This was two posts, but I just put them together for a long read.
We have been traveling more. Last summer, we planned a road trip for the first time. We had a lot of stops, and a few big way points that kept us going. In 10 days, we went to Monterey, then LegoLand, through Joshua Tree National Park, to Arizona to see cousins, then back through Morro Bay. It went much better than we expected! Everyone had fun, even with challenges. Two weeks later, we flew to Texas for our first visit with the big cousins. It was a great summer!
In January, we went to Disneyland. We almost didn’t make it. Scarlett got sick with her first ear infection - both ears and high fever. Antibiotics were hard to come by in the days between Christmas and New Years and we barely got them in time to get her back on track. Then Chris and I started to feel sick. We each had a bad day or two, and started to look at canceling. New Year's Eve came and we were on the road to recovery, no fevers and just a little stuffy, so the trip was on. The weather was terrible at home and we knew the trip would be a wet one, but we had ponchos and extra shoes. Then, our roof sprung a leak; thankfully it was patch-able. We were packed and had several hard-to-get reservations. We got on the plane and were ready for fun! We were worried about Scarlett’s ears on the plane, so Chris was watching her carefully during takeoff, when suddenly his own eardrum burst! He was in a lot of pain and could not really hear from one side. He was a little off his game, but we made it work.
We had a fabulous time, despite the heavy rain. It was Evie’s 4th birthday. We made sure each of the kids got to do their one big favorite - Evie met Mirabel from Encanto; Benny rode all the “mountains”, since he was tall enough now; and Scarlett met Judy Hopps. Finding characters between the rainstorms was tricky, but we did it! Chris was okay, and went to the doctor when he got home. No damage, though his hearing took several weeks to fully recover.
We felt brave, so we decided to go bigger this summer. We try to plan around big stops, like national parks, theme parks, visiting family or touristy spots that we think the kids will enjoy, with no more than 5-6 hours of driving each day, and at least one “play” day between long drives. We got Scarlett the Access disability lifetime pass for National Parks, so we decided to add a few of them to our itinerary.
This year’s trip started with two days to get to Las Vegas. We did a full day bus tour from there to the West Rim of the Grand Canyon, then spent 4th of July there. It was about 115 degrees most of the time we were there. The next day, we drove to Zion National Park. We rode the bus and did a short hike, but the heat, late start and crowds didn’t give us much time to explore. We drove from there to Bryce Canyon the next day. The kids were burned out that day and mostly stayed in the van, but Chris and I really enjoyed every stop.
Scarlett uses a stroller-style wheelchair for big outings. She has really low endurance, especially in the heat, and can be unstable walking on uneven surfaces or in crowds. She loves to watch and explore from the chair, and pushing her through most of the walking paces saves her energy for doing more in a day, so it goes on adventures with us. We tried to research the most accessible way to enjoy the parks, but some of what we were told did not pan out…like the paved train in Zion that ended after a short distance and had a sandy walk to the river, and then a hard-packed dirt section. Pushing a 100-pound child in a 50+ pound chair in 100 degree heat was not ideal. And let me tell you, there was not a single Uber driver in Vegas that was happy to see us at pick up, but too bad. The staff at the glass overlook bridge at the Grand Canyon let us skip the long line with the wheelchair and cleared the bridge for us to have it to ourselves for a few minutes, but the site was otherwise really not wheelchair-friendly.
|Pushing one and carrying the other through Zion|
As we packed to leave AZ, we had another unwelcome surprise - Chris got stung by a scorpion. We tried not to panic, but it was scary. He called our doctor back in CA and they said they didn’t know, go to the ER…while the local AZ people said ice and pain medication, so that’s what he did. His whole arm burned for a day or two, and feeling fully returned after about 4 days. Quite the parting gift from the desert; we weren’t sad to say goodbye!
Then, we surprised the kids with going back to Disneyland. We knew we would be passing by, and needed a waypoint before we were ready for our last stop. Our last trip had been rainy…so we went for it. I had secretly packed all our Mickey paraphernalia into a bag that was stuffed under the seat of the van. They didn’t know where we were headed until we walked in. It was our first time trying it with no extra adult - just the 5 of us and the Disability Access Service that lets us move through the park a little easier. It was hot but we had a ton of fun. We really can't beat a Disney vacation for Scarlett - everything is done so well for her, and it's fun for us all.
Our final stop was at a friend’s in Southern California, and then headed back home. We were on the road for 16 days total. It was a great adventure, and despite the heat, crowds, scorpions and other stuff, the kids had so much fun. We are already thinking ahead about next summer’s adventure.
We planned a trip to play in the snow during Spring Break. We found a cabin in a quiet mountain neighborhood and planned to stay a few days to sled, tube and sight-see for a few days before the snow melted. My parents were going to come, but my mom was getting her first dose of chemo the day before, and she was worried that she would be too sick to enjoy herself. She was going to come for just a day, but decided it was best to stay home. The kids were already building snowmen in their heads, so we went. We unearthed our old snow gear, borrowed to fill in for the kids and drove out to the mountains. We got settled into the house, played in the small drifts still piled around the house and settled in for the night.
The bedrooms were downstairs from the main part of the house. The house was dog-friendly, so we had our old blind and deaf puppy Cosmo along for the ride. We used the provided baby gate to block him from falling down the stairs. The property owners had warned us to be cautious as several bears had been sighted, hungrily coming out of hibernation. We kept him close by on a leash; he didn’t want to wander - he had no patience for the cold ground. As usual, the little kids shared a room, and Scarlett had her own. There was a door in her room, and we laughed that at least it was barricaded by a snow drift…and still dragged a dresser in front of it. We locked up, tucked everyone in and went to bed around 10.
I don’t remember exactly how the next steps went, but they involved me screaming for Chris, him running up and down the street looking for her. We had only been there a few hours, so we didn’t know much about where we were. We checked her room, every room, and around the house. Her shoes were gone, but her coat was still there. Her favorite toys were still tucked in the blankets. The other kids were sound asleep in the other room. But she was gone.
There were no other cars. A few dim lights on the surrounding cabins. No other people we had seen; the snow season was nearly over, so this neighborhood of cabins was mostly deserted, waiting for the browning snow to melt and make way for the summer lake people. No footprints, no sounds.
She has done this before, but never like this. At home we have locks, alarms, cameras; she finds a way through. We have made the fences taller, added more locks and told every neighbor in the vicinity that they they should take her hand and bring her home if they see her alone. She is on file with the police as “At Risk” with their Autism outreach program, even though she doesn’t have Autism. But this time, we were away from home, it was cold, it was the middle of the night and there were maybe bears.
Everytime she has run off, we have taken the same roles; it’s faster and more efficient if we do the same thing, and honestly, we do what we both are capable of in the moment. Chris grabbed his boots and car keys and started driving; I called 911. I tried to stay calm as I gave a report - my disabled daughter had left the house. She is wearing pink and purple tie dye pajamas, pink shoes and no jacket that I know of. She’s 12, blond hair, blue eyes.
They never understand immediately. They tell me to look in the house; I do. I am running up the stairs, down the stairs, from room to room, opening every closet, from one side of the street to the other. There was nothing to see. The 911 operator is having a hard time hearing me; reception is poor in the mountains. They keep asking if she met up with someone, if she ran away. They don’t understand that she has no way to contact anyone, no friends to call, no interest in going away with someone else. She’s 12 on the outside, but maybe 4 on the inside. She doesn’t understand what could happen. She takes the opportunity and just goes.
The police officer is having such a hard time hearing me that we resort to texting. I can hear them, but they can’t hear me, so I text my responses. I text them a picture of her that I had taken earlier in the evening. I text some of the big medical things - had a brain tumor, has a shunt, scars on her head and belly, runs unevenly. They keep asking if she has any friends who would drive to pick her up, or if she went to a neighbor’s house, or if she is hiding. I respond no every time.
Then they tell me it might be another 45 mins until someone can get to us. I became hysterical. Please, please, I am begging you, please send someone to help us. They say they will try, just wait on the phone.
Luckily, it didn’t take that long; maybe 20 minutes. An officer pulls up in front of the cabin. He is scoping me out; I have seen enough TV and movies to know what they are thinking. I describe what I know, he searches the house again, including under the beds where the little ones are sleeping. He sees her bed full of stuffed animals and crayons, her jacket on the hook. He says more are coming, but they have several calls simultaneously, so it might be awhile. I found out after it was all over that they had gotten two other missing child calls at almost the same time as mine, and both others were more suspicious, which led them to scrutinize my call.
The police officer walked around the cabin and surrounding houses. A fire truck came eventually. They checked in with the officer, and then headed off to search. It had been about an hour since I woke up; we don’t know how long since she had been gone. They told me that she was being submitted to the National Missing Children’s registry, and that shortly, they would activate the county’s volunteer search and rescue. He tried to reassure me that they had the biggest, most robust team in the state…somehow, it didn’t help.
Chris drove by intermittently as he circled through the dark streets. He told me later that he had scraped up his arms and legs jumping down ravines and climbing back up any time he thought he saw something. He was driving around with the windows open and his eyes on the snow, watching and listening. We texted every few minutes:
Police are here.
Firetruck is looking.
The officers were looking and left me. I didn’t know where to be. Outside it was freezing, but it was the only way to see and hear anything. I saw in a rocking chair on the porch with blankets wrapped around me until I was too cold. Inside, the dog demanded my attention; he didn’t care what else was happening, or maybe he sensed how unsettled I was and was trying his best to be close. I walked him up and down the driveway mindlessly. I made tea and sat more. Evie woke up, because she almost always wakes up in the night. She cried for me, like she always did, until I told her what was happening, that I was waiting to talk to the police, and she could just stay awake and sit on the couch. She sat almost silently with the dog, waiting.
The thoughts that go through my head during these long, intense moments are not healthy. I’m not a calm or particularly patient person by nature; my anxiety, strengthened by the events of the last 13 years, takes over pretty quickly and my mind races. I am exhausted and feel like I will never sleep again. I worry about all the things that I am going to have to do - who I have to tell, what people will think, the terrible things I am going to have to see, say and do if she is not found safely.
I don’t remember exactly how it happened, but the police officer came back, and told me they had her. The firefighters had found her, running in the middle of the dark road on the other side of the neighborhood. She was okay. She kept running away from them; I told him to tell them to GRAB HER.
I texted Chris and told him to get back, we had her.
Before we saw her, they asked if we wanted an ambulance; they would take a while to arrive, so we needed to get them started. We said yes. She had been gone at least 2 hours, hypothermia was a major concern.
The firetruck pulled up, and they hoisted her down from the seat. She jogged over to us and said, “I’m so cold.”
We brought her in, covered her with blankets and made her some cocoa. I slipped her wet shoes off - no socks - and tried to warm her freezing feet. As soon as the officers saw us talk to her, heard from us that her broken, slurred words were her typical baseline, watched her crawl into my lap and bury her face in my arm, they relaxed. They finally understood. They shifted from suspicious of us to sorry for us.
She had fallen on her hands and knees at some point, but was unhurt. She complained of being cold, but had no signs of hypothermia or other injury. The ambulance arrived, and she refused to allow them to touch her; we apologized for bringing them all the way out for nothing. They checked her over, saw that she was stable and let us sign off that we had rejected care. We thanked everyone for their help and they filed out.
We washed her hands and feet and put on clean pajamas. We sat numb for a while. We watched some mindless TV to help us calm down. We finally ambled toward bed again around 5 am, me in bed with Scarlett and Chris with Evie. Benny never woke up; he is the sleeping champion in our house.
We woke up late the next morning, not sure how to proceed. There wasn’t much else to do, so we just continued with our plans….snow play, pizza, carrots for the Easter Bunny. We called a few people to just tell the story; it’s easier to tell it after, when it’s incredulous and funny that something so ridiculous has happened, yet again.
And then we go back to our lives, thinking it won’t happen again, it couldn’t possibly, that we will be better next time.
But, she did it again.