Monday, July 19, 2010

Night Before Surgery: Round 3

It's the night before Hank's surgery and everyone is asleep. I thought I would sit down and quickly give an update. But as I reflect on the day, the knowledge of what lies ahead for us in the morning is overwhelming. As usual, I go into these surgeries very level-headed and positive. But if given a moment to dwell on heart is heavy for Hank and all that he has endured and will endure tomorrow and as he recovers. He is so sweet and fearless...and how I wish he did not have to go into another operating room. This surgery is a little more involved than I had thought...and I know the end result will be great...but the anxiety and apprehension I feel...well, I am just glad they are asleep and can't see it. Tomorrow I will be stoic and brave...just like Hank. But tonight, I don't feel that way.

We have now been on the east coast for one week. We've done a lot in this week. We've traveled by air, train and auto...we've seen some amazing sights, traveled 5 states and we've visited a slew of relatives!

Our time in Delaware with Jeff's Grandma Dot went by much too fast. But we had a nice visit with her and got to see a lot of the family. On Saturday morning her Pastor, Johnny Woods, came over to pray over Hank. Pastor Woods is a big man and when he laid his hands on either side of Hank's head, we couldn't see Hank anymore! He started praying and it was truly beautiful. As he prayed for healing, I found myself crying...Grandma Dot was too! I don't know why...except that I was so grateful that this man would take time out of his busy life to come over and pray for a boy he doesn't even know. After he was done, he asked for a pen. The next thing I knew he was handing Hank his Bible. And not just any Bible but the actual Bible he uses to preach with. The one with passages underlined and highlighted. In it he had written an inscription to Hank, along with his phone numbers. He told Hank he wanted him to read it, and "You can call me anytime". What a gift! One Hank will always have.

That night, we got together with Jeff's uncle and his wife and his cousin and her family, as well as Grandma Dot. We had a good time and a lot of laughs. They are a lively bunch! It was fun for our kids to meet their 3rd cousins. Wish we had more time with them...just as they all warmed up to each other, it was time to go!

The next morning was Sunday...departure day. We had a nice breakfast out with Grandma Dot and then found a church for Mass. We had a little trouble finding the right entrance doors, as every door we tried was locked. Made us think the churches are really harsh in Delaware...they lock the doors if you are late! But we finally found the right doors and made it inside. After mass, we asked the priest to give Hank a blessing, as he's having surgery in a few days. The priest said of course, and said he would give him the "anointing of the sick" sacrament. And so Fr. Mac anointed Hank...taking down his name and church. i gave him one of our Helping Hands cards and he promised to pray for Hank, especially on Tuesday.

We finally packed up and hit the road. It was an eventful trip, passing through the rest of Delaware and across New Jersey. Love how the highway is tree-lined in New Jersey. Very beautiful, although it does make me think that New Jersey is hiding something!! We got to Manhattan, only to find that our mapquest map was completely worthless, telling us to turn on streets that would clearly send us the wrong way. So with a very tiny street map in hand, I navigated Jeff towards our hotel. Jeff handled that minivan like it was a New York City cab! At one point I found myself saying, Get out of our way, tourist! And then remembered that I am a tourist and we are driving around in a minivan with Tennessee plates!

We made it to the hotel, Jeff returned the minivan and then we got a bite to eat. It was business as usual, as one kid didn't like the food, the other two couldn't get enough, the air conditioning was so high that we were all freezing and then one of them knocked a whole glass of water into Jeff's lap. Good times...!

Today we slept in a little and then headed over to see Dr. Siebert, Hank's surgeon, for the pre-op appointment. As always, it is so good to see Dr. Siebert. He instantly relaxes us, just with his presence. He sat and looked at Hank for a minute. He reached out and pressed on Hank's cheek...asked him to smile..and continued to examine him. We talked about the area above Hank's lip and his eye. I asked if this was atrophy from PRS or did the fat from the last surgery get absorbed? He said he was sure that it was not atrophy, but rather, the edge of the flap he did in December. It is the way it is supposed to be but he would take a look at it. He explained the procedure and said it would be great! I know he's right...And I am eager to know for sure, if the progression of the disease has been stopped. I think Hank could use a surgical break after this. And I am looking for the peace of mind that all is alright.

We went out to lunch after that and then hit FAO Schwartz. The kids each picked out a little toy...Legos for the boys, a stuffed animal for Lucy...which kept them busy for the rest of the day!
I found out another PRS family was in town and their 1o year old daughter had surgery today. Since the mom and I have talked numerous times on the phone, I called her and told her we are here too! I grabbed Jeff and the kids and we hiked the ten blocks to their hotel and had a great visit. It was nice for Jeff to talk to another father.. We didn't get to meet the little girl...she was still out of it from the surgery. But we were excited to meet the parents and we left them of promises to stay in touch.

After that we headed down to Hank's favorite NYC eatery, Jr.'s. It's in the theater district and we all love it. The kids clowned around during dinner and amused the other diners. We have gone to Jr's each time we've been in NY. And each surgical visit, we have been waited on by the same waiter! Of course he wouldn't remember, he must wait on hundreds of people a night. We had such a good time with him, finding him so funny as he teased Jeff about me being the boss... We told him why we are in New York and Hank now has a new friend!

We ended the night at Times Square. The kids love all the bright lights and you can't go to NYC and not see Times Square! But it was late...even Toys R Us was closed, and we were tired, so we grabbed a taxi and headed back to the hotel. The kids were up late and getting them up in the morning should be a real treat. But we have to be at the hospital at 6:00 am...with surgery scheduled for 7:30am. We will wait until the last possible second to wake Hank up. He can't eat or drink, so the later the better. Looking at the clock...looks like I will get a little over two hours sleep. Doesn't matter, I don't think I can sleep anyway...the anticipation it just too great. I know he's in good hands....I just don't like the waiting. Praying this is the last surgery for a long time...that Hank can get back to a normal life for awhile. Just being a kid and doing the things he likes..and continuing to raise awareness for Parry Romberg Syndrome...but as a survivor... not a sufferer.

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