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What’s Wrong With Your Son?

August 24, 2016

“What’s wrong with your son?”

In my eyes, nothing. In my eyes, he couldn’t be more perfect. He is handsome. His eyes light up the room. His laugh is contagious. His sweet little voice melts me. His chubby feet are exactly like his father’s. He has his sister’s lips. He looks like me. He has beautiful, long eyelashes. He has the cutest, chubbiest legs I’ve ever seen. His daddy, his two sisters, and I are absolutely, 100% in love with every perfect part of him, inside and out.

But if you asked a medical professional, they would tell you that my son was born with a birth defect called Sagittal Craniosynostosis.

What is craniosynostosis? Craniosynostosis is a birth defect in which one or more of the joints between the bones of an infant’s skull close too early. This defect happens before the infant’s brain fully forms, and causes an abnormally shaped skull. With craniosynostosis, the brain is unable to grow in its natural shape, and in some cases, is associated with an underlying brain abnormality. Craniosynostosis requires surgery. My son had surgery at 3 months old, with a three day hospital stay. The absolute worst three days of my life. And now, he is doing helmet therapy (he was to wear his helmet 23 hours a day for a minimum of three months).

When we brought our son’s head shape to our doctor’s attention at his two month well check (you can read all about that here), I will never EVER forget what the doctor said. After taking a look at his head, she said, “Unfortunately, this is not normal. He will need surgery.” I have felt a thousand emotions through this whole process. I’ve felt at fault, I’ve felt sad and angry, I’ve felt guilty and depressed. My son isn’t normal? His head isn’t normal? This tiny, precious soul will have to undergo a surgery performed by a brain surgeon and plastic surgeon? What did he do to deserve this?

But the truth of the matter is, he did nothing. And he doesn’t deserve what he’s had to go through. No one does; kids that are diagnosed with cancer, kids that are sexually abused, kids that are abandoned by their parents, kids that are born with deformities or mental disorders. No child (or human for that matter) asks for the hard stuff. But everyone goes through it. Everyone has something that is “different”. Because everyone IS different. Different is normal. Everyone is normal. And my son is normal.

I will always fight for my son to feel loved. I will always fight for him to feel safe. And I will always fight for him to feel normal.

let's redefine normal. my son has sagittal craniosynostosis. he is normal.

Normal Tee from Mama Said Tee’s – A portion of the proceeds go to PACER’s National Bullying Prevention Center!

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what's wrong with your son? cranio baby

Comments

comments

  • Reply
    Stephanie
    August 25, 2016 at 1:46 pm

    I always hated this question. Or the people who would point and stare (especially after the post-surgery swelling). Or the parents who would assume I did something to hurt him because he had such a prominent scar. Well said, Momma <3

  • Reply
    Tiffany Ching Bean
    March 16, 2017 at 3:55 pm

    I love this so much! Your son is so cute with his little football decals!

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