Badge of Honor

I realized recently that Ethan is wearing his badge of honor. God is using Ethan's syndrome for good things and I am so happy. The Social Worker at Evergreen Hospital who worked with us while Ethan was in the NICU has called me a couple of times now to ask if I would come in and talk to families who aer going through similar experiences, i.e. feeding tubes and craniofacial differences. I have been more than happy to do this and have me tsome great families. I think it might be therapy for me to talk to these parents too. I love tlaking about Ethan and the Craniofacial people at Children's Hospital, which i've been able to talk about both visits. On this latest visit, I showed the parents pictures of Ethan before and after his macrostomia repair and it seemed to really help ease some concern for these parents who's child will be undergoing some repair as Ethan has undergone. I really think being able to see an actual child (and not jsut one in a pamphlet) who has had surgery and seeing how well their scar looks helps so much. There was another time when we were waiting to see the craniofacial doctor at Children's where we were waiting in teh waiting area and Ethan took a liking to this little baby girl who had a cleft lip. I was at first a little uncomfortable with him staring at her because you never know how parents feel about these things, but the mother noticed Ethan and sat ehr daugheter on her lap so Ethan could see her better. Eventually I noticed that both this little girl's mother and father were looking with a lot of interest at the side of Ethan's face. They started asking questions about Ethan's condition and his repair. I told them that Ethan's repair had been done by the craniofacial clinic and they did a wonderful job. Then these parents started smiling and talking about how good Ethan looked. I felt like for them just seeing Ethan took that scared look off their faces and put a smile in its place. That was very cool!

I kow that there are so many problems that children have that need treatment adn I don't mean to be offensive or diminish the severity of other childhood conditions, but....children with craniofacial differences wear their condition on their face for all to see. Yes, most of these children are not in a critical state like children with other conditions, but you can't see some of these conditions on the outside. Craniofacial children dcan't hide their condition. I think i've seen children with some very serious looking conditions-missing features and features not in the right spots. Visiting the craniofacial clinic so often over the last 18 months has made me very aware of staring at people. I didn't like it when people stared at Ethan and Ethan isn't even very bad at all. It has also made me so thankful that Ethan's condition isn't worse than it is because Craniofacial Microsomia could be so disfiguring.

-Dina