How has craniosynostosis affected our lives? By Linda and Steve Bradshaw "Parents of Eremy Bradshaw"

When we were first asked to write a paragraph on how Craniosynostosis has affected our life, our first thought was, “We just get one paragraph?”

What began as a diagnosis became a journey; filled with its own unique ups and downs. As a parent, when you first hear that your baby has a serious medical diagnosis, your initial feelings are that of shock and denial. Then you kick into planning and action mode, researching the condition, understanding the procedures, and choosing doctors.

But as with most things, there is a positive outcome as well. Through Jeremy’s dealings with Cranio we have learned to take one day at a time, or some days, one minute at a time. Many everyday issues just become less of a concern in the grand scheme of things. He is the best teacher of resiliency that we know. Instead of being afraid of doctors or feeling anger about having been through the surgeries, he sees it as a positive thing. Since Jeremy was six years old and very uncomfortable at the time of his second surgery, he truly sees the procedure as a good thing. He once said that he wished all kids could have that surgery, since it had made him feel so much better. We formed some amazing friendships by becoming involved in the Craniosynostosis and Plagiocephaly Support forum (www.cappkids.org).

Being able to help and support other families in the same situation aids in the healing process and allows us to move forward. Because Jeremy had multiple surgeries and a period of time where he experienced an elevated level of intracranial pressure, we do see repercussions on a regular basis in terms of emotional and short-term memory issues. As time goes by, although it’s not something we ever forget (just try to get a decent haircut with an ear-to-ear scar), it does just become a moment in time. We are amazed at the healing process, though surely the emotional toll is sometimes harder than the physical toll. Watching our son grow and mature; succeed in school; and participate in various athletics and activities, after undergoing three major surgeries in six years, is the best blessing we could ask for.

What have amazed us most are his resiliency and his entire outlook in life. As you can see from the photo, Joe’s surgery was a huge success and today, at age 9, he continues to excel in school and sports—even football! But most importantly, he still smiles all the time.