Wednesday, September 30, 2009

Navigating Third Grade

Hank is good. He is really good! Little by little I see things that make me think the surgery was a success. Hank used to cringe and complain that his scalp hurt every time we combed his hair. But a couple of weeks ago, I watched as Jeff combed Hank's hair and Hank sat there quietly not even noticing. It took a minute for it to register in my brain. "Hank's head doesn't hurt! He's not sensitive like before!

Or at school, when I witnessed a friend being very unkind to Hank...I saw Hank dash away to the other end of the playground with his hand up towards his eyes. I figured he was crying and rushed to his side. But he wasn't crying...he was close...but he was hanging on with all his might to keep the tears at bay. He has never been able to have such control when his feelings have been hurt.

And three weeks ago, when his dad was getting ready to go to karate camp, Hank begged to go too! What? You want to go to a two day camp, out in a dusty field, where you do nothing but karate? Without your brother? This was new! All of sudden Hank wants to do new things, by himself and without fear.

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 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.

Hank said to me one day, " said no one would notice my face!" Did I say that? Yep...sure did! "I'm sorry Hank...I didn't think anyone would! You just look so good...but I guess you DO look different than you did in the spring." "Yeah, I guess I do..." Hank said with a hint of sadness and wistfulness in his voice. UGH! Hasn't this kid been through enough? Two trips to New York in four months...dragged from doctor to doctor....blood tests...biopsies....a major 8 hour surgery....the knowledge that he has this terrible disease... And now he has to be ridiculed and reminded that he is different every single day? It's too much! Those kids don't understand what he has been through. And I hope to God, they never have to walk in Hank's's not Hank has good days and bad days...but he handles it all beautifully. So now when someone on the playground or in the bathroom asks him about his face, more often than not, he just says, "It's a long story..." I think he is so courageous!

With that said...I am not one to take something lying down... Kyle, our friend in Connecticut who also had PRS as a child and has endured many surgeries, called to talk to Hank and told me that he too, had similar things happen after his first surgery. Kyle said he thought his mom talked to the school about it and somehow they told all the kids. Kyle's advice was to just "get it out in the open." He suggested that the teachers talk to the students and tell them that Hank looks different because he has Parry Romberg Syndrome and had surgery.
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.

One morning, as I dropped Charlie off for kindergarten, Charlie's teacher took me aside, "My daughter came home from school last night, talking about Hank," she said. "She told me that she and her friends sought Hank out on the playground just to say hi, and then she sat down at the computer and made a card for Hank," she said happily. I was so surprised...and relieved! This was great...a positive response!

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.

She turned towards the other mothers, who I did not know, "Hey, did the teachers talk to your kids about Hank?" she asked. They looked thoughtful and started nodding..."Yes, I believe so," said one woman. "I don't see what the big deal is..." said another, "Kids are just curious..." she continued, "I mean, the kid has some freaky weird disease...of COURSE the kids are going to be curious! How do they know it's not contagious?!" Silence. Staring. Silence. I was stunned! Well no wonder the kids are giving Hank a hard time, if this is what the parents are saying! I felt sick as my stomach dropped to my feet. I quickly regained my voice and said, "Well, the kids didn't know he had an illness, and just noticed he looked different. It's OK to ask questions and be curious, but there is a nice way and a rude way to ask. And it gets tiresome to have to be asked about it every single day," I said, as I worked hard to keep my anger in check.

She nodded and started to continue her rant, but then I saw the look on her face change, as she abruptly stopped and asked in a small voice, "Are you Hank's mom?" I looked at her in silence. And let her question hang in the air a moment before I replied, "Yep." And then her voice raised about two octave's as she turned different shades of red and said, "'s SO nice to meet you!"

The humor of the situation was not lost on me. I love it when people open their mouths and say stupid things and then get caught and feel like fools. I think it's hilarious! But at the same time, I was heartsick for Hank, knowing that the questions would not stop...that if the parents were this ignorant, then there was no hope for the kids! And this from a Christian school!

But I also know that for every rude and intolerant person I come across, there are ten good, and kind and supportive people to lift us up. Hank's teacher is wonderful. She's a mom and she understands how I feel. I am so grateful that she took the time to talk to the other teachers. She is proactive and she is kind. I didn't realize that with Hank in third grade now, he would be on the playground with fifth graders. I hadn't anticipated that there might be problems...but with Hank's great attitude and his supportive teacher, I have to put it all in God's hands, and stop worrying. I still occasionally ask Hank if the kids say anything about his face. I think most days they do. But he is stoic, and doesn't complain. He has a great inner strength...and we are just taking it one day at a time!

Can't believe it's already October! Where has the time gone? I have tried many times to sit down and write...but I couldn't...emotions have been up and down with Hank's issues at school...and all we are really wanting is for a nice normal life. But when you have a rare illness, I guess there is no such thing as "normal". But we do our best and have some fun along the way. We've managed a few fun things in the last two months... the State Fair, a Rivercats game, swimming, boating and of course our favorite...waiting for the Ice Cream Truck!
Last weekend, we loaded up the car and headed back to our home town of San Luis Obispo. Our friends were holding a "Drive-thru" BBQ for Hank. It was amazing! I had been down a couple of weeks before to help out a bit...distribute tickets, hand out flyers, and figure out where we were going to get our supplies. We got there a couple of days before the big event and I went shopping with my friends, Nancy and Stacey, to get all the paper goods we would need. We planned to do about 500-600 dinners and knew it was going to be a big undertaking.
I am amazed at how people pitched in.
The fundraising idea was started by our friend, Keith, who worked with me when I was in the home building industry and was also our next-door-neighbor. Stacey and Nancy joined in and gratefully, Dave Auten headed up the cooking and also got beans donated from the restaurant where we all used to work, F.McLintock's.
And then other people joined in...Friends from high school, jr. high, elementary school, waitressing days, health club days, college days...builder days...friends we hadn't seen in a long time!
Jeff's former company, Casey Printing, donated the printing of the tickets, an associate of mine, Susan Rees from The Image Factory donated the artwork for the tickets. And our dear friend Todd, let us use his salon, The Blade Runner as a headquarters for ticket sales. Not only that, but Jeff's real estate office, Century 21 Advantage let us sell tickets from there, in Santa Maria. We had two locations in two different cities.

We had about 20 people who sold tickets, collected donations, and then showed up the day of the BBQ; to assemble the food, BBQ the tri-tip, collect tickets, run food out to cars, etc. We were so lucky to have Dave and Paul leading the BBQ team. Unarguably, the best BBQ-ers on the Central Coast! Everyone worked so hard and we had so much fun! Hank was on hand to witness it all, but also thankfully, Jeff's mom was there to keep the kids entertained on the playground and Nancy's teenagers were there to swim with our kids.

The event was held at the Elk's Club, where my Dad, Ed Adler, was a member and the bartender for many years. It was sort of a memorial for him in a way...that the Elk's would donate the use of the facility to help out their old friend's grandson. It was a bittersweet day for me. Being inside the Elk's Club, where we had spent many different occasions over the years...made me really miss my dad. But I felt my his presence as we joked around and chatted with friends. Dad loved people and I know he would have loved this event!

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.
And as if this weren't enough...Hank had the chance to meet someone else with Parry Romberg's! Through "The Romberg Connection" I have made contact with many people. One of them, Megan, lives in the SLO area. We had emailed a couple of times and are Facebook friends. We met for the first time on Friday early morning coffee chat. Megan was stricken with PRS when she gave birth to her first baby. Adult onset...she got progressively worse and had surgery about 10 years later. She looks great! Looking at her, you would never know. We shared information about the illness, and she told me about her experience with it. We talked about possible causes and theories...always searching for the common link. But everyone is different and it makes it hard to figure it all out.

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.

It was a special moment when Hank and Megan met. Hank is the first person Megan has ever met with PRS. And with the odds something like one in 6 million, it's no wonder! But here is Hank, diagnosed less than a year ago, and already has met three people with PRS!! It's such a great gift to meet people who have the same illness. To meet people who understand and who look similar...priceless...something to treasure!

The BBQ wiped us out. So instead of driving home the next day, we decided to spend one more day on the beautiful central coast! I felt like we didn't get any quality time as a family...running errands separately, spending Friday afternoon at Hank's naturopathic doctor's office, and then the BBQ itself. So a day of family togetherness was called for. It was great...lunch at "Fat Cat's" in Port San Luis, and then we went down to the beach. Being a coastal girl, living in the valley is a huge change. Sometimes I feel so a result I can't come to the coast without putting my feet in the ocean. So that is what we did. The kids had a ball, running in the waves, building sand castles, and getting soaking wet and covered in sand. Perfect!

Once we got home, I sat down and went through all the tickets and checks from the BBQ. Our HH4H BBQ volunteer team was dying to know how we did. And we did great! Really exceeded all of our expectations! It was so exciting to announce to them that all their hard work really paid off!

And so, although we wish that life were different and that our sweet young son was not faced with such a devastating disease...we count our blessings every day. We are so grateful for the friends we have and have been able to reconnect with, who give selflessly of themselves for Hank. The dedication and generosity of our Central Coast friends has overwhelmed us...we are so blessed to be embraced by two communities...the hometown we left behind and the community in which we live. All of these people have shown our young son that there is good in this world and how people take care of one another! The lessons he learns each time people reach out to him, go a long way in shaping the man he will become!

We continue to move forward...more fundraisers, Halloween, another fundraiser, Thanksgiving, another trip to New York and another surgery....Christmas...and so it goes...


  1. Terri!.... wow... if I was a captain picking teams... YOU would be my first choice! :)

    amazing... just amazing....

  2. Terri,
    I have tears in my eyes as I read this latest post of yours. We share so many feelings and you present them so well. I am grateful for the competent and knowledgeable surgeon that we know. And I love hearing how Hank grows emotionally as a result of having PRS. I can't wait for the day that we meet, and that Hank and Denise can chat too. Be well, friend. Elisa

  3. Terri to put it simple..You just rock..What an awesome and loving mom to write such a beautiful piece about the reality of your world..A very selfless love and nature that was always present..With Jeff too..I forever hold you dear and close in heart..I send you love and encourage you to hold tight..All will come to sit in peace in the near future..Be good to yourself from time to time too..Chin up.. :-)


  4. Terri, I was directed to your site by someone whose daughter is a week away from this surgery with Dr. S. I read the entire blog in one sitting.

    What an amazing journey you are on. I am awed by you, Hank, your family and the goodness of friends and strangers. The gift of this story is beyond measure.

  5. Thanks for sharing your feelings and situation, good and bad. You guys are such a strong family and through your strength the people around you will learn to love others no matter what they look like or what they are dealing with. Granted there will always be rude people, but sometimes we get funny moments like you shared. Keep up the great work!

    PS What a beautiful beach!