Monday, June 22, 2009

Answers? Changes? Anything?

One thought that many of us cranio parents keep having is "Why are we putting our child through this? Is it necessary? Is it really worth it?" The surgeries are necessary, and we have to put our children through them so that they can have a good quality of life. Without the procedures, the deformation of the skull harms the child, in some cases to a point of being life-threatening. Each person's skull contains so much of what makes them who they are and allows them to live: a brain, eyes, nose, ears, and mouth. If the bones are not forming properly then one or more of these may be compromised. So, obviously, the surgery is needed. Still, the mommies and daddies who have to make this decision are burdened with the knowledge that they are putting their child's life into a stranger's hands. If something happens, the parents will feel that they have failed the child in offering the protection and safety that is inherently promised upon conception. It is a struggle, one of which plagues me right now.
I know that Simon needs to have this second surgery. His soft spots are getting larger, and his forehead has tiny holes. His brain does not have enough room to grow at the front of his skull, and he needs to have the holes filled in before he is out in the world of sports and rough play. Still, I feel twangs of guilt at putting him through it. I try to squash those feelings by thinking about why else this needs to be done. Simon is not at the same level as his peers in his speech, and I wonder if he might have headaches at times. This kid does not complain when he is in pain, but perhaps some of his odd behaviors are linked? Or do we just have a unique kiddo on our hands? Will we see improvements after the surgery? Or will he be a child who ends up struggling in school? Chris and I are of high intelligence, and we do not expect that our child must live up to what we can do. Yet, will we know how to handle things if Simon ends up being at the other end of the spectrum? To us, he is bright and creative and amazing, but we are his parents. How is he really, and how will he be after July 15? Only time will give us the answers. I must have patience and remain open to all the possibilities. Most importantly, I just have to treasure each moment with my little boy and make sure that he has no doubts about how much I love him.

Sunday, June 21, 2009

Please, Sir, May I Have Another?


I am a huge roller coaster fan, mostly of the steel behemoths that newly grace theme parks nowadays. I do not care for most wooden coasters, with the exception of Lightning Racer at Hershey Park in Pennsylvania. The steel behemoths either thrill me or relax me, either way triggering endorphins and other chemicals that give a natural high. With that said, the cranio coaster has been more like an old wooden coaster that has fallen into disrepair. The lap bar does not lock into place, and the car rattles so much that teeth fall out. The brake system, when it works, causes whiplash. Occasionally, cars fly off the tracks or tracks just break apart underneath the strain. The riders make it through intact but in need of some therapy. Many folks who get to take this ride only have to go through once. Soon enough, the ride is a distant memory, and those families remove themselves from it as much as possible. For us, the ride is on for a second time. My son inherited the condition from me, and his has been a more difficult case. If you want to catch up on the background, check out our site at www.thescofieldfamily.com/craniosynostosis (You may have to copy and paste this link into your browser.) I will continue to update the log on that site, but I will use this blog to write regularly in the upcoming weeks. This site will be accessible from the hospital as well, allowing me to post up-to-the-minute updates, especially when Simon is under the knife.
We want to thank all of you who are following our story and keeping us in your thoughts and prayers. During this stage of our journey, we are doing our best to get through some other major events in our lives, hoping that our minds can stay occupied enough to not reflect on what our child is about to endure again. Last time, fear of the unknown threatened to cripple our daily lives; this time, fear of the known threatens to do the same.