Call there soon turned into four days later, but I was confident that we would be able to come back up to Baltimore before the school year started, as the testing would hopefully yield some insight that I could use to bolster her IEP. So I called... and had to leave a message for an "appointment representative" to call me back. Not a department-specific one, mind you, but just an appointment person within Johns Hopkins itself.
So two days after that, they call me back, take down the info, and then tell me that they will pass it along to the Neuropsychology Department, and then *they* will call me back for an appointment.
A few days later, Neuropsych calls me, and says that they're booking out "into February." Oh, of course they are! I was previously super mad at myself for waiting the initial four days when I hit the first delay, but now I was firmly in the "oh, fuck it" category and decided that my innate procrastination was JUST FINE AND NOT HURTING ANYONE.
I generally do not like the specialists in the Virginia Beach/Norfolk area, and internet searching had not turned up a lot of good options anyway. We had an appointment with her ophthalmologist the week after we returned from Baltimore and I asked him if he had any recommendations in the area. He suggested I call down to Duke and see if they had any openings sooner (Duke! Of course! Why didn't I think of that sooner?). So, you guessed it, a week later I called down to Duke. Turns out they're scheduling out into 2025 (no, not really, but that's what it felt like) so I put our info in and hoped that someone would have a cancellation within, you know, the next six months.
This week I'm off from work (I am working in the front office for a school now, and they are closed this week). I had grand plans of cleaning/organizing the house. (Important note for later: Matt is also traveling this week for work.)
Monday afternoon I miss a call from a number I recognize as Johns Hopkins. I listen to the message and call back like 45 seconds later ... turns out they have a cancellation this Wednesday at 9 a.m. "Would you like to take the appointment?"
Of course, yes, duh, write us down. As I'm talking to her my mind is running full-throttle in a thousand other directions, like how do we get there? Where are we going to stay? HOW AM I GOING TO WORKOUT? You know, the important things.
On our trip up there a few weeks ago, which probably deserves its own post, we ended up meeting a family with a daughter who has the same rare combo of things that Bug has. It was an amazing, emotional, mind-F of an experience. I was in communication with the mom a few days leading up to our meeting, and she mentioned they were staying at the "Children's House." So a bit of searching later I found out that they have accommodations available near the hospital (similar to a Ronald McDonald House thing) that cost like pennies to the dollar of what we usually have to shell out when we visit and stay in hotels. And of course, no one at any of the clinics we've been to up here have ever mentioned it to us, ever. So things fell into place and we got a last-minute spot (it requires a physician and social-worker referral, as well as open space on the dates you're visiting), saving us $$$$ and allowing Bug and the other girl unlimited play time together.
Back to this week. The appointment was Wednesday at 9 a.m., meaning we'd have to get to Baltimore the day before. I immediately called the social worker and asked for referrals to Children's House and Ronald McDonald House to see if there was any crazy chance we could have a place to stay Tuesday and Wednesday night (current time: 4:00 on Monday afternoon). Then I bought two Amtrak tickets because hell if I was driving up to Baltimore myself (I have a few stretches of highways on my "only if forced due to extreme emergency or collection of lottery winnings" list, and they include, so far: I-5 through Camp Pendleton, the Coronado Bridge, the Chesapeake Bay Bridge Tunnel, any under water tunnel, really, I-64 between Newport News and Richmond, and I-95 from Richmond to Washington, DC.)
Somehow the stars aligned, we got a spot at Children's House, our friend could take the dog, and we were headed to Baltimore in the morning!
Tuesday morning I wake up and... there's a large part of my tooth missing?! OMG. Somehow I chipped off part of one of my molars. On the day we are leaving. It doesn't hurt, just feels creepy and makes eating impossible, so I... carry on and commit myself to remembering to call the dentist at 8:30 a.m. We somehow leave the house on time and make it to Starbucks, and still arrive on time to the bus we are taking from the Amtrak station in Norfolk to the next station in Newport News, where we will catch the train that will take us up to Baltimore. There are some super interesting people on a bus at a train station that is traveling to another train station, and even more interesting people getting on an Amtrak in Newport News, Virginia. But at the very least, it was the start of the route, it wasn't packed, and we easily got two seats next to each other.
Bug: "this is like a bus and an airplane."
Trains are surely not the fastest and most efficient way to travel, but they are relatively low-stress, have WAY more room than an airline seat, and allow getting up and walking around during travel. Naturally there was almost no traffic on 95 that morning (HOW!?!??) but we were committed.
When we pulled in (early) to Union Station in Washington DC, we were informed that there would be a brief stopover, and the train would depart again at 2:05. I saw some people leaving their belongings in their seat as they left the train, but that seemed crazy to me, so we grabbed our stuff and went to wander around the station for an hour. I figured we could get something to eat, blah blah blah.
Tourists being dumb at the station!
We were a bit aimless for the first 20 or so minutes. I finally decided that we should go to Au Bon Pain because they probably had a salad; halfway there, she said she had to go to the bathroom. It was already almost 1:30, so I asked her to wait. We (okay, I) debated probably a bit too long about the salads, we paid, and left. Then I decided that I needed a Starbucks. There was a long line, so I thought I'd send a quick mobile order, but of course I had no service so nothing would load. I was committed at that point, so we stood in line. The gate back down to the train was just across the hall so I figured "no problem!" I might have also at some point in this journey promised Bug a Jamba Juice. We left Starbucks and headed toward Jamba Juice, and I begged her to hold her pee until we got back on the train.
We walked into the hallway and I realized that the enormous mass of people were all in line to get on our train. A very helpful Amtrak employee then informed me that the rear of the line was actually around the corner, behind the line of 150 people snaked behind me. RIGHT. So we hustled to the end of that line (seriously, how did I fuck this up so badly?) and stood there as more filled in behind us. She of course started whining about the Jamba Juice, and I said to her in perfect passive-aggressive parental fashion: "What am I supposed to do, leave you here alone? Is that what you want? To be left here by yourself? We have to be in this line to get on the train." (I am so fun when I'm stressed out!).
The family in front of me then said, in lovely British accents, "Would you like us to mind her?" And I looked at them, and I looked at their kids, and I said, "Sure." And before they could rescind their offer that they probably didn't think I was going to actually accept, I left Bug with them and ran to the Jamba Juice that was a few steps away. The gum-chomping cashier informed me that they were only accepting cash, and somehow I had cash, so I said, "OKAYTHAT'SFINE." Then I asked what they had in kids flavors, and actually let her slowly explain all four of them to me, even though I knew more or less what I was going to order ... and then ordered and paid and then stood at the other end rocking foot to foot willing the equally inefficient employee to PLEASE HURRY UP. Bug's smoothie completes its round in the blender and she pours it into the kid-sized cup and then realizes that she cannot find any kid-sized lids for the cup, and apparently my scary hairy eyeballs were burning a hole in her forehead because she quickly just dumped it into a bigger cup that she had lids for and put it on the counter, but then I grabbed it before she could do whatever straw trick they apparently do at Jamba Juice and she looked even more irritated at me BUT WHATEVER I DO NOT HAVE TIME FOR THIS, and then I quickly ran back to the line with my mouth clamped on the lid of my Starbucks cup that was stacked on top of the Jamba Juice in my left hand, with the bag from Au Bon Pain in my other hand that was also towing the crappy roll suitcase that we had bought for Bug for Christmas several years past when she was obsessed with rolling suitcases and I saw it on sale for like $10 that we were using because Matthew had the nice rolling suitcase with him on his trip.
I got back to the line just as it started to move (WINNING) and overheard my very awkward child asking the other child if she was also going to stay at Children's House, because for whatever reason my 7 year old still cannot grasp the concept when we are traveling that people around her are not also going to the exact same place that she is.
So the whole experience was very Rookie Move, and by the time we finally made it back on the train, I saw the woman who had previously left her stuff in her seat sitting in her seat and thought to myself, "Oh," and then the only seats that had two next to each other were ones back by the bathroom, facing backward to a large open space reserved for wheelchairs. Of course she still had to use said bathroom, and let me say that the smell of that bathroom is somehow permanently etched into my olfactory system and just talking about it somehow conjures it back up where I feel like I could chew it and then barf it all out. So lesson learned: there are a shit-ton of people who get on the train in DC, and maybe next time subtract 45 minutes from however long they say your "stopover" is so you can get back in line in a less panic-inducing spot.
We only have two stops after DC until we arrive at Baltimore Penn Station. At all the other stops, the conductor has opened only a few doors on the train because they are not flush with the platform and require steps. This has always been at the opposite end of the train car from where we are sitting. I miscalculate the amount of time between the BWI stop and the Baltimore station and so I'm throwing shit into our bags and like fighting this stream of people going the other way down the aisle trying to get to the door, only to realize that this station has a platform flush with the train, so all the doors on every car have opened automatically so I didn't have to shove people, I could have just turned around and walked three steps and gone out the door that was right behind our seats. RIGHT, YES, GOOD TO KNOW. NO, YOU'RE THE ONE WHO FEELS LIKE AN IDIOT, NOT ME.
We get upstairs and outside the station and the Lyft is there in like 30 seconds (which... why was finding a Lyft so much more difficult in Chicago than in Baltimore?). We arrive at Children's House and get checked in, and then get another Lyft (notice a pattern) down to the Inner Harbor because Bug wants to go to Barnes and Noble.
After we're done at the book store, I convince her to take the free bus (yes, they have routes that are free here, called the "Charm City Circulator") over to Whole Foods so we can grab a few things to eat to have with us at CH (you are assigned pantry space and space in the fridge). When I ask her if we should take the bus back, she says to me, "let's just call a car, Mom."
So we get back and head upstairs and the previously-advertised ice cream social has already been set up in the kitchen. The family sponsoring it has also brought cute patterned beach balls and Sharpies for the kids to use to color them in. There is a child already sitting at the table, so Bug goes to sit next to him and is completely oblivious to the fact that the child was using the chair next to him to rest his catheter bag (previously we haven't encountered children at the house who were actively hooked to anything; it's not a hospital facility, per se, but kids stay there while undergoing treatment/appointments) and so has to move it. The child and the parents are not native English speakers and the child is clearly distressed about where to put the bag and I am MORTIFIED that Bug has still not noticed anything. I try desperately to apologize on her behalf and try to move her to another seat but she ends up sitting there anyway and the kid (who maybe doesn't speak English at all) is sort of quiet for a few minutes before coloring again.
I really don't want Bug to have the ice cream before dinner, but then another family is in there, a grandmother with two younger kids, and she announces loudly (but in a lovely British accent) that there "are some situations where you must eat dessert first!" And then I feel like an asshole for telling my kid no. So I change my mind and say that she can have ice cream and as we are about to put toppings on, one of the grandkids sneaks up and takes a fistful of gummy bears and then just drops them back into the bowl (OMG, NO) and I fish them out and tell him he has to have them and I feel like I've offended the grandmother and I'm sort of perturbed that she's offended (but then later we have a pleasant interaction so it's apparently all forgiven).
We go into the other room for dinner (most nights of the week there is a "family dinner" sponsored by a company/organization/family). They put out the food and... I wish it were Monday when someone/some place named "Nacho Mama" is scheduled to come. I don't mean to be ungracious or spoiled but for descriptive purposes: There was a vat of "house salad" that consisted of iceberg lettuce, probably six slices of tomato, cucumber and shredded carrots. Then a tray of brisket that when I took off a piece revealed oddly red-colored meat on the inside (everyone who knows me knows that if I'm going to be around any kind of cooked meat, it better not be pink or red), then a tray of pulled pork (oh, it's getting better, you say?), then a tray of BBQ restaurant-style macaroni and cheese, then some green beans (that I realize later are mixed with.. bacon? That's a thing? Green beans and bacon?), then baked beans with bacon, and some sort of brownies and cake. I am SO HUNGRY that I actually take some pulled pork and smother it in BBQ sauce and force it down, as well as an embarrassingly large portion of salad (embarrassing because of how much I held up the line taking 17 tong-fuls of it). Bug is somehow enjoying the macaroni and cheese even though she normally eschews any that doesn't come out of a cardboard Annie's box. She leaves me halfway through dinner to poop (and make more room in her stomach) so I sit there by myself, miserable at how the tastebuds on the right half of my tongue seem to have given up (I can't chew on my left side due to the tooth situation) and wishing I had a taco and some guacamole.
Eating more ice cream after dinner helps, though. The volunteer mom confusing a hurricane with a tornado I could have done without.
I try to do this ridiculous burpee exercise routine in our room after dinner but realize jumping is impossible without being reported to the front desk, so we go downstairs to the basement where all the toys and games are (and it's really an amazing assortment) so I can finish my weirdness. I'm guessing at some point she will be embarrassed by this sort of activity/behavior from me, but we haven't hit it just yet. She plays with a few other kids that are down there, gets sufficiently wound up, I drag her upstairs, and she proceeds to toss and turn for almost an hour and a half before finally falling asleep.
We made it to Neuropsych this morning without much incident, and I'm now sitting in the waiting room as the testing takes all day (and is done without me present). I had to fill out four parent behavior assessment forms, and I HATE filling these out, because I always feel such pressure to answer accurately, and I second-guess myself all the time. I mean "Never" is pretty black and white, but there IS a space between that and "Sometimes," and generally speaking I think too much.
I went down to get a coffee ("there's a vending machine," the woman at the desk told me) where I got quite possibly the most disgusting cup of coffee ever, and came back upstairs just in time for another woman who was waiting to tell me "oh, they came out looking for you," because of course they did! What other time would they come looking for me? (Don't worry, they found me a few minutes later).
So we'll be here the rest of the day, and then have PT appointments all morning tomorrow before heading back. Bets on how many Lyft rides I can take between now and then?
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