Craniosynostosis. You Will Get Through This.

Perhaps you have stumbled upon my blog after hours of research and crying. And you have found that somewhere out there, someone know’s what you are feeling right now.

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I have recently gotten a string of emails from other cranio families finding lissables and Sawyer’s story. I know how scary it is. By documenting it, I have made new connections to lots of other families. It’s one of the most rewarding things Ive ever experienced in life. Each and every email brings me to tears. And I am honored every time I receive one.

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I encourage you, if you have just found us, to reach out. Not only am I hoping to ease other cranio families minds, but I want to continue to be a source of help through each journey. If you have just found Sawyer’s story, please go back and read each post. I started documenting and blogging after he was diagnosed at 4 months. It was a therapeutic way for me to express my emotions. Most of my friends and family were in another country. I felt alone through much of it. I never imagined that those same post’s would bring other people peace. Now I strive to ease the pain as much as I can.

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It’s been 9 months since Sawyer’s surgery. Most day’s I don’t think twice about it. It’s just a piece of his life to be remembered. But then I will receive an email. And emotion’s and thoughts come flooding back. This week has been especially emotional, with the loss of a friends little girl. Born the same week as Sawyer. We bonded over our children being the same age and dealing with medical conflicts so early in life. She had cutis aplasia, and they went through surgeries around the same time. As a mom I was so relived someone understood what I was going through. The mess of anger, frustration, guilt and heartbreak. But nothing I went through would ever come close to what she is feeling today. And even though Cranio is immensely terrifying in so many ways, it rarely ends tragically.

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 It was actually one year ago this week, that those words leaving the doctor’s mouth, first shocked my world. But you would never know if you saw that little red head. He was walking, {early} at 2 months post-op. His hair grew back fully after 3 months. And we are now 9 months post-op. And he is a healthy happy little boy. A blessing I don’t take for granted. It will never leave your mind completely, but you will get through it. And I am here to help you.

Please email me directly at to ask questions, vent, cry, or just talk.

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5 thoughts on “Craniosynostosis. You Will Get Through This.”

  1. I stumbled across your website/blog…your Sawyer looks just like my son, Blake. We went through a total cranial vault in 1997 (yes, 1997!). It was super scary back then because we didn’t have all the communication avenues that are available today. I had to ask for phone numbers of a couple of families who had recently gone through it, and the doctor said “well, that’s a great idea – sure, I’ll come up with 2 numbers for you!” Sawyer’s pics look like the procedure hasn’t changed much at all, but I’m sure the techniques have improved. One thing that instantly impressed me was the squiggly scar – genius! Blake’s scar is straight, just like a headband, and his hair doesn’t always cover it very well. I think the squiggle will fix that problem. Blake is a healthy, happy, smart 16 year-old – and he’s quite popular with the girls! lol So parents: hang in there, it’s worth it!!!! Best wishes to all! ~ Stacey

    1. Stacey, such a wonderful comment to receive. Its amazing how long they have been doing this surgery. But so scary to think about not having the same access to information. I feel like the openness between myself and other cranio mom’s made all the difference! I think it’s so cool you commented on this, having experienced it so many years prior. The zig zag is a cool new “feature” of the surgery. I can’t see his scar line at all because of it. But I think he will also have a cool story for the ladies in the far off future. Though I just cant picture him with the ladies at 16 just yet! haha.

      I’m always looking to share more cranio stories. If you feel so inclined, email me at you’s would be so unique because you have so many extra years of post surgery to talk about.

      Thanks so much Stacey, I always appreciate comments, and have a special place in my heart for cranio comments!


  2. Hi! I found your blog by searching for “craniosynostosis” on Pinterest 🙂 I was searching that term because my daughter, who is not quite 4 months old, was recently diagnosed with sagittal craniosynostosis. It’s been 1.5 weeks since we officially received the diagnosis, but I’ve been suspicious of this problem since she was about 4 weeks old. I’ve had my head patted and been sent on my way by multiple pediatricians before finally getting one to take my concern seriously, and sure enough, that’s what she has. Anyway, surgery is a month away for my little one, and of course I’m very very anxious about her having such a major procedure. Reading your blog get like someone holding my hand. Thank you so much for telling your story.

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