Tag Archives: Zoe

Mirror Neurons – Who is the Mirror?

Butterfly Hunting

We’ve been traveling a lot. This picture is from this past weekend when Zoe and Mia spent a lot of time hunting butterflies in Vermont.

Modern neuroscience is fueled by brain imaging and many new theories about how we learn what we learn. One such concept is that of mirror neurons, that by watching someone else do something, one can gain neural activity in the corresponding neurons.

Another is that “Cells that fire together, wire together.” This theory is attributed to Donald Hebb but popularized by Norman Doidge in The Brain That Changes Itself, worth reading for anyone interested in better understanding neuroplasticity.

A friend shared a short TED Talk with me that I include below. It’s an honest emotional account by first time parents of a young stroke survivor who is a year-and-a-half younger than Mia. Much of it resonates with me. While I was not a first-time parent, I was taking a leap in having a second child as a single mother about to turn forty. When Mia was a full-term healthy baby weighing 9 pounds 5 ounces with excellent Apgar scores, I was relieved and so happy. I too was not ready for the sudden hospital transfer when Mia was two days old, the news after many tests that she had had a stroke. I also asked impossible questions. Why me? What will she be like? What can I do to make her better? Mia wasn’t part of a Mirror Neuron Pilot but she has piloted her share of therapies and approaches. She has definitely taught me more than I’ve taught her, and she is an incredible gift. As the parents in the TED Talk conclude, “Consider what you have as a gift, what you miss as an opportunity.”

When Mia was about two months old, a wise friend gave me sound advice to love her as a whole child, not less than because of her stroke. There’s been an active discussion within the community of parents of pediatric stroke survivors about the risk of treating the affected arm or leg at the expense of the child’s sense of wholeness. Many of these kids face challenges with anxiety as older kids, teenagers, and young adults. And, their parents find themselves wondering once again if they chose the right therapies to do and not do.

I embrace the approach of the parents in this TED Talk. Shower all children with love, and show them what you know and love. The world is an incredible mirror. They will find their way.

Case Study: Skin-the-Cat

Mia taught herself to do skin-the-cat the weekend of her birthday party, days before turning four. This is one of many seemingly amazing milestones she’s hit this spring and summer. I’ve been celebrating them along with her and Zoe. In fact, the first time she did it I was not watching and Zoe helped her. Mia came to tell me and repeatedly told me, “I’m so proud of myself!” And, she was, she owned her new accomplishment.

Here she is, the morning of her birthday party in full action.

I have a series of posts in mind that I’d like to write over time to show and tell how I think it’s been possible for Mia to master so much. I happen to have a lot of photos and videos of her development. This is the first such post. Mia is incredibly determined and courageous and always has been. I’m quite attuned to her needs and goals and have focused a lot of attention on providing an environment where she can continue to thrive and learn, sometimes in surprising ways. Mia has been pretty persistent at mastering her world since infancy and that continues. Her repeated practice in different settings allows her many “successive approximations” until she masters a new skill. This notion of “successive approximations” is one that Feldenkrais wrote and spoke of often.

At four years old, Mia definitely owns her “I can” attitude. She has many experiences of watching her older sister, Zoe, master one thing after another. And, Mia comes along finding her own way to do many of the same things in her own time. Just this week, she surprised me in the lake where we swim. She’s swimming farther each day than the last without assistance or floatation and now she’s asking to dive under my legs, just like Zoe. And, she surfaces with rocks in her clenched fists asking me to guess which one has the rock and which one has just sand.

This story goes way back to when Zoe was an infant and some friends lent us this baby hammock for her to sleep in. Zoe was so mobile that she only lasted a couple of months in this hammock because I was afraid she’d end up on her belly in the soft hammock and obstruct her breathing.


Those friends needed it to lend to another family so we gave it back but I asked to borrow it again when I was expecting my second child. I had it set up days before Mia was born, and Zoe discovered that it worked pretty well as a place to swing like a monkey. Zoe was nearly 2.5 at the time.


Mia did sleep in it too for a few months. By the time she was done with it as a sleeping hammock, Zoe’s habit of swinging from it was so established that I put the hammock away and left the frame in my bedroom for daily gymnastics practice.


Mia started to swing from it a couple months after turning two.

Zoe taught herself to do skin-the-cat on the hammock frame when she was 4 years, 8 months.

When Mia was nearly 3, she could swing from rings like these. Soon after this picture, we got our own set for our outdoor playset.


At Zoe’s, sixth birthday party, when Mia was 3.5, Mia was able to support herself well on the bar and pull her knees to her chest.


So, Mia’s seemingly sudden mastery of skin-the-cat on the triple trapeze swing featured at the top of this post really can be traced all the way back to Zoe discovering what a wonderful piece of equipment that baby hammock could be, without the hammock of course.

The frame remains in my bedroom. I’ll close with a video clip of Mia working and working to get her feet on the frame of it. She had done it several times before I started trying to capture it on video so by this time she was tired. But, you can still see her determination, intense persistent efforts and  good attitude. Note how she experiments with placing her hands in many different spots to see how that feels and works. Allowing all of these attempts is what ultimately helps Mia build strength to master these skills and many others. And, she can transfer the same skills to doing the monkey bars.

Rainy Walk in the Woods

Last Thursday afternoon, Zoe and I set off for New Hampshire. We had hoped to climb a big mountain on Friday with our friends, Trish, Alex, and Sage. But, the weather thwarted that plan. We considered canceling or postponing the trip but decided to go anyway as I had already arranged overnight care for Mia, and Zoe had been really looking forward to the adventure, so disappointing as it was to not be able to climb a mountain, it would have been even more disappointing to cancel the whole trip.

About five minutes into our drive, Zoe started to miss Mia. Mia also missed Zoe but she did well on her first sleepover with our beloved former nanny Payson. And, I managed my first night of separation from Mia too since those early NICU days when I was parenting Zoe by night at home, and Mia by day at the NICU. In some real sense, finding a way to give Zoe 1-on-1 time for a whole day or even an overnight is an important part of healing for all of us from those early separations.

Zoe looks up to Alex and Sage a great deal and it was really fun to spend time with them again on what turned into an extended play date.

We did go for a walk in the rain on Greeley Ponds Trail, about 2 flat miles. Trish wrote in more detail about a hike they took along Greeley Ponds Trail to Goodrich Rock last summer, and still early this summer we saw much devastation from Tropical Storm Irene. Part of the trail remains closed. The pictures below are from our walk.

Zoe is still eager to climb her first 4K in the White Mountains so we’ll be looking for another opportunity to climb later in the season.

Alex, Zoe, and Sage all suited up for the rain.


Sad faces as the trail is closed beyond this point.


Everyone is wet, and my camera has a smear too.

Mia is 4, Zoe Finished Kindergarten

It’s now officially summer around here. Mia turned four on June 19. Zoe had a moving up ceremony today to celebrate the end of her kindergarten year. Below are pictures of each of them, Mia on her birthday, Zoe waiting at the bus stop this morning on her last day of school.

I’m a bit sentimental.

I’ve been collecting pictures and video clips for a longer post on Mia’s latest feat which is that she’s taught herself to do “skin the cat” on a hanging triple trapeze swing, the kind with 2 rings and a bar. She taught herself the day before and day of her party which was the weekend before her birthday.

Zoe and her classmates sang several songs for us in Spanish today. She attends a bilingual school and the combination of having 80% of her school day in Spanish with having an au pair speak with her in Spanish at home has made her quite fluent. This week, she made a video invitation in English and Spanish for her teacher to invite her over for a tea party. I was the videographer. She shared a preview of the sweet tea set from my mother that has nursery rhymes on each plate and tea cup and tea pot.

We have a big adventure planned at the end of this week, a special sleepover for Mia with a former sitter, an overnight outing and hike for Zoe and Mara. I’ll report back when I can.

For now, I am grateful to have made it through this first year of having two girls in different schools, transitioning Zoe into elementary school, seeing her Spanish blossom, and readying Mia for pre-K in the fall. Zoe met her first grade teacher and classmates today so she’s excited for next year’s adventures in learning too. In the meantime, we have a full summer planned and I hope to share some of our adventures as they unfold.



Hanging the New Climbing Rope

More than a year ago, I bought twenty-five feet of 2″ diameter untreated manila rope from Knot & Rope Supply, as recommended by another mom with a stroke survivor daughter. That mom and her husband have built all kinds of outdoor and indoor structures for their daughter’s therapy and rehabilitation. I had tips, pictures, inspiration, just not enough time to ever sit down to splice the rope to itself which was my planned next step.

Over the past few months I’ve been decluttering at home and the box of rope was just taking up space until I contacted our excellent arborist, John Platt. Over the past decade or more, I’ve had John help with thinning overgrown trees, removing a tree, and hanging a more traditional swing. He’s quite versatile and I was sure he could help with this project.

We set a time for 5 pm one weekday afternoon in early June and that evening’s entertainment was  top notch. You can click on any of these pictures in this post or others to see a larger image. I’ll let the pictures tell most of the story.

John arrived with a huge ladder and gear. The girls were entranced. He looked at the tree, we talked about whether the rope would be mostly a swinging rope or a climbing rope. I think it’s more for climbing though a little swinging may happen. There isn’t a huge space for a big swinging rope. Eventually, John helped us pick just the right spot.


We had an interesting conversation about knots. I have a lot of sailing experience from my youth and still can tie many different knots. John had to get creative with the knot tying to get the big rope up into the tree and to keep it there. He attached his green rope to the big rope.


He hauled the big rope up into the tree and tied it to a branch with a fancy knot that used minimal length as we didn’t have much extra rope to spare, based on the hanging branch he’d chosen as optimal. I think when I decided to order 25′ of rope, I was thinking of using a lower branch that John rejected as not strong enough.


Zoe was captivated, watching him climb the tree.


The girls continued to watch from a higher perch.


John climbed down the rope to test it out and to tighten his knots up high. He even bounced to make sure it would hold him. He came all the way down and then managed to climb back up again too. No small feat. Remember this kind of rope in gym class? We talked about how these kinds of ropes are probably not in gym classes anymore. Zoe confirmed that.


Zoe got a try!


Mia too. You can see how her two hands are positioned differently on the rope. One of the ideas of this rope is that it’s so big that as she grows and gains strength to climb and swing, she’ll reach up high with both hands to get a nice grip like she’s already able to do with her left hand but not quite doing with her right.

We’re very much looking forward to sharing our new climbing rope with friends this weekend as we prepare to host Mia’s fourth birthday party.


For those interested in this kind of project, the cost of the rope was $92.25 including shipping, and the cost of John’s labor and expertise was $95. So for $187.25, we have an awesome new addition to our back yard!


Mia Learning to do a Headstand

Last weekend, Mia had another pair of Feldenkrais lessons with Matty Wilkinson. On Sunday, Matty was working with Mia on her back and Mia was hanging out playing the harmonica. Then, Mia started to get a bit restless with being on the table and so she was hanging her whole body off as in the third picture below. She did this a few times. Matty used some of his playful strategies to get her back on the table but she had decided that she wanted to practice doing headstands with Matty and she told him that.

Thankfully, Matty embraced Mia’s new direction for the lesson, and supported her in many different attempts at headstands, even a couple tries at a handstand, and he introduced Judo rolls to get her into and out of the headstand position.

We had to move the table out of the way, bring in a padded rug, and use the wall for support. Zoe was there too and enjoyed watching and even helped take some pictures.

Mia was focused, driven to learn, and joyful. I’ll let the pictures show some of that progression.

At the end of the lesson, Matty said that he now has a better sense of what Mia is like when she decides she wants to learn something. Her drive and persistence are contagious.

All week, Mia has continued to practice her headstands and tumbling with new skill in all aspects of the movements.









Reflecting on My Writing Streak

This is my final post in my daily streak in May to raise awareness about pediatric stroke and to raise funds for Children’s Hemiplegia and Stroke Association. As of now, with MathWorks anticipated match, I have raised $4470. I’ve been blown away by the generosity of friends, coworkers, and family members. I’ll still accept donations through Monday. It’s within reach that we’ll get to $5000. Thanks to all who have helped and if you haven’t yet, please donate if you are able to do so.

In March and April, I became intrigued about doing a streak for pediatric stroke. I was reading posts about other parents of stroke survivors as they announced their streaks and I knew that I had a lot to say and if I were to do a streak (31 days in a row of something), it’d be through blogging. I had notions of sharing 31 vignettes of Mia’s struggles and triumphs. I made lists of possible topics. I decided to do it. Then, I decided not to do it. The Boston Marathon tragedy shook me profoundly and delayed my plans to set up my blog in April. Zoe was having nightmares about the limited bits of news that she had heard from me and at school. And then May arrived and I started to dabble in streaking for pediatric stroke by posting tidbits on my personal Facebook page. I wanted to share more and so I dove in and have written nightly on this blog ever since.

The main cost has been lost sleep since I mostly write after the girls are in bed which often is not until 9 pm, sometimes later. My girls seem to do fine on 10 hours a night which doesn’t leave me much time to myself in the evening. Sleep is a big deal around here. If I get enough, I’m much more patient, able to parent in the ways I intend, and able to weather the inevitable storms that arise with young children. I’m constantly juggling a lot, too much really. With enough sleep, I make better choices, enjoy my girls more, and am more productive at work.

It’s been worth it to lose some sleep over this project though as there have been many benefits. I’ll summarize some of them here to wrap up this month of blogging every day to streak for Mia and pediatric stroke awareness.


My perspective has shifted. Mia will turn four in June. So, for the whole month, I have have been reflecting on the past four years in an integrative and new way that is different from the day-to-day thoughts that come and go. This month, she has mastered riding her bike and learned to do the monkey bars, and because I was blogging, I had the opportunity to share those milestones in the full context of how remarkable they seem to me, given all the fear and uncertainty I carried through her early months and years. The more that Mia is able to do, the easier it gets to accept, acknowledge and embrace the whole story which includes both the joys and the challenges.


I love writing. That may be obvious. It’s been a longstanding hobby and coping mechanism. I keep lists and records of everything and use writing to make sense of my life and my experiences. I’ve had an itch for some time to write for a broader audience. Last Thursday, I finished my six-week writing course in creative nonfiction at Grub Street in Boston. Getting feedback through that writing class and from my blog readers has been a great boost to my confidence and only makes me want to do more. The daily pace is not sustainable so I aim to shift to something closer to posting once a week. I also plan to take advantage of some writing opportunities that arose from this streak. Specifically, I’ve been invited to guest blog on the Children’s Hemiplegia and Stroke Association site, chasa.org. Also, Dr. Karen Pape wants to point other parents to my blog and to feature excerpts from my Monkey Mia post on hers. And, I plan to edit one of my essays to submit to a magazine for publication. I have grander ideas too but it feels really good to be taking these baby steps and getting positive feedback along the way. That will help me to keep making time for writing which feeds my soul. Writing is something I do for myself, time I carve out when I am not caring for my children or working my day job.

Stroke Awareness

Over the past four years, I have learned a great deal about parenting a stroke survivor. I have muddled through parenting decisions for both Zoe and Mia, and I know a lot about what has worked for us. I care most passionately about making sure that my two girls have the best start in life that they can. And, it feels really good to realize that some of what I’ve figured out is helpful and inspiring to others. Having an opportunity to share more of what I have learned with the community of families that seek support through Children’s Hemiplegia and Stroke Association feels important and meaningful. Carving out time for this is my elusive challenge.


Perhaps the most meaningful aspect of blogging daily through the month of May has been the human connections that I have elicited. As people have read and been moved by our story, they have reached out to tell me that, in person, by e-mail, through comments, and through donations more generous than I would have imagined. More than one coworker has said that they had no idea what was going on behind the scenes of my life. By sharing some of my vulnerable moments out here in public on this blog, I’ve made it okay to talk about things that are often not discussed. The resulting conversations are deeper, more meaningful, and as a result it feels like my village is growing both virtually online and in real life. Thanks for reading.

Zoe drew this picture tonight and asked me to share it with you. It’s a clown and a dog. I am not sure how this clown connects to anything I wrote tonight. Let me know if you figure it out. In the meantime, enjoy the picture!


Health Care, Logistics, and Finances

As I wind down my Streak for Mia in the month of May to raise awareness about pediatric stroke, I realize I haven’t yet written much about navigating the health care system, insurance, and out-of-pocket expenses.

We are lucky in many ways. Our health insurance is excellent. We live in the Greater Boston area with its phenomenal health care services. I have enough room in my family budget to pay for expenses as they arise, to see a toy as potentially therapeutic and make the investment, to travel to other states to seek out special Feldenkrais practitioners. I am lucky to have a job and employer that have given me enough flexibility to attend all of Mia’s medical appointments and most of her therapy appointments.

Many people who parent children with special needs, including stroke survivors, don’t have the same resources. I believe that for Mia, early diagnosis, treatment, and ongoing support have been critical to her recovery. One study estimates that in the year after a childhood stroke, medical expenses average $43,000.

I haven’t taken the time to add up all of Mia’s medical expenses. Fortunately, I haven’t had to do that. Insurance covers most of it. I have made spreadsheets to track her appointments, to plan upcoming ones at a pace that is sustainable for our lives. I figured out early on that it was helpful to schedule one per week for a  number of weeks in a row and then to have a break before the next round. In the early days, some of her doctors wanted to see her every 3 or 4 months. Having more than one appointment per week stressed our family schedule. Having weeks with no appointments was liberating and let us establish some normalcy. I also have spreadsheets that I have used to plan for and recover money from both health care and dependent care flexible spending accounts.

The hardest financial battle I had to fight was with the flexible spending account administrator over Mia’s “participation fee” for Early Intervention services. The fee is based on family income and size. When she entered the program it was $250 for six months of participation. When she had about a year left in the program, it tripled to $750 for six months. I knew about the increase far enough in advance to allocate pretax money for it in my flexible spending account. I debated about whether to continue with these services or to switch to outpatient services through Spaulding Rehabilitation Hospital. There was no way that I could have gotten Mia to a weekly session of occupational therapy at one of the rehab hospitals. Early Intervention came to us at home or daycare. Logistics won over pure finances.

A copay for one occupational therapy session is $20. So, even if we could go once a week, the copays for 26 outpatient therapy sessions would have been $520. I decided to stick with Early Intervention and pay the extra fees, counting on the flexible spending account to reduce the fee by using pretax dollars. I think it took three rounds of submitting the paperwork to finally get the reimbursement approved over a period of many months. They quibbled with it being called a “participation fee” even though they would have readily approved comparable outpatient expense of copays. I had to ask our Early Intervention liaison to make up different paperwork as justification. This was all very stressful. I can only imagine what others have to go through to justify insurance expenses routinely.

We have traveled to New York City and to New Jersey for Mia to have intensive series of Feldenkrais lessons over a period of days from two different practitioners who are particularly gifted in working with children. These trips have been paid for entirely by me, thousands of dollars and worth every penny for the gains Mia made in those trips.

My childcare expenses have also been impacted. Before this year, Zoe and Mia were both at the same daycare/preschool for the prior three years. When Mia was a little over a year old and Zoe was approaching four, a friend helped me realize that I needed more help as a full-time working single mom to two kids, one with special needs and extra appointments. So, in addition to two full-time daycare spots, I added a sitter three afternoons a week. Having another adult available to pick up my girls three days a week and to help with the crazy afternoon and evening routine helped tremendously. On the weeks when I had to take Mia to a late afternoon appointment, the sitter could pick up Zoe and play with her until we got home. A second sitter also came regularly on weekends for a four or five hour stretch to play with the girls so I could run errands or go exercise by myself or even just sit still and read a book. I gave myself a gift of four Thursday evenings out in the month of December 2011 with a sitter referred to me by a friend. After that, I kept her coming every other week for close to a year. While I really benefitted from having so much help, it was expensive to pay three different sitters hourly and a lot to manage logistically.

This year, with Zoe and Mia in different schools for the first time, I switched from daycare plus multiple sitters to having an au pair. Mia still goes to the same preschool. Zoe is in public school for Kindergarten and the au pair is available to work up to 45 hours each week so I am not attempting to handle getting two kids to and from two different schools. I consistently take one evening off each week from kid-duty. This has made a huge difference in my life and sanity this year! It’s definitely the right childcare solution for our family for the next few years and gives me a lot more flexibility, some built in times for respite, and continuity of care for my girls.

I’ll close this second-to-last post of the streak with a picture of just how crazy things can get around here. One night last fall, I was reading to Zoe in my room while Mia was playing in their room (too quietly). When Zoe and I went to investigate, we discovered that Mia had emptied every single item of clothing from her dresser. At moments like this, you can sit down and cry or laugh and go grab a camera. I chose the latter.


Invisible Disability

Thanks to all of our supporters, we’re about to cross the $4000 mark. Our fundraising page shows nearly $2000 but all of it will be matched by my employer, MathWorks. All contributions will go to Children’s Hemiplegia and Stroke Association to provide support and information, research and grants to other families like ours. I feel so grateful for the support and encouragement, both financial and emotional. It means a lot to have you reading my streak of posts in the month of May to spread awareness about pediatric stroke.


If you look at Mia in this picture of her swinging, there’s no sign of her stroke. If you meet her, you’ll see a happy girl, eager to play, dance, explore, and sing.

There’s a paradox in parenting a child with this sort of mild disability. The better their recovery, the more invisible the disability becomes. On the one hand, this is highly desirable, a cure or “near-complete recovery” as one neurologist mentioned as a possible outcome in Mia’s first week after being diagnosed with her stroke. Of course, I want Mia to function as well as she possibly can in the world, so I am thrilled with how well she is doing. On the other hand, the less apparent her special needs are, the harder it is to advocate for her, the harder it is for me to get the kind of support I need to keep at it behind the scenes day-after-day and year-after-year.

In this month of daily blogging, I’ve gotten more comfortable with both sides of this paradox. Through sharing more of our story with a wider audience, I am somehow able to celebrate Mia’s successes against a backdrop of her challenges more fully, honestly, and openly. Mia’s triumphs on her bicycle and on the monkey bars are that much sweeter because there were months and years of uncertainty about how much functioning she’d gain. I’ve found myself walking this line repeatedly, grappling with how to optimally support her development and recovery while simultaneously accepting her just as she is right now. I’m convinced that both views matter to Mia, to Zoe, to me, and to others in our lives. I’m convinced that my combined celebration, vigilance and advocacy for Mia over time have made her near-complete recovery possible.

As  I write this, I am trying to choose just one picture or video to show the then-and-now of it. Here’s what I found. 

Mia started crawling in a dingy motel room in Western Massachusetts, where the girls and I spent one night to wait out a blizzard that hit right after Valentine’s Day 2010. We were driving back home from Ithaca to Massachusetts after an emergency goodbye visit to see my mother who had suddenly stopped talking and was in her final weeks of life. Mia was almost eight months old. Zoe had recently turned three. Mia’s crawling in her own way. Zoe is cheering her on and trying to help. I am observing, capturing the moment, and protecting Mia’s ability and right to move independently.

Cape – Sunny Day Adventures

This post is to extend my Streak for Mia to raise awareness for pediatric stroke and funds for Children’s Hemiplegia and Stroke Association.

We’re home from Cape Cod, exhausted and overstimulated. I think both girls grew up overnight. When I said that out loud, Mia tried to show me how much taller she had gotten. I feel gratitude for our wonderful friends that make trips like this so fun, and for our au pair for being here at home to greet us and help pack lunches for tomorrow and handle some of the laundry. Reentry is going to be tough. My children did not go to sleep until after 9:30 pm tonight.

Like yesterday, I’m mostly sharing pictures to show what our day was like. We rose early, left the hotel, but not before having someone knock on the door for the second day in a row to complain that we were being too noisy above them from 6 am – 7 am. Yesterday, I opened the door and today I did not. I simply ignored it in favor of comforting one of my girls. They were not being excessively noisy, just early for someone who apparently was hoping to sleep in.

We had two big adventures with different families. First, we met up with Gabrielle and Patrick for a bike ride. We rode 10 miles! Having company definitely makes more miles easier to manage.

Then, we met Patricia, Avery, and Scarlett for some beach time on the bay side. It was cold in the water but delightful to be on the sand. The girls all played beautifully together.

Unfortunately, I got a speeding ticket as we were leaving the Cape. I was definitely speeding, and didn’t quite have my wits about me to justify it to the officer as my fight-or-flight reaction to being in the car as the only adult while driving my girls who were having the predictable but still challenging vacation-withdrawal meltdown. In fact, I think between where the officer claimed to catch me speeding and where he pulled me over, one of my girls fell asleep and missed the whole thing.

Zoe and Mia waiting in hotel while I go for one more load of our stuff:

Mia and Zoe resting and snacking during our bike ride:

Mia, Patrick, and Zoe snacking:

Mia, Zoe, and Patrick climbing rocks:

Mia, Avery, and Zoe at beach entrance:

Mia and Zoe shocked at the chill of the water:

Zoe, Avery and Scarlett:

Mia helping:

Avery and Zoe helping: