Saturday, February 27, 2010

From Lowest of Lows to Highest of Highs

The other morning over breakfast, Hank mentioned that he has looked the same since he was a baby. I guess he had been looking at some old photos Jeff had found of Hank when he was 15 months old. So I pulled out the photos and said, “Yes, you still look the same.” “Well,” Hank replied, “I looked the same until I got Parry Romberg’s.” OOF…wind knocked out of me on that one. I asked him if he thought he looked different. “Yeah, my face is kind of numb on this side, and I look different.” He replied in a slightly melancholy tone. I had run across a school photo taken of Hank last spring and had stuck it up on the refrigerator. It was just a proof…guess I didn’t order any…I pulled it down and showed it to Hank. “This is how you looked last year,” I told him, “See how thin your face is on this side and how your ear is sticking out?” He nodded. “In this picture, you don’t look like yourself, but now your cheek is full and your ear is back to normal, now you look like you always did.” He scrutinized the photo, felt his cheek, held his ears, “I think I look different,“ he finally said.

“Is it because of what you see in the mirror?” I asked. “Because a mirror is flat and your reflection is never true. What you see in the mirror is not how we see you. Look at pictures of yourself…that is what you look like to us.” Heartache…that’s the only way to describe how I, as Hank’s mom, feels. He’s right. He looks different in the mirror. He looks weird in the mirror. And that is the ONLY thing he has to look at. Imagine being him and every time you look in the mirror you see an asymmetrical reflection…which exaggerates everything. He must think he looks so bad. And yet he doesn’t in real life…with the human eye. However, Jeff and I are concerned and will take photos of him in the mirror to send to Dr. Siebert. Reality has set in today…that we might as well plan on the fact that he WILL need some sort of revision surgery this summer. We were hoping to spare Hank that….a normal summer…or a normal trip. But I don’t think that is in the cards.

I still, I KNOW... that we have done the best for Hank and that stopping the progression of the disease is the goal. But we can’t help but mourn for what once was…and we have to accept that this will probably be a life-long battle. And so my heart aches for Hank. He is so strong and stoic…and seems to have self-confidence. He is taking drama at school and will be part of a show…so obviously getting up in front of people is not a problem. And he was an alternate for the spelling bee last week…clearly he has confidence in his abilities. And he continues to take karate…so we know he can stand up for himself.

All of this comes on the heels of an emotional occurrence at school last week. As I arrived at school to pick Hank up, another mother, (who’s child has bullied Hank in the past) stopped to tell me that her son told her there was writing on the bathroom walls, and it is signed by Hank Gibbs. “What?” I exclaimed, “Hank would never do that!” “Oh, my son said the writing wasn’t Hank’s.” OK…well the school hadn’t called me, so it must not be that big a deal, I thought….I thanked her for letting me know and continued on.
Long story short…the writing was ABOUT Hank, not BY Hank…not sure which is worse. Glad I know my child…and know he wouldn’t do such a thing….but upset that Hank is the person being written about. Who would have it out for Hank? The kid truly loves everyone. He never comes home complaining about classmates…but rather sees the good in them. The teacher was so apologetic and upset as well. She didn’t know anything about it and when Hank and his friend ran to the bathroom so they could tell us exactly what was written, they found it locked and already being cleaned up.

I don’t know if I will ever know all the details, but I want to know WHO wrote it. It is a form of bullying and they shouldn’t get away with it.

As if Hank hasn’t been through enough….now he is being picked on from an unknown assailant who doesn’t have the guts to do it to his face. Jeff talked with Hank about it before school, giving him pointers on how to protect himself. He takes karate for a reason! And I told the administration that after giving someone ample warning by asking them to leave him alone…he has our permission to physically stop the bullying. We’ll take our lumps…but our kid WILL stand up for himself! Jesus said to “turn the other cheek.” But we only have two cheeks and sometimes meekness is mistaken for weakness (I stole that line from a guy at karate)…Someone is in for huge surprise at some point…when Hank decides enough is enough!

Even I have found myself "bullied" recently. A woman, who also suffers with Parry Romberg Syndrome, wrote me and criticized me for having a website that talks about Hank. She said that I should "Think twice before posting my son's PRS-damaged face for all the world to see" and that her "parents would never have been so cruel". OUCH! That really hurt and caused me to second-guess everything I have done thus far. She mentioned that people with PRS hate having their photo taken and "how could you have missed that?" But surely she couldn't be talking about MY child? My child who jumps in front of the camera every chance he child who "photo-bombs" every picture I, she could not be talking about Hank. The kid loves the camera and quite frankly...the camera loves him!

Even though I didn't agree with what she said, I wondered if I was doing more harm than good? I asked Hank how he felt about the blog and the web site. And about getting his picture taken. He looked at me like I had completely lost my mind. "Fine," he said. "It's great!" I told him it's OK to tell me if he ever changes his mind. "OK mom," he said, "But I won't." That's my kid! Hank truly loves knowing that he is making a difference. That by sharing his story he is helping others. I think about Hank's illness all the time. And I wonder why Hank has it. But more times than not, I can't help but think that this isn't all about Hank. That maybe it's about someone we don't even know. But by having this illness and sharing the experience, he is helping someone else. I know it has changed me. It has changed and made better people out of a lot of us. This kid, through his courage and fearlessness....has made a lasting impression on so many.

And so once again, I must follow Hank's lead...and forget about what this woman has said to me. She is wrong. Her experiences are not our experiences. And I am truly sorry for all that she has suffered in her life. But times are different...different treatments, different ideas...and Hank has the support of not only his family and friends, but people all over. I don't consider Hank's face "PRS damaged" fact I resent that...Hank is beautiful...inside and out. And I love taking his picture...and will consider to do so as long as he lets me!

We've experienced quite a few "lows"...and then soared to the highest of highs...

First came Hank announcing that he was trying out for a high school play. They were casting a 3rd - 6th grade boy for the part of the little brother. He went through the first audition and was called back for a second audition. I am amazed...I don't think that is something I would do at age eight. I don't know if he will get the part...and really I don't care either way. Just going through the experience because he wanted to...that's enough for me!

But the REAL exciting thing came the next day. Hank was named Student of the Month for his class. Jeff and the kids and I were on hand to witness Hank taking the stage as his name was called during Chapel. The cheering and clapping was so loud! Hank's teacher, Jerri Wood, said she had been eyeing Hank for Student of the Month for awhile but wanted to wait until February since that is the month to celebrate love. Little did she know that February would have some challenges....she went on to say that Hank displayed love and was one of the friendliest kids in her class. She mentioned that Hank had faced some unkind things recently and had reacted like a much older kid. Jerri talked about Hank's recent surgery and how they all prayed for him at that time. And most importantly to me...she acknowledged that Hank has been through a lot!

Hank was grinning from ear-to-ear. And when he left the stage he RAN down and scooped Lucy and Charlie into his arms as they held on tight and hugged each other. From a mother's tears of distress to tears of joy. My emotions have been on a roller coaster! It was a proud moment for all of us. WE know Hank is amazing! It means so much when someone else notices too!

And to top off the end of February...the karate studio that Jeff and the kids attend, held a fundraiser the other night for Hank. It was called "Moore's Kick-a-Thon 2010". The kids had one minute to kick as many times as they could. Each kid had a partner that held the punching bag and each time their foot connected with the bag, it was counted as a kick. They went out and got sponsors and sold dinner tickets too. It was a tremendous amount of work! The event was a huge success! Over 100 people came out to take part or cheer the kids on! The kids had fun, won prizes for the most kicks and the most money raised. It was amazing! To see so many people come out for Hank! We are so honored and blessed to be a part of such a wonderful community of people. The Vargas family, that runs Moore's Karate are incredible! They have been a part of Hank's journey from the beginning and have taken him under their wings. I know Hank feels loved and at a time when he really needed it....we couldn't ask for more!

I know we will face more challenges and have highs and lows...everyone does. Hank commented a couple of days ago that, "I wish I were just a normal kid." That hurts. But I assured him that not only is he "normal"....he is so much more!