The Learning Curve

And so the time has come. Finally. We traveled to Boston.

But not without said drama. 4 days in the hospital, over Christmas mind you. For neutropenia, pneumonia, positive blood culture.  Finally after 4 days, everything finalizes as negative. Except for a possible viral pneumonia. So I am given neupogen and bolstered up. If you remember though, neupogen and I don’t always get along. It causes me extreme bone pain- unless taking pain medication. And low and behold- between the pain medication and the chemo- I get extreme constipation and need a lovely drug called Golytely to disrupt the illeus (a spot where your gut stops working) that this causes in my belly!  Needless to say….Sometimes I feel like I just can’t win. But I suppose on the bright side, I knew what was going on, knew what needed to be done (tried my darnest to prevent it) but got through it.

So after all that rigga-ma-role, we started to drive. And was there a sharp learning curve to driving a with a disabled person- a stubborn one at that. A 41 one year old at that! And one that needs to learn to listen (more on that later). The van, a trailer and a snow advisory. 16 + hours of pure fun with 3 children under 9!!

Lesson Number 1:  I usually ride in the back seat with Aurora. We play, read and she has the most difficulty, obviously being 4, manipulating devices, food, books, toys, etc… So I usually just get in the back and ride with her. Now, I had practiced this for days- how to get to the back seat. Once again, but by this time my legs are extremely weak, uneven at this point, emaciated with steroid use- but if anyone can do it, I can! mind over matter- right? Days earlier, I have driven, washed a car, packed, prepared dinner (you know pretty normal stuff). Greg- “You need to ride up front.” Pshaw! I am super woman. And pretty soon I am a stuck super woman. I cannot get in the back, I cannot move myself up front. He has to pull me from the car. Does that stop me? Like I said- “Pshaw!!”

Here comes lesson 2: (mind you, we are around an hour from home on a 16+ hour journey)- I fall. In the grass. It is about 5 degrees outside on a hill between a massively busy Culver’s and an empty McDonalds (an hour from home).  I wanted to go to the Culver’s because A wanted a grilled cheese. I am humiliated. I cannot get up. “Should we call an ambulance?” Oh goodness. I am lifted by a stranger and my husband. We go to McDonald’s. I sit up front (which still takes me about 10 minutes to accomplish). I start to listen to my husband. We drive about 4 more hours, in the light snow at about 60 MPH. Time, progress, trailer, kiddos, gas mileage… stops….we may not make it  to Boston in 4 days. And I realize this- I fell. Like old lady fell. First I was up, then I was not. And I realize- I cannot walk sometimes.  Bathroom visits are more than challenging. Just to stay upright is a goal for the day. We need to keep moving. The learning curve is sharp. We make it to the Cincinnati area. Stay at a crappy hotel and bank day 1. Breathe in breathe out. Sponge bath because handicapped accessible rooms are not available today. And try to sleep.

Let’s get doughnuts in the morning- easy- there’s a Walmart (what the has happened to me? lol). On the road by 9…. Mission accomplished. We did get doughnuts, but it took me almost 30 minutes to do this with the kids. How in the world do you get easier than donuts? Off we go. Another new purchase- Poise pads, cause you just never know. Off we go. Spilled juice and everything. And then it starts to snow a bit more…. Husband is handling the van awesomely. We passed one car in that first hour. Speed demons. I must admit, traveling like this is almost a science (at least from our point of view). Not too fast, towing mode (didn’t even know we had a towing mode) and a lot of cars passing us.

Lesson 3- bathrooms are disgusting, especially when you have recently had a gallon of golytely  and your legs do not cooperate with your brain. Public bathrooms are disgusting anyways, but please realize, that I cannot get up without touching a toilet. and we’re not talking a little push off – We’re talking put your hand on the seat, both hands and push with all your might. More than once and hope that at some point, you do get up. Because although falling on your butt is embarrassing, I’m pretty sure getting stuck in a bathroom would be worse? (I can hope not to find this out, but there are 3 days left- is the suspense killing you?)

Lesson 4: 4 year olds are still 4 year olds, and they still throw tantrums. And their tantrum involves said bathroom that you are trying not to fall in and you’re still getting golytely out. It took me longer to get her to potty (because we ARE NOT going to stop again) than it did to eat our nutritious lunch (the boys now know about Arby’s curly fries). And it took a lot of threatening (not like physical – but no devices, throwing away the toy she got on a juice box, leaving her behind- I am an awful mom waiting to be published on youtube at this point). But she goes!!! And we get back into the van in like 1:20 minutes.

Lesson 5: Then the learning curve smooths a bit. Here are a few things that I would recommend to others that were actually helpful. Apps= trip advsior. This one was my favorite. If you can get an approximate place to stop, it has has hotels and restaurants available and is friendly to use. It gives you the price and accommodations. I was more savvy the second night. We had a little more room, we stopped about 4 pm, swam and I ordered pizza hut. Still no handicap accommodations. Another helpful site was one published by Pilot J- it would tell you where there were truck stops. Greg’s phone would tell you where things were when you just typed “truck stop near me” for some reason, I had trouble with that. You are thinking ….”truck stops?” Yep. You want somewhere where you can pull through and park. And you just can’t do that anywhere. They are… interesting. But I will say, we had some delicious Amish peanut butter in PA. And you  get back in your car and drive some more. But the kids are super excited about swimming each night. And then- there’s take out. But no shower until the last night when you finally get handicap accessible. And how you wish your legs were working.

And you make it. You. Make. It. And you pull into the nicest McDonalds ever. Where you sit for 30 minutes- just because. Congratulating yourself. Eating soft serve ice cream.  Trying not to dread the split level house you will going to, because you are scared to death of stairs at this point.

When I was still being overly- optimistic. I did not take pictures of me falling or the public restroom if you were wondering. Memories that are only seared in my mind.