. You and Chris are such a wonderful foundation for her.

  • Sarah - I don’t know how you can look at that photo and just love her without ever meeting her. You can tell she is very wise and has a lot to ‘say,’ when the time is right.

  • Amber - I can so relate to this. Our 2 1/2 yo daughter spent her first 10 1/2 months in the ICU for a CHD. She had countless open heart surgeries, intubations, and spent most of the time laying in a hospital bed. She ended up developing a severe oral aversion and so has not learned how to eat or talk. She is also on par with a one year old, but very smart. She can point to what we are talking about, knows lots of sign language and song gestures. I too wonder what she is thinking…She has started to seem very frustrated when she can’t get her point across and instead of talking has taken to screaming or yelling. Speech therapy has not been helpful, so we are just trusting that she will decide to one day start talking and eating, with a lot of work and guidance on our parts, of course. Thank you for talking about this and opening your life to us, it makes one feel not so alone:)-Amber

  • Katie Smith - What a beautiful post. It touches my heart as my son has an expressive language delay and at 3 he struggles to communicate his thoughts and needs. Although he is making great gains, I connected so much to your desire to hear your daughters voice… what is going on in her head… what she has to say. I can’t wait for the day I will hear my son’s thoughts, ideas, dreams. That day will come for us!! πŸ™‚

  • Rikki - So beautiful. She is so beautiful and your mothering spirit is just stunning. To have the strength, you, her, and your family – to accept, love, and embrace all that she is… it’s truly a blessing for each of you.

  • Keshia - Beautiful! The resilience of children is amazing. I have watched her blossom being apart of your family. I love “Little One” and her story.

  • christina larsen - Speech and language difficulties are a very real challenge in our home, as well. Olivia didn’t hear until she was 3 yrs old. She had her cochlear implant in Korea, then when we brought her home we did her second ear. Yes, she can hear. But because of all the years she couldn’t she has significant auditory processing difficulties. Things that we took for granted with our other children, are a challenge for her. She asks all the time, what something means. Even words she should have learned at the age of 3 or 4. We also do speech therapy. Her articulation has greatly improved in the 1.5 yrs that she has been doing it. She is easier to understand. I know that one day she will be speaking and everyone will hear her and understand her. It is just a challenge at times. Hang in there, it will come. I just wanted to share.

  • Nikki - Hello – I’m don’t usually comment on blogs…basically more of a stalker πŸ™‚ BUT, I just found your blog and fell in love instantly. I’m a photographer + mom of 5 (my 5th being adopted), too. Thanks for sharing your life and encouraging others along the way. If we were neighbors I’m sure we’d be the best of friends!

  • Noelle - My daughter was born with a submucosal cleft palate. We have seen speech therapists since she was 6 months old. Her ENT wanted to hold off on surgery until she was four. Last summer she had the repair surgery. She has done so much better over the course of the year and we are very proud of her strides. Lately, though, she has been falling into some of her old speech patterns and can be very difficult to understand. She wants to speak quickly like her friends and sisters but can’t.

    Reading your post was so encouraging. I understand all too well the frustration and sadness that a speech impediment can have. It seems so small but when you just can’t figure out what they’re trying to say it’s horrible. It’s hard to see them retreat because no one can understand them.

    But, today, you gave me hope. Thank you.

  • Abbie - This moved me to such sweet tears. I’m currently starting the journey to becoming a Speech Pathologist. I can’t wait for the day your Little One is talking right along with her sister and brothers. Such a sweet victory is headed her way!

  • Allison - precious

  • Emily - She is so beautiful! And one day she will fill you in on all her thoughts. You are amazing parents! Keep it up, she is blessed to have you as a momma as much are you are blessed to have her a little one.

  • Melissa - I so get you on this post. My older daughter has Down syndrome, and with it a significant speech delay. She too understands everything. She’s been signing since she was about a year old, but lately all she wants to do is talk and talk. There’s a lot of it I can understand, but even more that I can’t. She talks like me, with her hands waving everywhere, and I hope that one day I can understand all the stories that pour out of her.

  • beth - I’m a long-time reader and I’m not usually one to offer parenting advice to strangers but this is another blogger I follow and I thought her use of an iPad to support her child’s speech might be useful to you. (I realise your little one and hers are worlds apart in terms of their language delays but it might be useful)

    http://niederfamily.blogspot.co.uk

  • AshleyAnn - Thank you Beth!!

  • Kimberlee Jost - Just catching up…
    I believe God is going to use her voice too, because he already is.

  • Sarah Lee - She will grow up to be a strong woman! She will get her ideas conveyed with much clarity and intelligence. I respect you for being such a strong and supportive mom. You have tekan a big step in getting her cleft lip and cleft palate treated. I recently happened to read a blog on cosmetic surgery whic spoke about the importance of getting cleft lips treated early. You have done your part, now leave the rest to God and wait for miracles to happen πŸ™‚

  • elizabeth H - Little One is going to THRIVE! You can see love in her eyes!
    What a blessing she is!

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