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.


  1. I love your writing. You have a way to make us laugh all the while we hurt so for yours and Hank's pain. I think we can all learn a lesson by what you wrote. We need to stop and think before making that "funny, cute, clever" comment. Is this a comment that will lift another up? Would we like it said to us? I think words can hurt much worse than any push or shove. And the damage lasts much longer. I pray Hank will know his true worth as a precious child of God. And I pray kind people are found along his path in life. He is a beautiful boy.

  2. Hi Teri,
    I don't know if you remember me I use to work with Jeff many moons ago at C21, Anyways, I was just reading your words and I so saddened that you and your family have to endure this. I just wanted to share a little story with you as well, My oldest son was dianosed with a rare disorder when he was four months old, (we went through alot of sleepless nights and days on end...) at that young age it was more pain than anything else, he eventually he developed red spots all over the trunk and limbs of his body, (which cause a tremendous amount of pain) when I took him in to get his 2 month shots I was sitting in the lobby with him waiting for our names to be called, another family came in and of course wanted to see the new born, but when they saw how spotted he was their smiles quickly turn to fear (the only way I can explain the look) I felt like bursting into tears! I wanted to say YOU JERKS HE'S A BABY AND HAS NO CONTROL OF THIS. But instead I sat there thinking about the days of when he's in school and some kids points out his spots. I cried inside silently... Well those days did come and boy did I learn alot of how to react from a my child. The kids started calling him dalmation doggy boy or because his name was Clifford they called him Clifford the big red dog. (his spots were big and very red) I of course wanted to beat up kids. (but didn't)To my surprise his response was... "My spots are because I have a blood disorder, but don't worry for me I'm ok, and my little sister is pretty and that's ok too." Right then and there I knew I had to learn not defend him but to educated him. He swelled my heart! I was so proud of him! Anyways, the reason I share this is because he is now a 20 year old grown man who never let his appearence (or words)slow him down. The spots eventually faded and he has alot of drawings of Clifford the big red dog that kids through out the years have drawn for him, and for his Sr. year in high school for Halloween he wore a Big red Dog outfit to school! He embrased who he was so everyone just followed suit. I did have two more children after Clifford and I quickly had to learn to make them specail too! So they wouldn't feel left out. A little something my husband and I did (and still do) is have what we called dates with our baby's. My husband and I took each child out one on one and let them choose how they wanted to spend the afternoon with each of us seperately. That seems to have been a highiight in their lives, rather than Clifford focusing on his pain and spots and Avoree and Bryce forcusing on ME focusing on Clifford and his doctors. Of course there is a lot that happened in between but that's the jist of it. Hank, Lucy, and Charlie will have strength enough for you and Jeff to get through this. My prayers are with you and your family, The situations are different but, I just wanted to show you a little positive can go a long way.
    A mother NOW trying to survive teenagers,
    Alyson Dunlap

  3. I agree that children can and should be taught to be kind in both word and deed. I don't think you are asking too much at all.