Category Archives: Travel

How Community Matters – 2018 CHASA Family Retreat

When my second daughter was two days old, she had seizures. The seizures were a blessing as they alerted us that something was happening inside her brain. She was transferred to Massachusetts General Hospital, where doctors performed a slew of tests while I remained at Mount Auburn Hospital, just two days post Cesarean birth. By phone, I gave permission for them to run blood work and brain scans. And, by phone, I received a diagnosis, “Your baby had a stroke, left MCA infarct, no midline shift.”

Mia is now nine years old, and thriving in every possible way. In the early days, I shared posts via a private blog to update family and friends and that sustained me while Mia was in the NICU and I was commuting from home where Zoe, my then 2.5 year old was also needing my attention as she wondered, “Where is my baby sister? Why isn’t she home?” Coworkers offered me rides and meals, and even childcare for Zoe in those early days. Friends and family from further away sent moral support.

I was working as a software engineer but had completed a Feldenkrais Method® professional training program prior to having children. In addition to starting Early Intervention services when Mia was one month old, she was in the hands of Sheryl Field, founder of The Field Center for Integrative Development from early days as I knew from my own experience that Feldenkrais would be essential to my daughter’s development.

I may have heard of Children’s Hemiplegia and Stroke Association (CHASA) during Mia’s first year, but was reluctant to join. Based on my Feldenkrais training, I was focused on the best possible outcome for Mia, and didn’t understand the value of community. I only began to engage with the CHASA community as Mia approached twelve months. Her Early Intervention physical therapist recommended a hand brace for her affected right hand. From a Feldenkrais point-of-view, I was opposed to a hand brace. The brace would pull Mia’s thumb out but her muscles would contract more tightly against the brace and worsen her chronically tight and tucked thumb. I found CHASA, and learned about constraint therapy from another mother who turned out to live in a neighboring state, and shared her knowledge generously, including referrals to an orthotist, a physiatrist, and an occupational therapist specializing in constraint therapy. This mother and her daughter visited us, and handed-down many high-quality toys that promoted bimanual use and functional use of an affected hand and arm. It was an amazing gift to make this connection first online, then later in person, to learn from a parent of an older child who was further along the journey.

At that time, the CHASA community existed in a basic website and via a HemiKids listserv. I lurked, occasionally gleaning ideas about new toys, therapies, and possible struggles. After a few years, CHASA Facebook groups were added, and the community had many faces as families started to share photos and videos. In 2013, when Mia was four years old, I created this blog and wrote posts throughout the month of May to raise awareness about pediatric stroke. Through my writing, I connected with more families but it was still online, aside from that one mom from Maine.

I knew that CHASA had family retreats, but when my children were young, the idea of traveling to a family retreat in a southern state in July didn’t seem feasible or appealing to me as a single mother. But, then the 2016 retreat site was announced. Lexington, Kentucky was close enough that we could drive. My kids were seven and nine years old, old enough to make the trip meaningful for them, and enjoyable for me. And it was in ways that I couldn’t have anticipated. My girls met other children from families impacted by hemiplegia or stroke. We all made friends, shared meals, swapped stories, and connected with about four hundred other people from families that had walked some part of our journey. We received and offered support and encouragement.

Now, these CHASA family retreats are every two years. We were lucky that the 2018 retreat was planned for Denton, Texas, near where one of my brothers lives, so we again planned to attend, and combined the retreat with a family visit in Texas. We saw old friends and met new families, including a neuroscientist mom who now works at the U.S. Patent Office, families from all over the U.S. and even one that currently lives in Moscow, Russia. We met kids and young adults who have hemiplegia due to many different causes: stroke, brain tumor and surgery, hemispherectomy for intractible epilepsy, twin-to-twin transfusion with in-the-womb surgery.

We took over a bowling alley as CHASA sponsored more than 100 kids in bowling, a fun activity that is possible with use of one hand, and doesn’t require a ton of walking. We swam with, played cards with, and danced with other families just like ours. We interacted with several service dogs. We heard a talk by and watched a demo of adaptive table tennis with paralympic hopeful, Danny Scrivano, taking on members of the North Texas University Table Tennis Team. We sat in a circle with tens of daughters and their moms talking authentically about aspects of growing up with hemiplegia, how to manage self-care with one hand, or limited use of a helper hand, how to deal socially with the real risk of seizures, how to advocate for independence within one’s family and in the wider world. We saw a demo of a glove that with gaming technology can improve one’s functional use of an affected hand. I participated in discussion groups on alternative therapies and alternatives to therapy. With 370 others whose lives and families have been changed by hemiplegia or stroke, we connected, learned, and dined together for seventy-two hours.

And, perhaps most meaningfully to me, I was truly able to give back at this retreat. I taught a Feldenkrais lesson on turning and twisting. It was done in chairs and in standing. I invited people of all abilities, ages ten and up. Several kids and young adults with hemiplegia participated and noticed differences throughout the lesson and from side to side. Parents joined in too and felt how this way of attending to oneself can be of benefit. I shared a recording of the lesson with those in attendance at the retreat who were not up early enough for my 8 am class, and will gladly share with you if you contact me. Beyond this lesson, I taught a family with a child who is not yet crawling that it doesn’t serve their son to put him in sitting or standing before he’s ready. He’ll own his movement and move with higher quality if they can respect his developmental pace.

We left the retreat hotel on Wednesday, grateful for all the new connections and sad to say goodbye for now. For the adults and teens, online connections will only be strengthened by this time spent in face-to-face contact. For the kids, they’ve made memories to last until the next national retreat or more local gathering.

The Child Neurology Foundation has recently formed a Collaborative Peer Support Work Group to improve opportunities and access for peer support. As my family has personally benefitted from direct peer support, I heartily endorse these efforts and hope to attend their Peer Support Boot Camp on October 2, 2018.

Mount Monroe, Mount Washington – July 10-11, 2016

Sunday, July 10, 2016

On Sunday, July 10, 2016, Zoe, Mia, and I arrived at the trailhead at the Mount Washington Cog Railway Base Station parking lot just after 10 am, and we were on the trail at 11 am. We were not in a hurry as we understood that the forecast was supposed to be improving throughout the day on Sunday and definitely be better on Monday. We headed up the Ammonousuc Ravine Trail. It was about 50 F, not raining as we started.

Note: Click on any of the pictures to see them in a larger size.


At about 0.3 miles, our trail merged with the one coming from the U.S. Forest Service parking lot. We continued to climb. We took lots of breaks. Roots and rocks are relatively easy going, and there was a lovely sound with the stream all along the trail, with great waterfall views.


The trail got significantly steeper just after Gem Pool, and it was raining too. At that point, we had to put our hiking poles away to use our hands and feet to climb some of the slippery ledge rocks.


There were a few others climbing up or down the Ammonousuc that day, though not very many, most likely because it was not a nice day.

One guy made a big impression on Zoe as he ignored her warning not to step over a rock crevice and he bounded across it.

The girls were faster than me on the big rock scrambles. Mia had led most of the way on Sunday, and they worked together to coach each other on foot and hand holds and also to coach me.

The girls made it to the top of the final ledge section and yelled down that they could see the hut!


We arrived at the Lakes of the Clouds Hut at about 4 pm, so the 2.4 miles and 2300 vertical feet took us about 5 hours.

We were happy to go inside, hang up all of our wet gear, and find our bunks. There was a super eager ten year old girl who was helping the hut croo as we checked in. As it turned out, she was part of a party of ten sharing our fifteen bed bunk room. Her grandfather takes his clan to a hut every year.

The girls had hot chocolate, while I had tea, and we shared some cornbread and some kind of baked bar made by the croo.

The girls made friends, ran around in socks or bare feet as we hadn’t brought any shoes other than our hiking boots. We found our three bunks, built into the wall, all three stacked one above the other. I was on the bottom, Mia in the middle, Zoe on top.

Dinner was served family style at 6 pm, a four course meal: black bean soup, subalpine salad, stuffed shells, broccoli, and lemon poppyseed cake. The hut croo entertained and served us. We sat at a table with the family of ten.

Our final two bunkmates arrived just before dinner, a mother and her fourteen year old daughter.

Zoe found it helpful that we had time to get to know people before we had to go to sleep, so for her it was like sleeping in a room of friends, instead of strangers.

Quiet hours are 9:30 pm to 6:30 am. Mia was asleep well before quiet hours, Zoe just after. I took advantage of the free earplugs offered, and we all got a decent sleep.

Monday, July 11, 2016

Our original plan had been to climb Mt. Monroe on Sunday afternoon or evening, but the weather didn’t cooperate for us or anyone else. So, along with some others, we decided to do it before breakfast. It’s only 0.3 mile and 360 vertical feet from Lakes of the Clouds Hut up to the summit of Mt. Monroe.


Mia putting on gloves before climbing Monroe



Girls on the way up Monroe.


We made it up and down in about 45 minutes. Some kind folks took a couple sets of pictures of us. It was misty and wet on the climb. We saw a rainbow, and got some views. It was also very windy and quite cold. We all wore hats and gloves and rain pants and jackets.



View of Washington from Monroe



Mia on way down from Monroe

Breakfast was served family style: oatmeal, eggs, bacon, pancakes, tea, coffee, hot chocolate, juice.

The croo put on a Cinderella skit as they taught us how to fold up the wool blankets on our bunks. My girls and I had brought sleeping bag liners which worked well on the bunks with the provided pillows and blankets.

We loaded up our backpacks, and headed outside to start our hike at about 8:30 am. Some others took a picture of us in front of the hut.


It’s about 1.5 miles from the hut to the summit of Mt. Washington, and 1270 vertical feet. It was clear and sunny, though windy still. The girls started out slowly and we had to adjust clothing, take several breaks, and sort out whether Mia or Zoe was going to lead. Most of the other guests who had stayed at the hut passed us on their way up Mt. Washington, and that was definitely discouraging to the girls. Around this time, Mia also realized that she had been the youngest person in the hut that night. There were some other nine and ten year olds close in age to Zoe, but nobody Mia’s age. Zoe told me that she’d like to have a Feelings Class that took field trips then spent time thinking about and writing about the feelings of other classmates. I was in awe as she invented this concept in her mind, clearly recognizing her own spread of feelings and those of Mia and me as we confronted the elements and our own limitations.


As we were approaching the summit, a student intern with the U.S. Forest Service approached us to do a survey about use of the Crawford Path. The survey was asking about our experience in terms of our sense of whether it was too crowded on that day and what might make it too crowded. We had to estimate number of hikers per hour, and look at some pictures to see if that seemed too crowded. It was supposed to take us five minutes, but took more like fifteen.


We finally made it to the summit, about 3 hours after we had left the hut. We asked some folks to take a summit picture of us. There were a lot of people up there, most of them had come up by Cog Rail or in cars. There’s a full visitor center where we were happy to rest and eat hot food. The girls enjoyed pizza. I had chili. We saw our friends, the family of ten. We charged my cell phone which had run out of power on Sunday.

And, we conferred. I wasn’t at all sure we all had the energy for the descent we had planned. Mia seemed really tired and said she just wanted to take a nap. I asked her at one point what she wanted to do and she said she was okay to take a shuttle down. My right knee hurt. Zoe kept going back and forth. She asked what would happen if we got halfway down and one of us just couldn’t go anymore. I explained that we had enough food and warm clothes and gear to wait it out until we could go again. So, I posed it to Zoe that I thought we might need to take a shuttle down. She was very disappointed. Mia saw her upset and by then the hot food had reenergized her so she said she could walk it. I checked in again with each of them. Yes, they wanted to hike down, the Gulfside and Jewell Trails as planned, another 4.4 miles.

We all changed out of our long underwear and rain pants and put on hiking pants as it was dry and getting warmer, and would be getting even warmer as we descended. We filled our water bottles and Camelbaks, and set out just after 1 pm.

Zoe led most of the descent. We first had to get off the summit of Mt. Washington and down to the Gulfside Trail. Then, we headed along the Gulfside Trail, crossing the railroad tracks of the Cog Railway, and seeing some trains puttering up and down the mountain. The wind was bothering Zoe, and she decided she really wanted to be below treeline. I was especially enjoying the views and took a number of pictures. We all thought it was super cool when we spotted the Mount Washington Hotel and the Cog Railway Base Station, though the station looked really far away which was a bit discouraging.








White patch is Mount Washington Hotel



We continued on slowly and took a lot of breaks. There were definitely a lot more hikers out on Monday than Sunday. We passed a couple of the croo from the prior night. They had walked over to Madison Spring Hut and were on their way back to greet that night’s guests. They were practically running.

It was interesting to see how when the trail required us to climb before joining up with the Jewell Trail, the girls thought that we were going the wrong way. We weren’t, it’s just not all down, even as we were on the way down overall. Zoe was trying to see the way that the trail went as there were two sets of cairns and so I studied the map and showed her where I thought we needed to go. It was confusing to her as it didn’t seem like a direct way to the Cog Railway Base Station which we could see.

We all used our hiking poles on the descent and it definitely was helpful to maintain balance and to help me cushion some of the pounding for my knees. Zoe started an estimation problem. “If a quarter is about an inch in diameter and there are twelve inches in a foot,… How many feet in a mile? How many miles are we walking? How much money would that be if we lined up quarters all along the path?” I loved her questions but I had to tell her that her questions were beyond my mental math capacity in that moment. I was tired.

Mia started to talk to herself in the same sing-songy monologue she often uses in the bath or when she’s playing by herself. She was processing everything she’d seen, so there were stories in the snippets I heard about the hut stay, about the various phases of the hut. She was happy and just kept going.

We finally started to go down the Jewell Trail. A large group of fourteen and fifteen year old girls and their chaperones were also descending. We played leap frog with them for a while. Each time they took a break, we passed them, then we’d take a break, and they’d pass us.

The girls explained to me that it wasn’t like you immediately went from being above treeline to below treeline. It happened gradually. And so it did. The scrubby pine started to emerge after we’d been careful for hours of stepping on the fragile alpine flowers. Eventually, the trees were as tall as Mia, and then much taller than all of us. One of the chaperones of the group of girls took this picture of us, happy to be back in the trees!


Mia got really tired and started to whine. Zoe didn’t want to listen so she went a bit too far ahead. I had to corral everyone together, especially after Mia and I each slipped and I cautioned Zoe that we needed to stay together. I checked in with Mia who wanted to keep going despite some tears. We got low enough that we each had to take off our rain jacket. I stuffed each of our rain jackets into our respective backpacks. We descended further and the bugs came out. They were super annoying. Nobody wanted to stop to put on bug repellant. I eventually did because I couldn’t stand it, and I swabbed some on Mia’s neck and forehead too. We were all yelling at the bugs and at the missing trail branch that was supposed to be on the left any time now. Actually, the girls were confused as to how the trail could branch to the left as to the left was the slope of a hill going up. they didn’t want to go up.

We crossed a stream. I thought we were getting close. I went to look for my map which had been in the pocket of my red rain jacket. Uh oh. My red rain jacket was missing from the outer pouch of my pack where I had stuffed it. The kids were in good spirits at that point. I asked them to rest and eat another snack. I thought I might have snagged the jacket on a tree branch that I had to crawl under. I left them and my pack, took note of the time, determined to only go 10-15 minutes up trail to see if I could find my jacket. Not seven minutes later, I was beyond thrilled to see a family carrying my jacket. They were Austrian, had a couple of older kids, and had traveled in one day the same route that we’d done in two days. They said they’d found my jacket quite a way up the mountain. We walked out the final half mile with them. They even helped us with the last stream crossing which was a bit tricky. And, I shared some tips as they were headed to the Boston area for a few days after their White Mountain adventures.

We arrived at our car at 7 pm, took off our boots, stopped to get gas for the car and salt and vinegar potato chips for the girls, and drove the nearly three hours home without further stops. The girls were amped up and super goofy the first hour of the drive, but then slept the duration. Zoe claims she only slept twenty minutes. I know better. I tried to turn on my music. She awoke and asked me to turn it off. I kept it off as I wanted her to sleep.

Total distance hiked on Monday: ~6.5 miles

California Bound


A week from tomorrow, Zoe, Mia, and I are flying to San Francisco for fifteen nights in California. I’m making lists, trying to find things, working on packing after the girls are asleep, and some when they are awake, pouring over maps, contacting old friends, and making plans. Earlier this week, Zoe decided that she really wants to bring her American Girl doll, Sage, to California to show her cousin Alison who is getting married near the end of the trip. These cousins have bonded over American Girl dolls. I said no. I’ve been telling my girls that they are pretty lucky, getting to go to California at ages seven and five.

I first arrived in California twenty-three years ago, the summer after I graduated from college, for an internship with the United States Geological Survey (USGS). The summer before that, I spent several weeks at a geology field course in Wyoming and South Dakota. My hard work earned me this internship, and a wise professor of mine helped me contact one of his colleagues at the Menlo Park office of the USGS to see if he could use some help. He could and so it was that I got to join his field crew in Mammoth Lakes, California, working with five guys, driving a 4-wheel-drive government truck around mountain roads at night to measure crustal deformation with a two-color laser geodimeter. By day, my field crew buddies taught me to recreate – mountain biking, rock climbing, hiking, and backcountry skiing in winter. I was lucky then and in the ways that life is circular, here I go again, retracing some of my path through California and eager to share it with my girls.

Back then, I was twenty-one, fresh out of college, and keen to drive cross-country to begin my adult life. My father had died a few months earlier of a brain tumor. My mother threatened that she would drive with me if I didn’t find someone else to make the cross-country trip. So, I found Jenny on the ride board at Brown University, looking for a ride to San Francisco. I loaded my little red Honda Civic with my graduation gift mountain bike standing tall atop the car, picked up Jenny in Ohio and taught her to drive stick shift as we meandered to San Francisco. I vaguely recall dropping off Jenny and sharing a meal with the eccentric family that was hosting her in San Francisco. I had friends in Palo Alto then as I do now, different friends, but a place to stay nonetheless. I checked in to the Menlo Park office to do some paperwork and then drove back east over Tioga Pass to the East Side of the Sierras to learn my field job.

The job itself involved a lot of driving on mountainous dirt roads at night to set up retroreflectors for the laser to point at for measurements. About one week out of each month, we took the show on the road to other temporary networks we monitored throughout California. I was able to extend my summer internship through the end of the year. It was eye opening in so many ways. Perhaps the biggest was that it was a pause in my life from the achievement of school, before “real” adult pursuits. It was well-timed as I was still grieving my father’s death, and welcomed the mountains to explore and inspire.

As I got restless intellectually after some months, I applied to graduate school for a Ph.D. in geophysics, both on the East Coast and on the West Coast. I visited both of my top schools. On the East Coast, an MIT professor asked me during my interview, “Have you traveled much?” I thought I had and rattled off places I had been in the United States, and on a few family and school trips to Europe. I think he was trying to sell the travel opportunities in a field focused on studying the Earth. On the West Coast, I stood on the balcony of the beautiful redwood building that is the Institute of Geophysics and Planetary Physics, part of Scripps Institution of Oceanography, University of California, San Diego. The Pacific spoke to me. I could easily imagine spending years there. And, I did. Five to complete my Ph.D, and another year as a postdoc. Perhaps that MIT prof had planted a seed too as I traveled extensively, spending nearly a year abroad of those five years of graduate school. I spent a summer field season in Indonesia, took a sabbatical with my advisor in France, participated in research cruises in the Southern Ocean and off the coast of Baja California. And, while in La Jolla, I studied, researched and swam around the pier with friends and colleagues most days from April to October each year, as long as the water temperature was at least 64 degrees.

These are some of my stories that I want to share with my young girls on our trip. Our planned itinerary is oddly similar to my own route over the seven years that I called California home. We start with visiting friends in the Bay Area, then Yosemite, then the East Side of the Sierras, then San Diego with extended family for my niece’s wedding. Both of my girls and their three young cousins are all in the wedding.

I plan to mail our clothes for the wedding sometime this week so we don’t have to worry about keeping them safe through the mountains and driving adventures. I’m attempting to connect with friends along our route, including the lead guy on that USGS field crew who is still on the East Side, and some of my book group buddies from a book group I cofounded with other women in science seeking community way back in 1993 that is remarkably still active.

I may blog during our trip, or I may wait until we return. Meanwhile, back to packing! There’s an awful lot that needs to happen here at home and at work for me in the next week but indulging in these memories and sharing the anticipation helps me prepare too.