We went away this weekend, to Newark, N.J. to see Jerry Seinfeld’s stand up show at the NJPAC in downtown Newark on Friday night. Saturday, we ventured in to NYC to go to the American Museum of Natural History. We had a really good time, actually I am still feeling giddy about the trip. The truth is going places this stage of ALS is hard. To be honest if you were to bear witness to our family getaways you might question whether it is really worth it. I can assure you it is worth it to us. Here is a sneak peak of how everything goes down when Bert and I come up with an idea to go away.
One of us usually comes up with a brilliant idea to go somewhere. For example, this time it was me. We had been watching the web series on Netflix, Comedians in Cars Getting Coffee. We would watch an episode everyday while I fed Bert lunch. We would then reminisce about the good ole days of the show Seinfeld and how great our Thursday nights at Kutztown University used to be, watching Mad About You and Seinfeld. Wow, typing that made us sound like really big nerds. Oh well, instead of parties we ordered out Mama’s pizza turnovers and watched TV. We were too tired from track practice to party anyway, and to be honest we were kinda nerds. One day I happened to be looking at my Ticket Master app and noticed that Seinfeld had a stand-up show. I searched wheelchair accessible seating and lo and behold there were a couple of seats. I yelled into the other room to Bert do you think we should go? I think he may have been napping so I figured I better just go for it before I started to think about the logistics, cost and all the obstacles we would have to manage and changed my mind.
These darn apps and PayPal Google Pay and Apple Pay make it so easy to just make decisions on a whim. You don’t have to get up from the couch to dig for a credit card, you pick your seats right there on your phone and buy with one click. These ideas of travel always seem great when Bert is snug in his hospital bed, comfortable, resting and all equipment is within an arm’s reach. I booked the hotel, handicap accessible and all with a few clicks from my phone. I didn’t even worry about a roll in shower because I figured if I showered him before we left how dirty could he get in a weekend. I also thought this would be a great family get away, so let’s take the kids. I always come up with these amazing ideas on a Tuesday afternoon between the lunch routine and the time school is out, usually over an afternoon cup of coffee. Later on, some of my grand plans come into question.
Here is how it usually goes leading up to our little trips. First of all, if you don’t live with a terminal illness or don’t care for someone full time who does, you might say what’s the big deal? A weekend trip would be nice. Yes, it would be nice, I mean it is nice, until it gets closer and I have to start thinking about how all this will play out. A couple weeks before, things will happen in daily life; things such as a constipation issue, a panic attack, some crying by one or both of us over a small coughing/choking episode or a tiny argument will pop up. (I use the words small and tiny with a touch of sarcasm) During one of these hiccups on the daily one or both of us will say why the f*&k are we even going on the trip or I don’t even f*&king wanna go anywhere. This banter goes on along with some yelling about how much it costs and how much we will lose if we cancel, I remind Bert I got insurance on the tickets…you know in case of an unforeseeable event such as death. Sorry but six years into the crazy disease we actually plan for this crap. And whether it’s day one with ALS or six years later we still bicker and fight like any other married couple, or at least like we always have.
This goes on until it’s too late to cancel the hotel and get our money back, so we tell ourselves we have to go now. I then wait until the day before to race around like a mad woman trying to cross everything off several lists I have made for packing. One may think that a weekend trip consists of packing one bag and maybe a small bag for toiletries but not for us. When you have ALS you need a lot of stuff. Bags for clothes sure, a small bag for toiletries yes, but also bags for gadgets to turn the hotel mattress into an adjustable bed, breathing machines, cough assist machines, medications, and catheters, urinals, a variety of pillows, tube feeding, syringes, pill crushers, special straws, computers and all the many things needed to make them work, wheelchair chargers and coolers for medications that need refrigeration, supplements, and all kinds of just in case items. We argue while I pack because Bert is bossy (at least I think so). We debate over whether or not to pack the suction machine, he says no, I say what if you choke, he says he doesn’t care that it would just be his time and he is good with that, this really irritates me because I am in no mood for death jokes when I am trying to remember all the things we need. Eventually my lists are just lots of black lines crossing off all the items and I pray I didn’t forget to put anything on my list in the first place.
The next hurdle of travel and truthfully maybe an even bigger problem than the fact that Bert has ALS and can’t move at all, is that we are taking two teenagers. For this trip I have warned them way in advance, Bert has sent them reminder texts and I have casually mentioned it. We are going away on this date and for this long, you both are going, we don’t want to hear any crap from either of you when the time comes. You are not getting out of it, so don’t ask. You are not staying home, this is going to be a family trip. We hypothesize that if we give them ample notice and then reminder texts, it will sink in and they will have plenty of time to get used to the idea. We also hope this will cut down on the complaining about how they have no desire to go anywhere with us and they don’t understand why they just couldn’t stay home. For this particular trip our planning works, neither child gives us much push-back. This makes me ecstatic, so already I am motivated to make this weekend getaway work.
I pack everything in the van, shoot my mom a text about the dogs and then get Bert ready to go. We leave the usual 3 hours later than planned and Bert is annoyed that we are running behind. I am grumbling under my breath I don’t know why he cares because I am the one driving. We don’t even pull out of the neighborhood till people want McDonald’s and Bert asks me where I am going and when I say asks me, he garbles some words together since his Tobii is not hooked up…long story short the computer was acting crazy, so I planned to mess with it when we arrived. I am trying to look over at him, so I can understand him and drive and listen to people tell me their starving. I snap at all of them and tell them to be quiet! I will stop when I stop, I am following the GPS and I don’t want to hear another word.
We make it to the hotel and the drive was pretty uneventful. We check in and the kids and I get everything inside. Bert has time for a nap before we go to dinner. Dinner is nice, I feed Bert some salmon and mashed potatoes. I feel grateful that he can still eat for pleasure. We get ready for our show, the drive downtown isn’t too bad, I navigate the parking garage without too much trouble. It’s cold though and cold and ALS don’t mix well. I hurry to get Bert on an elevator and up out of the parking garage and across the cobblestone street to the venue. There are heavy glass doors to fight with, it’s not easy driving a wheelchair and managing elevator rides, heavy doors and crowds while trying to hurry because your hubby is frozen stiff literally. Once inside we navigate the crowds to the box office where they send someone for us. This was really nice, to have someone help to direct us through the crowds for another elevator ride to our seats. The show was really great! So, even though I get stressed out and am usually in a sweat it’s worth it. We love going to shows and concerts when we can because for a short time while the lights are dim, and we are watching ALS doesn’t really matter and those times are rare.
Saturday, we decided to go in to NYC to the American Museum of Natural History. The kids weren’t thrilled, but it was on Bert’s bucket list, so they agreed. The trip into the city was smooth and I even heard someone from the back seat utter “I guess Mom can drive.” The museum was crowded and huge, we finished the whole second floor and made it to the butterfly conservatory and then Bert was getting uncomfortable and needed to lay down. The kids were happy to head back and so we did, it was a nice day together and I cherished every moment of it. Even through frustrations and struggles we made it and we were together making memories. Bert took a nap, Alex stayed with him and Sophia and I had green Grinch hot cocoa at I Hop. It was a relaxing Saturday evening.
Sunday, we packed up and came home. Bert slept all the way home. He was worn out, but happy. I am not sure my teens realized how much these moments mean to Bert and me, hopefully one day they will read this blog and remember how happy they made their parents. ALS is hard, it’s hard to go places and enjoy things when there are so many obstacles to overcome, it’s exhausting. But it’s also rewarding, it feels good to beat this disease, maybe not with a treatment or a cure, but with love. We have each other and as long as we have team work, we can still accomplish whatever we put our minds to. I am so glad we followed through with this weekend trip.
So as always, my friends, please don’t take moments with each other for granted. Go out and explore, do things together even if you do have to send your teens text reminders weeks in advance. Spend time together even if it’s in the car or a hotel, sometimes these simple adventures are the most wonderful ones. Say I love you, out loud, say it often. Don’t be afraid to take a chance, it might turn out to be worth it. Life doesn’t have to be perfect to be wonderful.
Wishing everyone adventures.
#gratefulalways #alwaysapositive
XX Jennifer
One of us usually comes up with a brilliant idea to go somewhere. For example, this time it was me. We had been watching the web series on Netflix, Comedians in Cars Getting Coffee. We would watch an episode everyday while I fed Bert lunch. We would then reminisce about the good ole days of the show Seinfeld and how great our Thursday nights at Kutztown University used to be, watching Mad About You and Seinfeld. Wow, typing that made us sound like really big nerds. Oh well, instead of parties we ordered out Mama’s pizza turnovers and watched TV. We were too tired from track practice to party anyway, and to be honest we were kinda nerds. One day I happened to be looking at my Ticket Master app and noticed that Seinfeld had a stand-up show. I searched wheelchair accessible seating and lo and behold there were a couple of seats. I yelled into the other room to Bert do you think we should go? I think he may have been napping so I figured I better just go for it before I started to think about the logistics, cost and all the obstacles we would have to manage and changed my mind.
These darn apps and PayPal Google Pay and Apple Pay make it so easy to just make decisions on a whim. You don’t have to get up from the couch to dig for a credit card, you pick your seats right there on your phone and buy with one click. These ideas of travel always seem great when Bert is snug in his hospital bed, comfortable, resting and all equipment is within an arm’s reach. I booked the hotel, handicap accessible and all with a few clicks from my phone. I didn’t even worry about a roll in shower because I figured if I showered him before we left how dirty could he get in a weekend. I also thought this would be a great family get away, so let’s take the kids. I always come up with these amazing ideas on a Tuesday afternoon between the lunch routine and the time school is out, usually over an afternoon cup of coffee. Later on, some of my grand plans come into question.
Here is how it usually goes leading up to our little trips. First of all, if you don’t live with a terminal illness or don’t care for someone full time who does, you might say what’s the big deal? A weekend trip would be nice. Yes, it would be nice, I mean it is nice, until it gets closer and I have to start thinking about how all this will play out. A couple weeks before, things will happen in daily life; things such as a constipation issue, a panic attack, some crying by one or both of us over a small coughing/choking episode or a tiny argument will pop up. (I use the words small and tiny with a touch of sarcasm) During one of these hiccups on the daily one or both of us will say why the f*&k are we even going on the trip or I don’t even f*&king wanna go anywhere. This banter goes on along with some yelling about how much it costs and how much we will lose if we cancel, I remind Bert I got insurance on the tickets…you know in case of an unforeseeable event such as death. Sorry but six years into the crazy disease we actually plan for this crap. And whether it’s day one with ALS or six years later we still bicker and fight like any other married couple, or at least like we always have.
This goes on until it’s too late to cancel the hotel and get our money back, so we tell ourselves we have to go now. I then wait until the day before to race around like a mad woman trying to cross everything off several lists I have made for packing. One may think that a weekend trip consists of packing one bag and maybe a small bag for toiletries but not for us. When you have ALS you need a lot of stuff. Bags for clothes sure, a small bag for toiletries yes, but also bags for gadgets to turn the hotel mattress into an adjustable bed, breathing machines, cough assist machines, medications, and catheters, urinals, a variety of pillows, tube feeding, syringes, pill crushers, special straws, computers and all the many things needed to make them work, wheelchair chargers and coolers for medications that need refrigeration, supplements, and all kinds of just in case items. We argue while I pack because Bert is bossy (at least I think so). We debate over whether or not to pack the suction machine, he says no, I say what if you choke, he says he doesn’t care that it would just be his time and he is good with that, this really irritates me because I am in no mood for death jokes when I am trying to remember all the things we need. Eventually my lists are just lots of black lines crossing off all the items and I pray I didn’t forget to put anything on my list in the first place.
The next hurdle of travel and truthfully maybe an even bigger problem than the fact that Bert has ALS and can’t move at all, is that we are taking two teenagers. For this trip I have warned them way in advance, Bert has sent them reminder texts and I have casually mentioned it. We are going away on this date and for this long, you both are going, we don’t want to hear any crap from either of you when the time comes. You are not getting out of it, so don’t ask. You are not staying home, this is going to be a family trip. We hypothesize that if we give them ample notice and then reminder texts, it will sink in and they will have plenty of time to get used to the idea. We also hope this will cut down on the complaining about how they have no desire to go anywhere with us and they don’t understand why they just couldn’t stay home. For this particular trip our planning works, neither child gives us much push-back. This makes me ecstatic, so already I am motivated to make this weekend getaway work.
I pack everything in the van, shoot my mom a text about the dogs and then get Bert ready to go. We leave the usual 3 hours later than planned and Bert is annoyed that we are running behind. I am grumbling under my breath I don’t know why he cares because I am the one driving. We don’t even pull out of the neighborhood till people want McDonald’s and Bert asks me where I am going and when I say asks me, he garbles some words together since his Tobii is not hooked up…long story short the computer was acting crazy, so I planned to mess with it when we arrived. I am trying to look over at him, so I can understand him and drive and listen to people tell me their starving. I snap at all of them and tell them to be quiet! I will stop when I stop, I am following the GPS and I don’t want to hear another word.
We make it to the hotel and the drive was pretty uneventful. We check in and the kids and I get everything inside. Bert has time for a nap before we go to dinner. Dinner is nice, I feed Bert some salmon and mashed potatoes. I feel grateful that he can still eat for pleasure. We get ready for our show, the drive downtown isn’t too bad, I navigate the parking garage without too much trouble. It’s cold though and cold and ALS don’t mix well. I hurry to get Bert on an elevator and up out of the parking garage and across the cobblestone street to the venue. There are heavy glass doors to fight with, it’s not easy driving a wheelchair and managing elevator rides, heavy doors and crowds while trying to hurry because your hubby is frozen stiff literally. Once inside we navigate the crowds to the box office where they send someone for us. This was really nice, to have someone help to direct us through the crowds for another elevator ride to our seats. The show was really great! So, even though I get stressed out and am usually in a sweat it’s worth it. We love going to shows and concerts when we can because for a short time while the lights are dim, and we are watching ALS doesn’t really matter and those times are rare.
Saturday, we decided to go in to NYC to the American Museum of Natural History. The kids weren’t thrilled, but it was on Bert’s bucket list, so they agreed. The trip into the city was smooth and I even heard someone from the back seat utter “I guess Mom can drive.” The museum was crowded and huge, we finished the whole second floor and made it to the butterfly conservatory and then Bert was getting uncomfortable and needed to lay down. The kids were happy to head back and so we did, it was a nice day together and I cherished every moment of it. Even through frustrations and struggles we made it and we were together making memories. Bert took a nap, Alex stayed with him and Sophia and I had green Grinch hot cocoa at I Hop. It was a relaxing Saturday evening.
Sunday, we packed up and came home. Bert slept all the way home. He was worn out, but happy. I am not sure my teens realized how much these moments mean to Bert and me, hopefully one day they will read this blog and remember how happy they made their parents. ALS is hard, it’s hard to go places and enjoy things when there are so many obstacles to overcome, it’s exhausting. But it’s also rewarding, it feels good to beat this disease, maybe not with a treatment or a cure, but with love. We have each other and as long as we have team work, we can still accomplish whatever we put our minds to. I am so glad we followed through with this weekend trip.
So as always, my friends, please don’t take moments with each other for granted. Go out and explore, do things together even if you do have to send your teens text reminders weeks in advance. Spend time together even if it’s in the car or a hotel, sometimes these simple adventures are the most wonderful ones. Say I love you, out loud, say it often. Don’t be afraid to take a chance, it might turn out to be worth it. Life doesn’t have to be perfect to be wonderful.
Wishing everyone adventures.
#gratefulalways #alwaysapositive
XX Jennifer
