Physically, Hank is feeling good. He finally weighs over 50 lbs, and has grown a couple of inches. His face looks good and the people that know him are amazed! But, he does look different than he did last year...his face is fuller and looks "overstuffed" due to more tissue being on the left side. (will be used in the next surgery) So Hank has had to endure the stares and questions that his classmates pelt him with
As his mom, my heart breaks for Hank. First day of school, a boy asks Hank, "Why is your face so puffed-up on one side?" Hank took it in stride and explained that he has Parry Romberg Syndrome and had to have surgery. He even showed the boy the scar on his back...to which the boy replied, "Holy Cow! That is COOL!" And then called the other boys in the bathroom over to see it. Hank was happy when he got home from school. "Mom, I have never had that much attention at school!" he said with a grin. But as the days went by, more and more boys stopped him in the bathroom to ask about his face. Some were kind and some were rude. And the fifth grade boys were just intimidating.
And so with our blessing, Hank's teacher went and spoke with the other teachers, filling them in on Hank's condition, surgery and the way the other children were treating him. I wasn't sure which day it would happen, and anxiously waited to hear how it went. Each teacher then talked to their classes...I SO wish I could have been there...not knowing what the teachers would say and if they would be able to answer the kids' questions.
I walked out to the parking lot, with Lucy in my arms, and spotted another mother who I know, talking with a group of moms. "Hi," I said as I walked up, "Did your daughter mention if the teacher talked to her class about Hank?" I inquired. "Nooo...she didn't, but we know Hank, so she probably wouldn't think anything of it" she responded.
Friends and relatives came by to pick up their food. I saw classmates from long ago, their parents, old friends who I hadn't seen in a long time and we made new friends too! It was an incredible day! The fact that it was our wedding anniversary made it all the more special. Wasn't the way we had planned to spend the day, when we started thinking about what to do on our anniversary...but we couldn't have had a better day...with our children by our side, surrounded by the people we love, many of whom came to our wedding, and in the town we got married in.
Megan came to the BBQ the next day, ready to work! She could have just stopped by but she wanted to be a part of it...wanted to help! How incredible is that? I introduced Hank to Megan and told him that, "This is Megan. She has Parry Romberg's too." Hank's eyes grew wide and bright as he looked at her. "You do?" he asked. "Where?" he said as he studied her face. Megan showed him where her face is affected. She told him she had surgery some years back. "Do you still have Parry Romberg's?" he asked. Megan told him she did. I could see that her answer confused Hank. We have told Hank that his surgery was to get rid of Parry Romberg's. And now here was Megan saying she had surgery, but still had PRS. "Oh, Megan had a different surgeon," I told him. "She didn't go to Dr. Siebert." "Ohhhh," he said, and I could see that it made sense to him, since Hank's doctor is the only surgeon in the world who does the micro-vascular surgery that Hank had.