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 time...like 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 age...at 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 do...run 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!"

Even Innocent Comments Can Hurt...

Are we halfway through the Fall already? Really? Summer is gone...school 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 battery...it was great! (Let me tell you...at 3 am, I am not nice...at 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 crawl...an 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 room...it 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 recovery...as 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 woods...by 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. "Ohhhh...how 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...be Hank.