Bridges

In my last post I mentioned that we would be heading to Long Beach Island, NJ to spend some time relaxing in the sand before the chaos of school starts. We did that with the Philpott family. We got there Friday afternoon. We got left late as we were helping get some documentation to Anne at the National Cancer Institute for Russ. We found out earlier in the week that Russ was not to continue treatments at Johns Hopkins as he was not responding to treatments. There simply wasn't anything they could do for him any longer. Anne helped funnel Russ's papers to the right people, to see if there were any clinical studies going on outside JH and for Marla to get a second opinion. The conversation Marla had confirmed what JH said. Nothing more to do at this point. Russ's type of ALS is rare so there has not been further study in it yet. (another reason to run and raise money for LLS - as if I needed another) Russ was to continue transfusions as long as he was able and they gave him 2-6 months - I think. Regardless, the transfusions were 3 times a week and required a trip to JH each time. The news saddned us all and put a bit of a shadow on our weekend. Marla and Russ were to discuss things and figure out what the next steps were. We went on with the vacation.
The trip up was much nicer than last year with minimal traffic. Last year we spent what felt like 2 hours going the last 10 miles. We checked into the motel, which reminded us of the motels we would stay in when going to Rockaway Beach for Thanksgivings at Grandma & Grandpa Reeve's. It had a shower that was clean but by no means new and had rust spots everywhere. The beds were pretty worn out and so was the carpet. But, like I said it was clean, 2 blocks from the ocean and .75 miles to the Philpott house. After unloading the very stuffed van that was filled with clothes, toys, sandwich makings, snacks, towels, kids, Bloody Mary mixings, wine, beer and a body board, we made arrangements to meet Anne, Steve and the kids for dinner out. They were heading our way to pick us up in about 15-20 minutes so we figured we had enough time to hit the beach to see how the Atlantic was doing. The kids took off on a run with little Addison chasing after the other two but not really knowing why. Of course when we got there the kids asked if they could put thier feet in the water. Since we had a little time we said it would be OK just "don't go in and get all wet, we're heading to dinner soon" That lasted all of about 30 seconds. They all got soaked - including the ring leader - Steph. It was worth it though. A quick change and the Philpotts pulled up right on time and we were ready. A good sign for the weekend as it is a rarity for either family to be "on time". After dinner a walk along the dock by the restaurant with the kids brought about a lesson in crabbing a people were dropping crab traps all along the dock. Only a couple people had anything though. Not sure how lucrative the crabbing would be right along there but who knows. Then we headed over to the much ballyhoo'd Fantasy Island. No, it's a kid's carnival place - there was no Mr. Roark and it wasn't Vegas... A great thing there was that Cole had not gone on a roller coaster there at all but didn't want to be left behind by the other 3 so he went. He sat with Chloe who revealed her inner daredevil to him and dragged him to the front seat. I don't think he knew anything about the front being the "best" place but he handled it well and got off with a smile. Granted it wasn't anything real big as they went around the same track about 6 times that basically went up about 2 feet and circled down.
Saturday was sunny and had warm water. We spend all day at the beach, dug pits, boogie boarded, fought the waves, searched for sea shells, tried to re-apply enough sunscreen and had a great day overall. Poppy, Steve's dad, made dinner for us all and we hung out on their back deck telling stories until it was time to head back to the Motel for some sleep. The older kids stayed there to sleep upstairs with the Philpott boys.
Sunday brought the clouds. We headed to the beach for a little while but by lunch we were getting rained on and headed back to the shelter of the house. While the boys were distracted with DS and the Little League World Series, Chloe was getting some painting insight from Poppy, who happens to be a bit of an artist. She was totally enthralled and came up to me asking to go back to the motel to get her drawing book and pencils because "seeing someone paint or do art makes me want to do art".
We did try to get out of the house between rains and thought it would be a good time to go see the Barnaget Lighthouse on the north shore of the island. We had some misting on the way up but nothing too bad. We got there and started walking to the lighthouse thinking we had only a couple of minutes to get inside for the walk to the top before it closed at 5pm. About half way there it started to pour down rain and then to top it off we got to the base only to find out it closed at 4:30. So we turned around and headed back to the vans. We found the entrance to a visitor center. Though the door was locked it did have a roof so we were out of the rain. After it died down a bit we made a run for the cars. We made plans to meet at a restaurant to get a snack - Steph and I were going to stop at a little craft/gift store to look around first. Philpotts ended up coming back to that store with us because the restaurant was even closed. The next thought was Viking Village, which is essentially a marina where fishing boats are docked and has some touristy things and shops. It held off raining for most of this time. We headed back home for dinner. That was supposed to be a done deal as we had a chicken brining for most of the day but the discussion was - do you think one chicken is enough? well, it depends on how you cut it and what else we have to eat with it. Might as well grill two of them then. Ok that will take a couple of hours adn it's almost 6:30 now, should we feed the kids something else? sure how about dogs and burgers. Sounds good, I think I'll have a burger too - I'm hungry. Me too. When Steph and Anne didn't want to eat anything I had a burger and warmed up some leftover pork tenderloin, Steve had a burger and we still grilled the chicken.
That night Dylan wanted to come back to sleep in the motel with us. He was very chatty when we got there and didn't want to go to sleep. It was cool to hang with just him for a while and talk. I had to cut him off though because we were meeting for breakfast at 7:30am for a special of 2 eggs, 2 pancakes, 2 sausage for $2.22. You can't pass up that deal. The only bad thing is that you have to be there before 8am. Good thing is - we all made it to Uncle Will's on time and had a great breakfast. Then we headed to the beach. Yay the sun came out. We had a great morning doing all the beachy things we did on Saturday only today was hard to go out into the waves. They were pretty big but there was also a fast current that would take you down the beach in a hurry if you weren't paying attention. I tried to go out on the boogie board to try them out but by the time I was about halfway to where I wanted to be I would be 100 feet down the shoreline and exhausted from paddling and fighting the waves. I gave up and went back to the house to take a conference call for work. When I was heading back to the beach after the call I met the whole crew coming home. Seems it started raining a bit on the beach so they came home for lunch. We also had to pack up and get on the road home since we had to work on Tuesday. We relaxed a bit, headed to some stores for some shopping (we had to get Dylan a new hermit crab since I left the top of the cage open and his climbed out a few weeks ago) and packed up finally getting on the road about 6pm. A stop at Target for some essentials on the mainland and gas were the only stops.
On the way home we got messages from Marla that they had decided to keep with the transfusions for as long as he was able and would have hospice care come to the house to help with medications. Russ wrote what will probably be his final update in his blog and Steph read it to me as I was driving down the road. He spoke of facing the reality of him dying. That's where I thought of the bridges.
We were all crossing bridges that night, literally and figuratively. We were crossing many bridges to get back home making that trasition from Island to Mainland, from Beach Life to Real Life, from Vacation to Work. Our group of friends was about to go across the bridge of having 4 families who love each other's company and get together as often as possible to having an empty seat at the table from now on. Marla and Russ were facing thier own Bridges - Life to Death. Facing death, one's own and that of one you love. Some bridges are fun to go across and others are scary beyond belief but they all have to be crossed. I can't even imagine their conversations, feelings or the decisions they have had to make. They both have been so strong through this entire ordeal and to have the fact that there are no more options when you have a terminal illness is like getting lost in the mountains, climbing for days thinking that at the top you'll be able to see the next town and you'll be safe. Only to get to the top and find out there are mountains all around you for as far as you can see with no safety in sight.
I will close with that as the post is already longer than anticipated. Next post will update on what has happened since we returned.
Thanks for reading.