Sunday, January 10, 2010

Stitches Out ~ Compression Tape Off!

Can’t believe it’s already January. We arrived home the night of Dec. 10th and it has been non-stop ever since with Christmas prep, Christmas, New Year’s and back to school. And as before, I find myself in need of some time to just decompress and let it all sink in. The build-up to Hank’s surgery was stressful and now I am on the other side...and for some reason it’s almost as hard. Hank is doing well...really well! Back in school and resuming life. Six months from now, we will again make the trek to NYC. But for now...we just move forward.

I actually wrote this next entry while on the way home from New York, but couldn't seem to find the quiet time I needed to post it, until now:

Tuesday, December 8, 2009:
We reluctantly left Connecticut on Tuesday morning, just in time to make it to Hank's doctor's appointment. Our time in Connecticut was too short and no one wanted to leave. As we sat at dinner Sunday night, we reminded the kids that it was our last night there. Hank's face crumpled, "Oh no, " he said, as he bowed his head and tried to fight back the tears. We sat like deer in the headlights, unsure of what to say. "We need to get back to New York to see Dr. Siebert's nurse," I told Hank. He quietly sat with his head down, and we all looked at each other. Someone started a new conversation, giving Hank the time he needed to process the fact that the visit was ending.

He quickly recovered and when asked why he didn't want to go back to New York he replied, "One...the apartment is too small! Two..the apartment is too small...and three...the Richard family is not there!" I knew it...it's hard to go back to a little NYC studio apartment after being in the beautiful Connecticut countryside, in a gorgeous house with lots of windows, surrounded by the warmth of this family that you love. I understood. I didn't want to leave either. I have a friend in Patty and I love spending time with her! And Jeff was enjoying Larry's company and getting to know everyone. Their whole family has become so important to us. It is a friendship forged through the heartache that only we can understand...having a child with this illness. But more than that...we have fun. We all have the same sense of humor and know how to see the good in spite of the bad.

The next day, we packed up our things to prepare for departure. But when it came right down to it, we really didn't want to leave yet. Patty had suggested we stay and just leave in the morning. But both Jeff and I were worried that we were overstaying our welcome. I chatted with my sister, Mary, online Sunday night and told her our dilemma. She commented that since Patty was the lady of the house and she extended the invitation to stay another day, we should just do it. I had to kind of agree with her. If I wanted my guests to leave, I would have been putting the train schedule out and circling the time of departure! (Come to think of it...I DID see a schedule on the counter...)

And so we stayed one more day. It was perfect. Poor Sean had to go to school. But the rest of us had a great day. Larry took Jeff out and they went for a drive. Kyle took Hank and Charlie to the fire station where Kyle is a volunteer fireman. And Patty, Lucy and I headed out for a little “girl time” and some window shopping. We all had such a great time and came together in the evening to talk about our days.

Pizza for dinner and a game of Monopoly with Hank, Jeff and Patty…made Hank’s stay complete! And with that, he accepted the fact that we would be leaving in the morning.

Rather than asking Patty and Larry drive us all the way back to NY, we used the car service that they normally use. A very nice man named, Phil, pulled up in a silver limousine. I was expecting a Town Car and couldn't have been more surprised! What a treat for all of us…now this beats the train!!!

We said our goodbye’s…hugs all around and promises to talk after Hank’s stitches came out…and we were on our way. Heading out of the picturesque and serene little town and heading for the steel grey of NYC skyscrapers.

We made it to the apartment around 11:00, giving us 45 minutes to feed the kids, catch a cab and be in Dr. Siebert’s office for the removal of Hank’s stitches and the plastic compression wrap on his face. Poor kid…his face looked like someone took some saran wrap and just wrapped his face like a leftover!

Jeff ran up and grabbed some donuts and muffins from the local “Dunkin’ Donuts” while I got everything ready for our excursion. The kids snorked their donuts and we were off. Crammed into an SUV taxi, which looks like it would be bigger than a Crowne Victoria…but it is not! Five people…again…crammed into a little taxi, stuck with the cab driver from hell. What should have been a quick and easy $8.00 trip turned into a 15 minute and $16.00 cab ride. ARGH! It was all we could do not to start freaking out in the backseat as we sat in traffic. I have been to Dr. Siebert’s office quite a few times and we have NEVER taken the streets this guy took. Frustrating! So we were late…and perturbed..but we finally made it!

Dr. Siebert’s staff, Dee and Nilsa were all smiles as we came through the door. Lisa, the nurse, came out to greet us. Jeff, Hank and I had met her after the last surgery, when she took out some stitches and cleaned Hank up a bit. Lisa is a gregarious blonde with a fun sense of humor and captivating manner. We felt so at ease with her and were so happy to see her again. Hank and Lisa joked around as she led us into the exam room and got things ready.


This was it. The stitches were coming out…over Hank’s left eye, where he had an eye lift last time…and in front of his ear. Hank wanted to try and pull the compression wrap off himself…and slowly started to peel it off. He got about halfway through and then it really started to hurt. Lisa tried to help him by holding his skin, and then put something liquid on it to make it easier…and finally the last of the plastic came off…but not before pulling out some hair! It hurt! I secretly feared that his entire face would spring out with a big “boooiiiinnnggg” as they pulled the plastic off. But no cartoon sounds…no giant face popping out…just Hank’s beautiful, symmetrical face! Whew!

The stitches came out easily with Hank only wincing once or twice. Lisa cleaned the ink off Hank’s face as he looked in the mirror checking the results. Lucy and Charlie were in and out, while all this was going on. Lucy stayed for most of it, but when Hank started to feel pain from the plastic, Charlie said, “I can’t look!” and hightailed it out of the room. These little ones can’t stand to see Hank hurting. Lucy, being the caretaker she is, went back and forth from exam room to waiting room, checking on both brothers.

And that was it. Done! The purpose of our trip to New York was complete. Hank could now walk the streets of NYC knowing that he looked like everyone else….well…everyone who had been in a street brawl, that is! But no matter what…it was 100% better than the last time and it was time to get out and let Hank be a kid!

With lots of hugs and goodbyes, we took our leave of Dr. Siebert’s Park Avenue office and headed to Central Park. Hank wanted to show Lucy and Charlie “The Museum of Natural History”. He loved it when we went in March and since the movie, “Night at the Museum,” all three kids knew about it.

We took a nice leisurely walk through the park. The day was clear, crisp and cool. It felt good to be among trees and grass, and wide open space. The sounds of Christmas were in the air…the saxophone player who played “Rudolph the Rednosed Reindeer” when Lucy dropped a dollar into his case… the man dressed in a top hat and cape, standing in the tunnel that leads to a huge fountain, singing Christmas carols in a beautiful tenor, made even more so by the amazing acoustics of the space…and another saxophone player playing “White Christmas” as we strolled the mall. I linked elbows with Jeff, “Isn’t this romantic?” I asked, noticing how handsome he looked in his black trench coat and charcoal grey scarf. “Yes, it sure is,” Jeff replied. “Let’s pretend the kids aren’t with us for a moment”…which lasted all of about 20 seconds. But it was enough to feel the romance of Central Park…as couples experience it.

We continued our trip through the park and as we emerged Hank called out, “There it is! There’s the museum!!” Lucy and Charlie happily bounced along, feeling the excitement of a new experience. We crossed the streets and walked up the stairs of the Museum of Natural History. With its Gothic facade and tall doorways, it’s an impressive building. As we came through the doors, the yells of excitement were replaced with the sounds of children in awe. “Wow! There’s the T-Rex!” they said in hushed tones. We admired the dinosaurs as Jeff purchased our tickets. We headed to coat check, dropped off our coats and took on the museum.


Three hours later, we found ourselves with tired feet and smarter brains. We each had a favorite thing to see…for Hank and Jeff it was the dinosaurs, for Charlie it was the Easter Island statue called “Dum Dum” in “Night at the Museum” and for Lucy is was the huge elephants on display. I liked the underwater rooms with all the different sea creatures and their relative sizes.

At 5:00, a voice came over the loudspeaker, announcing that the museum would be closing in 30 minutes. Absolute chaos ensued! The Gibbs kids freaked out! The movie “night at the Museum” is about a security guard in the museum at night and all the displays come alive. The kids were so worried that we would get locked in and have to experience the same thing…that Lucy was on the verge of crying. Even Hank was worried! And when I thought about it…it freaked me out too! I wouldn’t want to be anywhere near the 13 foot spider crab if were to come alive! Or any of the reptiles! So, we hustled through the museum, grabbed our coats and made it out the doors just in time! Whew!

We left the museum and headed down the street. It was 5:30 and the wrong time of day to hail a cab. And so we walked…and walked…and walked….We found our way to Times Square, had dinner at Bubba Gump’s and then made it over to Macy’s. I wanted to see the window displays that are reputed to be quite fantastic at Christmas. And we were not disappointed! We saw a sign at the door that there was a Christmas puppet show on the 8th floor. So eight floors of escalators later…we arrived to see a closed sign and a sign that read, “Santa will be back at 9am.” Darn! How fun would it be to see Santa at Macy’s in NYC? As we stood there looking at the sign, an“elf” popped out and waved us in. What? What’s this? And so with silly grins on our faces, we followed the red and green clad young man into a maze of velvet ropes leading to the distant lap of Santa Claus!

The kids were excited as we wound or way towards the big man. Bright colored lights, dancing dolls and bears, toy train sets and Christmas villages…all visions for us to enjoy along the way. And then finally….finally…it was our turn! “Party of five to see Santa Claus,” Cupcake the Elf announced. And we walked in, to see a perfect Santa Claus sitting in his chair just waiting to hear what these kids wanted for Christmas. Hank went first, bounding up to Santa and taking a seat on his lap. He quietly told Santa what he would like for Christmas. Santa didn’t need to ask Hank if he’d been a good boy…Santa already knows that!

And then Charlie had his turn, excitedly telling Santa about all the video games he wants. Good thing Santa speaks “Charlese”…when Charlie talks fast…it takes an expert to decipher! And then little Lucy bravely climbed up on Santa’s lap. She told Santa, in a voice barely above a whisper, she asked Santa for one toy…a Webkinz stuffed animal. Hmm…when they’re at home they are circling everything in the toy catalog…but in front of Santa, they clam up! That’s OK with me!

The kids gathered around Santa for a photo, with Lucy and Charlie each on a knee and Hank on a stool in front. After the picture, Santa Claus told the kids that he wanted to talk to them. In a very serious voice he told the children that he wanted them to each draw him a picture and leave it out for him on Christmas Eve. He said that “I bring the pictures home for Mrs. Claus to see.” He also reminded them that Santa and the reindeer get hungry and to leave out cookies and milk and carrots too. The kids promised and hugged Santa goodbye.

New York City at Christmas is magical and we had such a fun day! Seeing Hank without any remnants of his surgery…enjoying the sights of the city just like any other kid, as if he didn’t have a care in the world! Did he really have surgery just six days ago? Incredible! Hank’s strength never fails to amaze me! He's only eight, and yet sometimes I forget that...he seems so wise beyond his years. He’s been through so much, and my heart swells with emotion when I see him just continue on, with no complaints…just courage.

4 comments:

  1. Hank looks great! So glad to see him smiling so big.

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  2. Hi Hank you look great and I wanted you to know I had the same procedure 8 years ago also by Doctor Seibert. I am a mommy of 2 girls , nikki 12,and samantha who is the same age as you. I want you to know that I have read your blog and I am so proud of you. I have had Parry Romberg Syndrome for over 35 years. I was 11 when it developed. I know exactly what you are feeling and sometimes it is hard to talk about it. You have wonderful parents and friends who love you for who you are and if something is bothering you don't keep it a secret and talk about it. You are not alone and if you want to talk to me I am available anytime. I want to tell you one more thing. I am now 46 and never let this syndrome stop me from having a wonderful life and my own family. Thanks to Doctor Seibert who does a little work on me every few years , I love the way I look but more important I know from having Parry Romberg Syndrome true beauty comes from within. Hank I wish you and your family only the best.
    Cheryl Rick Klein. http/youarealwaysbeautiful@blogger,com.Cherylrickklein.

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  3. You may be only one person in the world, but you may also be the world to one person.............................................

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