Our first night in “paradise.” Interesting how paradise and hell can live together simultaneously. At least in my world.
I’ve spent the last 4 years dreaming about getting back to my ‘island.’ I have always felt at peace and ‘home’ on an island. Doesn’t matter which one. I just have always known I belonged right by the ocean.
I dreamed of buying a second home on an island. But after looking into all of the pros and cons, upkeep, worry about property managers and renting them out, I decided to purchase timeshares instead. Owning a Marriott timeshare became a no-brainer because of the quality of their properties and the various locations they had. I figured instead of owning one home on an island, with a timeshare, I would have the freedom and ability to visit various locations. So I invested heavily in the timeshare and started vacationing annually. My goal was to visit every Caribbean island. I was on a good run, every year for about 7 years. Then Covid hit. My last island was the Grand Caymans in the fall of 2019. I haven’t been to one since and I have been dying to go!
When Dave graduated in 2021, I told him I’d bring him to an island for his graduation present. One thing led to another and we weren’t able to go in 2021 or even 2022. Finally, this year, everything seemed to fall into place and I made the plans to come to Hawaii. My niece was starting at UH AND turning 18 at the same time. I told my sister I’d love to come help them move her in AND celebrate her special day. Then the second half of the trip, I’d celebrate my own birthday and finally make good on the promise to whisk my son away to my paradise.
I’ve been dreaming about this trip for a long time. And once we’d finally made the plans, I then started planning (and worrying) about what it would entail. Traveling with Dave has always been difficult. He can’t really eat anything anywhere so I always make his meals. When traveling, a LOT goes into that. It’s like a meal plan on steroids. I have to think up meals that will be easy to travel with. I can’t leave any stone un-turned. I need to remember every item that will be needed, down to spices. I need to figure out what I can and can’t bring through security. Anything that I can’t, must be packed but I need to think of how to pack so it will stay cold and/or not break. So much goes into this piece.
My second concern now, is of course, the newfound seizures (since 2021). I haven’t traveled with him on an airplane since all that started. It’s all been a great concern and thoughts have run through my mind since we started to plan. It took me a couple weeks to prep, but I got it all done.
Finally the day arrived. Yesterday we all woke at 2:30 am to get ready for the trip. We didn’t have to leave the house until 4am, but I had to pack all of the frozen food to bring on the plane, and the refrigerated food to pack in his luggage, at the last minute. We had 2 carry ons each and 2 checked bags each. A total of 8 bags. (We each had our own personal carry on and then I had a frozen bag of food to carry and Dave had all of the pantry items to carry). It was so stressful getting everything done in time and leaving the house by 4am.
My next concern was on the way to the airport. I began wondering how I was going to get 8 bags from the car to the check-out line. We had our carry-ons but how was I going to wheel 4 suitcases (even with Dave’s help), to the ticket counter? Ronnie ended up waiting by the side of the drop off lane with Dave and 2 of our checked bags while I took the other 2 checked bags to the ticket counter. I printed off the suitcase tags for all 4 of them. I accidentally put one of Dave’s tags on one of the bags. The agent needs to see the ID of the person checking the bags and Dave was out with Ronnie. I had Dave’s ID but not Dave. Tears started to roll down my face as I explained to the agent that my son had autism and epilepsy and was waiting with my husband while I checked in half of our items. Fortunately the agent had a son with epilepsy as well. She completely understood and took the 2 bags. I started full on crying and thanked her for her help. I went out to get Dave and the 2 other bags and saw a security officer standing with Ronnie and Dave. She was coming to find out why Ronnie was just parked in the drop off lane but fortunately, she understood the situation also. I said goodbye to Ronnie and took Dave inside. We got the last 2 bags checked and headed off to security.
My next concern was security. Were they going to let us through security with all the frozen food? This is a question I’ve worried about for weeks. I know what the TSA website says. I’ve almost memorized it by now. But I also know at the bottom of the page it clearly says, “The ultimate decision lies with the security agent on what they will or won’t allow.” We got into the pre-check line, which was super short. I held my breath as our carry-ons were scanned. The agent was pleasant and we exchanged pleasantries and small talk. As I walked through the x-ray, I noticed ALL 4 bags were sitting waiting for me to get them. None had been pulled aside. It was another huge relief.
Dave and I then walked to the gate. The next course of action was to talk to the gate agent. I always ask for us to be boarded first, if possible. Dave is constantly flailing his long limbs. If we aren’t in the front I am constantly apologizing to the person in front of him, who is constantly having his chair kicked or hit. And now, with seizures on the table, God forbid if he had one, we would need all the room we could get. The gate agent finally arrived and I explained the situation. They completely understood and agreed to get us on early. The first leg was just Reno to Oakland. The second leg, Oakland to Hawaii, was the long one. I’d hoped the Oakland agent would be as amenable (and, spoiler, he definitely was).
We boarded the on-time departure and thankfully got in the front row. The flight was uneventful (which is definitely the kind of flight you want) and we landed in Oakland shortly after we took off. My next worry was about the carry-ons. Our luggage was carrying the precious cargo of items I couldn’t carry-on like Dave’s coconut milk, mustard, jam, salsa … (items I couldn’t easily replace at any old store). So those were my thoughts for the next 5 hours.
We landed in Hawaii. Thanks be to God, all of our carry-ons arrived in tact. By this point, it was 12 hours since I’d woken up in Nevada. It was, of course, hot in Hawaii. I was so anxious to get to our hotel and get the frozen food in the fridge. We shuffled off to grab our rental car and get on the road. We also had to stop at Whole foods for items I didn’t want to be ruined in the transit, and thus didn’t bring, including mainly fruits and veggies (Bananas, berries, spinach, avocado) and then water for Dave.
We walked into Hertz and there were EASILY 50 people ahead of us. We were in for a long wait. Dave did surprisingly well waiting although he was starting to get agitated toward the tail end. 1.5 hours after we landed, we were finally on our way to Whole Foods. We got to the store, which was so crowded and finally were on our way to the hotel.
Getting to the hotel was a bit of a trek and once we arrived, at 3pm, they told us our room wasn’t quite ready. I was beyond exhausted, sweating profusely , and deeply concerned about the food in this hot heat. Thankfully the hotel not only took our bags, but our kind bellman agreed to store the food in the freezer and fridge until we could get to the room.
FINALLY, all of my concerns dissipated and I was starting to try and soak in my vacation and the paradise island I was on. The only problem at this juncture was my back. All of the lifting, pulling, carrying heavy luggage, along with the long plane journey, had me in more pain than usual. I could feel my back getting inflamed with each passing moment.
We finally got called to our room and the bellman brought up our luggage. I was frantically pulling food items out of bags to refrigerate. I had no extra time. We had to store the food, make Dave’s dinner and go back to where we had just come from (Waikiki) to meet my family for dinner. The drive from Waikiki (where Aimee and fam was staying) to our timeshare was only about 20 minutes. However, Oahu, which I lovingly liken to LA (because it truly reminds me of LA with all the wonderful amenities and restaurants, but also equal amounts of people), also had similar traffic patterns. We logged our journey back to the restaurant and it was OVER an hour to go back. I was determined to still do it and continued to feverishly unpack. But with each passing moment, my back was getting worse and worse. I started to have visions of it going out again and me being stuck, unable to move or walk. I was in tears at the decision but I knew I had to just lie down and ice and call my sister and give her the bad news.
My Mom was upset. She wanted to be at that first dinner even moreso than I. But the thought of driving a ‘big car’ (not sure how a Jeep Grand Cherokee got into the category of ‘big’ but I guess compared to my Mom’s mini Cooper, it was a monstrosity), on the freeway, and in traffic, to the crowded Waikiki beach with no parking, was giving my Mom pause. The kicker though was the thought of driving back in the dark. It’s become increasingly difficult for her to see, and drive at night (a fear I completely understand). So with great disappointment, my Mom decided to stay with Dave and I. I now know that this whole scenario was a God thing. If there is one thing I’ve learned in my life, it’s that God will sometime use other circumstances, to guide us in the paths we should take. Trust me on this, no matter how badly you want to do something, if there is something trying to block your way, it is most likely a sign that you should listen to. And, in this case, I’m so glad I did.
Beyond exhaustion, but back freshly numb from full ice treatment, we realized we had not really eaten much. I think I had a couple fruit gummies on the airplane and some cheese as a snack that Southwest generously provided, about 12 hours prior. So we decided to leave the room the mess that it was and head down to the lobby to get a quick appetizer and drink before finishing to unpack.
We walked through the beautiful grounds over to the main hotel. We were in the building next to the main part, where the restaurants and pools were. It was a very short and beautiful walk and I found myself so excited to see the beautiful landscape of where we were staying. We went to look at the ‘expensive’ restaurant and the description of the available food items pulled us in. We decided, ‘we are on vacation so let’s just splurge.’ We sat down and ordered a rum runner and pineapple margarita and an order of the ‘ahi carpaccio.’ While we waited we noticed Dave was acting ‘off.’ It was probably 6:30 pm by this time (9:30 pm his time). It was a very long and stressful day, not to mention he’d had little sleep the night before. All of a sudden I realized I didn’t have his ‘magic’ drops. His brilliant doctor had prescribed an amazing supplement, that we think (at least to this point), has actually stopped seizures from occurring. There have been 2 instances with me and 1 instance with Garritt, when we were certain he was about to have a seizure. We gave him 2 dropperfuls of this magic potion and Dave never had seizures. So when I saw Dave acting weird, I realized that I left the drops in the room. My Mom had the same knowledge I did and said, ‘should I go get the drops?’ Yes, I told her, please and hurry.
While I waited with Dave, he all of a sudden, jumped up and screamed at me, “BATHROOM!” I raced to follow him and we found a bathroom. He went but was acting really strange. He was bending over, and that is what happens right before a seizure. I was starting to worry. He finished and seemed to be okay again. I had him wash up and then we returned to our table. I sat down to find my yummy ahi and the amazing drink that I had ordered. But before I was able to start, I looked over at Dave. He was bending over again and I knew what was coming. I was searching for my Mom, where in the hell did she go? She’d been gone a long time and I was frantic. I KNEW what was about to happen. I was trying to figure out how to finagle the upcoming torture. We were on concrete floor and Dave was sitting in a wire chair. My back, numbness starting to fade, and I braced ourselves for what was coming. I stood next to Dave, holding him upright but bracing him for what was forthcoming. The sun was shining brightly on Dave, and me, so while I cradled his head and pressed my body up against his side, I tried to also hold his hat over his eyes.
He started to stare straight ahead. And then his head started to slowly turn to the left and then cock in an upward fashion. His eyes were laser focused to the sky. His whole body started to shake. Limbs were contorted and shaking in every direction. His skin turned white and looked almost translucent against the beating sun. His skin started to turn purple and he was gagging on the spit coming out of his mouth. I just kept holding tightly and saying over and over, “it’s ok baby, it’s ok, Mommy has you,” while everyone around us just watched. After about a minute or so he started to come out of it, and a man from the next table finally came over and said, “is there anything we can do?” I said, “yes please see if there is a wheelchair and ask someone for a wet cloth.” I stood there, what seemed like forever (especially on my back), waiting for them to come. My Mom was still nowhere to be found. Finally two men and a lady (I think manager of the property and EMT type guys from the hotel), came over with a wheelchair. It took both men to lift Dave’s lifeless body into the chair. He was always out of it after a seizure but this one really took a toll. It would be a long time, for him at least, to come back out of it. My Mom finally got back to the table. I so wanted my drink and they said they would pack the food but couldn’t give us the drinks. My Mom stayed to handle all of that and I walked back, with the lady and the 2 men, to our building. We went up the elevator and down the hall towards our unit. They wheeled Dave in for me and the men again helped to lift him to the bed. It wasn’t until that point, that Dave, dazed and confused, briefly opened his eyes. I thanked everyone profusely and escorted them out.
I got Dave a cold cloth and a blanket and told him to just sleep (which he pretty much was at this point). My Mom came in with the ahi. I had seen flies landing on it earlier and at this point, I wasn’t hungry anymore anyway. I went to lay on the bed next to Dave, numb, and feeling the depression start to sink in. I didn’t want to eat, I didn’t think I could sleep. I wanted to cry but nothing came out. I just layed on the bed and stared into space. Here I was, in paradise and also in my own private hell.
This morning, I woke, and my reality smacked me in my face. This is our life. I was so excited to get to my island, to my paradise, to relax and recharge. The last 6 months I’d been sick most of the time. And then the last 2 months I’d been laid up with my back. I was excited for this trip. I was so excited to get back to our ‘once a year island vacation’ with my boy, my favorite person to travel with. And then I started to realize the reality of my life. I cannot escape what we deal with. There is no ‘paradise’ where we can hide from these trials. Autism, I have been able to endure and deal with, on vacation, over the last decade. But this monster of epilepsy is so much bigger. And there is nowhere to run OR hide from this one. Even in my paradise, hell is waiting just around the corner…