Sunday, December 6, 2009

Road Trip!!

It's Sunday, late morning and I am in the playroom watching Lucy play pretend and Hank and Charlie play video games. Just a normal weekend in the Gibbs' household. Except it's anything, but "normal". This isn't our playroom...and those aren't our video games...and this isn't the Gibbs' household!

We are in Connecticut, where we have spent the last two days with our friends, Patty and Larry Richard and their sons, Sean and Kyle. Getting out of the city, was just what Hank needed to recuperate. He has forgotten about his surgery and is enjoying being a kid, surrounded by people who completely understand all he has endured. The Richard family has spent many years dealing with the effects of Parry Romberg Syndrome. Their son, Kyle, has had the same surgeries as Hank. It is such a great gift to be able to spend time with people who truly understand what we are going through!

Hank's revision surgery was such a different experience than his 8 hour free-flap surgery in July. I expected a tough recovery, but so far it has been relatively easy. Hank is one resilient kid! Thursday was the day after surgery and also the day that Hank's surgeon, Dr. Siebert, was heading out of town. I was a little concerned about nursing Hank back to health all on our own with out a follow-up appointment until Tuesday. How would I know if he was looking as he should?

I called Dr. Siebert's office and asked if we could get in to see him before he leaves. "He's leaving the office at 11:45 am," Dee, his receptionist told me. I looked at the clock...11:03 and we are in pajamas...."OK, I said...we will be right there." Hank and I quickly got dressed, threw on our coats and ran outside to catch a cab. Fifteen minutes later we were sitting in the exam room with Dr. Siebert. "Hey big guy!" he said to Hank, as they gave each other a high-five. "How are you feeling?" "Good!" Hank replied. "You look great!" Dr. Siebert announced. He said that the swelling might get a little more pronounced, but that was normal and his eye might even swell shut. But not to worry...and to keep the incision over his eye lubricated with polysporin. "He's going to look fantastic!" he assured us.

Hank looked at Dr. Siebert and asked, "When can I go see Kyle?" I smiled to myself as I watched the doctor deflate just a little bit. He had told me the day before that Hank could not go to Connecticut to see Kyle because he was too active when there. I promised that we were just going to lay around, play Legos and watch movies. "Well, if that's the case, you can go on Saturday," he said with a grin. "ALL RIGHT!" Hank replied. I was so relieved. I knew that Hank wanted to see Kyle and his family, more than anything. And Lucy had been asking us "when can I meet Larry?" (although I don't know if she realized Larry is the dad...) Let's face it, our entire family would be very disappointed if we didn't get to see the Richard's!

We gave Dr. Siebert hugs, said goodbye to his staff, Nilsa and Dee, and went out and caught a cab. "You know, I am feeling pretty good," Hank confided, "Let's go to the Museum of Natural History today!" I thought about it for a split-second, and then remembered that Hank had surgery YESTERDAY, and no way would we be going anywhere! When we got back to the apartment, Hank laid down on the couch, "I'm tired," he said. And I knew that laying low was exactly what he needed.

I filled Jeff in on what Dr. Siebert said and called Patty Richard to let her know. I got a text message from her later that said, "My family wants to see your family...we're coming to get you tomorrow!" OK, so it was a day earlier than the doctor said, but as Patty and I discussed....they were coming in the evening...and really...what's the difference between sitting on a couch and resting and sitting in a car and resting? Same thing, right? Well, at least that was the logic we used to make our plans!

We didn't say anything to the kids about our upcoming trip and just concentrated on keeping Hank quiet and resting. We played cards, watched TV, the kids played on their hand-held video games. And Jeff and I were right there with them. I did make quite a few trip up to the laundry done...lots of washers and dryers made quick work of it!

In my effort to keep Christmas alive and well for the kids while we are traveling, I brought along some snowman appliques for the kids to decorate the apartment with. Three snowmen, three kids...great idea...or not! The snowmen weren't the same was a was really small...and so the whining began! UGH! So much for a fun family project! But after they realized that they could dress and re-dress the snowmen, everyone settled down and had a fun time!

Friday morning we got up and Jeff and I picked up the apartment and got our things together for the trip to Connecticut. The kids played together and didn't seem to even notice that we were packing! We stayed in until afternoon and the piled ourselves into a taxi made for four passengers...and headed up to 5th avenue where all the stores are. We didn't tell them where they were going, so the whole ride, Hank kept asking, "Where are we going, again?" We made them guess and I can't believe none of them got it right. What they didn't know, was that we were heading to "Build-a-Bear," a store where the kids can pick out a stuffed animal and actually stuff it themselves, dress it, and adopt it. Kind of silly, but they really love it! And the store in NYC is huge!

The kids had such a great time and we didn't even mind that it was crowded and the lines were long. Hank picked out a frog, which he named, "Warty" and dressed as Luke Skywalker from Star Wars. Charlie's choice was a wolf, which he dressed as Darth Vader, also from Star Wars and named it "Wolf Vader". (so clever) And Lucy decided on a cinnamon colored bunny which she dressed as a fairy, but put cheetah-print Maryjane shoes on, and is now called "Beautiful". I think it is so fun to see their different personalities and creativity shine through on things like this. They each have their own mind and pick what they want!
It was dark by the time we left Build-a-Bear, and headed out. Patty had sent me a text message that they were on their way, so I thought we had a couple of hours to kill. I had the bright idea to go look at the windows at Macy's and herded the family in that direction. But I must have had a brain hiccup...we were on 46th street and in my mind, it was just two blocks down and two blocks over...but it wasn't on 44th was on 34th Street! So the hike had been in vain! With the energy flagging and the stomachs rumbling, we stopped into a McDonald's to get the kids a quick snack. We ended up on the third floor of the restaurant, where the kids happily dug into their not-so-nutritious meal. I received a text message from Patty that said they were getting close. "EEK! I thought...we are not going to be there when they arrive!" I showed the text to Jeff and we started hustling the kids out. Done or not...we had to go!

We headed out the door and down the street, where Radio City Music Hall stood out against the night sky. The streets were crowded with people and traffic was congested, so we headed for a side street to catch a cab. We found ourselves among even more people and smack in the middle of Rockefeller Center and the gigantic and beautiful Christmas tree! It felt like everyone in NYC picked the exact same moment to view the tree and it was a little daunting to make sure we had all three kids in sight. But we stayed for a minute and took some pictures. It is truly a remarkable sight and I am excited that we got to see it.

We pushed through the crowd and made out way out onto a busy street. We quickly hailed a cab and made our way down to the apartment. Patty and Larry had arrived at the apartment and were waiting for us. I was very eager to see them and did not want them to have to wait for us. The kids still did not know that they were picking us up, and I couldn't wait to see Hank's reaction. The cab ride took longer than expected and with five people crammed into a small cab with bulky jackets, my purse and three big "Build-a-Bear" boxes, it was less than comfortable.

We pulled up to the apartment and I saw a vehicle in the loading zone with a police parking enforcement vehicle parked alongside. Uh-oh...this can't be good. I could only imagine how stressed Larry would be feeling. We piled out of the cab just as Patty came out of the SUV. I smiled at Patty and watched Hank to see his reaction. I saw him catch Patty out of the corner of his eye. He looked at me. He did a double take and looked at Patty. He looked at me. "Hank, who is that?" I asked. "Is that Patty?!" he asked. He looked again and then yelled, "It IS Patty! and Larry too!" He was so confused...what were they doing there? "Hank, they are picking us up to go to their house!" I told him. "Tonight? Right now?" he said as he turned and gave Patty a huge hug. Hugs all around and then we were racing into the apartment to grab our bags. They had told the police officer that they were picking up a patient, and were given the OK to stay where they were. We moved as quickly as possible, and before I knew it, we were loaded in and ready to go.
Hank and Charlie were in the third row of seat, with jackets, blankets and stuffed animals between them. They couldn't see each other, and I am pretty sure that Charlie couldn't see out the window. Lucy sat sandwiched between Patty and I in the second row, and Jeff rode shotgun, with Larry at the wheel. Larry maneuvered us out of the city and we were on our way. The boys fell asleep in the back and Lucy kept Patty and I entertained with her "i-pod" toy for her new bunny animal.

We stopped for dinner, and had a fun time as the kids and Jeff got acquainted with Larry and Patty. Lucy usually takes a little while to warm up to people, but she quickly felt comfortable with those two. Charlie sat next to Larry and I could see they were already fast friends. I sat there feeling so happy and grateful that Jeff, Charlie and Lucy were getting the chance to meet the Richard's. And I couldn't believe we were with them! What a wonderful treat!

After dinner, we got back on the road, and a half hour later, we were driving up their driveway, and being greeted by "Mocha" their friendly chocolate lab. Hank was out of the car in a flash. Hugging Mocha and heading for the house. He was greeted by 14-year old Sean and 20-year old Kyle...the Richard offspring. Hank loves them so much and has a special bond with them. Their friendship and support aided his recovery after his last surgery and Hank will never forget it. He considers them his friends and big brothers and with Kyle experiencing the same condition...Hank looks up to him, and the bond extends beyond what I, or anyone else, could understand.

The Richard's had gifts for each of our children, with the boys receiving "Hess" cars and Lucy getting a little dog in a purse that you can decorate. They were so thrilled. But I feel so bad, as I did not plan to arrive here empty-handed. In fact, I ordered something for them to send to them prior to their arrival, but it did not arrive at our house until we arrived in New York. It is now sitting at my sister's house, waiting for our return. Oh will arrive to them at Christmas! Good intentions.... (Jeff did make up for it the next day with a bottle of Grey Goose Vodka for Larry)

We finally got everyone settled down for bed, with all three Gibbs' kids in the playroom. Patty, Kyle, Jeff and I stayed up late talking, and then headed off to bed. We had such a great night's sleep and everyone woke up happy. Saturday, we just laid low, with Lucy and Jeff decorating her new puppy purse, and the boys playing with their new cars, video games, and anything else they could get their hands on!

Larry and Patty arranged for Sean and Kyle and Kyle's girlfriend Liz, to watch our kids, so that we could go out and have a nice adult dinner. What a treat! Liz's parents, Rob and Anna, came too, and we had such a nice time. Although I found myself on the verge of tears as we sat at the table...worried about Hank. Just three days out of surgery...the power had been flickering, as the first snow was falling, and I had caught Hank messing with the fireplace not once, but twice before we left. Jeff and I were hard on him and he cried, which made me feel terrible! So Patty called the house and checked on them. They had just settled down together to watch a movie, and all was well. And I released the breath I was holding and was able to truly have a great time! Lots of laughter and funny stories!

We returned to find that the little kids had outlasted the older kids! Everyone was happy and had a great time. We got the kids and ourselves to bed, in preparation of an early rising time, to make it to church.

And that brings us to today. Got everyone up and out the door for 9:00 am Mass. It was cold, with snow on the ground, but the church was crowded and warm. We had to take two vehicles and Hank happily rode in the truck with Larry and Sean. In fact, I didn't even know he had left! We came next and were able to all sit in the same pew.

As I sat there, looking around family and the Richard family, together in prayer. I felt my heart swell with gratitude....that we had been brought together with this family...that if not for Hank and Kyle having Parry Romberg Syndrome...we would never have met. Gratitude that Hank's surgery went well and he was getting a chance to recuperate with this family who understands him. Who understand what Jeff and I have been through. And a sibling in Sean, who understands how Lucy and Charlie feel. What an amazing gift we have been given!

As luck would have it, they were selling donuts after church, which is exactly what the kids wanted for breakfast! We purchased a box and headed back to the Richard's home. Donuts consumed, the kids headed upstairs for playtime in the playroom. Which brings us back to when I started this! Hank's follow up appointment is Tuesday morning, when he will get out the stitches above his eye and the plastic off his face.

Another day of recovery ahead of on TV, games with the kids...just a nice easy day, with beautiful scenery around us...a warm fire...and fun friends! Just what the doctor ordered!

Wednesday, December 2, 2009

Revision Surgery Day!

Today started bright and early. Jeff was up at 6:00 and I was up at 6:30am...brutal since I went to bed at about 3am and found I just couldn't sleep. Too much adrenaline the night before surgery...
We got the kids up shortly before we had to leave to head to the hospital. Hank couldn't eat or drink anything and we wanted to make it as easy as possible for him. We got everyone dressed and headed out the door to catch a cab, which isn't easy when you have 5 people and must wait for a van-sized taxi! This time, the surgery was at Lennox Hospital, which is out-patient only.

It's also called "The Manhattan Ear, Nose and Throat Hospital" and was established in 1858...a beautiful brick building on the upper East Side. It was a really nice place for Hank to have surgery.

We checked in and planted ourselves in the waiting room. Kids, jackets, Ugly Dolls, books...we were set to wait awhile! They finally called Hank's name and would only allow me to accompany him until he was shown into a surgical prep room.

We were taken into a small room by nurse Margie, where Hank could change his clothes. They actually had a kid-sized gown and kid size lounge pants for him. Very nice, since last time he was swimming in his gown. I bagged up Hank's clothes and jacket and stowed them in the locker assigned to us. However, I failed to actually look at the locker number and for the rest of the day when they asked me what locker we had, I would just stare at them blankly.

We were then walked around the corner and Hank sat down in a sheet covered recliner and given a warm blanket to drape over him. The admitting nurse, Adele, introduced herself and proceeded to ask a lot of health questions. She took all of Hank's vitals and asked him if he knew why he was there. She verified Hank's identity and asked him to spell his name. Hank's legal name is "Henry" and that is what was written on all her documentation. "H-E-N-E-R-Y," he told her. Hmm ...she looked at me, "Is that right? E-R-Y?" "No, no," I replied, "he just never goes by that name and is not sure how to spell it." We told her he goes by Hank and for the rest of the day, he was called Hank, thanks to the yellow post it note on his folder that said, "Call me Hank!"

After Adele finished with us, she told me that she would wait with Hank, while I went out and got Jeff and the little ones. I found them in the lobby, Jeff sitting with two sleeping children. I stayed in the lobby while Jeff went in to see Hank. This would be the only chance for Jeff, Lucy and Charlie to see Hank before he went upstairs for surgery, as they don't allow children up there. I felt so bad for the little ones, that they would miss their chance to hug Hank and he wouldn't have a chance to see them. And I was wondering if I should wake them up, when they both opened their eyes and sat up! I grabbed them and quickly walked them back to see Hank.

They were all happy to see each other and I could see the wheels spinning in their little heads, wondering why Hank was wearing pajamas and was in a bed. The nurse brought us an extra chair and we crowded into the little room. All three of them had their new "Ugly Dolls" and Hank entertained them with the dolls, putting on a little show and making them laugh. It struck me, that here is Hank in need of attention, and he is putting his siblings first. I made a mental note to remember that...and to recognize what a good brother he is...proud moment...!

After about 20 minutes, two nurses came in and said it was time to take Hank up to the surgical floor. They had given me a blue surgical suit (also known as the "Bunny Suit") to put on over my clothes and stood there while I put it on...I would like to say I did it smoothly and with grace...but not the case, as I tried to balance on one foot while strategically placing my boot-clad foot through the jumpsuit pant leg. Charlie and Lucy and Jeff all said their goodbyes, and I promised Jeff I would text him to keep him in the loop. They took us upstairs to the second floor to the surgical waiting area. We had a very nice and attentive male nurse. He set Hank up in a recliner and then brought over a portable DVD player with a movie, for him to watch.

As Hank and I sat there watching "Curious George" on the player, a man wearing scrubs came up and said hello. He introduced himself as the anesthesiologist. He started talking to Hank, asking him what kind of surgery he was having. He asked Hank if he remembered anything from his previous surgery. Hank told him that he remembers being wheeled into the operating room and the mask over his face, as well as the ceiling. I was blown away! I didn't think he remembered anything! After the dose of "loopy juice" that made his eyes glaze over and compelled him to say, "Let's get this party started!" while throwing up a rock star fist, I didn't think he even knew where he was!

The anesthesiologist was a very personable man, and did not talk down to Hank, which is always appreciated. He asked Hank if he had any questions or concerns. Hank told him that when he woke up last time, he had goop in his eyes and it was hard to see. He really didn't like that and wanted to know if they were going to do that again. The doctor explained that usually they tape the eyes shut, but where they were operating was close to the eyes and the tape would be in the way. He explained that when you are asleep during surgery, your eyes don't blink and they dry out. The "goop" is to keep the eyes moist. And for the first time in all of this, I saw Hank's eyes fill with tears. He struggled to gain control, blinking the tears back and willing them to stay in his eyes...but when the doctor said, "yes, I will probably have to use that goop again," the tears started to escape from his eyes. Hank quickly wiped the tears before anyone could see them and again I watched him struggle to stop his emotions. And he did it! I knew that was hard for him...he HATED that goopy stuff. It was greasy, and it made his vision bleary, making him think there was something wrong with his eyes...that is scary! But he accepted that it was the only way, and let it go...

I then learned that our anesthesiologist, Dr. Gingrich, had surgery when he was two. From that moment on, he knew he would be a doctor. And a few subsequent surgeries when he was older. Because of his experience, he believes in treating each child differently, assessing their comfort level and level of understanding, before he talks with them. I loved his approach!

Dr. Siebert soon arrived and I'm not sure, but I think I heard a fanfare of trumpets upon his arrival...or maybe I just imagined it... He came right over, big smile on his face and said hello. He made a few notes, signed Hank's left temple and took a long look at Hank's face. "OK," he said, "I'll see you soon!" And he went off to make notes and prepare.

And with that, they got Hank up, and we walked down the hall to the operating room. Dr. Gingrich was with us and Hank looked around as the doctor sat down and started showing Hank all the machines. He got Hank up on the table and asked him if he would like to fall asleep sitting up or lying down. Hank said he would lay down, and the doctor explained the process, and how all the machines worked. I could see that the surgical nurse was getting impatient as her eyes rolled back in her head, but I greatly appreciated all the time he was taking with Hank to make sure he was comfortable and ready. Hank finally laid down and held the mask as the doctor started a low stream of anesthesia. Hank's eyes started to grow heavy as the doctor talked to him and stroked his brow. I leaned over and gave Hank a kiss and told him all would be well. And just like that, he was out.

The nurse shuttled me out when Hank started to react to going under. He started to flail around a bit and I tried to tell her that I had seen this before and I expected it, but she got me out of there quick! Tears welled up in my eyes...Hank looked so small on that table. I knew what to expect...we've done this before...but something about seeing that little skinny kid on an operating table just really chokes me up. As we went out the door, we almost ran into Dr. Siebert. He took one look at me and gave me a big bear hug saying, "He's going to be fine. We will take great care of him!" I told him I knew that...and thank you. He told the nurse to have me go to the recovery waiting room on the operating rooms floor, so I would be there when Hank came into recovery and Dr. Siebert could find me.

The nurse led me through the recovery area, to a small waiting room with a TV. I told her that I needed to go downstairs and get Jeff and the kids. She said OK, and walked me to the elevator, so I would know the way next time. I went downstairs and found Jeff, Charlie and Lucy in the lobby. I filled Jeff in and he said he would take the kids to Central Park to burn off some energy. One of us had to stay, so I grabbed a cup of coffee and headed back upstairs. But first I text messaged almost everyone in my cell phone to tell them that Hank had gone into surgery. It was 10:30 am...a half hour behind schedule. They had told me three hours, so I figured on 1:30pm.

I spent the next few hours texting with concerned friends and family members, trying to keep everyone involved. Jerri Wood, Hank's teacher, texted me and asked if she could have the kids in chapel pray. I said of course, and I was so pleased to know that while Hank was in surgery, all of the third, fourth and fifth grade students were praying for him, along with their teachers. I got out my Rosary, and prayed myself.

Shortly thereafter, and a half hour early...Dr. Siebert came bounding into the room with a broad grin, saying, "Hi! Want to see him? Come on!" I jumped up told him I needed to put my "worry beads" away. "Were you worried?" he asked. "No, I just like to pray," I replied. And in truth I wasn't worried...have never been while Hank is in surgery. I know he is in great hands! But I am praying for a miracle...and when you know that at least 500 people are praying for your pray too!!

We walked into the recovery room, and there was the Dr. Gingrich and Hank, who was sleeping peacefully. Dr. Siebert told me everything went great. That he injected steroids into the scar on Hank's back to try and lessen how raised it is. That he took fat from Hank and inserted into his upper lip, he did a lower eyelid raise and moved tissue around the middle of his face, giving him a mid-face lift. He also pointed out that there was plastic wrap on Hank's face, to act as compression. "How long does that have to stay on?" I asked, "Until we take out the stitches next week," was the reply. I know Hank...that plastic wrap is going to drive him crazy!! Poor kid!

Both doctors told me they were very pleased with the surgery. Hank looked so good... I looked at him, picturing what he will look like when he is healed. Dr. Gingrich suggested we just let Hank wake up on his own, so I sat down on the chair and started text messaging everyone. I wrote to Jeff and let him know that Hank was out of surgery. Jeff said he was making his way back with the kids and would see us soon. Hank slept for another half hour or so, and then all of a sudden opened his eyes. He looked dazed and somewhat confused. He blinked and looked at me. I realized it before he did, but there was no goop in his eyes!
Hank was upset. He wanted to go home. Waking up from surgery is no fun, and this is where Hank has a hard time. He said his face hurt really bad and I asked the nurse for pain medicine. She said none was prescribed but she would work on it. Meanwhile, Hank started to come out of the grogginess, and he wasn't quite as upset. The nurse came over with the meds, only to have Hank say, "I am fine. Never mind, I don't need it!" I think that the plastic wrap is what made him think his face felt weird and he wasn't used to it.

By the time Jeff and the kids showed up, Hank was sitting up in bed and had a crazy-looking ice pack tied around his head to reduce swelling. Lucy and Charlie stared at him, wondering what that thing was! A nurse came up and said they couldn't be up there, and we said "OK, we just wanted them to see each other really quick, since Hank was asking for them." The next thing we know, the nurse is pulling the curtain all the way around us and says, "It's OK..they can stay." We were so grateful. The kids needed to be a part of what was going on.

Dr. Gingrich stopped by to see Hank. "Did your eyes feel better this time?" he asked. He explained that he flushed them out after surgery. He seemed so pleased that he had thought of that. And Hank was grateful that he had! Dr. Gingrich had a surprise for Hank. Since Hank was so interested in everything, and loves science...the doctor bagged up the tubing from the respirator, the mask and the heart monitor patches for Hank to take home.

But being four and five, Lucy and Charlie got bored and it was time to get them out of there. Jeff went back to the lobby and I accompanied Hank down to the final room before discharge. They let the whole family back in and the nurse brought Lucy and Charlie a soda along with Hank's drink. Finally, Hank got a chance to eat something. Poor skinny kid went 19 hours without food and almost that long without drinking anything.

After another 45 minutes, Hank was discharged from the hospital! Jeff helped Hank get dressed, as Lucy, Charlie and I waited in the lobby. It was so surreal to see Hank come walking out in street clothes, with his jacket on, ready to go. And it was so exciting!

We headed out to the street and tried to find a cab. We ended up having to walk one block down and two blocks over to get on a major thoroughfare. I walked arm-in-arm with Hank as he shuffled down the street. "No death marches, Mom" he remarked. Guess he remembers the last trip.... We finally hailed a cab that we could all fit in and climbed in. Hank and Charlie immediately fell asleep, and Lucy was close.

As we drove back to the apartment, I marveled at how different this experience was. No drains in his overnight stay at the hospital...truly different. But at the same time, I started to feel the apprehension of taking care of someone who has just had surgery!

We got back to the apartment and woke the kids up. Hank immediately took of his coat, sat on the floor and started looking at all the respirator tubing that Dr. Gingrich had given him. We finally got everyone to lie down by putting on a movie. Hank said he was hungry and wanted pizza. And that is what we had! Less than seven hours after surgery, that kid was scarfing down pizza and drinking root beer! Amazing!

We have been watching Hank closely and we have been icing his face regularly. But I see the black eye appearing around his left eye and the bruising on his cheek. But I also see a beautiful upper lip, where there was none. And I see two eyes that are now even. And a sculpted and defined jawline. I see the face that was whole, before Parry Romberg Syndrome started to take all that away.... But more than all that...I see a boy who is growing up before my eyes. Who exhibits more maturity than many adults. Who inspires people to bravery. Who shows great compassion to others.

I see a boy who inspires me to be a better person. To act when I am compelled to do something. Hank remains stoic and brave. Courageous and strong. Don't get me wrong...he is still the same kid...the kid who was crying a little while ago because his eye is swelling and hurts and the plastic wrap on his face itches... But any of us would feel the same way. Hank has shown me the big picture. He has shown me what is important in life. I am honored to be Hank's mother. And I thank God everyday for giving me this love and to learn from.

Tuesday, December 1, 2009

Back to New York We Go...

Can't believe we are here! Back in New York City, and again, it is the night before Hank's surgery. And although we are here for the same reasons, so much is different this time. We've made it through the "big" surgery, and are back for the revision. And this time we are here as a family!
The flights from California to New York were pretty uneventful. We were fortunate enough to have kind ticket agents who worked hard to make sure we were all sitting together. Jeff sat with Charlie and Hank, who happily played their Nintendo DS games, and I sat with Lucy, who required quite a bit more attention...and all went pretty smooth...until Lucy dumped a cup of Sprite on my lap...leaving me soaking wet and not wanting to stand up for any reason! Luckily, that happened two hours into the flight, so by the time we landed at JFK, I was dry

At JFK, there was a serious lack of taxis to take us to Manhatten, but it gave the kids a chance to jump around a bit after traveling for 12 hours. We were all so excited to get in the taxi and thaw out and to share the sights with the little ones who would be seeeing it for the first time. And as Jeff and I pointed things out, we noticed that it started to get very quite in the backseat... All three kids had passed out and were sound asleep! Oh sure, they couldn't do that on the plane...

We arrived at the apartment and sat in the lobby as the security guards tried to figure out why they didn't know anything about our arrival. The apartment building is right across the street from the hospital and mostly doctors, nurses and med students live here. But Forward Face keeps an apartment for people like us...and for some reason this was all news to the security personnel. So there we sat...two adults, three children...all in overcoats, hats, and various other winter accessories...with four suitcases, 4 backpacks and one overnight bag. We looked like immigrants passing through Ellis Island! And then the best part...Lucy dancing around saying,"I need to poop!" Ah...good times!

I finally asked the guard where he lived and if he could cook? Because we had to stay somewhere... everyone was so nice and just doing their jobs, but we were so relieved when they cleared everything and escorted us to the apartment!!

We went out to Times Square and had a late dinner. What a great way to introduce Charlie and Lucy to New York City....Times Square..with it's bright lights and hustle and bustle. They were thrilled and Hank was so excited to show them the sights! But it was cold, and we were tired, so we didn't stay long.

We got back to the apartment and pulled out the beds in preparation of sleep. Hank has the day bed and the little ones are sharing the trundle. Jeff and I have the pull-out couch...and when everything is open, you can no longer walk across the room, but rather you crawl across beds to get to the other side. Right now, everyone is in bed sleeping. And I can see that Charlie's foot is on Jeff's...and they are in different beds! Luckily we are a tight-knit group and all really like each other! We'll see if Hank feels that way after surgery....

After a much needed night's sleep, the whole family woke up after 12:00 pm today! Of course we are still on California time... So didn't get to do much, but did have a nutrious brunch of "Dunkin' Donuts" and coffee! We finished up and headed for Dr. Siebert's office for Hank's pre-surgery consultation.
Going to see Dr. Siebert is like going to visit and old and dear, favorite friend. Our whole family was excited! Lucy and Charlie were finally going to put a face to the name and meet this mysterious person who the rest of us speak of so fondly. We walked in the door and Dee at the front desk, and Nilsa, who Dr. Siebert calls "The Boss", both greeted us warmly, with big smiles. The first thing they said was, "Hank! Look how tall you are!" And Hank smiled broadly as he intoduced his younger brother and sister.

After hanging up our coats...yes, there is a nice coat closet where you can actually hang up your coat...we were shown into an examining room to wait for Dr. Siebert. We didn't wait long...he came bursting in, smile on his face, twinkle in his eye, and a hand out for shaking. He is just the greatest guy! He was genuinely happy to see Hank and gave Lucy and Charlie high-fives, telling them that he has seen their pictures and heard so much about them that he feels like he already knows them.

Dr. Siebert sat down and took a look at Hank. He told Hank that he looked good and was pleased by his progress. He then told us what he was going to do in tomorrow's surgery. He mentioned a mid-face lift, lower eyelid lift, and putting some fat in his upper lip. He noticed a suture scar above Hank's eye where he had an eye-lift last time and said he would take care of that. As he scrutinized Hank's face, he reminded me of an artist, reviewing his work and looking how he can improve it. We showed him Hank's scar on his back where the tissue was harvested last time...the scar is really thick and raised, so they will be injecting some steroids into it to bring it down.

We talked about the surgery time and place and then just about Parry Romberg Syndrome itself and how more and more people seem to be coming forward with it. We wondered if there are a lot of people out there who are misdiagnosed and just finding out what they have. Or that for some people it is just so mild, that it takes them a longer time to seek treatment. But I seem to hear from at least one person every two weeks who is just now reaching out for help. It's exciting to know that this blog is reaching the people we intended it for! And Dr. Siebert keeps up with it and also refers his Romberg's patients to it. Hank is happy that what he is going through is helping others.

We took leave of Dr. Siebert's office, with him telling me, "see you in the morning, get a good night's sleep." "You too!" I told him as we walked out. We left the building and headed around the corner to Central Park. Hank knew how to get there and led the way. We were too late to go into the zoo, but the man at the gate of the children's zoo let us go in, even though we didn't have tickets. The kids thought it was great and loved seeing the amimals.

Afterwards, Hank and his siblings climbed on the giant outcroppings of rocks and "rescued" each other from falling off the "treacherous mountains". They were able to run and laugh, get dirty and just have some good kid time!

We hit FAO Schwarz on the way out and bought each child an "Ugly Doll". Hank got one the day before surgery last time and he took it to the hospital with him. So now he has a new one to go with him, and Lucy and Charlie have new friends as well. While at the toy store, we split up and Jeff and the boys looked at boy toys and Lucy and I got to look at all things pink and girly. I loved it! Dolls and ballerina dresses and cute cuddly stuffed animals. Made me almost forget why we are here!

We finally pried the kids out of the store and went in search of dinner. The Upper East Side is not really conducive to children's restaurants, but we stumbled across a place called "Burger Heaven" and decided to try it. Kid-friendly and delicious. The kids had a good time and Hank had a big meal. (which is important since he couldn't eat for the rest of the night!)

So after a big day of fun...we headed back to the apartment to prepare for Hank's day of surgery tomorrow. The surgery is scheduled for 10:00 am eastern time. We are having the surgery in a surgery center instead of the big NYU hospital. And seeing as how this is flu season, I think we are grateful...

Hank has been in good spirits and is looking forward to getting through the surgery and recovery process. He spoke on the phone to Kyle tonight. (Kyle is the 20 year old in Connecticut, who had the same surgery as Hank when he was little) I overheard Hank tell Kyle, "I'm nervous about the surgery, but I am mostly just excited." And there it is. Again, Hank never ceases to amaze me! He can teach us so much. But I feel the same way...a little nervous, but mostly excited that this surgery can give him his face back...close to the way it was...and more importantly, gives him the chance to have a normal life.

Jeff and I have so much confidence in Hank's surgeon, Dr. Siebert. He is an amazing surgeon and a great man. I know Hank is in good hands, and although it is not easy, and we don't want our little one to go through all this...we know it is the right thing to do...the only thing to do...

Wednesday, November 25, 2009

One Week Away...

This is it! One week from today, Hank will be in surgery! Can't believe it's here! How quickly the last five months have passed. Weren't we just there? But I think the stress is getting to me...

Tears are flowing. After a year of holding it together, I no longer can. Why now? Hank has been his usual stoic self. When I ask him how he feels about surgery, he gives me a big smile and a thumbs up. “Good!” he says. And I think he truly is….but I can see he is a little worried or maybe just apprehensive. After we got back from New York last time, Hank stayed pretty close by my side. But as the days turned into weeks, he became his old independent self.

But here we are facing another surgery, and Hank is gravitating back to me. Wanting to snuggle up on the couch, laying in our bed at night to read to me. And last night he usurped the little ones and actually slept in our room.

A few nights ago, Hank was in his own bunk bed, reading a new library book. “Look at this Mom!” he said to me. I climbed up and stood on the ladder to his top bunk. Hank was reading an enclyclopedia-type book (he loves reference books!) and was pointing things out to me. I was standing on Hank’s right side…his PRS-free side…his “normal” side. And I looked at his face…his perfectly beautiful face. And I felt my breath taken away. Here is this sweet and beautiful young boy…born into this world with a beautiful and whole face. And he has this awful disease that destroys half the face! How can this be?

When Hank had finished reading to me, I excused myself and went downstairs. And for the first time in a very long time….I cried until I couldn’t cry anymore. Through all of this…I have never asked “why”….but now I am asking… Why Hank? Why Kyle? Why Patrick? Why any of these kids? What do they have in common? How is it even possible that a disease that can destroy your face even exist?

Five days until New York. I don’t want to go to New York for the third time in a year! I don’t want Hank to go under the knife again. I’m tired…and I wish we could just go back to our “normal” life. But we must finish what we started. And it is exciting that we have a fantastic doctor in Dr. Siebert, who can give Hank the chance at that normal life! And I know that in spite of everything…we are lucky. Hank is lucky….we have found a way for him to get help. And we have a great family and great friends who are helping us get there.
So I am grateful…but I think it’s important for others facing this to know…that it’s OK to get upset. Or to get depressed. Or to just have a really good cry! Because you can’t help but mourn the loss of the normalcy that you once had. Or to have your heart ache for your child. But then it’s important to pick yourself up, count your blessings and continue to move forward.

I’ve had my cry….and I have to be honest…I’m one breath away from another good cry…those tears just sit at the back of my eyes, waiting for their chance…but it’s time to start to prepare and to pack for our next big adventure.
New York City during the Christmas season. How cool is that? The tree at Rockefeller Center will be lit the night of Hank’s surgery. And when he feels like it, we will go see it. Lucy and Charlie are going too, and they are going to be amazed by the bright lights and big buildings.

The preparations are going well. We have our plane tickets, thanks to the generosity of our good friend, Steven James, who donated his frequent flier miles to get all 5 of us to and from New York! And since nothing ever goes 100% smooth…we will have to adjust our seating…since the plane is full, we have just two seats together and then we are spread out. I can’t imagine 4 year old Lucy sitting in the middle seat between two strangers…but of course I have a plan for that. “Here is your barf bag Honey”, I will say as I hand her a paper bag. I bet those people will be clawing the seats to trade with me! Always good to have a plan!

We have the “Forward Face” apartment booked for our time in New York. Sleeps four, so it will be a little tight, but the kids are small, so it should be OK. We’ve made contact with the Richard Family and have hopes of going to Connecticut again to visit with them. And of course we have the main event…the surgery, scheduled for Dec. 2nd! Not sure how things are going to work out with Lucy and Charlie in tow…but we will figure it out!

We got Hank’s 3rd grade school picture a couple of weeks ago. Wasn’t sure what to expect …and I am thrilled! Hank looks beautiful! What a difference a year makes! I think Hank is always beautiful….but I know how kids are…and it breaks my heart that when Hank looks in the mirror, he doesn’t see what we see…a mirror is 2 dimensional, so for someone with a facial anamoly, it is not kind. But now Hank can see what I see! That he looks GOOD! Sure, now he is asymmetrical to the other extreme…but that is what this next surgery is for. So, although I dread this next surgery…I feel renewed by the fact that as we thought…the surgery was the right decision.

Tomorrow is Thanksgiving. And this year, more than any other...we have so much to be thankful for! I think Hank said it best..."Mom, we had to write in class, what we are thankful for... Want to know what I wrote?" he asked. "Yes, please, " I replied. "I said I am thankful for my house, my yard and all our animals," he said proudly, "and for my family and for the Richard family," and with a huge smile he finished, "and for Dr. Siebert!" He gets it...Hank gets WHY we are putting him through all this. That is enough for me. As long as he knows... And so our journey continues….

Saturday, October 17, 2009

One Year Later

It's been one year. One year ago I received the call that would forever change our lives. The call that said, "I know what it is." Those were the words spoken to me by Hank's pediatrician. Time stood still and I will never forget exactly where I was standing, where the rest of the family was and what we were doing.

The family was in the car preparing to leave for Open House at Hank's school. I was just walking out when the phone rang...and I could see that it was the doctor's office. I remember feeling flushed and my heart feeling like it was going to beat right out of my chest. We had just been to the doctor that afternoon, after realizing that Hank's face was changing...that his cheek was wasting away. The doctor had been at a loss...and we were scheduled for a head X-ray the next day. I didn't expect a diagnosis at that moment. I had no idea why he would be calling...

And when he said, "Hank has Linear Morphea, I felt like the floor had just given way under my feet. It didn't sound like something sounded terrible. I typed it into my computer and the word, "Scleroderma" popped up. I know now that there are two kinds of Scleroderma..."Systemic" which affects internal organs and is life threatening and "Localized" which is in one location and affects skin, tissue, muscle and bone. But at the time, all I knew about was the systemic and I was scared to death.

I grabbed a pen and wrote frantically as the doctor talked about Parry Romberg Syndrome, the Cranial Facial specialists at UCSF...x-rays, cat-scans, MRI's, blood work... my head was spinning... and then our conversation was over...and I called my mom and quickly told her the news.... and then I joined my family in the car for what was supposed to be a fun evening at the school. I'm sorry to say that I don't remember a lot about that night at the school. But I do remember trying to keep it together and not let on to Hank that anything was wrong...and trying not to stare at him as the realization that he truly had facial atrophy and that we had to stop it.

That phone call triggered months of research for us. Trying to figure out a way to stop the disease.... Those were dark times...keeping it a secret from everyone but immediate family... dragging Hank to doctor after doctor...trying to act "normal" for the kids and the rest of the world...lonely times and desperate times... Times I would like to forget...but times that I need to remember. I can only appreciate where we are today, if I remember where we've been.

So here we are one year later... what a difference! We've been through so much and have gratefully risen from the depths of despair. Finding Dr. Siebert in New York was such a Godsend and gave us the hope we needed to make it through!
Today Hank is good. He is feeling good, and he is looking good. This year's Open House was so different! Calm and of the desperate feelings we had last year! I still have questions, and I wonder if the disease has been arrested...but we will find that out when we go back to New York in December for Hank's second surgery. In the meantime, we give thanks for getting this far and for having the ability to connect with others with this disease.

Last week, I received a message from a young man living in Tennessee. He is 20 years old and has been living with Parry Romberg Syndrome since he was 4 years old. He was misdiagnosed for 10 years before they figured it out. He told me he has had numerous surgeries and wasn't sure where to turn. From the sounds of things, his disease has progressed to the bones. I asked how he found me and he said that he had been thinking "Facebook - Parry Romberg" for about 2 weeks and had finally sat down and checked it out. He went to Facebook and typed in the words Parry Romberg Syndrome and found Hank's group, and found me.

When I signed up for Facebook, I knew it was a good networking tool and not only could I reconnect with old friends, but I could use it to spread awareness of PRS as well as notify people of Hank's progress as well as his fundraisers. But the one thing I have wished for through all this, is to help someone else find the right treatment for PRS. I am so excited that this young man found me. I have put him in touch with Kyle, our 20 year old friend on the east coast who also has PRS, and I hope these two can share their experiences and build each other up! What a great find someone your own age who has gone through what you have gone through.

This young man, Bryan, has also reached out to Hank. He told me, "Ma'am, I am 6'3" and weigh 210 lbs. I have served our country in the military....I go to college, I have a girlfriend and I am going to go to law school. You tell your son that he can be anything he wants to be. This disease will not limit him. He can play football if he wants!" It brings tears to my eyes to think that this guy, with his own PRS issues, wants to mentor our young son. Although we can't meet him this trip, we are hoping to meet up with him soon, especially since he might take a job on the Central Coast... Now that would be have him living near our hometown!

I see God's hand in all of this. I told Bryan that when you feel strongly compelled to do something, that is God showing you the way. There are no coincidences and when you really listen, the path becomes clear.
And Bryan isn't the only one we've heard from this month. I received a heartfelt email from a woman in North Carolina, who's 14 year old son has PRS. She is at a loss, as she thought his atrophy was due to numerous teeth being pulled years ago. Now she finds out her son has Parry Romberg's and needs information. I know how she feels...that was me a year ago! I called her and gave her Dr. Siebert's contact info and I hope they connect!

And another mother who has followed Hank's story took her adult daughter to Dr. Siebert. She had her big surgery just a week ago and is in the healing process now. Such exciting news! And of course there is Megan, who we met in San Luis Obispo last month. Still can't believe Hank had the chance to meet another person with PRS, and in our hometown too! Megan calls Hank her "hero"...he's mine too!

We have had more fundraisers this month for Hank. The Texas Hold'em Poker Tournament was fantastic! It was held at my sister and brother-in-law's winery, McConnell Estates, and we had a great turnout. My brother-in-law, Chuck, has a friend named Rodney, who put the whole thing together. We had some serious poker players there and a few of them didn't realize it was a fundraiser for a little boy. After someone would get knocked out of play, I would thank them for coming and let them know that their support for Hank is much appreciated. I had one guy say, "Where is that guy, Hank? I never even played with him all night!" Uh...yeah...that's because Hank is a kid and we don't let him stay up late playing cards... So funny! But no matter the reason they showed up, their being there helped us raise some good money towards Hank's next surgery!
The next day was a Saturday and there was a free concert at the winery. It was a Johnny Cash tribute band called, "Cash Tribute". The lead singer, Jim Garner, looks and sounds just like a young Johnny Cash. As a lifelong Johnny Cash fan, (yes, I was in the "Johnny Cash Fan Club" as a kid) I was really excited about this day. My sister Patty and her husband, Mike, let us set up a table and sell water and soda to benefit Hank. We didn't make much money, but we educated about 60 more people about Parry Romberg Syndrome. Every little bit helps and the more we get those words into the general public's stream of consciousness, the more it will become a known disease. And maybe we will catch the eye of a researcher who wants to find the cause!

Not only did we get to enjoy the sunshine, listen to great music, eat good food and raise money and awareness for Hank...but we got an added bonus. Four year old Lucy developed her first crush. Typical groupie...she is in love with the the singer of the band. Can't really blame her...he is very good looking and sings like Johnny Cash! After he was done singing and hanging out with his family...I looked over to see Lucy sucked up next to him. He gave her an autographed picture that she carries everywhere and she calls him "that guy I love." She even has gotten out her little princess piano and says she is going to take it to the next concert so she can play music too. It's too cute...but I am thinking it's too soon for this...but then I remember that Lucy's cousin was in love with Disney's "Pocahontas" when he was her age...

Six weeks until we return to New York. We are busy planning the next fundraiser and gathering as much information about the next surgery as we can. I have put out emails to those who have gone through the revision surgery, to find out all the details. Knowledge is power and we don't want to be unprepared! We are taking Lucy and Charlie with us this time. Seventeen days without us was much too hard on them. Besides, I don't think they will let us out of their sight! But I think having them with us will present new challenges...but we will focus on the positive and let things fall into place.

As I reflect on this one year "anniversary" I can see that our path has not been easy. And being the parent of a child with a rare illness is extremely difficult. Be we are blessed to be surrounded by our supportive family and great friends. Hank is a stronger person as a result of what he's endured. These Oct. 2008 and Oct. 2009 photos tell the story of how far Hank has come!

Jeff and I are stronger too, and we can see that anything is possible. But I realize that we have sort of lost ourselves during all of this, and we need to start the road back to taking care of ourselves and doing those things that we enjoy. So for us, this is our new year...and we have our "New Year's Resolutions"... exercise, take care of our health, have fun as a family, do those things that we enjoy, remain focused on getting Hank the help he needs, raise PRS awareness and help others find the path to treatment.... I think we can actually keep these resolutions...!

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...