Monday, November 21, 2011

When It Is More Than Just Words...

It's Saturday night, and Hank and I are sitting next to each other on separate laptops. I'm writing and he is playing games. It's late...almost 11:00 pm. I know I should chase him off to bed...but the easy conversation we have while he waits for games to load...the sounds of him having fun...and just having him near me, are just too good to end.

Hank is 10 now...approaching that "tween" time of his life. But thankfully, he is a young 10. Still loves being with Mom and Dad. Happy to give us hugs and to just "be". Still enjoys family a bike ride to the park with the whole family, including our oldest "child",  Maverick the dog. I wish I could slow time down, so I can savor these moments. I know that these are our "good old days" and I want to enjoy every moment!

Hank is such a kind soul. He finds the good in everything and everyone. It is rare that he is sullen, or negative. I love picking the kids up from school and hearing about their days. It's noisy in the car as they all start talking at once, with little Lucy yelling to be heard above her older brothers. Hank almost always has positive things to say. Oh sure, he has his moments and if he doesn't like something, he'll tell me. "Mom, while standing in line for 4 square, the yard-duty teacher told us to be quiet!" I should say, he tells me the easy stuff. The stuff that really bothers him or he thinks will upset me...he holds in.

So in the quiet time in his room before bed a couple of weeks ago, Hank finally let it all out. In relaxed conversation he told me. "Mom, I'm being pushed around at school." My heart sank...I knew that there had been an incident in September...and that there were a few more in October...but didn't realize it was still going on. "Have you told a teacher?" I asked him. "No, I can't..." he said, "I'll get in trouble. This kid always turns it around on me, so I get in trouble!"  I hate this. Hank is smaller than a lot of the other boys in his class. Hank is 10...there are a lot of 11 year-olds in his grade. Hank seems like an easy target. Easy-going, doesn't tattle, non-confrontational, and really can't imagine someone being mean on purpose. But now, after so many weeks, he was at his breaking point.

"It happens almost every day, Mom," he told me, "It's always behind the backs of our friends and the teachers." "Is it on purpose?" I asked. "I used to think it was because he didn't want me to be friends with another kid, but now I just don't know." Do you ever tell him to stop? I asked. "I have and he tells me to 'Shut-up!'" As the smoke started to billow out my ears, and my eyes glazed over to red, I willed myself to remain calm. Seriously? Can't this kid of mine catch a break? I felt so bad for Hank. He likes this boy. We've had him to our house! He's not a bad kid...but was obviously making some bad choices.

I told Hank I would talk to his teacher and we would go from there. The next morning, I told Hank's teacher about it and asked her to keep an eye out. She said she would and I left feeling confident that Hank would have a good day.

I picked Hank up from school and the first words out of his mouth..."Mom! He pushed me again!" This time it had taken place at the lunch area. The boy had come up behind Hank and pushed him forward. Sneaky! This kid was being sneaky! Right there, with teachers present, but while they weren't looking his way. To say I was upset is an understatement...I picked up the phone the minute we got home and called the Vice-Principal, only to find she wasn't in. The secretary suggested I email her, but I wanted to talk to someone!

I told Jeff about it when he got home from work. His brow furrowed and his lips disappeared into a white line. The vein in his temple started to pulse and I knew that he was trying not to blow. He talked to Hank about standing up for himself and defending himself. Hank has had three years of karate. He knows WHAT to do...he just doesn't want to do it. (I don't blame him)

I stewed about things the rest of the evening. What do we do? Finally I posted the question on Facebook. With over 400 FB friends, I figured someone would have lived through this situation. The responses came swiftly. Some with knee-jerk advice and others with solid, plan-of-action advice. It stirred them up...and talking about it with them helped me work through the process, and gave me some good information.

In bed that night, I tossed and turned. What do we do? I certainly didn't want to make the other boy's life difficult, but Hank shouldn't have to go to school and worry if he is going to be shoved. And what if he gets pushed hard, trips and falls? We don't want him to injure his face. Or what if Hank takes it and takes it...and then finally blows? We don't need him getting in a fist fight. I finally closed my eyes and put it all in God's hands, fitfully sleeping until early morning.

When I got up, I knew what we would do. I wrote his teacher an email. I explained that it had happened again and we were very upset. I got her response before I left for school. She said she would take care of it, feeling frustrated that it was going on and wasn't being caught. She planned to talk to the boy in question and make him see how his actions affect others.

I got the kids to school and went off to chapel to listen to Lucy's class sing in honor of Veteran's Day. They were so darling, singing their hearts out to "Proud to be an American". It was a tear-jerker!  After she was done, I stayed and listened to the kids sing. There is something so special about hearing 5-7 year olds raise their voices to Christ in song. It has been known to bring tears to my eyes. As I sat there wondering how Hank was doing, my phone rang. It was the school! "Oh no," I thought, "something has happened to Hank!" I answered the phone and heard Hank's voice on the other end. My mouth went dry and I could feel the tears starting to well up in my eyes. "Mom?" he asked..I responded and waited to hear what terrible thing had happened. "Could you bring me my library book and my music? I forgot them." Phew! He was OK! He was just forgetful! I was already to his classroom by the time he finished telling me. I told him to turn around and he saw me. We hung up and I told him I would bring everything back for him.

He gave me a quick hug and headed back into the classroom. His teacher stepped out and we had a few more words about the situation. As she headed back inside, Hank came bursting out the door. He looked at me with tears in his eyes, "I want to go home, Mom." What? Why? "I need to go home, please take me with you," he said as the tears flowed. He was melting down...stressed beyond anything I had seen in a long time. He told me his head hurt, his stomach hurt and he "just couldn't take it." The bad thing when Hank cries...I cry. So there we were, out in the hallway and in tears. "He's not worth our tears," I told him, "You have to stay...because if you leave then he has won." "Don't worry, you don't have to do anything. Your teacher is going to take care of it." He nodded and hugged me. The kindergarten class who are the "reading buddies" with Hank's 5th grade class had arrived. "Your reading buddy needs you, you can't leave, Hank." "OK," he said and wiped his tears away.

Another hug and he went back into the classroom, leaving me there feeling wrung-out like an old dishcloth...emotionally drained and extremely worried about him.

I went about my day, with Hank in my thoughts. I brought him his library book and was so happy to run into his cousin Zachary at school. Zack is in 8th grade. He is big for his least 6 ft tall and the size of a football player. He is big...really big compared to a 5th grader. He already knew Hank was having trouble, so he went up and gave Hank a hug. He put his arm around Hank's shoulder and walked him down the hall. "Everything good Hank?" he asked, "Is anyone bothering you at school?" It was a beautiful sight! Now everyone knew that Hank has a big cousin.

I was back at the school at pick-up. I didn't get the chance to talk to Hank's teacher and waited on pins and needles to see how the day went. Hank burst out of the band room like he does every day, with a smile on his face and a loud, "Hi Mom!" I waited until we got to the car to ask how his day went. "Great!" Did your teacher talk to you. "Yes, she said I can come and talk to her any time!" he said with a grin. And did anyone push you today? "Nope! He apologized!" he happily offered. I felt relief wash over me.

Now there was just one thing left to by the principal's office and make her aware of the situation, so it can be documented. I wanted a written record of what had happened, in case there is another incident. We talked for quite some time and she told me she would take care of it.
I am grateful to Hank's teacher for taking it seriously and dealing with it swiftly. And I grateful to the teacher who saw the very first incident, not knowing if it was horseplay or something bad. She brought it to my attention, allowing me to ask Hank about it and finding out it was going on.

The boy in question came up to me the other day..."Hank and I have worked everything out!" he told me. "Thank you, I appreciate it," I replied, and gave him a smile. Hank told me he is happy. That he doesn't think it will happen anymore. And if it does, he said he will remind his friend that he apologized!  "That should take care of it, Mom!"

Sunday, November 6, 2011

Even Innocent Comments Can Hurt...

Are we halfway through the Fall already? Really? Summer is has started...Halloween is already over...Hank has turned 10... Hank is 10? Already? With three kids and a busy schedule, time seems to be flying by! 

Camping July 2011
Although Hank's surgeon, Dr. Siebert, told me he thought Hank could use another surgery, Jeff and I decided to postpone and let Hank have a normal summer at home, without any medical interventions. It was so nice! The kids took swimming lessons, where Hank moved on to the more advanced strokes and worked on diving. (Thank you Sophia!) Hank learned to ride a bike...something we never pushed...we didn't want him to fall on his FACE, after all! But he just took off with hardly any help and therefore received a new bike for his birthday. 
We took the kids camping for the first time and Hank loved it. Hiking, boating, jet skis, roasting marshmallows, eating outside...the kid adored it. And except for a few glitches...24 loud college students who partied until 3am right next to our campsite...and a dead car was great! (Let me tell 3 am, I am not all! Those college kids RAN to bed!)

Lazy days of summer with nothing to do, were just what Hank needed. Huge family reunion with so many family members we hadn't seen in a long time.. day trips with friends, baseball games and a trip down to see their Granny who treated the family to Legoland made it a summer to remember! It brought such joy to my heart to see Hank have fun and not have the worry of surgery hanging over him.

A few short years ago, Hank was diagnosed with Parry Romberg Syndrome...and time slowed to a agonizing desperate crawl as we tried to find treatment. The days melted together as went from doctor to doctor, and I spent every waking moment trawling the Internet for information. Hank looked puny...he was tired of all the doctors and we were keeping his condition a secret until we could figure things out. It was terrible...

Right before 1st trip to NYC: Hank 7, Charlie 4, Lucy 3.
Lucy and Charlie were little...just 3 and 4...and weren't getting the attention they deserved. The housework stopped, I don't remember cooking...Jeff had to shoulder it all. I remember coming out of the office one day and looking around the family was a mess. I looked at Jeff and apologized for letting everything fall apart. He looked at me and said, "Don't worry about this stuff...I've got it. You just keep doing what you are doing. Find help." And so I did.

Now here we are, three years later...Hank is a different kid. Outgoing, in the band, playing sports, doing great in school... the trauma of the last few years hasn't left us unscathed...We have suffered financially...lost our home, miscarriage, Jeff had to take on another job... but we are in a family...and as with everything else we've been through, we do it together.

1st day of  5th grade.
Hank isn't out of the any means. This is a progressive disease...and each case is different. But the progression on his face has stopped (as far as we can tell). July 2, 2009 was the day that our lives changed...the day Hank had his life-changing surgery. Now two years later he is good.

Hank is a constant worry to me. Not at the forefront of my mind, like it was in the beginning...but still right there, where I think about it pretty much every day. I don't just worry about his physical health...but his emotional well-being...he's been through so much! Hank doesn't talk about it very often...he reflects on things, but doesn't usually bring it up. Until a few days ago, that is...

I was with Hank in the bathroom, putting gel in his hair, to get the desired "spikes" in front. As Hank looked in the mirror, he asked, "Do I look weird in the mirror?" I froze. "What?" I asked. Again he said, "Do I look weird in the mirror?" My heart dropped to my feet. "Why do you ask?" I inquired. He stared at himself for a moment..."A boy at school told me that I look weird in the mirror." UGH! I hate this! The truth is, Hank DOES look different in the mirror. When you look at someone with PRS through a mirror, they look odd. Not symmetrical at all...even with having surgery. Everything is pronounced and the differences are obvious. (two dimensional world) I know it, Jeff knows it, our family members all know about it... but I was hoping we could go a few years before Hank noticed. OK, I was really hoping he would NEVER notice!

Homecoming game Oct. 2011
I had to say something but the words seemed stuck in my throat. Hank continued to scrutinize himself in the mirror. The seconds ticked by as I gathered my thoughts. Finally, I took a breath and said, "You don't look weird in the mirror, Hank. You look different...but not weird. What you see in the mirror is not how the rest of the world sees you. It's not what I see when I look at you straight on." I continued to explain how people with PRS never look quite right in the mirror and how doctors use mirrors to diagnose. Hank continued looking at himself in the mirror as he absorbed what I said. 

Slowly, he turned to face me. "Then I don't know what I really look like."  Double UGH! I could feel my heart breaking. "No, no..." I said, "You have pictures and videos. That is what you look like to me."  As we stood there together, I said, "You know, Dr. Siebert wants to fix things, so that you won't look so different." "OK," he said, "Wait a minute! How would he fix it? With SURGERY?" I nodded. "NOW?" he asked in a worried voice. "No, not now...maybe in the summer." I reassured him. " about in TWO summers?" he said with a slight grin. Gotta love this kid!
Halloween 2011

A friend remarked the other day," People will say 'Kids don't have filters' or 'kids will be kids, etc...' A child at school must control themselves physically: if they hit, push, etc...they'll be sent to the office and a note will be sent home. Why can't they be taught or disciplined when they hurt others with their tongue (words?) It truly can do more damage than any push or shove can."

I agree with this...Kids should be taught that if you don't have something positive, kind or encouraging to say, then don't say anything at all. Hank knows this boy didn't say what he said to be cruel. But the damage is done, just the same. Maybe the reason kids do this, is because their parents do it too. Do we, as adults (me included) do the same thing? Do we point out other's flaws and shortcomings? To their face...or behind their back? Either way, words can hurt, they can scar...and the receiver of these words sometimes carry them for the rest of their lives. We should encourage each other and lift each other up with our words, not tear each other down. 

I know Hank's road won't be easy...physically or emotionally. But his road would be a little less bumpy...if people would just let Hank.

Tuesday, June 28, 2011

In Honor of Christopher

Life is so fragile. Last Friday, Charlie's little friend, Christopher passed away. He was just 7 years old.
Loved baseball, the color red, reading, rules, hunting and camping. He wanted to be a firefighter, just like his dad. He was a great big brother and wonderful son. Christopher was at a pool party for his baseball team...and in a terrible instant, he drowned.

Our lives are forever and irrevocably changed. Nothing is as it was. Our hearts are broken. And our pain, as great as it is, is nothing compared to what his parents, grandparents, sister and extended family are going through. Their pain is immeasurable...unfathomable...the greatest loss there is...

I could write about Hank today...I have so much to catch up on...but all I can think about is Christopher and his family. So in honor of Christopher Walters, I am dedicating this blog to him.

Yesterday, I took the kids to Christopher's funeral. I had a lot of misgivings about it. The kids are so young and we haven't talked a lot about death. Well, that's not quite true. My Dad passed away when Hank was almost two. So we talk about Grandpa being in heaven. About how much I miss him and how he watches over us. But we haven't been faced with someone close to them dying, let alone a child. I can barely come to terms with could I expect them to?

Charlie insisted he go. Lucy, ever the champion of her brother, insisted she be at his side. But Hank...Hank who understands the finality of death, did not want to go. I struggled with what was the best thing to do. Would they be traumatized? Would they be scared? Would they understand? I knew that I would go, no matter what. I knew that Christopher's family needed all the support they could get and I needed to say goodbye. Earlier in the week, I spoke with Christopher's mother, Amy, on the phone. She asked if we would be there. How could I let her down?

The night before the funeral, I knew what we would do. I sat all three kids down and told them that we would be attending Christopher's funeral as a family...(without Jeff, as he had to go to work) Death is a part of living and as Catholics, comforting the sorrowful is one of the "spiritual works of mercy"... Not only that, but Charlie needed to go to support his friend, Christopher and say goodbye. Lucy and Hank needed to support their brother in his time of sorrow. And Hank in particular needed to take all the kindness and support that has been shown to him each time he undergoes surgery, and pay it forward. With big eyes, they nodded in agreement.

Christopher's favorite color was red. The family asked that every child wear the uniform in which they knew Christopher or wear the color red...some would wear baseball uniforms, some would be cub scouts...our kids would wear their school uniforms and in honor of Christopher, would wear their red polo shirts. Lucy wore a red dress and I wore the red shirt I purchased the night before.

The services were an hour and a half the beautiful foothills of Amador County. Another classmate of Christopher's and his family met us at 9:00 am and together we formed a caravan. It seemed like a long trip to me, as I anticipated the enormity of the day. I said a prayer for Christopher and his family. And another one for all the families on their way. Please Lord...get us through this day.

Christopher's dad is a firefighter and a military man, who served two tours in Afghanistan. I knew that they would have a lot of support from both communities, but I never imagined just how much. The parking lot had firetrucks, motorcycles, and highway patrol cars. As we walked up to the church, we were greeted with the sight of about 20 veterans holding American flags, it was an honor guard and it set the tone for this little boy's memorial.

The lobby held tables filled with Christopher's beloved toys and treasures. Star Wars toys, stuffed animals, baseball things and pictures he drew. Everything a 7 year old boy loves...seeing things sucked the breath right out of me and I could not contain my grief. I heard the heartfelt gasps of the other mothers standing with me and we hung on to each other in disbelief and sorrow

Inside, was a sea of red shirts. At the front of the church was an open casket where dear little Christopher was laid out for people to pay their last respects. Christopher's parents, Rob and Amy stood next to their son and greeted those who came up. The line to see them was long and Charlie insisted we go up. I was worried...this was an open casket. I hadn't anticipated this. But Charlie said he was OK and got in line. As we got up to the front, I tried to shield Charlie from the casket, but he pushed his way next to me and said, "Hi Christopher. I miss you." He then turned to Amy and hugged her, telling her, "I am so sorry about Christopher." As I hugged Amy, Charlie hugged Rob. I have only seen Rob at school a few times and although I don't know him like I know Amy, I hugged him and we held on tight through the tears. I have never experienced a father's sorrow like that.

We found some seats and the other parents, children, our school's principal, administrators and teachers sat all around us. It was a huge showing of support and love from Christopher's school...all in red...all in much grief. Christopher's funeral was amazing...beautiful and gut-wrenching. I have never shed so many tears and have never seen such an outpouring of grief. Over 600 mourners attended...there were hundreds of firefighters, military personnel, Highway patrol officers, medical people...etc, all wearing their dress uniforms. The seats were taken up by the 500 in attendance and the men and women in uniform lined the walls. Standing in support of their brother, Rob and his dear family. You could see that they shared in his anguish, as the tears flowed down the faces of these strong and brave men and women.

Halfway through the service, Hank and Charlie went out to the lobby to use the bathroom. "Dad is here," said Charlie upon his return. I was so surprised and grateful! Jeff was at work when we left. But he finished up his meetings and made the trip up. We happened to have an empty seat next to us so I told Charlie to go out and bring his Dad back. I looked up to see Jeff, wearing a red polo shirt that I had never seen before, walking across the church. I later found out he stopped at a Kmart and purchased the shirt on his way to the funeral.

Jeff sat down and Charlie nestled into his side, comforted by the presence of his a time when he really needed him. Charlie seemed to be doing OK....even when Christopher's parents got up to talk about their son. They laughed as they told stories and sobbed when the talked of their loss. I looked at Jeff who had tears in his eyes. I glanced at the Dad behind him who looked the same. These fathers, who were feeling Rob's grief as their own. Understanding with empathy, what Rob was feeling...and realizing that they could not fathom his loss.

As the services came to a close, they played a video of Christopher's life. Charlie crawled into my lap as he sobbed at the images of his friend. Looking at the places they went together on field trips, seeing Christopher in Halloween costumes and a video of him playing and singing in the bathtub with his little sister, the night before he died. So many memories and such tragedy at the realization that his friend was gone from this life. There was not a dry eye in that room. The sounds of laughter through tears at funny pictures, and the sharp intake of breath at heart wrenching photos. I could hear the sounds of my friends' sorrow as they sat behind me...Sobs and sniffles...this boy touched so many.

As we left the church, we were ushered by Christopher's casket, for a last goodbye and a hug for the family. All three of our kids sadly went up say farewell. I think this part hit Hank the hardest...seeing someone in a casket can be scary...and Hank is at the age where he over thinks a lot. But he was stoic and compassionate as he hugged Amy and Rob.

Outside, the preparations were made to transport Christopher to the cemetery. All of the uniformed men and women were lined up on either side of the stairs, leading up to the church. The honor guard was standing in a line with their flags, facing the church. The boy scouts in their uniforms were lined up next to them and a bright, shiny red fire truck acted as the hearse, to give Christopher one last ride. Above our heads, the medivac helicopter that transported Christopher to the hospital last week, kept vigil in the air.

As we stood in the hot sun, waiting for them to bring the casket out, I looked around at all the mourners. Red rimmed eyes, red shirts, people of all ages...I realized that Christopher had affected more people in his short 7 years than most people do in a lifetime. What an amazing little boy and we are so much better for knowing him.

The haunting notes of bagpipes snapped me back to reality as the bagpipers marched out of the church. Behind them came the pallbearers carrying a small red casket, draped with an American Flag. Christopher was being carried by his father, his grandfathers and three other uniformed men. The officers at the bottom of the stairs snapped their white-gloved hands into a salute and kept their hands at the brim of their caps as the casket was carried by. They lifted the casket up and into the back of the fire engine and secured it in place as the motorcycles got in position to lead the procession.

The kids and I got in the car to join the procession, as Jeff made his way back to his car, to return to work. Hundreds of cars got in line as we went the nine miles to the cemetery. All traffic was stopped as we traversed the winding roads. Each intersection was blocked by police, highway patrol, fire or ambulance. All with lights flashing and the officers and attendants standing at attention and saluting as we passed. The medical helicopter was joined by a military helicopter and together they led the way. My heart leaped into my throat each time we passed an intersection...this was the most beautiful and heart-rendering procession we had ever seen.

At the cemetery, we were handed red balloons. We stood in the shade of the huge oak trees as the rest of the mourners arrived. There was an awning set up with chairs for the family and the platform for the casket was set up, all waiting for Christopher's arrival. The uniformed men and women lined up, making an aisle for Christopher. The bagpipes led the way followed by the pallbearers and then the family...all in red. It reminded me of the police funerals you see on TV.

As we gathered for the service to start, we could hear the far off beating of a helicopter's rotors. The sound grew closer and louder... everyone looked up just as a large military helicopter roared into view over the tops of the trees. It was low and as it reached us, it soared upwards, right over where we were standing. One last tribute for Christopher...the boy who's dream was to ride in a Blackhawk helicopter, just like his Daddy. As the helicopter disappeared from view the minister asked us to join him in singing "Amazing Grace". Then he read some scripture and said a prayer. Afterwards, they asked us all to move into the open area and release the red balloons. Hundreds of red balloons took to the sky, making their way to the heavens for Christopher. Some balloons got caught up in giant oak tree...eventually breaking free and joining the rest.
They thanked everyone for coming and said we could make our way back to the church for the reception.

Charlie found his school pal, Colby and together they sat on a bench under the oak tree. Colby's mom and I talked and before we knew it, everyone had left...but the family. We stood away from give them some privacy. The kids played in the dirt around the oak tree...and Colby's mom, Hank and I sat on the bench, watching in silence as they opened the casket for one final goodbye. The love of these say's the greatest anguish I have ever witnessed. Their hearts are broken...they will never get over this...And yet they must go on for their little 4 year old daughter.

We stayed as they closed the casket and lowered it into the ground. We stayed while they brought in the concrete slab that covers the crypt. We stayed while they brought in the backhoe and all the dirt. We stayed while they shoveled the dirt on the crypt and filled up the hole. We stayed while they rolled the sod back into place. And we stayed while little Alexis in her red dress and red headband, stooped down and placed flowers on her big brother's grave. We couldn't say goodbye...we didn't want to...but finally we tore ourselves away...

The ride home was difficult. I felt exhausted and drained. But I knew that what I felt was nothing compared to Christopher's family. This was the start of their new reality...a reality that no one wanted nor deserved. I heard from quite a few people when I got home. Other parents who attended the services, wanting to talk about the experience we just shared. Others who couldn't make it, but joined us in prayer, knowing how difficult the day would be. And still others who didn't even know Christopher, but who's hearts ached with sympathy for his family and friends.

Today has been rainy and cold. The kids and I stayed home, huddled in our pajamas. Throughout the day, Lucy has mentioned Christopher and Charlie is worried about Amy and Rob. Hank has been quiet and thoughtful, spending much of his time alone. We are still mourning...and will be for a long, long time.

Christopher, thank you for allowing us to share in your life. You're an old soul, who had wisdom beyond his years. The love that you had for your mom and dad was so obvious as was the joy you brought to them and your sister. Our lives have been blessed to know you and our hearts are broken because you are gone. Heaven is so lucky to have you. We will miss you...always.

To find out how you can honor Christopher's memory or how you can help the Walters family, please visit

Sunday, February 6, 2011 Update!!

It's been such a long time since I have updated this blog! Where has the time gone? I have sat down many times and started to write, but seems like there is always an interruption, and my post goes unpublished.

The last 6 months have been a bit overwhelming with everything going on in our here I sit, early in the day on Superbowl Sunday...everyone still asleep and I have some quiet time to myself. Hank. Hank is doing really good! He is in 4th grade and loving it. He is so responsible and always wanting to help around the house. He got straight A's last semester and went on the Principal's List. Physically, he looks good. Of course, I can tell that he has had surgery and he isn't "perfect"...(well, he will always be perfect to me...)...He has complained recently of his ears ringing and "floaters" in front of his eyes (one time)...and I feel the flutter of panic..."Is this another symptom? Is he OK? What doctor do we go to for this?" But all in all, Hank's progress has been remarkable. We are so grateful to Dr. John Siebert for all he is done for Hank. He has changed his life! And all of ours too! I can actually say, that although I think about Hank's Parry Romberg every single is no longer the first thing I think about when I wake up.

I have every intention of sitting down and writing about our time in Connecticut, New York, the return home, the start of school and the changes we have endured over the last six months....but for today, I thought I would be fun to insert the article that Fox News published about Hank on July 30, 2010. Hank was interviewed while in New York is exciting and somewhat surreal to see our family in a news story! The entire article and slideshow are available for viewing on

Health Centers
Boy, 9, Fights Face-Wasting Disease
By Brian Donnelly
Published July 30, 2010
Terri Gibbs couldn't fathom what was happening to her son Hank as she held her hands on either side of his face one night in 2008. One side was full and the other was literally skin and bone.
Hank was asleep, but Terri's eyes had just been opened to the possibility that, what began in 2006 as a rash on the left side of his face, two years later was distorting his eye, cheek and other facial features – something none of their doctors or specialists caught.
“We’d go to church and I'd cry,” said the mother of three from Sacramento, Calif. “I'd look at him sideways and cry."

Terri knew what was different about Hank, but she didn’t know why until the next night when the latest dermatologist they had consulted finally got it right. The Gibbs family had their diagnosis, but it wasn’t any cause for celebration.
Hank, who was 7 at the time, was diagnosed with Parry Romberg’s Syndrome, a rare disease that causes the area from the hair line to the jaw on one side of the face – usually the left - to literally waste away due to severe atrophy. The cause is unknown and there is no cure, but it is believed to be an autoimmune disease.
"Parry Romberg Syndrome classically involves the atrophy, or the wasting away, of the fat of one side of the face… It can have profound effects on the overlying skin and skeletal growth… And all of the associated structures then are distorted," said Dr. John W. Siebert, professor of surgery at the University of Wisconsin and an attending surgeon at Lenox Hill Hospital in Manhattan, N.Y., who has performed three
operations on Hank to restore the left side of his face.

Parry Romberg is believed to affect people before the age of 20, but Siebert has had a patient as old as 69 who had no sign of the disease until their 50s. If allowed to progress, it can also affect the bone, which can then distort the features on the affected half of the face. Although it’s progressive, it doesn’t spread beyond the face.
Hank, who is now 9, has some involvement in the bones around his eye and upper jaw. But the effects are painfully visible on the overlying skin. Although it typically affects just one side of the face, “For that individual patient, it's obviously 100 percent involvement,” Siebert said.
Siebert told that, classically, surgeons wait until the patient’s tissue has completely wasted away and they have been stable for two years before they go to reconstruct. But Siebert favors early intervention because, he said, the earlier the onset of the disease, the greater the negative effects on skeletal growth become. If the disease is allowed to progress, the bone can become corkscrewed and very small compared to the unaffected side of the face, which continues to grow normally.
Although Hank didn’t know much more than what it had done to his face, neither Terri nor their forward thinking surgeon was willing to wait and see how it would progress, considering the disease’s usual destructive pattern.
“Hank wasn't severe. He was probably moderate,” said Siebert, who Terri heard of from a contact she made through the Parry Romberg Connection website, a support network that helps connect individuals and families affected by the highly underreported disease. “We intervened while we had active disease in hopes of arresting the progression.”
The Gibbs family flew out for the first surgery on July 2, 2009, which was done at the NYU Medical Center, where Siebert ran the microsurgery
program for many years before resigning. Siebert transferred fat from under Hank's shoulder to replenish his face, which had slowly been deteriorating for about two years.
Hank then had two revision surgeries, which take just one hour and is usually on an out-patient basis, compared to the six to eight hours that the first surgery takes. Siebert moved the fat around to match the other side of the face as best he could – but the result is never perfect. Siebert makes his patients promise they will have at least one revision to make their overall result better. Hank went in for his first revision in December 2009, and the latest on July 20.

"For the kids, I liken the whole thing to Build-A-Bear," Siebert said. “Their skin is deflated and what it needs is to have living stuffing to bring it back out to its normal shape and form.”
Siebert, who says he has seen more than 400 Parry Romberg patients and done hundreds of microsurgical free tissue transfers, takes that “living stuffing” - tissue - from another body part. Using a skin flap, he places it in the affected area and attaches the blood vessels.
“You hook it up to a little artery and vein in the face and then you sculpt what they're missing underneath the skin… And it's just like building a teddy bear.”
The use of living tissue dramatically improves the blood supply in that region and, after surgery, that side of the face is not only plumper than the unaffected side, it is firmer and ages better, Siebert said.

“So far, it's been one year and there has been no further atrophy,” said Terri, who was grateful to have found someone with the answers she had searched so long and hard for.
Although the first surgery was a success, Hank was still just 8 and didn’t really know why he needed to “change his face.”
“When Hank first had that first surgery, he looked at me and said, 'did you just not like my face before?' That crushed me,” she said. “Because I thought he got it. I thought he had realized what was going to happen. He didn't understand why we would change his face. And so that was a really hard thing for him; and it was hard for me.”
Once they left the hospital and went home, Terri showed Hank pictures of people with Parry Romberg who didn’t have surgery, and she said he never questioned it again.
One year, three surgeries and 18,000 miles later, Hank is out of the hospital and feeling good. Yet, he still doesn’t really understand why he needed a second revision surgery.
“The problem is I’m pickier than any patient. If it's not dead on, than I’ll usually subtly, not twist their arm, but tell them they could be improved,” said Siebert, adding that most patients have one revision.
Otherwise, Hank is happy to be with his mother Terri, his father Jeff and his two younger siblings, Charlie and Lucy as they make their way back to Sacramento. On their way, they have visited the Bronx Zoo, the Empire State Building and the family of another Parry Romber Patient who helped them make the decision to go with the tissue transfer surgery.
“If you ask Hank, he'll tell you, ‘I used to have Parry Romberg Syndrome.’ So he considers himself cured,” Terri said.
Before his last revision surgery, Hank gave a
presentation to his classmates about what Parry Romberg Syndrome is.
To prepare him for that, Terri interviewed him and asked, “Are you mad at God?”
Hank said, “No. Sometimes I wonder 'Why me? Why not some other kid?' But I wouldn’t want another kid to have this. I know God has a plan for all of us, and this is just his plan for me,'” Terri said.
Helping Hands for Hank to learn more about Hank's story and how you can help.

We are so grateful that Fox News took an interest in Hank's story and has helped raise awareness for Parry Romberg Syndrome! Here is a link to the slide show that accompanies the article.
In honor of Dr. Siebert who is from Wisconsin, we will root for the Green Bay Packers today...GO PACK!!