Kyle and I used to attend Eckankar Seminars fairly regularly in October in Minnesota to celebrate the spiritual new year, which is October 22. I describe the event as a spiritual retreat and I have always found them to be immensely powerful. We hadn't been to one since 2012 for a multitude of reasons. But this year everything seemed to line up. With my new job we could afford to go, I stumbled onto an airline ticket sale with Southwest, the timing was as perfect as it's possible to be in the school year, and I have just felt really spiritually motivated lately (like actually been doing my spiritual exercises and writing my dreams down)!
The only reason not to go was that I was positively terrified of traveling with Cyrus.
And that seemed very much like a terrible reason not to go. Like this is a fear I needed to face.
I have been anxious about it for months! But as the date came closer, the anxiety faded and I just became more and more excited!
And the day of travel went incredibly smoothly! We took a Lyft to the airport, went through the special security screening with ease with all our mobility equipment and medications accounted for! At the gate we qualified for pre boarding and an attendant carried Cyrus from the end of the jetway to his seat while Kyle installed the carseat and I collapsed the wheel chair into pieces for efficient storage. The pre-boarding accommodation made such a huge difference in taking the stress out of trying to juggle our many pieces and bags.
Cyrus was definitely pretty irritated at being trapped in his carseat for so long, but he dealt with it by pretending to go to sleep, and then actually going to sleep. Kyle napped too, and I wrote letters of recommendation for deserving teenagers. We landed in Denver and the wheelchair was ready for us on the jetway the second we got off. We had lots of time to attend to our own and Cyrus's needs before we got onto our second flight to Minneapolis. The second flight was equally smooth and uneventful. I remember thinking that this was all so easy - and wondering why I was so nervous about traveling for so long!
On Friday at the seminar itself, we first discovered the family room. The room was covered in blankets, pillows, and toys! It was a place for parents to chat and hang out while their children entertained themselves. Cyrus enjoyed the room immensely - at first, probably only because it was his break from sitting in his wheelchair, but by the second day he would get excited each time we entered the room. I think he also learned that he got a lot of attention there - not just from me, but form other kids and parents too! He even found a toy that he liked! (Weird!)
As we attended workshops and the main program, I quickly noticed something. At this event, none of the volunteers mistook Cyrus's wheelchair as a stroller. Every time we arrived at a room or hall, it was like, "Go into the expedited line on the far right," "Here's your wheelchair pass!" and "Our volunteer will escort you to your reserved seat (and remove any obstacles or assist you as needed along the way)." I felt so incredibly accommodated without ever having to ask, and definitely without having to fight for it. And this was further emphasized by how many people would stop and say hi directly to Cyrus. They really saw him and acknowledged him as his own person, instead of looking past him, or talking over his head to me. No wonder the boy couldn't stop smiling! It must be so nice to feel seen.
We connected with old friends we hadn't seen in years, some of whom had never met Cyrus, and we met new friends as well. On Friday night at the main program, we were seated next to an older couple who turned out to be special needs parents themselves - the dad reached out to ask us for our story almost immediately, explaining that when they had first started as parents that they had felt so isolated and that he always made a point to strike up conversation with others who were obviously in the same situation. He hoped that perhaps, even if only for a moment, they wouldn't feel that isolation. We swapped several stories with them throughout the evening and then ran into them again on Saturday. That same afternoon I bonded with another woman who also had a son named Cyrus who apparently had epilepsy and shared a birthday with my Cyrus! All the coincidences!
There was one woman in particular though that seemed to leave a huge impression on Cyrus. She stopped by his chair during an intermission. She confided that he was the brightest light, and asked if I might introduce her to him. Cyrus was smiling, but he was almost coyly shy at first. I've never seen this emotion in him. It was impossibly cute, but as she spoke to him, he literally lit up! Started giggling and smiling! Honestly, I've never seen him warm up to a person so quickly. She quickly had tears in her eyes, and watching this whole beautiful soul to soul moment I was only slightly behind with my own tears. We managed to run into her again later that evening, and he immediately burst into giggles again! She's clearly a Cyrus whisperer!
On Sunday we ran around the temple in Chanhassen taking pictures amongst the multi-colored trees of a true autumn that is rare back home. And just when I thought we had too much time to kill and nothing to spend it on before we had to head to the airport, an old mentor took a seat beside us and we had the opportunity to drink tea and catch up! He had to depart twenty minutes before we did and we found ourselves upstairs just in time for a fifteen minute hu song in the sanctuary.
Cyrus didn't have a single seizure in four days through the whole thing! It's been about two months since he had a seizure free streak that long. I am just amazed at how perfectly and smoothly the whole trip went - how everything literally just lined up! It was an incredibly beautiful and profound experience. I don't really know how to put it all into words.
And then we had to go home.
Which did not go nearly as smoothly.
During our second trip through security we triggered two alarms. Cyrus's wheelchair had apparently acquired some kind of fume or smell that was on the "watch" list and we had to be searched. While I was being patted down, another bag had triggered an alarm because we had wrapped a loaf of bread in aluminum foil. Admittedly a rookie mistake, but seriously... Kyle followed this security alert. Once we were both cleared and packing up once again, he asked where our passports were. I told him that they were with Cyrus's meds. We quickly discovered that we didn't have his meds at all! Yikes! And when I turned to the tables that had all the plastic bins that had gone through the x-rays, it was no where to be found! Even the emergency medicine had been with it all.
Feeling just slightly panicked that we had literally no life-saving medicine in our possession, we checked in with TSA again. Thankfully, they still had the meds. A man explained to me that he had set the meds aside and delayed their screening on purpose because an older woman had claimed the drugs were hers. He suspected that they weren't because apparently she had shown up significantly later than the bin of meds in the security line, and he was therefore unwilling to clear them and leave them on the table while she was still there. I watched them scan all the liquids in quite a neat contraption, and we were on our way again.
Our flight had been delayed, but not significantly. Certainly not enough to be a problem. Right? Except boarding was more stressful as they tried to make up the time. There were no attendants helping us carry Cyrus while I collapsed the wheelchair and Kyle installed the carseat. And there was no gap in time between the pre-boarding and regular boarding, making it difficult to get back to the chair on the jetway to collapse it down. But we got through it. I was anxious for most of the flight, unconvinced anyone had ever seen the chair to stow it underneath the plane. (Rationally, I knew that was the procedure and that the airline flight staff had to have the routine down, but I was still anxious). And Cyrus certainly never took a nap - not for three hours! I did get this cute video of his choreiform "sign language" as a bonus!
And on the other side of the long flight, in Phoenix, our layover was vastly shortened, and during this time Cyrus needed meds, needed to eat, and needed to be changed. I wanted food too! Some of my anxiety definitely served as fuel to feed Cyrus way too fast, which was leading to all sorts of coughing on his part, and even as I tried to slow down, I would inevitably speed up again. Kyle was gone trying to find me something gluten free to eat, and before I knew it, it was five minutes to pre boarding and I still hadn't changed him and I was surrounding by all our backpacks, a wheelchair, and a carseat with no clue how I was going to get it all into the line pre-boarding line by myself. And if we didn't manage to get pre-boarding it seemed unlikely we'd all manage to sit together!! Oh! And I had Kyle's boarding pass!! How was he going to get on the plane if I boarded without him? Ahhh!!!!
It was fine. I changed Cyrus right on the ground in the middle of the crowd! No one said anything. (He's getting too big for the public changing tables anyway - I feel like we're going to break them!) And then an attendant walked up and asked if I needed help, but before I could pleadingly say yes, Kyle popped back up right at my shoulder. And we were on our way to San Francisco Airport! (Which is conveniently far closer to where we live than it is to SF itself).
Cyrus still didn't nap, but this flight was far shorter! We just had to get to baggage claim and then a taxi! Easy right?!
But then an interior conveyor apparently jammed? And everything had to be transferred to another carousel? I don't know how the inner workings of an airport work. All I'm saying is there was a delay! And then Cyrus is seizing! Really badly. We put him on the ground and turn him to his side while watching the time. People are staring. Fun times! I guess that's what happens when the boy is up for like 18 hours without a nap! Ugh! Two minutes in he's come out of the seizure, and the baggage has arrived. So, we load him back up and head towards the taxi line. A minute later, on the way, he's seizing again. I hate clusters! Especially right now! Cyrus is not the only one who's been up for 18 hours, five of which were on cramped planes...
I don't take him out of the chair this time, as we're crossing a street. We're in line for a taxi when he comes out of the seizure, and I'm watching him like a hawk to make sure he doesn't have a third. Kyle is trying to install the carseat in a taxi, and failing. Apparently the seat belt wouldn't click. The cab driver insists that his taxi and all compact cars are just too small for the seat. He's wrong - I suspect he doesn't want to put up with us trying the carseat in a different seat because we're taking too long to load. But he calls the attendant over and insists we need an SUV. Only there isn't an SUV in the line.
But there's one pretty quickly and this driver is probably thrilled that he has passengers immediately without having to wait in the line of taxis. He's thrilled to take us! Cyrus falls asleep so I feel like I can breathe. We get home and are in bed by a quarter to midnight, though it feels like two am Minnesota time. Let's just say it wasn't at all hard to fall asleep.
And here's the thing, despite the rocky transition back to real life, we learned that is is definitely possible to travel with Cyrus! It felt like an insurmountable obstacle before, but even with all the hiccups, even when things went awry, we were able to handle it! We rose to the occasion - used our creative selves to persevere through the tiny stresses.
And the whole experience was amazing! Definitely more than worth it!
Forgive us if we go back to being homebodies for a few months though while we recover! Haha!
...
General Update:
Cyrus threw us for a loop a few weeks back with a new kind of seizure - a laughing seizure, which let me tell you, is not funny at all. But new medications have had a history of changing up his seizures, so it was not a shock to be surprised with something new. It was actually an empowering moment personally in that I recognized it as a seizure so immediately and without doubt. I've just learned so much about epilepsy that it's an area where I feel immensely competent.
Cyrus has seemed to come out of the teething fog (though that last molar still isn't actually in! It's being stubborn!) and has been in an overall good mood. His trunk strength and head control are more solid than ever. Sometimes I can do the "Look! No hands!" trick for 3-5 seconds when we're sitting together.
And his latest development is that he's become far more communicative. He will throw his limbs to the ground simultaneously when he has something to say. You have to guess by his tone of voice if he's upset and saying "NO!" or if he's excited and just wants to share his joy. I think this particular behavior comes from his training of pushing the button, which is usually placed at his side in class. He will now cry when he wants attention - like he just wants to play, whereas before, this was limited to being in pain, sick, or hungry. So that's been fun because he'll be crying and all you have to do is pick him up! Then he's all smiles! And as always, he loves dancing and spinning around. But he's getting heavier all the time (we broke the 30 pound threshold) so this is getting harder to pull off. I keep trying anyway. A friend of mine said I needed to develop the other side of my body strength. I don't know how I feel about this advice.
We're still working on getting our wheelchair van. And by "working on", I mean I haven't thought about it at all in four weeks. I gotta get back on that train though, because these hoops won't jump through themselves!
