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...

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