Monday, October 16, 2023

Thirteen - Part 5 - Emergency Again

 A few weeks into the new medication, she complained of stomach pain a few times. We dismissed it. A few days later, she had a painful episode at school and they called us to pick her up; her school aide mentioned it seemed like constipation. We attempted to treat for that with fluids and juice. Another episode of pain here and there, both at home and school, and we tried other remedies. One day, it seemed so bad that we gave her a suppository to encourage movement. Every time, she seemed fine after a while.

When the neurology appointment finally came, Chris pushed that we needed her off the medication if seizures were not likely to recur, since it was causing constipation. The doctor thought that was strange; constipation is not a common side effect of Keppra. They want her to stay on it, so they prescribed liquid instead to see if that helped ease her discomfort.

A few days later, she started again. It was Monday evening, and we were trying to get everyone into bed. She sat on the couch and just screamed. We tried drinks of water, heating pad, rubbing her belly, snacks to distract her, but nothing calmed her down. She can’t really communicate specifics, but she can clearly say, “MY TUMMY HURTS!” and then she screams. After an hour, we were both exasperated and gave in; if we couldn’t help, we had to take her to the hospital.

We hated this idea; it was late, we have been so, so busy and didn’t need an all night constipation monitoring trip. She seemed in pain, and we figured she needed an ultrasound or x-ray to rule out anything more serious. I dressed her, Chris packed a bag and then took off with her into the night. 

They waited in the ER all night. She was given some pain medication and quieted down, but still was uncomfortable. I tried to sleep while the kids slept, worrying about what a mess I would be the next day at work. I woke at 5, and started to strategize with Chris, who had not slept at all. 

They still hadn’t had an ultrasound, but they were waiting for one. If he couldn’t leave the hospital by 6, there was no way for him to get home in time for me to get to work in time. The kids needed to get to school, too. Another crazy night, another round of emergency sub plans; I would head in after lunch for a half-day.

I got Benny and Evie to school and picked up around the house while I waited for news. The ultrasound finally analyzed, they had an inkling of a problem - she had gallstones, and they could not rule out her appendix. Appendix I could understand, but gallstones?! Straight out of left field.

The details began to come together. Gallstones, and gallbladder was badly infected, causing pain. She needed it removed. She was being admitted for surgery. Because of her shunt, she needed IV antibiotics to prevent the infection in her abdomen from spreading to the tubing that leads to her brain. Her current shunt has lasted a notable many years and any infection could lead to needing it replaced.

We felt terrible. We had been dismissing her pain for days and weeks. We had been treating her for constipation, which was one issue, but was likely not the root cause of her pain. We had been impatient and irritated with her complaints, overwhelmed by her being sent home from school and frustrated with her inability to stay calm about what we thought was minor discomfort. She historically responds very dramatically to minor issues, so we just thought she was putting on a show for attention…poor girl. I still feel terrible. It’s one of the issues we deal with regularly, her being unable to clearly communicate what she thinks, feels, needs or wants. We try to interpret what is happening, take her words, drawings, actions and routines into account to figure it out, and sometimes we miss the mark. Usually it is something minor; this was serious.

I met Chris at the hospital after working for a few hours. He hadn’t slept for over 40 hours and was exhausted. I got there just in time to move Scarlett from the ER to the surgical floor; she would have surgery sometime the following morning. I got reacquainted with the inpatient procedures and spaces - she hadn’t been admitted in many years. She got a “dinner” tray of clear fluids and I settled in for a night of semi-restful sleep on the same fold-out chairs that I had spent weeks in almost 13 years ago.

Surgery happened first thing the next morning. She was prepped and ready by 8:00. We woke early when the morning nurse was doing vitals. As soon as she saw me awake, the nurse introduced herself, gave me a quick rundown of the plan, and then told me she remembered us. She had been one of the nurses who cared for Scarlett in the days before she went into surgery, in January 2011, the last time we were on that floor. She remembered Scarlett, and me, very vividly, and was so happy to see how well she was doing (other than the gallbladder part!) 

We got down to the surgical waiting room, and the doctor came out to ask her which bandaids she wanted - she chose princesses. We gave her a pre-anesthesia sedative - she gets very anxious with any kind of procedure now, so medicating her before putting on a mask or starting a procedure that will scare her is calmer and safer. Once she was asleep, I walked to the cafeteria for some coffee.

Surgery took about 2 hours. I met her back in the recovery room. A nurse came in while we were waiting, and asked if this was Scarlett. She said, “She’s been here before, right?” I said yes, but it has been quite a while. She responded, “I remember. She had two EVDs (external ventricular drains - “brain drains”) in the window space of the PICU.” I was shocked - that was exactly right, almost 13 years ago. I confirmed that this was in fact her, and we joked that it must have been quite an experience for her to remember after all this time.

She had 4 small incisions on her belly that seemed to cause her very little discomfort. The surgeon explained that there was a lot of adhesions throughout her abdomen from her shunt, so it had been rather challenging to reach her gallbladder, so despite the small holes, a lot had happened inside. He was not as reassuring about solving her pain; he hoped that this would help, but pain is hard to track and he couldn’t guarantee this would be the end.

I asked what in her history might have led to this; surely something so strange was caused by some medication, procedure or illness in her complex medical history….but no. They insisted that is was most likely unrelated, just a fluke. Gallbladder issues are becoming more common, especially among females. I am not fully convinced that this is the end of that, but I haven’t had a chance to dig further.

The rest of the hospital stay was uneventful. Two days of IV antibiotics and pain management, which Scarlett spent primarily in bed watching her tablet and coloring. She loved having her meals delivered on demand and getting to wear a hospital gown that matched the walls and curtains.

She came home on Friday. Within 5 minutes of getting in, she ran to the trampoline and started jumping. She was in no pain and we gave no pain medication after discharge, not even Motrin. She went back to school the following Monday and has been pain free so far. She might have some digestive issues related to her lack of gallbladder as time goes on, but should otherwise be okay.

Who knows what comes next. If the year behind us has taught us anything, it is to expect the unexpected, be ready for anything, and lock the door.

Thirteen - Part 4 - Seizure

 The day before school starts is a crazy day for teachers. We are trying to get everything ready to welcome new students, adjusting out of our summer lives and back to work life.

I was just finishing up some paperwork or laminating. My phone dinged and I casually looked over at it. Our doorbell camera sensed a passing vehicle - a firetruck. I thought, “Oh, our poor neighbors! I wonder who is having a problem.” And then, I noticed the very end of the clip - a firefighter jumping off the back of the truck in front of the house.

I clicked the notification and opened the app. The camera showed a firefighter running up the walkway to the front door. I swiped it away and called Chris.

I don’t know how he is always so calm. My reaction to stress is so very opposite, I can’t always process his reactions. My brain is screaming, my heart is racing, my voice is loud, and I am trying to slow down enough to make even one concrete decision. I often cry, or freeze up. His brain takes in the information and sorts it out, makes quick decisions, remembers details and files through every past situation for what we need.

So, I sputter out, “What is happening?!” and he responds in an even tone, “You should come now. Scarlett is having a seizure. The ambulance is here and we are going to the hospital.You can meet us there.”

I grab my bag and run. I lock my classroom door and debate if I should yell down the hall that I have to leave; I decide not to, since I don’t want to throw everyone’s day into chaos. I run over to the next room and just blurt out something like, “I have to go, my daughter is having a seizure.” I run through the office and say it again. I nearly run into the principal, who thankfully knows me well enough to know that when I am running out, something is serious. I tell her I have to go to the hospital. 

I jump in the car and try to get out of the lot without screeching my tires. I made a call and had a substitute teacher arranged before I even got to the freeway.  I hurry to get across several lanes of traffic to the express lane and go as fast as I can.

It’s about 15 miles from work to home, and another 5 miles or so further to the hospital on some of the most traffic-plagued stretches of road in the country, but that day, I lucked out and hit very few snags. I pulled off the highway toward the hospital and the ambulance was directly in front of me. I watch them pull into the emergency room bay, and continue to the parking lot.

I got into the ER as they were assessing her. We are giving her history, automatically regurgitating birthdate, medications, dosages, last doses, last medical visits.

“What seizure medication does she take?”

“None. She hasn’t had a seizure in 9 years.”

She had seizures with the initial tumor at 2 months old, and then at 3 years old, had a mysterious bout with absence seizures, estimated to have been hundreds a day when we finally figured it out. Since those resolved, she has not had any seizures or noticeable neurological disturbances.

This time, she was napping on the couch. Nothing out of the ordinary had been happening, just a normal day. Her caregiver noticed her moving strangely, and quickly recognized it as a seizure. Thankfully she was trained for seizures with a previous client and knew what to do and not to do. Chris arrived home 2 minutes later, and they called 911.

Scarlett’s full body seized violently. When the paramedics arrived, they noticed she was beginning to overheat; they asked Chris to get all the frozen food from our freezer and began to pack them around her body to bring her body temperature down. They administered a nasal medication to stop the seizure. After a few minutes of no change, they gave it again. The seizing finally stopped more than 20 minutes after it began. 

By the time she got to the hospital, she was resting peacefully. Her body temperature had normalized and all her vital signs were normal. Chris took the car and went back home to relieve Briana, who had stayed with Benny and Evie; I settled in for whatever was coming.

Our first instinct is to consider tumors and shunt issues. She got a quick-scan MRI to check for shunt malfunction. She had an x-ray series to rule out any other shunt-related issues. They drew labs - nothing of note. No one says explicitly “No tumor” but I try to tell myself that no news is good news in that department. I asked several times what might bring this on if it isn’t that; no one has a clear answer for me. Someone mentions that it can just happen sometimes in puberty. We’re definitely in that zone, so maybe it’s a factor, but I haven’t ever heard of seizures being a typical issue in puberty…is she “lucky” or is there some correlation to something else? No one knows.  I ask when we will see a neurologist; they are noncommittal.

They decide they have to rule out a urinary tract infection; again, since when is a 20+ minute seizure a side effect of UTI? But we have to rule it out, and that means we need a urine sample.  So, I try to get her to drink. We get some dinner before the cafeteria closes. I get juice and a popsicle from the nurse, and then ice water. I give sips and more sips. She notoriously avoids using the bathroom when she doesn’t want to. After a while and a few drinks, I try to get her to the bathroom. We hobble our way through the ER to the restroom and we try to collect a sample…but nothing. I ask about the neurologist. They say that meds have been ordered - Scarlett will start Keppra. I pause, because no one has talked to us about this at all. She was on this before, and it didn’t work; different year, different seizures, but same kid. I asked if we needed to be concerned with interactions with any of her other medications. The nurse, who I had really liked and had been chatting with a lot, lost me when he casually said, “Oh, probably not. Everyone gets Keppra.” No, everyone doesn’t, and not with a history like Scarlett.

More fluids, another try, nothing. It’s getting later and I am getting anxious about school. I had arrangements if needed, but I hated to miss the first day of school. I teach first grade; the first day is a big deal. We decide to hook her up to an IV to push fluids and hurry this along.

We get moved from the big critical care room to a small room. It’s further away from the nurses, so we stop seeing them very often. The next in a series of doctors comes through, and I ask again when I will see a neurologist, I have questions about this medication and feel like this urinary tract infection is a dead end. The doctor tell me that no one from neurology is going to see her, that we will follow up later, and we have to do all the tests before they will consider anything else. 

That was the end of my patience. I was frustrated, tired, cold, and worried. My concerns had been repeatedly minimized. I was anxious about work. I lost my cool with the doctor, snapped at her and then cried about how frustrated I was. “Do you see any other signs of a UTI? Is there any other symptom indicating that might be an issue?” She apologized that I had misunderstood what we were waiting for - anyone who knew anything about a brain tumor - and said we had to rule it out, then left me to wait for pee.

The fluids ran for an hour or so, and Scarlett slept. I write some skeleton of sub plans to relieve myself of the work stress - if I can take that off my plate, just let it go, I can put my focus back where I am now. Work will be fine, the kids will be fine and my coworkers know how to support my students (and know I would never have done it if I didn’t have to!) Letting go of that was a relief.

When the doctor came back, I apologized for my poor response before, and explained why I had felt so pressured to get out as soon as I could. At least now I could just wait.

I gave the fluids about 30 mins, and then made Scarlett wake up to use the bathroom. Finally! Success. We delivered the sample and then waited for results. No surprise, she didn’t have a UTI. Finally, around 11 pm, we were discharged with two new prescriptions - one for daily seizure prevention and one for emergency “rescue” doses to have in case she had another - but no answers about why it happened.

And now, more than 2 months later, we still have no answers. It took over a month to get a new referral for a neurologist and schedule an appointment. She hadn’t needed one in so long that she had been dropped from their rolls. When we finally got the referral, they wanted an EEG; we tried, but Scarlett took one look at the leads to be glued to her head and she threw a tantrum that would not allow it. She is on daily medication until further notice; we have yet to remember the rescue dose when we go anywhere. 

There have been no other seizures. Just a dramatic emergency blip in her timeline, I suppose.

Thirteen - Part 3 - Another Escape

A few weeks passed after returning from the mountains. We told our story to family and a few friends that we saw… “Your spring break looked so fun! I can’t believe how much snow there was!” “Oh, it was great, except for this one part…” My friends at work are just used to my insane stories by this point…just another day for us.

Cosmo had been deteriorating; at 14 years old, he was moving less, eating less and seeming less like himself. He hadn’t slept through the night without needing to go out for months. I was used to his low growl and shifting around that signified I had better get up. I picked him up - he couldn’t reliably walk on the hardwood floors, and turned for the hall.

The light was on.

Scarlett’s light was on. That was never a good sign. Maybe she was coloring on the wall again, or had dumped all the houseplants again. Maybe she was on the trampoline again. I started looking. Not in her room. Not on the couch. Not in the bathroom, or the kitchen. Not on the trampoline.

Here we go again.

I yell for Chris. He comes running. We look on the side of the house and see it…the gate is open. DAMN IT. The gates have combination locks on them to prevent her from opening them. She has never gotten them open. Someone left it open. We run out and look in the front yard - nothing. Down the sidewalk - no sign of her.

Here we go again.

Chris grabs his keys and I grab the phone. I open the camera app and look for her last movements. She walked into the backyard around 11. She looked at the trampoline, looked around once, and ran to the side gate - how did she know it was unlocked this one time? She lifted the latch and went straight through, laughing. She walked out the sidewalk, and ran to the left down the street, and disappeared from view. It had already been over an hour, and we were only just starting to try to catch up to her.

I call 911 and start the same song and dance…me trying not to panic, trying to calmly describe what has happened and what she looks like. I don’t remember how tall she is or her most current weight. I realize then that she is wearing the exact same pajamas as the last time. They take the report, and since we are home, an officer is at the house within a few minutes. I text him the exact same photo I had used the last time - same pajamas, same hair. I quickly inventory her room; as far as I can tell, she didn’t take any shoes.

He checks the house, looks through her room and the closets. He flashes his light under the trampoline and around the shed. He tells me they have officers out looking.

At some point, another officer arrives. They talk to each other under their breath in the front yard, and he asks me the same questions again…and then asks if I have dental records.

Again, my TV and movie experience has taught me why police use dental records - to identify dead bodies. I catch my breath. My brain is screaming, “ARE WE IDENTIFYING A DEAD BODY?” Somehow I say they exist, but we don’t have them at home.

Do other people have those kinds of dental records at home? I have a lot of strange imaging - MRIs, 3d CT scans - but no dental records.

The officers eventually have everything they need from me and say they are going out looking. I see police cars pass our street every few minutes, search lights going down our small street. They come by, stop in front of the house, and then keep going. It was painfully quiet in the house. I had nowhere I could go - the younger kids were peacefully sleeping, and I was assigned to stay home “in case she came back” (which she has no way of doing). It felt wrong to scroll on my phone. I realized that no matter what happened, I would not be any shape to be functional at work in the morning, so I put in for a substitute for my class and tried to focus on writing somewhat coherent sub plans.

As we rehashed the night later, Chris told me what it was like for him this time around. He drove around our neighborhood looking for clues. He flashed his phone flashlight into parked cars. He searched the playground that we frequently visit, where he ran into suspicious police officers and had to explain who he was and why he was there. He drove around to the big furniture store around the corner and dug through the dumpsters of cardboard. He watched for anything suspicious, any clue that there was a reason to look closer. He saw nothing. Again, we texted back and forth, called every once in a while to hear each other’s voice and try to think of anything else we could do. At one point, I thought she might have taken her tablet - it looked like she was holding it in the video footage. If she had it, we could use the device tracker to find it. We began frantically trying to figure out which account and log in would allow us to track the device…only to hear the tablet alarm from her blankets.

Minutes and then hours passed. Sometime after 2am - she had been gone 3 hours already - I saw another police officer outside. I walked out to see if there was any update. It was the first female officer I had seen, and she was more gentle with me. She told me that, luckily, it was pretty quiet in the rest of the area, so they had the entire city department out looking, and had made a report again to the National Missing Children’s registry. Some kind of accomplishment to be on it twice in a month.

The officer then brought my attention to the sound that I had not noticed. A helicopter was approaching overhead. She said, “They're here for us.” A police car at the end of our street was signaling with lights to the helicopter team from the California Highway Patrol, and they were searching the neighborhood from above.

She then told me she would be looking in the yards up and down our street, just to be sure. I thanked her, and went back inside to sit and wait.

Not long after, I heard steps and radio voices on the porch. I opened the door before she could even knock. She was talking but her face told me they had found her. In her radio talk, I heard them talk about stopping the trains; she had been spotted on the Union Pacific tracks more than a mile from our house.

Here’s what I pieced together: Scarlett ran for several blocks with no shoes or jacket. At some point as she wound her way through the neighborhood, she reached the railroad tracks, and started to follow them.

One of the things the police had done in their search was to alert the unhoused people living in the vicinity. They showed her picture to some of their more reliable “sources” from the homeless encampments nearby. One of the people they contacted saw her. Several of the people she encountered along the tracks had tried to stop her, but she kept running. One man finally got her to stop, knew who she was from the description and contacted the police. She was cold, and he gave her his sweatshirt while they waited for the police to come. She was not hurt.. It had been almost 4 hours since she ran out the yard into the dark.

Has any child ever been so unlucky and lucky at the same time?

When the officer at the house described this to me, I was completely floored and in shock. I sat in the doorway shaking. I laughed. I swore. I called Chris to come back. The police had an emergency hold put on the trains; it is a busy section headed to the Oakland shipping piers, and trains pass regularly. Scarlett was retrieved by the police and brought home in the front seat of a police car. When the car pulled up, I looked through the windshield and saw her. She just smiled. When I opened the door, she said, “I’m so sorry” in her playful way. I carried her in to the couch to inspect her and see what needed to be done next.

She smelled like a combination of putrid sweat, urine and smoke thanks to the sweatshirt that had been given to her. She was totally unhurt - sore feet (NO SHOES!!), cold, but not a single cut or scrape. We went through the motions of calming her, warming her up, checking her over and trying to get her to tell us if she was hurt. The only things she said were, “I’m so cold,” and “I’m so sorry.” The police were visibly relieved and left us quickly once they saw that she was all in one piece. We promised, yet again, that we would add more safety measures to the house, and profusely thanked them for their help. I mentioned to the one officer how much I had appreciated her calm and understanding, since other officers had asked for dental records and in previous episodes, made comments about our poor parenting. She apologized for them unnecessarily, and reassured me that she saw what was happening and knew we had done what we could.

We gave Scarlett a warm bath and packed her into bed. Chris fell asleep, but I was up for the day. When morning came, we let Scarlett sleep but got the other kids off to school. I started searching and calling security alarm companies to see if anything could help. The technicians I talked to said they didn’t really have anything that would improve on the cheap magnetic alarms we already had; they could better protect from people getting in, but weren’t sure how to better secure us from having anyone leave.

We have upgraded our protective layers many, many times. When she first started opening doors to go out - even before she could walk, she would stand to open, then crawl out - doorknob baby guards stopped her. When she could stand and figured out the doorknob locks, we added chain locks to the top of the doors. When she figured out how to drag a chair over (or got help from a very sweet but misguided little brother), we added a spring-loaded security lock (the best so far, still unbreached) and a small, loud “bing bong” alarm to the front door. After this, we added a wireless doorbell to the back door and put the alarm box in our bedroom.

When she tried to climb the fence and pulled a large section of it down, we replaced the fence with taller panels. When she kicked out the old boards on the original gates, we replaced them with all new gates, and added the combination locks that she could not open. We added motion-sense cameras to the front door, driveway, backyard, and both sides of our 1200 sq. ft. house, as well as inside the kitchen. We give her high dose, extended release melatonin, by prescription, to help her settle into sleep more reliably; she often just entertains herself well into the early morning if we don’t catch her.

We have a Jiobit GPS tracker that we have her wear when we go out. We have notified every neighbor, school support, and every relative, though they have all been through it with us (or when they have tried to keep her on their own). When we are out, we are vigilant; anyone with us knows we have an eye on her at all times, check in with each other before one of us leaves the area, and will jump up and run if we think she has wandered.

And she still gets out. We live with the daily cacophony of noise if any door is opened, constant phone alerts for motion on our cameras, and a device we try to keep charged and on her, and she still gets out. Inevitably, something goes unchecked, batteries die or we just miss something once in a while. Nine times out of ten, she won’t do anything. We let our guard down unintentionally, and then it happens.

A few weeks ago, we found her at midnight, stuck on top of the fence. She had gone out - the batteries on the door alarm were out and we hadn’t noticed - and she found the ladder had been left out from tree trimming a few days prior. She carried the ladder, set it up and tried to climb over the fence, but got stuck. She was there for several minutes before her screams woke us (and somehow not our neighbors, whose bedroom window is equidistant.) We got her down, brought her in, and just wordlessly put her to bed.

When we have traveled since these events, we take the plug-in doorbell alarms with us. We use painter’s tape to attach them temporarily, and set up an alarm on every door. This worked well for hotels and rental houses across our road trip, in hotels for short stays and in the cabin at family camp. We often set up "boobytraps" of chairs or tables after she is in bed - at least to slow her down, maybe to deter her. When we went camping, both Chris and I had trouble sleeping, worried she would try to get out of our tent. We ended up using a twist tie from something to tie the zippers together so, if she did try to get out, at least she would likely be noisy and wake us up. She never once tried to get out on any of our recent trips, at least that we know of.

She remembers now. If we mention her running away, she knows it was bad. I think she remembers feeling unsafe, even if she is not sure why. She feels embarrassed and insists she won’t do it. But I don’t think that, when the opportunity presents itself, the past memory will stop her.

It is mentally and emotionally exhausting to be on high alert every night. Any sound in the night makes my heart race. We frequently get out of bed before falling asleep to do one last check. The first thing I do every time I get up is check her door. For now, we have enough safety nets that I can sleep. At some point in the future, I expect she will do it again, and we will be thrust back into the panic again. And, hopefully, we will find her.

Thirteen - Part 2 - Trips and Escapes

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

We left Bryce Canyon and headed to Sedona, stopping at Horseshoe Bend. We tried to do Slide Rock Park, but it was just too much for us to manage for more than a few minutes. We got to our rented house in Arizona and played with cousins for a few days, and made a wise trip to Great Wolf Lodge for the day - the house had a pool, but it was too hot to use it, so we enjoyed having some freedom at the indoor water park. Benny especially enjoyed the big slides, and Scarlett floated around the lazy river over and over and over.

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.

Around midnight, I woke up suddenly. My mom brain knew something wasn’t right. I jumped up and immediately noticed that there was a light in the hall. Scarlett’s door was open. I ran up and was horrified to see the baby gate was open. The front door was wide open. She was gone. 

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.

Thirteen - part 1

We have come around the sun a few times since the last time I wrote; Scarlett is thirteen this week!

Scarlett at thirteen is probably the best Scarlett yet. She is funny, silly, independent in her own way and fascinating to know. Like all teenagers, she is aching to find ways to be her own person, to push the boundaries she has known and to try new things. She loves a good outfit - usually monochromatic - and has strong opinions about how her hair should be. She carries a Pokemon backpack with her most of the time - sometimes with snacks, sometimes with doll clothes. She loves her dolls and dresses them for occasions, often to match her own clothes if she can, and packs bags for them for our vacations, complete with bottles. She is still deeply attached to her favorite stuffed toy, Judy Hopps from Zootopia. Judy goes everywhere with her, and “waves” to people she passes.

The last year has been tumultuous for Scarlett - or for us - and I spent the last few weeks thinking about how to manage it. I started writing here 13 years ago to keep track of what was happening, and try to help explain and connect with others. The last year might be the most traumatic and challenging we have had since her first year, so I find myself back to needing to write it to remember it, to document it for ourselves, to share it so that anyone who wants to can try to understand the scope of what it means to travel the road of survivorship. I decided to write it in a few parts, so here is the disclaimer: There is a lot of good, and then things get a little dark, but she is okay. She is, in fact, great, as are the rest of us. So, if you decide to read further, know that we come out the other side okay.

She loves her brother and sister. Benny is 8 and Evie is 4. They are her biggest cheerleaders, despite the frequent irritation they all cause each other. Siblings will be siblings. They are learning how to engage with her, and watching them use the things they learn from us and her therapists to get her attention and include her in their games warms my heart. She is not alone.

It’s hard to describe her communication. She prefers to speak to communicate her thoughts, but she understands us better when we include sign language; unfortunately, she only has that from us at home, so she makes due everywhere else. She got new hearing aids this year that connect with Bluetooth to her tablet, and suddenly, she will wear them everywhere. She went from wearing them about 30 mins at a time, with a fight, to asking for them and keeping them in without issue for full days. She still uses familiar phrases to communicate most of the time, but will use longer sentences with novel ideas and words when she needs to - though we often can’t understand her on the first go. She is very observant and notices what is happening around her. She gets self-conscious of making mistakes and apologizes a lot, sometimes to fill when she isn’t sure what she is supposed to say.

She loves music. She is listening to something most of the time at home, the louder the better. She loves the IHeartRadio Family app on her tablet where she can swipe between channels quickly. She has favorites that we hear her sing along to - One Call Away by Charlie Puth comes up a lot. She loves having a bluetooth speaker to play things LOUD. She carries them with her in backpacks or purses, puts them on the edge of the trampoline and sets them up next to the bathtub. She has gone through several little ones, and bemoans their loss every time one is broken. We keep looking at concerts to take her to, but they are so expensive and crowded I haven’t been brave enough for more than KidzBop. I looked again and again at the Taylor Swift tickets when her tour was coming through, but it seemed like just too much - and then the movie version came! I got tickets for her and I to go this weekend and she loved it. She got dressed up, and the fans there made it so fun for her with dancing, friendship bracelets and lots of compliments on her dress.


Over the last year, she has begun to draw. She used to resist any writing or drawing, color with us for a few minutes at a time in a coloring book or on a restaurant menu but otherwise ignoring crayons. Her OT goals still include writing her name legibly and reasonably sized. But, then she discovered Number Blocks. She is OBSESSED. She loved the show for a while, and was happy to see and hear it. And then she started drawing the characters. On paper. On post-its. On books. On the floor, walls and her own skin. Everywhere. More than once we woke up in the night to her awake and drawing all over the walls with crayons, markers, sharpies, chalk, anything she could find.

Mad about a tummy ache

Number Blocks

Scarlett sad, with Number Block #1 sad, because our dog was sick

We repeatedly told her not to draw on the walls, and showed her to use a piece of tape to hang her drawings. She then began to hang every page in her own galleries, and tape together pages to make bigger things. She still drifts to the walls and floor on occasion; it reminds me, I need to add some Magic Erasers to my shopping list…
Number Block in tape

Then she started to build them with other things. Blocks. Strips of paper she cut. Carrots at Disneyland. Train track toys. Boxes. Anything she can get her hands on. She dresses as the characters, and then uses a post-it or paper taped to her shirt as a label. “I’m One!” or “I’m Four!” When she isn’t being another number, she is just 12 - she sticks it to her shirt and makes sure everyone sees it - and we had better call her by that name, too.
Number Block in road tracks

She has filled sketchbook after sketchbook, gone through reams of drawing paper and rolls of tape, and boxes and boxes of markers. She has branched out from only Number Blocks and draws herself and other people and her favorite toys. She uses her drawings to explain how she is feeling - Scarlett with a sad face, Scarlett with a tummy ache (sad face + scribble on belly), Scarlett loves Mommy (many hearts). She draws bunnies, cats, rainbows and her siblings. Sometimes she adds words, or draws what she wants us to know (while I type this, she is sitting beside me drawing the pink cupcakes she wants for her birthday celebration.)

I am so happy she has found this way to express herself. I hope we can continue to foster this skill for function and joy. If she can’t make her mouth say the words she wants to tell me, I am happy to take it in crayons.
Mommy, Scarlett, Benny and Evie