Throughout life, we all struggle with identity. For some, this struggle makes the epochs of their lives; for others, it is something realized in passing. On April 10th 2012 I took on an identity that I never knew could exist… Cranio Dad. To some, this may sound like some crazy superhero (or villain) that has never gained enough popularity to grace the colorful pages of a comic book. But I feel that the truth may be more incredible than fiction.
My daughter has bicoronal craniosynostosis, as well as a few other genetic anomalies. My beloved bride and I have helped our darling daughter through multiple surgeries, and there are many more to come. Though I could allow myself to become downcast and beaten by all that my sweet little girl has going on, I have decided to embrace it. I, proudly, am a Cranio Dad.
Though we were strongly recommended not to do any research while we were in the NICU after our daughter’s birth, we did. Even with my background in medicine and my beloved’s background in Biology, there were endless new terms that took us awhile to process. One of the benefits to doing the research that we did is that it allowed us to ask more poignant questions. It also connected us with a large “underground” network of support groups. These groups have been amazing allies as we have taken this journey, but there seemed to be something missing.
Over time, as our knowledge grew, we came to settle in to the reality of how craniosynostosis was affecting our family. There were some ways that the effect was different from other cranio families. One thing that we found was how amazingly strong our little girl is, and that is something that we shared with many other families. We continued to foster our connections with other groups, seeking and then giving advice. We have been fortunate to connect with another family who has a daughter (a month younger than ours) that is on a very similar journey. This reality in which we found ourselves was manageable, but I always felt that there was something missing.
Everywhere we turned there were groups for the Cranio Kids, and the Cranio Moms, but try as we might; we could not find anything designed for the Dads. It is not surprising to find out that when it comes to special needs children, this seems to be the norm. For many families, having a child with Craniosynostosis leads to a single income household, usually with a stay at home mom. This is mostly due to the understanding that the children need more attention and care. In hindsight, this simple reality explained why there was such a focus on the Cranio Kids and Cranio Moms.
After realizing that there is little support for the fathers of children with craniosynostosis, I decided that I could use my new identity as a Cranio Dad to change that.
My beloved bride and I have now added to our family a sweet son. He is a very calming force in our little world, and is loved dearly by his big sister. My beloved and I know that this is not the end of our family’s growth, but we know not when the next will come.
All in all, as many others out there, I have a ton going on. I am realizing that when it comes to most of it; husband, father, cranio dad, brother, son, employee, blogger… that through it all I would not change any of it.
I AM A CRANIO DAD, I am scared out of my mind, and this is just a little bit of who I am.