There’s something interesting that happens to the way people respond to situations after we go through stuff. You know, the kind of stuff that no one asks for, but that of which everyone has some version. Stuff that shapes who we are and how we relate to the world around us. If I am talking about all the craziness our family has gone through with Zoey, September is that month for me in a nutshell. I’ve struggled with what to call it because different groups have different names for it, but here’s what I’ve realized this year about my personal relationship with cranio. For our family, and perhaps for other cranio families out there too, September signifies Cranio Awareness Month. It is a month where we hold our purple ribbons high with hundreds of fans behind us in educating the masses about the often hidden world of craniosynostosis. It is an important role, and we take it seriously. (I mean, have you seen our blog?) Additionally, September also signifies Cranio Acceptance Month, which is a harder pill for me to swallow. Should children with cranio be accepted for who they are? Absolutely! Have I accepted the change cranio means for my own family? In all honesty, that depends on the day for me. It is easy to become bitter when I am faced with real-life obstacles every day that many around me don’t have to worry about. It is easy to get angry when I allow myself to think back to the scariest of moments, during those procedures where my child was held unconscious so that her skull could be carefully removed and rearranged like a jigsaw puzzle. And it is easy to get depressed when I remember that, for all that has happened, the scary chapters in the story aren’t over yet. For Zoey we haven’t reached the “other side” of her procedures, because there is always at least one more in the distance. The general window of time we were given for her next cranio surgery is while she is 5 to 6 years old. Zoey was 5 last April…
What happens when September rolls around and you don’t want to go back? When remembering isn’t just remembering, because it is also planning ahead?
Friends, we are half-way through September, and it is Craniosynostosis Awareness Month. Our family is now mid-way through a brand new series of Cranio Vlogs, each of which answers a common question people have about Cranio. There’s a lot of good information in there, please check them out!
In case anyone is wondering why have I not posted about this until now, it is because September is also Craniosynostosis Acceptance Month. I blame not having time to write. But when evening comes, the kids go to sleep, and my laptop comes out, I am constantly faced with the inevitable truth that it’s not over yet. I don’t get to talk freely about cranio as something that happened back when Zoey was a baby. I understand the process in my head, but I am wrestling with it in my heart. It may not be this way for others, but for me it is much easier to accept the unknown and brand new. I love the adventure of new places and new experiences. Even when new things are hard, I still love the challenge. My cranio baby is 5 years old. She is an amazing kid, but cranio as a diagnosis not new anymore for me. It’s more terrifying than exciting, and I know every detail of what is coming. Sometimes knowing what’s happening is 100 times worse. I want it to be over, yet here we are facing it all over again. September is Craniofacial Acceptance Month. My daughter has craniosynostosis. Every day she gives me reason to live big, love bigger, and be kind always.