Sunday, July 12, 2009

Recuperating in the Country

After 12 days in New York City, we are so happy to be in the wide open spaces of the Connecticut countryside. Friday, we slept in, went to Borders for a new book, grabbed a bite to eat and went back to prepare for departure. After packing up and cleaning the apartment, Hank and I eagerly awaited the arrival of the Richard Family.

Patty called to let me know they were there and Hank and I rushed to the lobby to greet them. Since Patty and I had only communicated through emails and phone calls, I had no idea what she looked like. We came out to find a pretty, petite and fit blonde woman and her model-cute 14 year old son, Sean. We let them into the lobby and exchanged hugs. "Larry is parked illegally at the curb," she said. We rushed in, talked for a moment and grabbed our bags. I am embarrassed to say that we did not pack light, and I feared for Larry's back as he hoisted our bags into the back of the SUV.

Larry navigated us through Manhattan traffic as we made our way down to Little Italy for dinner. We made it to one of their favorite Italian restaurants, La Mella's. It was a family style restaurant with photos of their famous patrons adorning the walls. This was the real deal...the true New York Italian experience. Larry and Patty's daughter, Amie also drove in from Long Island, along with their niece, to join us for dinner. We had a great time getting acquainted and I immediately felt at ease. Larry is so funny and his boisterous personality kept things lively. Throughout dinner, Larry would look at Hank and then tell me, "He looks so good, Terri. I can't believe it!" And then he would grin at Hank, "You look good, buddy!" The minute I would say that I thought he looked too swollen or was worried about his eye, the entire family would reassure me..."No, looks great!" Sean would say with a thumbs-up. "Oh Terri, he looks SO good," Patty would say with her slight New England accent. "He looks so much better than what I expected!" Larry was quick to say. I was so relieved to be with people who not only could give me an objective opinion, but actually knew what they were talking about... they had been in my place!

The street was full of vendors and Amie went across the street and came back with a Spongebob shirt for Hank....and the bond between them was formed. Hank said he needed to use the restroom and Larry told Sean to go with him. Hank came back chewing gum..."Where did you get the gum?" I asked Hank. "From a guy in the bathroom," he replied. "WHAT? What are you doing taking gum from a guy in the bathroom? You know better than that!" I exclaimed, not believing that he would do something so foolish. "No, it's the guy who works in the know, he hands you a towel to dry your hands and stuff," Sean said in Hank's defense, thus forming a bond with Hank. I breathed a sigh of relief and suggested he not take any more gum...

After dinner, we left Little Italy and headed for Connecticut. Getting out of Manhattan was more difficult than we expected...apparently Friday nights on Canal Street become a sidewalk market of sorts with vendors selling everything from designer knock-off purses to Hindu statues. It took us an hour to go one mile, but did give us a chance to take in all the sights and sounds.

We arrived at the Richard's home around 10:00 pm. We still hadn't met 19 year-old Kyle, who is the one who endured the same surgery as Hank, many years ago. Hank was looking forward to meeting him and Patty said Kyle had called and said, "Don't let Hank go to bed until I get there!" As we got out of the car, we were greeted by Mocha, their chocolate lab. Hank was so happy to see a dog! And Mocha was so happy to see her family!

Amie and Sean had followed us home in Amie's car. They hit the door with the largest and funniest balloon hat I have ever seen. "We got you a hat!" they both exclaimed to Hank. Sean helped Hank put it on, and Hank grinned from ear to ear! I was soon to learn that this was going to be a visit full of fun and surprises, and would be the best medicine possible for Hank's recuperation.

Kyle got home shortly after we arrived and he and Hank got to know one another. They were visibly excited to meet. Patty and I started snapping pictures of them, knowing that this was a momentous occasion. I did not realize it, but Hank is the first person Kyle has ever met who suffers with the same illness! And here, Hank has had the good fortune to meet two young men with PRS! Amazing!

Kyle is a friendly young man with a sarcastic sense of humor. His blonde curly hair sets off his green eyes and his build tells you this is an active kid. I don't know what I expected...I had seen photos of Kyle before and after surgeries... I think I thought I would find a timid, quiet and frail teenager...and to see this funny, vibrant and busy guy who has a gentle manner and is living a full life, gave me the much-need boost of hope for Hank to have a normal life!

Kyle was diagnosed at a young age, and his parents were given no options. But then they met Dr. Siebert, and their lives changed as they had met the one man who could offer them some hope. Kyle had the free-flap surgery that Hank had, when he was just 5 years old. Kyle's deterioration was severe and his facial bones were affected. Larry and Patty tell me that Kyle has endured seven surgeries through the years. Because the disease involved bone, Kyle's face would change as he grew, and then another revision would need to be done. His last major surgery was a year and a half ago, when he flew out to L.A. for facial reconstruction. It was a long and painful recovery, but you would never know that looking at him now. Kyle's face is near perfect. A little issue with the eye that will be addressed next time, but for the amount of involvement he's amazing he has a face at all!

I explained Hank's surgery to Larry, Patty and Kyle. I told them how this was an intervention, rather than the reconstruction that Kyle has been through. As they listened, they were amazed at what Dr. Siebert is able to do. "You have saved this kid the numerous surgeries that Kyle went through," said Larry. And that was EXACTLY what I needed to hear!

Larry and Patty and their kids are amazing. The challenges that they have faced with this disease and having no where to turn... they are the trailblazers. They've done the work for the rest of us, they have sacrificed and endured while putting Kyle and their family first. I was unsure about coming here...not knowing them...being 3,000 miles from home with a recovering Hank...but I had faith that this was meant to be. And I know, without a doubt that this is where both Hank and I need to be.

Saturday, we woke to the sounds of birds chirping and ducks quacking. We had not seen the backyard yet and were amazed at what greeted us. There is a beautiful patio with swimming pool and gorgeous landscaping. Beyond the pool is the tennis courts that Larry and Kyle installed. And then there is the pond, complete with turtles, fish and ducks! No skyscrapers, no neighbors on top of you...just the wide open sky, the trees blowing in the breeze and the scent of flowers in the air.

Hank is having the time of his life and I couldn't be happier! Kyle is a volunteer fire fighter and the department had a controlled burn. We got got to see the firemen in action as the used the big hoses to put out the fire. Hank thought it was terrific!

The Richard's have a fire pit in the backyard. They fill it with firewood and set it ablaze. They asked Hank, "Do you want to roast marshmallows?" "Yeah! I've never done that, "he said. There was a collective, "WHAT? You've never roasted marshmallows?" They turned to look at me with complete disbelief that I would let Hank get to the ripe old age of eight, without roasting marshmallows. I defended myself by explaining that fire pits and little kids don't mix... but I think they secretly harbor the belief that I am doing this child a disservice by not letting him experience the thrill of putting food on the end of a stick and sticking it in a fire.

And so Hank finally got to roast marshmallows with Sean. They had a great time. Larry went and found the perfect stick for Hank and whittled the end so the marshmallow wouldn't fall off. Hank was in heaven! The smile on his face and the marshmallows in his hair said it all!

Little creatures live around the pond. Sean has schooled Hank in the fine art of "frogging". I looked out the window and watched the two boys stalking poor innocent frogs at the water's edge. As they would get closer the frogs would leap away and the sight of the boys splashing after them cracked me up. I heard yells and looked up to see Sean holding a prized frog. After they released the first one, Hank caught one. He ran up to the patio to show us. He held it tightly in his hand, with the legs hanging down. It was so cute...bright green with little black spots. Hank proudly displayed his catch and then ran back down to the pond to release it. I won't go in to how I kissed a frog to save it from being thrown, rather than placed, in the water...but suffice to say I have gained big brownie points with the under-15 gang.

Sean has ducks...Carlos and George. A large white Long Island Duck and a little Mallard Duck. They are best friends and cruise around the pond or waddle along the shore together. Sean introduced Hank to Carlos and Hank sat and petted, and yes...hugged the duck. Hank loves animals and can't believe his good fortune, to be surrounded by so many.

Today, we went to church and then Kyle took Hank on a tour of the firestation. The tour was cut short when the station got a call, but Hank was able to see the guys suit up and head out, lights blazing and sirens wailing. (They did that for Hank's benefit...)

This afternoon, Hank and Sean went hunting for bait worms. They had a great time digging them up in preparation of their fishing excursion. While I stayed behind, Patty, Larry, Kyle, Sean and Mocha the dog took Hank across the way to their favorite fishing spot. Awhile later Kyle came back to report that Hank had caught a fish! And not only that, he was the only one to catch one! And then Patty came back to tell me that Hank wanted to show me the fish. He waved to me as I came down the hill. With excitement in his voice and a bright smile on his face he called to me, "Mom! I caught a fish! Come see!" He waded into the water and grabbed the line pulling up a beautiful rainbow trout! He held it up for me to see and then with Larry's help, released it back into the stream. Such a proud moment and one he will never forget!

Right now Hank is helping Sean collect kindling for the fire pit. Larry has promised him "S'mores" tonight and Hank is bound and determined to have them. He is having a great time. This is just what he needed... a chance to be a kid. Hopefully, this will be what he remembers when he thinks of this trip. I know he won't forget the surgery, or the pain of recovery. But hopefully these experiences are helping to lessen the pain. Being here reminds me of simpler times...playing in the sunshine...running around barefoot, catching frogs and fish....helping to collect firewood...roasting marshmallows...playing with ducks and dogs...

This is what he needed for recovery...or maybe I should say we...


  1. Terri, this is awesome - just the whole blog and taking us all along on your's helpful and it's healing! Man the picture of Hank holding the frog up - he looks awesome, I am telling you, I think if you couldn't see the stitches you would never know he had surgery or PRS. {hugs} Terry

  2. hi Terry - this is Patty's sister, Barb, from LI - I'm so sorry that I didn't get to meet you and Hank but it sounds like the both of you have had so much going on - love all the stories surrounding NYC and CT! Have a very safe trip home on Tuesday. Our best wishes to Hank! Love the Heim family

  3. What an amazing family that you are staying with. And just think, you can be that family to another family dealing with PRS one day. The support system. Im amazed at Hank's progress and am sending my best wishes for your family and a safe return. Now Im craving smores!

  4. I love going back and reading this article once in awhile (that's all I can handle.) It gets me every time!!
    It really brings me back to reality and keeps me grounded. So you writing these blogs are helping more than people with PRS. But I do know that mom and Kyle really appreciate this!! MIss you guys. I hope you are getting a lot of people to join Helping Hands for Hank!!