Thursday, July 30, 2009

Clearance to Swim!

Three weeks post-surgery. Has it only been three weeks? Has it already been three weeks? Time seems to be suspended as we eagerly watch Hank's face for signs that he is healing. Each day he looks more and more like his old self...after getting used to the atrophy on the left side of his face, we are now trying to get used to the fuller-than-full left side of his face. He has lots of energy and wants to be outside and doing things!

I am amazed at the quick recovery of this child. Hank has always worn his emotions on his sleeve...and I think because of it, he sometimes seems younger than he is...but really, he has shown us that he is much older than his eight years. He is strong both physically and mentally. He is stoic. He is brave. He marches on...and so do we.

Lucy and Charlie are so happy to have their big brother home and don't like leaving his side. They have all taken to sleeping in the same room. Alternating between bedrooms and the playroom. I think the separation was hard on all of them and they are making up for lost time!
The first week home, we truly spent AT home. Hank did not want to go anywhere. I wasn't sure if it was because after 17 days away, he was just so happy to be home...or if he just didn't want anyone to see him yet. So we very slowly started to have him around other people. First just his Aunt Barbara, Uncle Chuck and cousins Christy and Nick came over to welcome Hank home. He happily showed them the incision on his back and seemed very comfortable. "OK, he's good with family," I thought.

The next step was the ice cream social at the Montessori School that Lucy and Charlie attend. The directors of the school, Christine and Julie were all smiles when they saw Hank, and welcomed him home. Hank seemed completely comfortable with being around other people, many of whom have supported many of our fundraisers. One of the teachers (who is also a parent), Sandra came over to say hello, along with her husband. They were so glad to see us and wanted to know how Hank was doing. They had followed along with the blog and were up to date, and had been thinking about Hank. Hank didn't seem to mind that we talked about his surgery and recovery. "Alright, we are making progress," I thought to myself.

That night, I sat down at the computer and was looking at photos of Hank. He came in and sat with me. "Look how much better you look now, than right after surgery," I said to him. We then looked at some pre-surgery photos. "Look how thin your face was," I continued. Hank studied the photos and then said, "I miss my old face," as the tears started to spill over his eyelashes. "I know..." I told him, "but your face was changing and we had to do the surgery." He nodded, but the tears silently ran down his face as he buried his head in his arms. "Oh no!" I thought. "What am I going to do? How am I going to make him understand that we had no choice?" I really thought he understood.... And then I had an idea....

After Hank's surgery, we spent time in Connecticut with the Richard family. Their son, Kyle, had the same surgery 15 years ago. I have never shown Hank the pre-surgery photos of Kyle. I have never wanted Hank to know that this disease is progressive. I didn't want him to spend his time worrying what might happen...but I realized that my back was against the wall and I had no choice.... "Hank, do you want me to show you what Kyle looked like when he was little? Before he ever had the surgery?" "Is it bad?" he asked. "Yes, very bad," I told him. "Will it give me nightmares?" he asked. "It might...but I think you need to see them." "Ok, I'm ready," he said. I went and got the board that my sister, Barbara, created for the winery fundraiser. With Kyle's permission, we put his before and after photos on a board, to show what Parry Romberg Syndrome really looks like, since Hank had not progressed as much.

Jeff came in and sat on the bed next to Hank as I walked in with the board. "Hank is upset," I told Jeff, "It's time for him to see Kyle's pictures, do you agree?" Jeff said he did and I asked Hank if he was ready. "Ready," he said, and I turned the board around. Hank's eyes widened as he studied the photos. "Whoa..." was all he said. I explained that Kyle had been suffering with PRS for about 4 years by the time he had his surgery and it had progressed all the way to the bone. "So that is what can happen if you don't have the surgery?" Hank asked. "Yes," Jeff told him. Hank quietly studied the photos, looking first at the pre-surgery photos and then focusing on the post-surgery photos. "Kyle looks good now," he said. "OK, I'm glad I had the surgery!"

And that was that! (whew...huge exhale)

The next outing was church. Hank happily embraced our priest, Fr. Soane, who was so pleased to see Hank back from his adventure. That was a day where I prayed in thanksgiving. "Thank you God for getting us this far, Hank is home. He made it through the surgery. Hank is alive!" (not that anything was life-threatening, but you just never know...right?)

After Hank had been home for 10 days, we ventured to his friend, Colin's, house for a playdate. Colin has younger siblings that are the around the same age as Charlie and Lucy, so it works out good for all of us. Add in that their mom, Cathy is a good friend, and it's perfect! I watched the kids as they greeted each other...waiting for someone to mention Hank's face....nothing. They didn't even notice! Later when they were outside, Hank came to me and said, "Mom it is just so hot! I need to take my shirt off." And so he whipped his shirt off and I realized he was wanting to show off his incision. "Does this look like a shark bite to you?" Hank asked his friend. "What is that from?" Colin asked. "My operation," Hank replied. "!" was Colin's response. I handed Hank his shirt, he put it back on and off the boys went, to play more basketball. I breathed a sigh of relief and chuckled to myself at how sly Hank was.

We BBQ'd with friends the next day, and although their kids knew all about the surgery and had seen the photos on the blog, it just wasn't a big deal. They inquired about it when they got here. And they knew not to play rough...for which I was grateful! But after the initial questions, all was forgotten! I love the innocence of kids and how they don't really notice the differences of others....or maybe I should say...they don't care! If only as adults, we didn't lose that ability to just accept people for who they are and not for what they look like...

We've hit a post-surgery milestone. Hank has gotten the OK from his surgeon, to swim. Hallelujah! Summer can now resume! It has been an agonizing wait. As the temperature soared to 107' last week, I turned up the air conditioning and we gathered indoors, to wait it out. Without the relief of a swimming pool, it is just no fun!

I sent Dr. Siebert an email the other day, including the latest photos of Hank. I told him that Hank wanted to know when he can swim. Within a few short hours we had our answer. "Hank can go swimming..." the email read, "All looks fine....Don't worry....let him be himself..." Just a few sentences and we are all smiling.
That night, our friend, Sophia stopped by with dinner for us. We have great friends! Sophia organized a group of friends to bring us dinner 3x a week for the first couple of weeks after we got home. So did she know that I wouldn't feel like doing anything? I told Sophia the exciting news about Hank getting clearance to swim. "Well then you better bring him over and come swimming at our house tomorrow," she said. Hank was so excited!
The next day, we headed over to Sophia's house. And instead of just our kids, she had called some friends and we ended up with 12 kids for Hank to splash around with! Although Hank is the oldest of that bunch, he still had a great time, and I was so happy to see him having fun. After swimming the kids all played together and I was able to have some "girl" time with my friends...something that I really needed! What a nice lazy summer day! (And once again, the kids didn't notice his face!)

Today, we finally made it to the new "sprayground"...a park that also has an area where there are fountains and water features for the kids to run in. Cathy and her kids met us and they all had a ball. Fresh air, sunshine, laughter and exercise. Just what Hank needs.
We've had another exciting occurrence since we've been home. The Hank Chronicles is getting noticed by the exact people who I hoped would find it! I have received an email from a woman named, Michelle, in Jerusalem who in June traveled all the way to the United States to have the same surgery performed by Dr. Siebert. She is following Hank's story and is excited about how good Hank looks. And then there is the email from the woman in Australia who is also following along with Hank's story. She, too has PRS, and is excited to know there is a way to intervene and stop the atrophy's progression.

Two days ago, I received an email from a mom who also has an eight-year old boy with PRS. Her son is having surgery with Dr. Siebert on August 6th. She wrote to tell me that the blog is helping her know what to expect when her son has his surgery. I have written her back and have included my phone number. I know it was helpful to me to have Kyle's mom, Patty as well as another mom on the east coast and one in Ireland, to turn to. I hope that this mom will turn to me, when she needs someone to talk to. Or if she has questions. When your child has a rare illness and it's one in 6 million...when you find another family with it, you need to hold on...there just isn't that many of us!

And if that wasn't enough, even Dr. Siebert has read The Hank Chronicles! And he approves! And maybe, just maybe...he can use it for
his patients too, as they prepare for surgery. I feel like great things are happening and strides are being made in the treatment and awareness of this illness and I am grateful to be on the front lines. Now if we can just get the name, "Parry Romberg" into the mainstream...then we can get the research going...!

I am thankful for Hank. And for him allowing me to tell his story and to share his journey with others. He knows that it will help someone else... And so we will take Dr. Siebert's advice and just "let Hank be himself"...this is his summer...his job is to just have fun and enjoy life. And with the first surgery behind us and the revision surgery 4 months away, now is the time to do just that!

Friday, July 17, 2009

Happy Homecoming!

We are home! Two weeks post-op and happy to be back! Missing our friends in Connecticut and the beautiful countryside... but happy that our family is back together again! It has taken me three days to write this installment...Lucy is my constant companion and my body is still on eastern time, making me feel so tired when it only 8:00 pm here! So although this is dated Friday, it's really Saturday by the time I am finished!

Our last days in Connecticut were great! Hank had time to rest and play and build things with Sean's Lego's. Together the boys made some amazing things! I had some downtime with Larry and Patty and their wonderful neighbors, Mark and Sandy. It was nice to just do "normal" things!

The boys collected firewood so that we could make s'mores, and I was surprised to see Hank maneuver the wheel barrow all by himself. (I know...he should have been resting...)

That night, we had a nice dinner outside on the patio. As it got dark, I saw two shining eyes in the forest looking at me. I closed my eyes and looked again. Now there was just one light...wait, another one. They kept blinking out. "Is there someone in the forest over there?" I asked, hoping my voice wasn't trembling. Patty and Larry said simultaneously, "Fireflies" without even looking up. Fireflies? I had never seen fireflies in real life! "Hank, look at the fireflies!" I exclaimed. Hank and I were so excited to see them. As it got darker, Sean caught a couple for us to hold in our hands. They are cute little bugs who's bodies and tails light up in cool neon green color.

Sean taught Hank to make S'mores as we gathered around the fire pit. Hank just loves roasting marshmallows now, and made sure that he got his fill! Later that night he helped Sean take out the trash, and found himself face to rear end with a skunk! And it was Hank who was facing the skunks rear-end! But they raced away and saved themselves from a stinky attack!
Between S'mores, fireflies, skunks and Lego's, it was the perfect night!

I should mention something about Patty.... I have never met a Patty that I didn't like. So when Patty invited us to come visit, I knew that it would be good...she's a Patty after all! I have three sisters: Mary, Patty and Barbara. My sister Patty, has two sisters-in-law: Patty and my life is full of Patty's and Barbara's... Now, new Patty is telling me about her family. She has a twin! Can you guess her name...? Of's Barbara! What are the odds of that? So now I know THREE Patty and Barbara duos! Another sign it was all meant to be...

Hank and Sean went fishing again and caught two fish...a rainbow trout and a brown trout. Sean showed Hank how to gut and clean the fish and Hank had a full biology lesson on the fish's organs and eggs! Without Larry there, I had to put the worms on the hook for Hank, which moved me up to "super-cool mom" status, but secretly grossed me out!

We came back and cooked up the fish. Hank took one look at the fish with their heads still on and passed on trying it. Stuck with the hot dog....

The boys played outside while I did some gardening. Larry had been dismayed by the dead carnations around the pool, so I dead-headed them for him...least I could do...the man had put up with us for 4 days! Hank and Sean had a huge water fight, laughing and yelling! So much for Hank resting. That kid has had more energy than ever! The next thing I knew Hank was in the pool. Just to his waist...he knows he can't swim until we get clearance from the doctor...but there he was just taking a break in the water.

Larry treated us to a trip to the ice cream parlor for our last night in Connecticut. Big hit of course, with Hank. (OK, me too!) We sat on the porch of the ice cream parlor and watched the cars go by, and watched dusk descend on their sleepy little town. It was so idyllic, so peaceful and so perfect!

The next morning we got ready to leave for the airport in NY. Kyle and I had a chance to talk...I asked him a lot of did he feel about the surgeries? What should Hank tell people who ask? Things like that. I asked him what he remembered at Hank's age? Kyle was so open with me and told me what he thought. He had a lot of ideas to help me assist Hank through this, but the biggest thing that stands out to me is when he told me, "I would not be who I am today, if I did not go through all this. It has shaped who I am." His words struck me... Kyle is a great kid, who will be a great man.

Kyle and Hank said their goodbyes and we promised to stay in touch. About 10 minutes later, Kyle was back. He ran upstairs and came down with something in his hand. "Here Hank, look...these are the firefighters gloves I wore when I put out that fire the other day. I want you to have them." OK, he could have warned us...Patty and I looked at each other with lumps in our throats and tears in our eyes. What a guy! What a great guy! Hank was thrilled and Patty and I were too overcome to say much.
We loaded up for the long trip home. We said goodbye to Sean and Mocha and stopped by to see Larry at work. Patty drove us all the way from her house to JFK and made sure we got checked in... even took an extra minute for goodbyes despite the police officer telling her to move her car!

After making it through security, which Hank is an old pro off before he even gets there, we stopped in at the newsstand at the airport to stock up on water, a few snacks and reading material. I had my hands full and noticed a man in a pilot's uniform behind me. He was just buying a newspaper so I asked him if he would like to go ahead of me? He seemed a little taken aback...New York City, after all... and then said he would and thanked me. He thanked me again after making his purchase and told me to have a nice flight. I was thinking the same of him!!

We boarded the plane...Hank had the window seat and I was stuck in the middle. A well-dressed man in his late 20's sat down next to me. We said hello and he proceeded to get situated. The plane was hot. There was condensation on the windows. We taxied down to where the planes line-up for takeoff. And then nothing. It was hot, my seat mate brought a lot of food with him and proceeded to eat a huge sandwich while poking me in the ribs with his elbow. He finished that and then had soup. Again with the elbow. I was starting to get was hot, and now stinky thanks to him. Finally the captain came on and apologized for the delay. "They have sent us to the farthest possible location," he said, "and I'm sorry it's so was over 100' when I boarded and we are trying to cool it down....oh and we had a maintenance light problem that we had to take care of." WHAT? I did not like the sound of any of it... I would have taken a deep breath, but could not since my diaphragm was seriously inhibited by the elbow jabbing it!

The guy next to me finally put his food away as the flight attendant told him to prepare for takeoff. The pilot came on and said we were good to go, and with that we raced down the runway.
It was a shaky ride...turbulence, a little shuddering from the plane, and I would swear we achieved weightlessness a couple of times. The pilot came on to welcome us aboard, "Welcome aboard, we are non-stop to Cabo San Lucas!! Ha...just kidding...San Francisco!" I liked him already!
It was a non-eventful and good flight...despite the guy next to me, who kicked off his shoes and pushed them under MY feet...and his smelly bag of food too... then he hogged the armrest, picked his ear, picked his nose...ate raw cauliflower, which is really an assault on the senses, worked on his laptop with his elbow once again in my gut...and was just generally annoying and inconsiderate. But I never said anything...he was nice. He was clueless. And we had such a good trip, I wanted it to end on a positive note.
Hank is a great traveling companion. He likes to fly and he keeps himself busy. He read books, looked out the window, played with his Nintendo DS and we played "Travel Battleship" (which I don't recommend for the confined space of an airplane...the small pieces get everywhere!) Hank was just happy to be heading for home, to see his brother and sister, Dad, friends and family.

We made great time and arrived in San Francisco a few minutes early. As we got near the door to leave, a group of flight attendants and the pilot were saying goodbye to passengers. As we said goodbye and thank you, I realized our pilot was the same pilot I had seen at JFK and asked if he'd like to go ahead of me! I told him that seeing as how he was our pilot, I was really glad he went ahead of me. He recognized me with a huge grin! He said that I should've brought Hank up to the cockpit before the flight for a tour. OK, who would even think to do this? Not me...

I told him that would have been great...that Hank was in NYC for surgery and it would've been the perfect ending, but maybe next time. Well , that was it! The flight attendants start moving the barriers to first class while saying, It's not too late...go now. Grab your camera, mom!" The pilot led Hank to the cockpit while I searched my bag for my camera. I stepped in to the cockpit to find Hank sitting in the pilot's seat, hands on the wheel and asking a ton of questions. That kid was in heaven! We took a few photos and the co-pilot handed Hank some wings. "you've got your wings now, " she said. Hank was beaming! The pilot, Mark, asked what Hank's surgery was for. I told him Hank had Parry Romberg Syndrome and a brief explanation. I told him he could check out Hank's web site and blog...especially since his photo would be on the blog shortly...oh and I asked if that was OK. He laughed and said he would check it out.

It's just crazy how things have worked out for us on our trip! We had a short layover in San Francisco and then hopped a little plane (complete with propellers!) to Sacramento and were there in less than 45 minutes. Jeff was there to greet us and we were so happy to see him. But I was disappointed that Charlie and Lucy were at my mom's house instead of the airport. I had geared myself up for seeing them and could not wait another minute!

Hank talked a mile a minute on the 30 minute drive home. He filled his Dad in on everything from fishing to the flight home. So animated, so excited and so happy. We arrived to "Welcome Home" signs at my mom's house. We snuck in the door, Hank walked in and announced, "Hi Lucy and Charlie! I'm home!" "HAAANK!!" they screamed as they ran to hug him. Yelling, hugging, jumping up and down...they were excited! I hugged my mom hello and then waited for the onslaught of hugs and kisses...nothing...they didn't even notice me. Jeff finally said, "Hey guys, mom is home too!" And then, I got my hugs and kisses...and then right back to Hank. They had missed their big brother and he had missed them! Hank finally noticed his grandma..."Hi Grandma," he said and gave her a hug.
Jeff decorated our house too, and when we pulled up there was a big "Welcome Home Mom and Hank" sign covering the door. Balloons, banners and streamers! We were home! The house looked so good, and was so clean. Jeff, the cleaning fairy, had been hard at work, and his mom had cleaned up the laundry room! Hurray! Oh, but she cleaned our bathroom...poor thing...she is so brave!

We took Wednesday as a family day and were hoping to sleep in. We woke to Hank standing over our bed, holding Kyle's gloves. "Look Dad! Kyle gave me his gloves. He used them to fight a fire!" He held up his prized possession, grinning from ear to ear, so proud. Hank spent the day playing swords with Charlie, in the sprinkler with both Charlie and Lucy, on the Wii, and at the movies with the whole family. It was the perfect homecoming!

Nine months of trying to figure out how to help Hank. A devastating diagnosis, doctor's appointments, fundraising, two trips to New York in three months, fear, prayers, stress, tears and more. New friendships forged, new life experiences...our children have gained some independence from all of this, and I have learned to rely on others. Hank has never asked, "why me?" and we must follow his lead. Our faith has brought us thus far and without a doubt I know that we are on this journey for a reason.

And so we enter the next phase...recovery. Helping Hank to recuperate both physically and mentally. I'm drained...and I feel a little lost. I imagine Hank must feel a little of that too. I will send photos to Dr. Siebert today and see what he thinks and we are still waiting for the results of the pathology of the infected tissue removed during surgery. In four or five months, we will head back to New York for Hank's revision surgery. More fundraising and preparation for that trip in the months to come. This journey isn't over, but we are hopeful that the hardest part is behind us...

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...

Thursday, July 9, 2009

Surprises, Magic and Miracles!

Twelve days in New York City and Hank and I are homesick and tired! Long time to be away from home and the rest of the family! Jeff left for California at 3 am this morning. He was on stand-by for a 6 am flight and am pleased to say he was able to get on, instead of spending his day at the airport, as feared. Lucy and Charlie are so happy to have him home and probably are feeling a bit more secure...he was gone for a whole week!

It's been an amazing two days, full of surprises, magic and miracles! Yesterday, we all slept in and got a late start on the day. (it felt so good...) Not wanting to over-tire Hank, we took our time and stayed in until the afternoon. We finally ventured out and headed to Times Square in hopes of getting some half-priced tickets for a Broadway show. Every day at 3:00, the ticket booth opens and tickets for that evening's show go on sale for half price. Not every show is available, but there is usually a good selection.

As we stood in line, a homeless and somewhat drunk older man, holding a cup for change, approached us. As he got closer, he spotted the yellow "popcorn" sutures on Hank's face. He started backing up and yelling, "OH, OH, OH!!!" I thought he was just teasing Hank, but turns out he was truly freaked out. Just Great!!... "He just had surgery!" I told him. The man stopped....straightened up...and started apologizing profusely. He apologized to Hank and then grabbed Jeff's arm..."I'm sorry man! God bless!" he then apologized again and once again grabbed Jeff's arm. I could feel Jeff's body tense as he said, "Alright...move along."

Poor Hank..just as he gets the confidence to venture out... At this point, I offered to stand in line, and Jeff took Hank over to the fancy McDonald's across the street, with the best view of Times Square.

After an hour in line, I walked away with three tickets to the evening's showing of "Mary Poppins"! Hang gave me a thumbs up, "Good job Mom!" And we headed to the huge M&M store excited about the evenings events.

After a little chocolate shopping, we grabbed a cab and headed back to the apartment. Jeff and Hank went inside and I headed for the local drugstore to stock up on water. As I started towards the store, I reached in my purse for my cell phone to call my mom. Hmm...couldn't feel it...rooted around a little phone! OMG! No phone!! I ran back to the apartment and dumped the contents of my purse. "Call my cell phone," I begged Jeff. Jeff dialed the phone as I waited to hear it vibrate in my purse. "Hello?" I heard Jeff say. "Are you in a cab?" He talked with the holder of my phone for a minute, and then Jeff directed the the person to give the phone to the cabbie. ""No, please ask them to hang onto it...I will come to them!" Jeff got the information and hung up. He said it was a woman named Meaghan and gave me her address. I could tell we were lucky she found my phone, since Jeff was cracking up during the whole conversation.

He told me she answered the phone by saying, "Is this Jeff?" (my phone is programmed with the callers' names) She told him, "I sat down in the cab and my butt was vibrating!" Hence Jeff's comment of "You are our people!" I took down her address, grabbed the bottle of wine we got from Dr. Siebert, and headed out the door.

I caught a cab and gave him the address on the Upper West Side. Fifteen minutes and $12 later, I arrived at the apartment building. I saw a pretty young woman with long curly strawberry-blonde hair in the lobby getting ready to go into the building. She said Hello. "Are you Meaghan?" I asked. She said she was and smiled at me. "You have my phone," I said. "Oh, perfect timing," she said and pulled out my phone. "Your children are adorable." she said pointing to the screen saver on my phone. "Thanks," I said and handed her the bottle of wine, "here's a little something to thank you for holding onto my phone." Meaghan asked why we were at NYU Medical? I explained about Hank's illness and surgery. "This is amazing," she said, "I advocate children's causes!" She explained that her friend was starting a business to help non-profits and right now was working with Children vs. Cancer.

We both instantly felt that a power much greater than ours, brought us together! Amazing! I gave her our website address, blog address and name and number. We promised to connect on Facebook (which we already have) and to join each other's causes. We said our goodbyes with not one, but two hugs, knowing that this was meant to be!

What are the odds that I would leave my phone in the cab, that THIS woman got into? And the fact that I realized it, while she was still in the cab? Then there is the fact that I had a bottle of wine (from California, no less) that was given to us by the doctor? Jeff had offered to go after the phone, but I felt that it was something that I should do... In fact, I felt compelled to go... gives me goose bumps... (miracle?)
I got back to the apartment to find Jeff and Hank involved in a killer game of Monopoly. They had worked out a deal where Jeff could only buy railroads, utilities and a select few properties. Hank also took over the job of banker, which is always Jeff's role...I was amazed to see Hank with a hotel on Boardwalk... Jeff landed on it and it was all over! There's no stopping that kid now...

We changed our clothes and headed to the theater to see "Mary Poppins". It was our first Broadway play and we were so excited to share the experience together! The theater is a small venue, but beautiful with intricate carvings, exquisite lighting and ornate fixtures everywhere you look. We were seated 18th row center...great seats for last minute! From the moment the curtain went up, we were mesmerized. Hank sat on the edge of his seat, peeking between the heads of the people in front of him. The costumes, the music, the dancing...incredible! Hank had a huge smile on his face... well, as big as a smile a kid with stitches above his lip can have... My heart swelled and the lump in my throat appeared, as I realized that at that moment, Hank had forgotten all about his illness, his surgery, his pain and everything else. He was a kid, transported to another place and time. It was truly magical!

We went and ate a late-night dinner, chatting happily about all our favorite parts of the show. We looked through our playbills, figured out which actors had which parts and just had a great time. We got back late....and Hank didn't get to sleep until 1:00 am! Neither did Jeff, which was terrible since he was getting up at 3:00!!

I got up with Jeff to say goodbye. We walked out to the lobby of the building and embraced. We said our " I love yous" and goodbye and I watched him walk across the street to catch a cab in front of the hospital. He raised his arm and a cab immediately pulled over. (3:30 in the morning and a cab is right there!) I waved as the cab pulled away and Jeff waved back. And I was swept with a wave of loneliness. Jeff had left...and I was alone in New York City with an eight year old, recovering from surgery. "Why am I crying?" I thought. "This is ridiculous...we had always planned this!" And even though my brain told me to get over it, I couldn't fight the feeling that it was now all up to me...and me alone...and we are talking really alone...

Thursday morning meant up early for the appointment with the surgeon to get the stitches out! Finally...the hateful yellow popcorn stitches were going to be gone! We arrived at Dr. Siebert's office and saw him as we stood at the counter. He flashed a big grin and a quick wave and disappeared into the exam room. We were shown into another exam room to wait. After a very short time, Dr. Siebert came in all smiles and high-fived me and then Hank. Grinning from ear-to-ear, he asked Hank, "How ya doin' big fella?" (OK, can I just say that I LOVE Dr. Siebert? He is awesome!) He and Hank talked for a minute and then he got down to the business of removing the stitches. A few hurt coming out and Hank tried unsuccessfully to keep the tears away. But only a few squeezed out between tightly-shut eyelids. He was so brave.

When they were removed Hank asked for a mirror. He was so happy to have the stitches out. Hank's face is still swollen and his eye is drooping, so he doesn't look like himself, but Hank seemed not to notice, as he was only looking at the places where the popcorn stitches had been. Dr. Siebert told me to send photos of Hank in a couple of weeks and then every 6 weeks after that. He said he would like to do the revision around Thanksgiving or Christmas (ACK!) and that he was SO pleased with the results. I asked if he felt like he got everything and he said yes. He said that he didn't think the atrophy would be back and after the revision, he would be "perfect". (Dare I jump for joy yet?)

Dr. Siebert told Hank that he could swim in a couple of weeks and resume life as normal. He asked when we were leaving New York and I reminded him that we would be staying with a family who has been through the surgery. "Oh that's right!" he said, "Take a photo of the boys together for me." He said he was happy that we were getting together and that Hank would be able to get some support from this boy who had already been through this. Big hugs and a promise to be in contact, we said good-bye for now.

I stopped in and talked to Nilsa, Dr. Siebert's assistant...I guess that's what you call her...she does it all...if you want to talk to Dr. Siebert, you call Nilsa! (Maybe she's the boss...!) I asked about the pathology reports on Hank's tissue samples and she told me she would follow up and let me know. I didn't know this, but Nilsa has been working with Dr. Siebert for eighteen years! See? I'm right...he is a great guy who surrounds himself with great people! I want to come back to NY, just to see them!

Hank and I were hungry when we left and started walking down Park Avenue in search of a Starbuck's. We walked quite a few blocks when it dawned on me, that there wouldn't be a Starbuck's on Park Avenue! Park Avenue is more commercial...doctors and dentists, lawyers and such. And the cross streets are all the expensive boutiques.... so we went over to Madison Avenue and found one in a Mall at 55th Street. The mall was a big open indoor seating area with different coffee houses surrounding it. While Hank ate his second donut and I finished my coffee, my cell phone rang. The voice on the other end was a woman that I had met through the "Romberg Connection" web site. Her son had surgery with Dr. Siebert in December with a revision in April. We had talked on the phone once before and exchanged numerous emails.

She said she was in New York and in Dr. Siebert's office! What? She said she asked Dr. Siebert how Hank was and he said, "They were just here an hour ago!" and told her to get my cell phone number from his receptionist. I told her where we were and she said they'd be right over. OK, what are the odds of this. A disease of one in 6 million...two kids who have had the same operation being in town on the same day within an hour of each other? Miracle!

Just a few minutes later, they arrived. Huge smiles on Mom, Dad and son. I felt like we were old friends instead of people who had never met. Hugs all the way around and we pulled chairs up to the table and started talking. The table buzzed with excitement! Here, Hank was having a chance to see another boy who had just been through the same surgery. And here this boy was meeting Hank and they could see they were not alone! I'm still smiling at the memory. We quickly shared our experiences as they had a train to catch. I was amazed at their son...age 13 chronologically, but really felt much older. So friendly, so nice and so intelligent. I took a photo of the boys together. Dr. Siebert will just love it! And so will Hank!! This is the first family I have met in person, who is walking on the same path that we are... And there is something about being in the presence of people who totally, completely, and whole heartedly get it. It is a bond that we share...and I feel that although we only shared less than an hour together...that we have made new friends! Divine presence...miracle.

I am elated! Hank is not only meeting one person that has been through the surgery, but two! One who just had surgery and one who is fifteen years post surgery! Wow!


Tomorrow, we take our leave of NYC, and we are more than ready! We are heading to Conneticut to spend time with this wonderful mom and her family that I know only through emails and phone conversations. And yet I feel like I have always known her. She, through her encouragement and experience, helped to convince me that this surgery was the right thing to do. And while I've been in New York, I have talked, emailed or texted with her every day. And tonight as I was freaking out about how swollen Hank's face is... she told me it's OK and to be expected. (as did my mom-friend in Ireland!)

I'm wrung out...I'm homesick...I'm exhausted...and yet I am excited...amazed and elated. Thankful and grateful are words I use every day. The blessings bestowed upon us are incredible. The friends back home who are going to be bringing over cooked meals for our family while Hank recovers and while I am gone. The moms from school who are calling themselves the "cleaning fairies" and want to come clean our house so I don't have to worry about the house when I get home and can focus on the kids... (although I will die of embarrassment if they see how gross my bathroom is...) The people who are touched by Hank's story and want to help... Our families who are helping to care for our little ones...

Surprises. Magic. Miracles.

Tuesday, July 7, 2009

Venturing Out

Hope dawned bright and early today as we had our first post-surgical appointment at the surgeon's office. The appointment was with Dr. Siebert's nurse, Lisa, and our expectations were high, since we were told the drain in Hank's back would be coming out and maybe some sutures as well. Hank dressed in one of the many button-down shirts we were given from Hank's cousins (and his cousin's cousins!) specifically for this trip. He chose a bright yellow Hawaiian number, threw on a pair of jeans and off we went. We caught a cab up to Park Avenue for our appointment.

Once in the office, we were shown into the examination room to wait for nurse Lisa. A few minutes later, an energetic woman with a nice smile and easy personality, came in. She introduced herself as Lisa and quickly examined Hank. Instantly putting us at ease with her great sense of humor and contagious laugh, she asked Hank if he would like her to take the "popcorn" sutures off. "Oh please...more than anything!" She looked at his file and saw that he had surgery just five days ago, and said "Let me call Dr. Siebert first." After talking to Dr. Siebert she told us that we would have to wait until Thursday, when Dr. Seibert could do it himself. We were all disappointed, but don't want to rush it either. (OK, Hank wants to rush it...)

Lisa put lidocaine or some other numbing cream on Hank's upper eyelid, so she could remove the stitches without causing pain for Hank. While waiting for it to take effect, she went ahead and examined the incision and drain on his back. She told Hank that she could take the drain out for him. "Will it hurt?" he asked. "No, you'll just feel it tugging," Lisa replied. She cut the stitches holding the tube in place and gently pulled out the tube. Just like that, the hated "pipe" was removed! Jeff and I breathed a sigh of relief. Lisa was funny and I could see that Hank took an instant liking to her. He joked around with her and I was surprised that he was talking to her like she were one of his pals. Where did the boy who is usually very reserved in doctor's offices go? Has this experience changed him? I wonder...
She then deftly removed the stitches in the upper eyelid of Hank's left eye. Quick and easy...that's how I describe it. She was done before Hank even had time to complain. And then Lisa took the time to trim the popcorn sutures that were bothering him, and clip the suture ends that were poking him in the neck. She cleaned up the stitches and even cleaned out the blood that was still in his ear. I couldn't believe how much better he looked!

We confirmed our Thursday morning appointment with Dr. get the rest of Hank's stitches out!! As we headed out the door, Hank said, "OK, let's head back to the apartment!" Jeff and I started walking down Park Avenue. "Alright, but let's just get a little fresh air first," I replied. Hank has been either in the hospital or in the apartment since last Thursday! That's five days with barely any fresh air. So we continued walking, taking a left on 66th Street and heading toward Central Park. Knowing that Hank is self-conscious with how he looks right now, especially with the bright yellow sutures on his face, I held my breath and hoped he wouldn't demand to go "home" to the apartment.

We walked a few blocks, and as we crossed the street, he looked around and said, "Hey, we're at Central Park! Hey Dad! Want to see the zoo?" Jeff said he would and any worries about his looks forgotten, Hank happily led the way. We had a great time at the zoo, even though we were there a week ago. This was a different experience with Hank leading the way. "I own this place," he told us, striding towards the penguin exhibit. Hank joyfully took us from animal to animal. "Look at this, Dad!" he would exclaim, pointing to his favorite, the "Kea" bird. "Check out the penguins" he directed, taking us into the observation room. My heart soared, seeing the confidence pouring back into him.
We took a break, grabbed some ice cream and sat down under a covered walkway, as the rain started to fall. A group sat next to us with two young boys around Hank's age. I saw the older one shyly stealing glances at Hank's face. I felt the protective prickle of a mama bear on the back of my neck. And then I instantly relaxed. These sweet little boys were curious, but they weren't obvious. I don't know if Hank noticed, so I said to the one boy, "It's OK, you can ask him about his face." The boys' mother looked over and smiled at us, "Did you have surgery, honey," she asked. Hank told her he did. "Why? What happened?" Hank looked at her and said, "I have PRS and I had surgery to fix it." She looked at me inquiringly and I gave her the quick rundown. And that was that. We then talked about the rain, that they are from New Jersey and rarely come to the city, we're from California...normal things. Hank's face was not even an issue.

As the rain cleared, we finished up at the zoo, seeing a red panda, sea lions, polar bears, rainforest birds and (shudder) reptiles and bats. Hank loved it and was the perfect little tour guide.

We stopped and looked at the map of Central Park and saw there is a "Chess and Checkers" house. After playing checkers and chess with Jeff yesterday, Hank is now obsessed with checkers. And so, we of course started in the direction of the Chess and Checkers house. While walking along, Hank spotted a balloon vendor. He admired the way she twisted the balloons into different shapes. The woman looked at Hank..."You look like you've had a tough time, sweetheart. I think you need a sword." She quickly made him a sword. "Oh, and you need a belt to carry your sword. It'll keep your hands free for ice cream." And she tied and orange balloon belt around his waist. I put a dollar into the bucket, thanking the woman and Hank skipped after Jeff to show him his new weapon.

We saw beautiful scenery as we walked along. We found the memorial to "Balto" the sled dog and Hank climbed on top for a photo. (which HE asked for...) We found the "Mall" which has a beautiful tree covered
walkway and statues of poets and authors.

OK, I'll admit it...we were lost. But luckily we found another map and made our way to the "Dairy Visitor Center" and the "Chess and Checkers" house beyond. We made our way up the steps and found ourselves outside a pavilion of sorts. There was a building with a trellis-covered patio surrounding it. All along the edges of the patio were stone tables, with benches and checker boards inlaid in the stone tables.
We went inside and inquired about borrowing some checkers. They took our name, looked at our ID's and we "checked"out some checkers. Hank and Jeff played the first game, which Jeff ended up winning. It was starting to get cool and tiny sprinkles were making their way to earth. I thought we were done, but Hank had other ideas.
Perceiving me as a push-over, he said, "I want to play mom." OK, I was getting really hungry and just wanted to go eat, but Hank seemed almost cocky in his attitude, thinking he would dominate me in a game of checkers.... And so I relented...and we played a nice game of checkers...or was it? Regardless, I won. Hank was incensed. How could this be? MOM beat me? And so he demanded a rematch. But it was raining, and we were hungry...but he insisted...and I folded... And then I swept the floor with him! "Mom! You are supposed to take it easy on me!" he told me. "Why?" I asked. "This is how you learn and now you have a beat me!" That appeased him, but he did let me know that I would have to play again back at the apartment. And I will say...he is not an easy opponent! I was shocked at how good he is...and so I know it won't be too long before he is beating the socks off me! Hope he gives me a few years to feel superior though...

We continued our walk through Central Park, in search of "Sheep Meadow Cafe". We walked by the huge fields called, "Sheep Meadow" because up until 1934, sheep grazed there. But as usual we got lost, and found ourselves at a really nice restaurant. We walked around to the front...."Tavern on the Green." Whoops! A little too fancy for us at the moment. Hank said he was tired, so we let him hail us a cab and headed back down to the apartment to get something to eat and just relax.

There were flowers, balloons and stuffed animals waiting for him. Deliveries from home. Hank was thrilled. His face lit up as he looked at the cards... Grandma and his aunts, uncles and cousins. What a special treat! We tied the balloons to his bed, and he is able to admire them even when he lays down.

I am grateful for today. Although Jeff's allergies are bothering him, he seemed to be better. I am
grateful that today Hank wanted to be outside. That he either didn't notice people looking at him or he just doesn't care what people think.

I have always thought Hank was cute. But now I see him in a new light. I am amazed by how courageous and fearless he is. As I watched him endure the glances and the whispers as he walked by, I saw Hank not as the cute mild-mannered little child I always thought him to be, but rather the beautiful boy with the heart of a lion, that he has become.