About

Welcome to Jameson’s Journey!

I started this blog shortly after Jameson was born.  I spent hours searching for other families, kids, and adults out there that had been through this and that knew about Pfeiffer syndrome.  But, information was limited.  I began documenting our journey to reach out to the world and connect with other families out there.  It quickly became therapeutic for me to write.

I can honestly say that when Jameson was born, craniosynostosis, let alone Pfeiffer syndrome, was something I knew absolutely nothing about.  We have learned so much about craniofacial syndromes and craniosynostosis along the way.  In the beginning it seemed like a race gathering medical information, all the while coming to terms with understanding what new path our lives were now on.

Now that we have that under our belts, navigating the social aspect that comes with having physical differences has been challenging, emotional, and rewarding all the same.  I hope that sharing our experience and Jameson’s journey throughout this process will help other families and children in similar situations as well as to help educate and spread awareness as we ourselves continue to learn along the way.  I know it has helped me immensely.

Fast forward to 2016:

Earlier this year a meme was found circulating the internet of a picture of Jameson making fun of his physical appearance.  It has been a fight; a roller coaster ride for sure.  This terrible thing has brought so much awareness and has really inspired us to do as much as we can to create change.  There are legal and moral issues surrounding this issue, and we are determined to make an impact.

Kids born with craniosynostosis, syndromic or not, spent countless hours in the hospital, and at doctor’s appointments.  Kids and their families miss out on so much time that should be spent on simply being a kid and enjoying life.  In addition to the medical challenges, our kids deal with the stares and whispers of people who don’t know or haven’t been around kids who have differences in their appearance.

We want to change that.

As of June 3, 2016 Jameson’s Journey officially became a 501c3, non-profit organization!  My husband and I feel like we are traveling down a road that we were meant to be on, and it truly feels amazing!  To learn more or check out what we have going on our official website for the non-profit is www.jamesonsjourneysa.org.

We hope to share so much with other cranio families as they travel on their journey.  We have been given so much from the cranio community and we want to give back everything that we can.  We hope to bring joy and smiles to as many faces as we can while spreading awareness and education about cranio, Pfeiffer syndrome, and how to simply be kind to everyone!

But stick around here – I’ll still be blogging about Jameson and our family on our crazy adventures in this wonderful life!

 

 

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146 thoughts on “About

  1. I just wanted to say that your son, Jameson (and your family in general) is an absolutely gorgeous little boy! I ADMIRE your strength as parents and the understanding that you’re raising your children with. You and your family are amazing! Please, please, PLEASE keep up the wonderful work that you are doing raising your family. Give your kids tons of hugs and kisses, and please tell Jameson that he is beautiful!

  2. Gorgeous, gorgeous little boy. My little man, Ryan, was born in Jan 2012 so we have boys the same age. If you are ever in the Boston area, would LOVE to get together and have a playdate. He’s a beautiful little man! All our love,
    Meghan Harney

      1. I hope I am commenting correctly on your site? I love your story and I loved your article “He’s Not Scary, He’s a Little Boy. “. I saw it posted on FB this morning and it brought me to your site. Jameson looks like such a sweet boy! Are you familiar with the book “Wonder”? My daughter’s 4th grade teacher said the students were not allowed to leave 4th grade without reading this book. My daughter loved it so much she bought it for me for Mother’s Day and we started reading it aloud as a family. Her 5th grade teacher this year has already read it as a read aloud to the class and my son’s 4th grade teacher just started reading it a-loud, as well. Jameson’s story reminded me of the character in the book, Auggie, and has touched my heart and my kids hearts. I couldn’t wait to share your article and Jameson’s story and pictures with my kids at dinner tonight. Thank you for sharing your story.

    1. Jameson really is a very handsome boy! I read your article, loved the message and it will help with my strong-willed little boys (one is 3 and the other 18 months) when they meet others with differences. In your case though, I’d have no problem explaining anything because his little differences make him even cuter.

  3. I wanted to tell you that Jameson is a month and 3 days older than my son, Niko! I don’t know why but that made me very happy. 🙂 I loved your most recent post and I love knowing that should my child say something embarrassing it is okay to approach the other child and introduce ourselves. I have never known what to do in those situations. Thank you! I would like to think our sons would be friends. My son was also born with some complications – nothing serious but enough that we spent much of his first year and a half concerned and in and out of hospitals. I can only imagine what you all have been through. You little boy is a beautiful little person! He is so very lucky to have you as his family!!!

  4. And as Meghan said above – if you are ever in the Orlando area – we would love to have a playdate as well! Jameson will have friends all over! 😉

      1. I live in Corpus Christi, Texas and I just love your story. Jameson is such a beautiful child and I admire you so much. My Great Niece is 4 and has Downs Syndrome and we have had children with their parents say that Amelia looked funny. I’m going to keep watching your blog and watch Jameson grow up. God Bless you and your family and as I told my Nephew God only lets special people have special kids.

  5. My name is Julianne and I am pleased to virtually meet Jameson. If perchance you find yourself in the Boston area, I’d love to meet Jameson in person.

  6. I think his smile is contagious all by itself!! There’s probably an infectious laugh to go with it!! As a mom of 3, I raised my kids to love all children and that it’s not nice, polite or allowed at all to treat someone differently. It came to pass when they were a bit older, that someone made fun of them about something very minor, but very major to them I’m sure! My youngest just said, ” but mom… didn’t their parents teach them the rule? About not hurting feelings? Their mom did not do a good job at all.” That made me smile. Knowing that he would grow up with empathy, and raise his children the same way. There has to be that golden rule for all… to do no harm. What a wonderful world that would be for Jameson to grow up in. Keep the great stories coming!!

  7. You have a brave and beautiful little boy . Beautiful family! Don’t loose hope mum and dad,stick together ,put all the love. It will get better!

  8. “Come Touch His Cheek” by Gary Shulman, MS. Ed. ©

    This child of mine you stare at so,
    Please come closer so you will know
    Just who my child is and what I see
    when those sweet eyes stare back at me
    I see no limits to my child’s life
    Although I know
    It will be filled with strife,
    I’m hoping that doors will open each day
    I’m praying that kindness
    will come his way
    You look frightened?
    You tremble with fear?
    Come, come closer
    touch him my dear
    Touch his cheek so soft
    so sweet
    Be one of those people
    he needs to meet
    Someone who will look
    and hopefully see
    The skill, the talent
    The ability
    Please come closer
    You don’t have to speak
    Come a little closer
    Just touch his cheek
    And when you do
    you will see
    this sweet, sweet child
    is no different
    than you or me

    1. Shared this on FB. Hope it goes viral. Thank you for this. I know it was posted here for Jameson and rightly so but when I read it I thought of my own son too. Thanks again.

  9. What an absolutely precious little boy Jameson is!! God bless him and your entire family!! Thank you for sharing his courageous story!! If your ever in the Scranton, Pa. area please know that you have friends here who would love to meet you all!!!

  10. Aw! Born the day after my youngest daughter! Your words are very helpful to me as I want to help my children remember what it means to choose kind. I don’t want to be the parent to say “be nice” and walk away so thank you for your perspective. It is incredibly helpful!

  11. I think He is great!! We have a son Nick who has Apertes Syndrome which as many of the same characteristics plus syndicalism of the hand and feet. Nick is now 26 and when kids ask him about why he looks the way he does, he simply says god made me this way. He has been a true blessing as your son is. Please look into CCAKIDS.ORG…you will love it!!

  12. My son was born with a bilateral left cleft lip/ palate. He has an older sister who adores him and was explaining to all the kids at her school how he was going to be born with a boo boo on his face, but the doctors would fix it. I myself were able to educate some of these children on his condition not long after his birth. I allowed them to ask any questions they wanted and to this day, a year later, they all adore him. I was scared at what people would think at first until I later eyes on him at birth for the first time. It was true love at first sight. Your son is absolutely beautiful and educating children and adults is the best way to go. You’re doing a great job.

  13. I am sitting here trying to find the words that I want to say, but I don’t know where to start! Your son is so precious and as I read through all of your posts from the very beginning, it brought back so many precious and difficult memories of my daughter’s life! It is so strange that I came across your article in the Huffington Post tonight. My daughter, now 25, called me to tell me that my nephew’s wife had “liked” an article on Facebook that I needed to see. You see, my daughter was born with Crouzon syndrome. My daughter’s doctor is Dr. Jeffrey Fearon! She has been his patient for 23 years. You couldn’t have found a better, caring and kind doctor than Dr. Fearon! God bless you and your little boy. I wish that I could have found the words to say all those years ago that you said in your article. I know exactly what you are going through. Let me tell you that you are doing a wonderful job and just keep doing what you are doing. My daughter is a beautiful young lady and is engaged to be married in December 2014. She is a stronger person for all she had to endure and she will (I believe she left you a comment as well) tell you herself that after awhile she just didn’t let it bother her. It hurt me more that it did her. Life goes on, people and children will be hurtful, but just rise above it!

    1. Wow!! Thank you for sharing that! We wouldn’t have any other doctor, and would gladly travel from wherever to see Dr. Fearon!! At our post op appointment this last spring there was an 18 year old young man in the waiting room. When Dr. Fearon came out I could tell he’d been his doctor for quite some time. I thought to myself, that will be us one day if we are lucky!! I’m glad to hear your daughter is doing so well!

  14. Just wanted to sat that I think you are a wonderful mother and Jameson looks like such a sweet boy. My son is two months younger than your little one. I will keep your family in my thoughts, it’s hard to imagine all the medical procedures your little one must go through. He sounds so strong and brave. Love from my family to yours!

  15. Thank you so much for this. I, myself as a parent sometimes do not know what to say when my son asks questions or says a comment in front of people. As to where I just want to ask many questions but think it is rude to do so. I work in healtcare field and i love it. Love working with people who have different diagnosis or conditons. To me, their condition does not define who they are. They remain a whole person. That is what i first see. Then the curiosity of learning something new comes in. Thank you for your blog. I will share with my family and keep reading. Thank you again for sharing 🙂

  16. As a new mother, my heart goes out to you and all you have been through. You are strong, courageous and and inspiration to all mothers facing the journey of motherhood. I was deeply touched by Jameson’s story. He is beautiful and a blessing. Thank you for sharing.

  17. Thank you for sharing your story. You have a beautiful son and he obviously is very fortunate to have a lovely mother as well. As a mother, I know firsthand that love between parents and their children trumps all! Best wishes <3

  18. Thank you so much for sharing your thoughts. I’m an aunt who has a beautiful nephew has a craniosynostosis. I totally understand what you saying , yes it still hurts me every time people are staring my boy and he is reacting very agitately why they don’t want hug him. He just got his surgery today I’ll come see him to cheer him up and her mother. Since his birth I’m being with him and every single surgery. Thanks to your journal I’m gonna try to be positive my little angel. And I ‘ll share your story with other parents in Korea. Thanks again. So beautiful boy you have !!!

    Eunjeong KIM(happy with my nephew) from South Korea

  19. **hugs**

    I know what it is like having a “normal” pregnancy and then discovering some news that will link you deeply to the medical field forever. He is so adorable and I love how you have created this blog for him! My daughter was born with Turner Syndrome and I feel like I am empathize with you a little bit. Especially when I read how you can kind of “psych” yourself up before surgery and rattle off a thousand things on why it is going to be okay but then there is a moment that comes when you realize- it may not. The way you wrote it was so perfect and exact I had to read it to my husband (our daughter has open heart surgery last year and I feel like you could have written that about me in regards to her surgery!)

    Anyways- best wishes and I hope your blog can educate others to accept and try to model good behavior when it comes to people with some differences! (Not only for your little ones, but for my daughter, myself, and etc). <3 <3

  20. All three of our children have metopic craniosynostosis. Our middle child has been through 2 major surgeries. I too have gone through something similar with all the stares and whispers. Your post really touched my heart. Thank you for sharing. Always tell your boys that they are amazing just the way God made them.

  21. I just came across your blog because a friend “liked” your article that appeared in the Huffington Post. I read through some of your posts and wanted to let you know that your Jameson is a beautiful little boy. My husband was born with Crouzon’s Syndrome in 1967 (at least at the time that is what they diagnosed it). He has had many surgeries and most people don’t even know it. I don’t know that much about what he has been through, simply because it was before I came around, but I do know that he had to have a trach when he was about a year old and after he graduated in 1986 he went through a 17-18 hour surgery. We now have 2 beautiful children that have no signs of the syndrome. They can be tested to see if they carry the genetic mutation, if they choose. I was monitored during my pregnancies to see if they were developing the syndrome or not. Thank you for writing your blog. I hope more people will read the article that you wrote about being sensitive to others, and we as adults need to make sure they do so. Blessings to you and your beautiful family!

  22. A classmate of one of my children had surgery for reconstruction for Crouzon’s syndrome during their kindergarten year — (1993?). All the kids were very matter of fact about it because they had been well prepped…except for one child who was disquieted. He couldn’t see any difference!
    My reaction on seeing Jameson — intact palate? smilin’ eyes? looks good to me!
    Keep up your instruction and rejoice in the pleasure of his company <3

  23. Thank you for sharing your heart. I have two boys aged 14 and 12, and your essay touched me. By the way, two years ago all the students at my son’s middle school in Northern Virginia were required to read a book titled “Wonder” over the summer. It is an amazing young adult book about a boy with craniofacial medical issues. Our whole family read it. During the school year, English teachers used it for assignments and the administration used the theme of the book, “choosing kindness,” to talk about dealing with bullying. I hope as you settle in your new town, people will feel comfortable introducing themselves and just getting to know your child for who he is. All the best to you and your family.

  24. I’m sorry, but all I see is an an adorable little boy. How can you not love that face?
    When I saw Jameson’s photo, I fell in love with his beautiful smile. It made my day. You are so lucky to have such a beautiful little boy. I wish others would see the magic of Jameson and who he is.

  25. I just want to say I saw your piece in HuffPo which led me to your blog. Jameson is just so darn cute, I love looking at pictures of him. Jameson is lucky to have you as his mother, such a strong role model. Going to all those doctors appointments and waiting for test results – I just cannot imagine how exhausting it all must be. And I cannot imagine how other people must treat you. I hope that it’s more good than bad, but I fear the opposite is true. So I wanted to be one more good one. You’re story has moved me, and I just love that little boy of yours. If I could – I would plant a big wet one on that cute little face of his (he’d probably wouldn’t like that, a stranger kissing him, but you get my point). Hugs to everyone in your family and thank you so much for sharing your story with the world.

  26. Hi,

    My son was born in 2001. He had craniosynostosis, which was eventually corrected with surgery. I totally understand your pain when people say hurtful things about your baby. Jameson is just adorable. Thank you for your compassionate words and advice for parents who don’t know how to respond when their kids make these comments. Good luck to you and your beautiful family.

  27. If you ever come up to New Hampshire you are more than welcome to come for a play date! My 5 year old and 3 year old will be so excited! He is so beautiful!

  28. I am glad to find your blog here! I am studying genetics & training as a pediatrician. Admire your strength and bravery toward your son. I subscribed your blog and wish to read your stories with my heart. Thanks for your showing great love!

  29. When my son was 15 months old, he was diagnosed with a kidney disease & spent about 2-1/2 months in a major children’s hospital. While there, he & I befriended many children with various medical conditions, some that were physically apparent & some that were not. As a result, my son had the benefit of growing up being a very nonjudgemental person. Now that he is grown, I hope to have a grandchild someday. I will consider myself very blessed if I were to get a grand-baby as beautiful & amazing as Jameson! 🙂

  30. I appreciate your suggestion because as a parent of a preschooler it can be paralyzing when your child points out a difference in strangers (so far, it has occurred for me with tattoos and facial piercings). However, I wonder if it is more of a personality thing…. I follow a blogger who experienced 3rd degree burns all over her body. She has expressed in the past that she is humiliated and uncomfortable when parents use her as a ‘learning experience’ for their children and prompt them to ask questions about her looks. I just am nervous to approach a parent and child if they might be upset and don’t want interaction…

  31. You are courageous…….and you nurture that in Jameson. And that communication, that bond, that spirit will take him as far as his imagination will allow.

  32. Hello…I tried to reach u via fb but not sure if I picked the right person. The children of Gateway Ministry would like to send Jameson an anointed stuffed animal to let him know how special he is…please let me know address info if this would be OK. Thank you and God Bless, Mrs. Lake, teacher

  33. Its not very often that I come across the word craniosynostosis – a word I heard for the firs time when my youngest daughter was an infant. I had a normal pregnancy, natural vaginal delivery and we thought that everything was fine with our beautiful little joy. Within 5 days of her birth it was determined that she could not have ‘normal’ bowel movements; tests revealed a malformed colon. Then at 4 months the pediatrician was concerned about the shape of her head. (We thought that she was perfect, didn’t see anything out of the ordinary.) She was referred to a pediatric neurosurgeon who confirmed the diagnosis of craniosynostosis: she had complete bi-lateral fusion (left to right) so her head could grow only front to back. Surgery was scheduled 2 days later. The plates of her skull were still thin and flexible enough that her head reshaped itself as soon as the fusions were removed. She had 36 stitches in her tiny little head like a headband running just behind one ear over her head to the other ear. In PICU she ran a fever for two days and was so swollen that she couldn’t open her eyes. But as soon as the fever broke and she could see she was unstoppable. She wore protective headgear for 6 years (and hated it even when we covered it with white spandex and gems!). The malformation of the colon was attributed to the craniosynostosis and would not be surgically repaired unless the blockage or hemorrhaging became life threatening (thankfully it did not). We managed the colon issues with diet and bio-feedback until she grew enough and the malformation decreased in size. When she got older her jaw stopped growing. The resulting misplacement of pressure on her upper pallet caused the facial bones under her eyes and cheeks to spread. Springs, wires and orthodontia re-aligned her bones and teeth and her lower jaw was surgically enlarged 3/4″. With all of this she also experienced polio (reaction to her vaccination) and encephalitis. But it is all good. My daughter has grown into a beautiful, smart, delightful, focused and very strong young woman who currently works and attends graduate school full time. As I am certain you have found with your sweet Jameson, they have amazing strength, determination, find joy in everything and nothing will hold them down (however, there were times when I had to bite my tongue it was so very hard to watch my daughter struggle). You are so correct in encouraging an honest and compassionate conversation about what is going on with your son. Information and understanding was what eased my daughter’s way as she was growing up. People become less frightened when they know the facts. Best of luck to Jameson and your family! You will always be in my thoughts and prayers.

  34. Thank you for recommending this book. I work with adults with disabilities. They are all types of disabilities, and they never judge each other for how they look. Each and everyone of them is beautiful.

    I will enjoy reading the story as will others I share it with. Thank you.

  35. i just read your story via a friend on Facebook and was wondering if you’d heard of Lentil the French Bulldog? He and his owner are in the midst of a cross-country tour visiting children with facial difference. If Jameson likes dogs it might be a fun treat for him to meet little Lentil who was born with a cleft palate. Here’s his page: https://m.facebook.com/MyNameIsLentil?_rdr

  36. Your baby is GORGEOUS & BEAUTIFUL!! I would be honored to meet Jameson and you! All babies are a blessing and are sent to us for a reason. Blessings, love, and light to you and your beautiful family.

  37. Hi mommymeyer…. I wrote you a message earlier and for the life of me can’t find it but I too am a mommy of a son with pfeiffer syndrome and I too hadnt a clue what it was. So basically I know your every thought and feeling. I have cried the same tears. Jonathan will be 14 in january . He underwent the same surgery as Jameson but at almost 4. The surgeons hope to perform his midface surgery in 2 years. Its being a long road. I think the bravest of us all are our boys mommymeyers. I too have those same photos after the 1st surgery and jonathan too was smiling after 2nd day. Your eyes are certainly opened when we see what they go through and dont complain. Jonathan excels both academically and on the field. Winning all round. We live in Ireland so perhaps one day you will come here and we can meet. Hey lets just say its not all that bad having pfeiffers…. we just made new friends. . Shirley x

  38. Jameson is lovely little boy and he must be so proud of his mammy sharing this with the world. We live in Ireland and have read this, we can’t obviously play with Jameson but if he would like an irish pen pal we would happily send him letters and pictures so he knows he has friends all over the world.

  39. I just want to say that your son is absolutely beautiful. You should never let what other people say effect you. It may hurt, but at the end of the day, you still have that precious, beautiful baby to love on, regardless of what other people think he looks like. I was reading my daughters devotional to her last night. It said that you are wonderful, no matter what the world around you thinks. This world is ran by the father of lies. Lies are being said about your son. The devotional also stated that God took time and carefully created us the way he wanted us to be. Dont worry about what the world around you has to say, Jesus still loves us and we are wonderfully made in the eyes of God.

  40. I have a daughter with 90% of her body covered in severe psoriasis and a son with Down Syndrome. Your blog post featured on Huffington Post this morning brought a huge grin and a tear of joy. Thank you for saying so eloquently what I knew to be true but never had the words for. Your little boy is a stud. Thank you for sharing him with the world!

  41. Thank you so much for sharing your son with us! I’m the mother of a thoughtful 10 year old, but one that has also been known to stop and stare at those that are “different. ” I never knew what to say to him other than “It’s not nice to stare” and “How would you like it if someone stared at you?” Your suggestions are greatly appreciated and will make quite a difference to all the parents out there that read your story. Thank you!

  42. I just came to your story yesterday thru a shared on FB from the Huffington Post. Tears immediately came to my eyes and still do every time I read your story. It was so poignant and beautifully written and your picture is just precious. God bless you and your adorable son!

  43. Jameson is very cute-he looks very huggable! I have a daughter who has a disability and we know what it’s like to be stared at.
    There is a man in Australia by the name of Robert Hoge who has written a wonderful book about his experiences growing up with severe facial and physical deformities.This is an excerpt from his website roberthoge.com:

    Ugly: My Memoir
    Last year I wrote a book. Here’s what it’s about:
    Robert Hoge was born with a giant tumour on his forehead, severely distorted facial features and legs that were twisted and useless. His mother refused to look at her son, let alone bring him home. But home he went, to a life that, against the odds, was filled with joy, optimism and boyhood naughtiness.

    Home for the Hoges was a bayside suburb of Brisbane. Robert s parents, Mary and Vince, knew that his life would be difficult, but they were determined to give him a typical Australian childhood. So along with the regular, gruelling and often dangerous operations that made medical history and gradually improved Robert s life, there were bad haircuts, visits to the local pool, school camps and dreams of summer sports.

    Ugly is Robert s account of his life, from the time of his birth to the arrival of his own daughter. It is a story of how the love and support of his family helped him to overcome incredible hardships. It is also the story of an extraordinary person living an ordinary life, which is perhaps his greatest achievement of all.

  44. I just read your story and wanted to let you know, I think he’s adorable! I have a little boy and try to teach him that our differences are what makes us speacial. In our house we celebrate our differences and enjoy being “strange and weird”. Thank you for sharing your journey and I will share it as well 🙂 best wishes!!!

  45. I came here after seeing a link online, and I must say that my eyes welled up when I felt your pride and strength through your words and the photos showing absolute love of such a brave little boy. After working with CP kids, I always intended to encourage my son to extend beyond shock and get to know the people behind the diagnosis, but you have given me advice that I will never forget. Instead of solely advocating acceptance and respect, I will be encouraging him to engage straight up. If he sees a ‘scary’ or ‘different’ child, I make the promise that we will introduce ourselves, learn their name and make the absolute effort to include them in our world, even if just a fond memory of the day we learned something new from someone exceptional.

  46. After reading your story on an Australian news site, I was brought to tears at the thought of Jameson being treated different to the other children. He’s not scary, quite the opposite. A teddy bear with big eyes, a cheeky grin and I bet he gives the best cuddles!

  47. I just read about your son Jameson, he seems to be just a normal little boy, enjoying everthing that other little boys enjoy. I don’t know why people have to judge by first glance only. What is normal? We were taught , as you said to define the “odd” in what we see. When I was a child, in elementary school, we had a boy move to our little school in the country. I do admit, I was a little apprehensive the first time I saw him, he had a mild case of Downs Symdrome. I went home and told my mother about him, his name was Bryan, by the way. You know what my mother told me? She looked straight at me and said, ” Everyone is the same in Gods eyes, just because Bryan looks different, doesn’t mean that he is.” You know I went to school the very next day and started talking to Bryan, you know my was right! Once I got to know him, he wasn’t any different than myself. He liked the same things I did, Matchbox cars, GI Joe, playing outside. We became almost best pals, until his family moved a couple if years later. I never saw my friend again. After reading about Jameson, that brought back those memories of Bryan. God bless Jameson and his loving family!

  48. You can tell that Jameson has a huge heart and a loving soul. He is beautiful inside and out. I had issues with both of my boys and when people would stare at either one of my boys I would look at them and ask them if they had any questions that I would be more than happy to answer, each time I did that the parent or child would then ask me questions and once I explained they understood and thanked me for educating them. Of course there are those people out there that don’t care so it doesn’t matter what you say and to those people they are not worth even wasting your breath on much less care what they think. Just teach Jameson as he grows up that it’s not what other people think of you its what you think of yourself. Encourage him to be proud of who he is and that looks do not matter(they should not matter). My boys are 30 and 27 now and they are very strong men and they stick up for themselves but they are also very senssative to others feelings and if they see a child being picked on they step in to help.
    It is a joy to have children and to raise them no matter what the difficulties in life are.

  49. Thank you for sharing yours and Jameson’s story. Reading it has brought tears to my eyes. You are filled with courage, strength, love, pride and adoration for your boy – just as every mother should be. Jameson is very lucky to have a mummy like you, and you are lucky to have him as your little man (as you already know). I have a 5-year-old son who, like others his age, is very observant to the world around him so when he notices objects, animals and people that are new or different his first reaction is always one of curiosity and often staring. When he asks questions we like to answer in a truthful, matter-of-fact way so that he gains an understanding. We teach him that EVERYBODY is different in their own special way with their looks, their personality and what they like or don’t like, and that the important thing to look for is whether people are nice and friendly. Parenting has its many moments, no matter what age/gender/race/religion you may be and being a parent is difficult, funny, silly, frustrating, upsetting, happy, surprising, fun, sometimes embarrassing but overall it is an honour and a joy. You have a wonderful attitude towards life, and with this guiding him Jameson will lead a good, happy life just like every little soul on this Earth deserves. I really appreciate your advice to other parents. You have taught me something very valuable and I will pass this on to my son at every opportunity I can. Draw your strength through your love for him, and in turn he will draw strength and love and so much more from you. All the best.

  50. Hi,

    I randomly saw your blog and his smiling face. My heart goes out to you and your family, he looks like the sweetest and most adorable little man. You are blessed with such a gift for a son.

    I hope it all works out the way it should,

  51. Thank you for your fab article in the Huffington Post. I’m the mum of a very inquisitive four year old who asks questions all the time without any malice. Your post really opened my eyes to what it is like to be on the receiving end and it will hopefully give me the courage to reach out the next time I am in a similar situation.
    Jameson is very lucky to be surrounded by people that love him and that teach him what really matters in life. Hugs and best wishes to all of you.

  52. Hi, to all the family, sorry in advance for my English mistakes… I’m Mindy and I was born with miastenia gravis, I’ve been in a wheel chair some years of my life and been different until now, I was reading your post and it made me remember some cruel experiences I have lived. Now I am pretty strong and I try to stay like this and forget the negative experiences of my past. If you want we can talk trough facebook or wassap or whatever you want. It will be a pleasure to tell you more about me and to ear about Jameson aand the rest of the family! bye now hope to ear about you soon

  53. I admire your courage in speaking out. I am truly ashamed to admit that when I saw the photo of your little boy my initial reaction was to pay attention to his differences, reading your story made me reconsider my thoughts and question myself. What is worse is that my 5 year old son has sever autism and I have heard comments from others about his behavior, It was really confronting to realize that my subconscious thoughts were really appalling and along similar lines of what my son and myself have experienced.

    Thank you for speaking out and educating me. We are all just trying to do the best for our children regardless of their disabilities. I admire your courage and wish you and your handsome boy a happy future.

    After this post, I will make a small donation to Cranio-Maxillo Facial Foundation (my national charity for this condition) and encourage others touched by your story to do the same

  54. I agree wIt’s Brittney. You have a beautiful son and you are doing a marvelous job as a mommy! God bless you and your family.

  55. Hi, I have 33 years and I have sister, 3 years younger, with same condition. We are on the other part of the world and it was very difficult during childhood watch how other mock my sister. But, my parents were and still are strong, and we fought with all. Now I have two children and they love and cary of my sister. I learn them to love and care for everyone who is difrent. I hope you will persist in your life struggle. It is not easy for me to write in english, so i can’t write evrything I wan’t to say, but I am with You, with all my heart! I prey for you and I wish your familly to be strong and stay together. God bless your familly!

  56. I came to you through the HuffPo article you wrote, and just wanted to tell you how inspiring and provocative it is to me. It is wonderful for you to suggest teachable moments that make the world a better place for all of our beautiful, diverse, loving, perceptive little children. Best wishes to your sweet little boy (and all of your family), both during treatments and at the playground.

  57. Hi, Jameson! I’m Marcia. I wish I could meet you face-to-face, you seem like a wonderful, beautiful little boy, with eyes full of kindness and joy! Keep on smiling, sweetheart! <3

  58. Five years ago, I had never heard of cranio either, and then my nephew was born with it. Fast forward three years later, and my second nephew was born with it too. Both brothers have been operated on and things have gone so so well in their recovery, but my heart goes out to you because I can appreciate the stress after knowing my sister and brother-in-law have gone through it now twice. Your son is wonderful and beautiful-I enjoy your blog. As you give him a loving and normal childhood, he will give you the gift of his laugh and love, but also he will show you what you are capable of handling, as parents. You should be so proud of yourselves.

  59. Hi, I discovered your story on the Huffington Post’s article, shared on Facebook. I can’t imagine what you’ve been through and how hard it must (have) be(en). Jameson is really lucky to have such a loving family. From what you wrote he seems really brave and I admire him for that. All my best wishes & thoughts to your sweet baby boy and all of your family ! And thanks for your article, I will try to teach my son (8 months now), not just to stare but to go and say hi to a maybe different child, but just as nice as he is !
    Emilie from Bordeaux, France.

  60. My twin girls were born 25 years ago with craniostynosis there was no internet back then so finding information was very hard. Thank you for making people aware of this condition. My girls have felt the stares of strangers over the years because they are perceived to be “different” but I have taught them to hold their heads high and just keep on walking. They have turned into beautiful young girls who have good jobs and they are beautiful inside and out and hold their heads up high.

  61. Dear Jamison
    My name is Alissa and I am 11 years old. My mom showed me a story about you and your picture. You have a great smile. You are almost like a celebrity because you are on the internet and lots of people know about you. I wanted to tell you to always be happy and don’t worry about what other people think of you because you are AWESOME! I am jealous of you because I saw a picture of you with a huge catapiler. Wish I could see a huge catapiler too. Anyways thanks for making my day better by seeing your happy face.
    Hope you don’t have to go to the doctors anymore.
    From Alissa

  62. Came across your post on fb whicj brought me here.. Your article was really moving.. I don’t see anything wrong at all with your boy .. He is charming and has his unique footprint on the world.. Lots of love

  63. I read about your blog today on FB and just wanted to say thank you for sharing Jamesons story and giving ideas how to deal with questions our kids might ask when someone looks a little different. I’m all about honesty and think it is important to teach our children to just go and ask if someone doesn’t fit the regular shape – nothing scary or bad about beeing different, just about reactions of people who nevere learned that diversity is a good thing!
    So thanks again – I love this blog and Jameson sure is a cute little boy! If you ever come to Austria/Europe I would love to get together!

  64. Your son is so beautiful he just made my day. Sometimes I forget to be as happy and joyful as he seems! Tell him thanks for the reminder. World famous too it seems.

    Sean
    New Zealand

  65. Jameson is a darling darling precious boy and not a single thing less. Hugs and support from one little boy toddler mom to another.

  66. I have been so inspired reading about Jameson and your family’s journey. My youngest son was born in January 2012 as well…would love to know if you’re ever in central Pennsylvania so the boys could get together and play. Your son is beautiful and your story is inspiring.

  67. I just want to say that I think your little prince Jameson is super cute. I am a mom who appreciates uniqueness and teaches the same to my own, as my m did for me. May his spirit be stronger each day and may he have the best friends a child can have. Bless him and you.

  68. Your son is gorgeous, he is such an old soul but still full of mischief when you look in his eyes. Such amazing depth. I’m hoping that all is well, and I look forward to hearing more about your adventures together when you next update your blog. Happy Thanksgiving, all the way from New Zealand. 🙂

  69. Maybe you dont know but your letter to other parents has arrived to spain. I am no a father as i am still young for that, but i am a son whose mother became different when i was just ten. Your article has filled me up of inspiration. You are right about everything you say, when a child said/says something about her face, she approachs to him/her and tells some story and start a kind of conversation with the kids. But the hardest was when adults looked directly at her, i just made the same on them, it was my way to say, what’s wrong with you?? Finally i just wanted to say that after reading you article, i have understood how i felt myself. Thank you.

  70. I’ve just discovered your blog, and feel compelled to tell you (not that you don’t already know) what a beautiful child you have. The smile on his precious face is contagious. Even through the Internet! It amazes me how children can be so strong and so fierce, and probably don’t even realize just how incredible they are. Little superheroes I tell you. I was definitely having a rough day today and you and your son reminded me what life is really about. The love you have for your children is radiant. You said something in your blog about focusing on the good moments, and I can’t thank you enough for that reminder today. I have a three year old who is also a little different than other kids, and I think because she is different she has taught me the most beautiful things about life that nobody else ever could. I’m so grateful to her for that. Your son is beautiful both inside and out, so strong spirited for such a young boy, and it shows what a great job you’re doing as a mama that he’s such an incredible boy! Thanks for the smiles your blog brought me today, and I wish all the best for you and your sweet family!

    -Mia Anderson

  71. Your little Jameson is a gorgeous looking little man. I am sure along with the trials, you have had so many blessings having this wee chap in your lives. Never stop loving him.

  72. Hi
    I looked at little Jameson’s photo and thought “what a gorgeous little man”.
    What a blessing to have such a handsome little chap in your lives…
    New Zealand is a long long way from you, but i see you have reached a few hearts here already…
    take care..

  73. Hello. My name is Sarah Laffey. I’ve been following the blogs on your sites for a while, ever since your story was put on Yahoo. All I want to say is how beautiful I find your son. There are so many kids with the faces we find “normal” who have bad attitudes, and are in my mind ugly. Your son is beautiful, face and body!
    I know what it’s like to have multiple surgeries and things of that nature. I am eighteen years old and have stage IV Neuroblastoma, a type of cancer that attacks many parts of the body. I don’t want to make this about me; I just want to point out that any kid who is that age and can take criticism, hospital stays, sickness, and all that other crap is an amazing light to everyone! Your son encourages me to keep going when I read these articles! And I assure you, if I find anyone posting such a foul thing on my feeds, I will go and dropkick them!
    All my love and prayers,
    -Sarah

  74. You, your son, and your family are beautiful and wonderful. Wishing you all a lifetime of health, happiness, joy and love. Thank you for sharing your story and your experience.
    Since becoming a mother in March I am touched enormously by the love and commitment of other mothers and am always grateful for those who share their experiences.

  75. Dear Alice,

    Just read about your post. One year and a half I became a Father os a little boy and now I think I know the meaning of word love is. Sure I understand your feelings and just d’like to support you saying that you have such beautiful and blessed family. More than sharing Jameson’s story you are also inspiring the world.

  76. Hi,
    I’m sorry to hear about the horrible things said about your son. I don’t know if you heard about this facebook site but it called “My name is Lentil” and I’m not making fun of your son but the site is about a dog named Lentil who was born with a cleft palet. well the owner is a big supporter of craniofacial causes and she sends out medals and words of encouragement and visits camps for children with these issue and brings her 2 dogs that also have facial issues. its a very cute site and kids seem to connect with the dogs and the owner. I think your son would also enjoy it. Anyway I know peoples words and actions hurt but because you are an amazing mom you will raise your son to be and amazing, strong and confident person.

    1. Hi Jill,

      Yes! I remember reading about Lentil a while back! Such a cute an awesome way to raise awareness and reach out to kids <3

  77. Hi,

    I became aware of your main man Jameson on Fox News. You are a great Mom! What a great family. Warm hearted best wishes from Kentucky.

    Please let me know if you have a PO box or some other mailing address. I would like to send your family some Pizza Hut gift cards. Cool people deserve a fun meal!

  78. Hello,
    I, too, am sorry for the negativity you and your beautiful son have had to endure. Wishing you and your family all the happiness in the world!
    Best,
    Scott

  79. Hi,
    I read about the nasty and senseless posts about Jameson in the news in Australia, and followed the link to your blog. Two things stand out – 1) there is a great deal of love and strength in your family, both from you, your husband and children to Jameson (your soon looks like a great older brother, and is a credit to you), and 2) you will be helping many families by sharing your experience. I haven’t any direct experience with craniofacial issues in my family, but I feel that I have gained some understanding from your blog. I am sorry that you, Jameson and your family will continue to experience negativity, but I hope the sample of comments here shows that the idiots on Facebook and others of their like are the minority. You are doing an amazing job, and Jameson is a great little boy.
    Thank you, and best wishes to you, Jameson and your family,
    Paul

  80. Alice…..I believe an incredible small army has amassed around the world to help make sure that disgusting image goes away for good. You have many people out here protecting your little guy now! Such a terrible shame your family has had to experience this disgusting act….but something tells me this whole experience is going to really help keep your family strong and bonded. He may not understand all of this now….but someday he will see how many people cared about this and his well-being. I will end by saying…… you ROCK as a parent!
    Brett

  81. I’m going to say it – Jameson is ADORABLE! I came across the “Attn” post on Facebook and my heart melted just melted when I saw his picture. I honestly got quite upset when I read that people are making fun of him and I don’t even know you! Rest assured, for every mean-spirited jerk out there, there is someone who would like nothing more than to give Jameson a big hug! Do please continue posting about your little cutie!!

  82. Hello, I am from Brazil. (Excuse my english, it’s not so good)
    I was reading some things on my Facebook, and one of them was about your son, about how some people are using his photos to make ugly and sad “memes”, comparing him to a dog.
    I just wanna say to you that he is adorable, such a cute kid.
    Don’t take those images as a thing to make you sad, the people who done that is just bad, people who don’t thing about others person’s feelings.
    You should never let them try to make him or you lose your faith and smile.
    I hope, I believe, God never make mistakes, your son it’s PERFECT, because he’s just the way that God wanted him to be.

  83. He’s an angel! Adorable! Made by God! 😀

    How we use to say in Brasil: um pitchuco!!!!!!!!!!!!!!!!!! <3

    Congrats!!!!!!!!!!! <3 <3 <3

  84. I just read your family’s beautiful story. Thank you for exposing the vulnerable raw moments of hurt and triumphs y’all have experienced…that took incredible courage. That said, our culture never ceases to amaze me with it’s judgmental audacity. Your baby is beautifully and wonderfully made. I work in the public school system and I can tell you without a doubt that myself and many others I work with would do nothing less than shower that sweet angel with love and protection. Our campus houses multiple centralized programs for the district therefore has many students that receive special education supports and services. Because of this, we have the awesome opportunity to include our entire spectrum of students identified with special needs with our students not identified with special needs. It hurts my heart to read about the cruelty of people in these situations while the same people will cry over a killer lion being shot by accident. Good grief. We have lost our minds and priorities! I hope your family finds an enormous support and love from the world so maybe, just maybe, Jameson can see Hope and Love as it was created to be and value himself as so many of do. Hug on that baby for all of us! ~The Trevino Family

  85. I just read your story. I want tell you Jameson looks like quite a little character, looks so lovable and sweet. Try not to let negative people bother you, they apparently have too much time on their hands and need to find something better to do. They obviously have no clue what a blessing a child is. God gives special children to special people.

  86. It was a September that our family will never forget. The year was 1967 and I was born the following January. My older brother, Mike, was seven months old when he quit breathing. He was severely shaken by my mother. Paramedics and physicians were able to save his life, but his brain was deprived of oxygen and it caused irreversible brain damage. Numerous surgeries and experimental procedures forever left him with the mind of a seven month old baby. My family was dysfunctional to begin with and this medical condition pushed them beyond the capacity of human endurance. My father drank heavily and my mother put up huge emotional walls that shielded her from the outside world. As children, my brothers and I were severely abused and neglected.

    Mike was blind. He could not walk, crawl or roll over. Mike couldn’t speak words but was able to make babble type sounds. Mike could never tell me he loved me. He would never give me a hug or a kiss. He never gave me a birthday present or a Christmas gift. Yet, in spite of all of that, I loved him ferociously and I believe that he loved me.

    The Miriam-Webster Dictionary (2006-2007) defines love as “ strong affection for another arising out of kinship or personal ties” and “ unselfish loyal and benevolent concern for the good of another.” Love is so much more than that. Love is the most intense emotion that someone can have. Love isn’t an attachment to a cute pair of burgundy suede pumps or mint chocolate chip ice cream, both of which I adore. Love isn’t the fondness you have for your job, your house, your personal belongings, the music you listen to, the TV shows you watch or even the car you drive.

    Love is putting someone in a wheelchair and taking them to the park, even though you know you’ll get mad at people for staring at him. Love is having a rotten day and walking in the front door and having someone smile and squeal with glee upon hearing the sound of your voice. Love is sitting on the floor and letting someone pull your hair because, even though it hurts you, it makes him laugh. Love is a child waiting in their bedroom on Christmas morning, waiting for someone to be carried into the front room so they can be there when presents are opened, even though they have no comprehension as to what is happening. Love is a five year old patiently holding a cup up to someone’s mouth so they can drink because they are incapable of doing this on their own.

    Love is having the security to be who you are and knowing that the people closest to you will forgive you when you make mistakes. Love is knowing that even when you are too busy to spend time with someone, they will still be excited to see you when you return. Love is the pain you feel inside when someone close to you is hurting and you can’t do anything to help them. Love is the devastation that comes when someone close dies.

    My parents had their own demons to address and didn’t have time to teach me many things. I learned to love from my Mike. Ironic isn’t it? The one person who never spoke to me, hugged me or showed me any other outward sign that we typically associate with love is the one who taught me unconditional love. It didn’t matter how he was or who he was, it simply mattered that he was. I did all I could for Mike, because I loved him.

    I have children of my own now, two of whom share part of his name. I love them with the unconditional love that was taught to me by my brother. Mike passed away a few years ago. People often tell me how lucky he was to have a sister like me. I don’t think he was lucky at all. I think I was the lucky one. I was lucky to have a brother like Mike. I have no regrets about the childhood I lost. I’d do it all over again. I’d do it for the love of Mike.

    Jameson is a blessing. The love you share can never be equaled. And when people are cruel, and they will be cruel, remember it is of ignorance and be grateful that you have Jameson and Jameson has you. They are the ones to pity for they have no clue what true unconditional love feels like.

    1. Thank you so much for sharing that. I think your story is absolutely beautiful. Getting to know kids that have differences like Jameson and your brother Mike can teach us so much about the beauty of life and love. We have loved Jameson fiercely since he was born! What was there not to love? 😉

      one of the first thoughts I had when this started was how sad I felt for the people who made and shared this meme. Some of them were just doing it because others were, but the truly cruel ones I felt sad for – for how much love and support they must have missing in their life. I felt more sad for them than for Jameson because Jameson will always be surrounded by family that loves him more than the world!

  87. My son was born blind in one eye and 60 surgeries has resulted in that his eye looks abnormal. I remember him coming home from a 7th grade party sad. He said that kids calked him cyclops and they didn’t want to hang out with him. How do you prepare your kids for that kind of meanness? I have read books, talked to counselors, prayed and there is no ONE answer. I just keep reinforcing his good qualities. He is now a strapping 17 year old with lots of confidence, but I know there will always be that 12 year old boy feeling rejected for something he can’t control.

  88. I just want to say, as many others I’m sure already have, that you have a BEAUTIFUL son. I wish I could give him a hug, but my post will have to do. Please, do not let what other uneducated
    fools have to say ruin you or your beautiful boys life. They are the ones with problems. Your son is totally oblivious as to what is happening, and he is beautifully innocent. Words can tear down and words can heal, love overcomes a multitude of sin. Dwell on the positive, negative will always be there, but it seems to me you are a strong woman. Wish I could do something to help the situation. All our love from Ontario Canada.

  89. Dear parents of Jameson,
    Jameson is a great kid. Be there always for him and you will be blessed. What is more beautiful in life than having children you love and the love they give you? Nothing.
    Love from David, The Netherlands.

  90. Little did I know about Cranio; thank you for explaining and sharing your family’s story. And your son has a lovely smile!!!! I can imagine he is loved by many.

  91. I read about Jameson on The BBC. Thank you for sharing his story with us. He has a lovely smile. He made me smile too. Thank you Jameson.

  92. When I saw the picture of your son on today.com with the chocolate all over his face I laughed and thought what an adorable little boy! I knew I had to read more about him. I’m glad that today.com linked your blog to their article. Jameson you are truly an amazing young man! if you and your parents are ever in Colorado I would love to meet you!

  93. i just stumbled across your son’s story on facebook and how you had to fight for your sons right to have that horrible meme deleted, i am so sorry that you had to go through that and i’m appalled that people thought it was funny to take a picture of your beautiful son and turn it into something so cruel. It truly has brought me to tears. It makes me so happy to see that you are standing up against these people that have posted such a thing without the slightest thought that it could someday hurt someone very real. i Hope you and your son/family continue to thrive and move forward. Jameson is lucky to have suck a strong willed and loving mother such as yourself. god bless

  94. From Switzerland, I just read your story and wanted to tell you: you’re a marvellous family, all of you, I wish you all the best!

  95. Your strength, courage, and love for your beautiful son are both equally touching and impressive. Some people can be unspeakably cruel and heartless. I’ll never understand how anyone could find something such as that meme entertaining or humorous. Whoever did obviously has something very wrong with them mentally. I’m glad that I didn’t see it. Jameson is an adorable little boy, anyone with a heart can see his beautiful soul. He absolutely shines from within.

  96. Jameson is a cutie. The unfortunate thing about society is, if you don’t fit that mold then you are not perfect, so this tells me that these people have never been to church in there lives. I have 1 thing to say, God created him and he perfect just as God intended him to be

  97. My son who is now 6 was born with craniosynostosis . He has had two surgeries and is doing well. His head will probably never be ” normal ” and people stare at his bumps and ear to ear scar . Thanks for sharing your story and you guys and you your son will touch so many people and change many lives 🙂

  98. My cousin has these characteristics. When he was born the doctors told my family to just leave him at the hospital.

    He has had many surgeries. Once, he was at the hospital in Dallas. My uncle had to go back to work hundreds of miles away. My aunt never left the hospital for 6 weeks, sleeping in a straight backed chair.

    My aunt and uncle were the strongest off parents with little support, then. He learned to swim, ride a bicycle, drive a pony and cart.

    He had to be sent to Austin to the school for the blind when he was about middle school age, because the local school would not longer educate him.

    Still, he persevered, lived independently and worked at Goodwill his whole life.
    He loves card games, joking and is a super son, brother, uncle and great uncle.
    He just retired and still volunteers.

    He is a hero and so are his parents and sisters.
    Thank you for being your child’s heroine and bringing awareness to others.

    1. Hi Kathy,

      Your sweet cousin! I’d love to meet him, he sounds like an inspiring man! And a wonderful family there to love and support him <3

  99. Erin from Mo here I justed wanted to say what an infectious smile your son has I cant help but giggle everytime I look at his chocolate covered face it reminds me of how much my little girl loves her chocolate.

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