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.
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.
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.
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.
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 lissables@gmail.com to ask questions, vent, cry, or just talk.