“I like how this book has stories. It works well for how we read now.”
Zoe shared this as we finished up a chapter about Witch Hazel in Braiding Sweetgrass by Robin Wall Kimmerer, our current book. We just completed three thousand days of reading aloud on December 12, 2020. When we began keeping track of our Reading Streak, Zoe was in kindergarten. We started reading chapter books before that, but that’s as far back as our logs go.
We read for minutes now each day, not the hours we read when her appetite for listening could outlast my voice. These moments of connection tie me to my nearly fourteen-year-old daughter in a way that remains sacred to us both. She invites me in for this time each day to share a story or part of one, sometimes only a paragraph.
We negotiate which books to read. Nonfiction seems in favor. The National Team then Hidden Figures. We tried Maya Angelou’s I Know Why the Caged Bird Sings, and after a week, Zoe asked for something else, something she didn’t want to take from me and read on her own. I proposed a few. She agreed to Braiding Sweetgrass as it had piqued her interest at her nature camp this past summer when a counselor read a passage. It fits with her environmental and social justice passions.
I had listened to enough of it as an audiobook to know that there are sweet passages about relationships between a mother and her daughters, that it weaves science, poetry, history, politics with phenomenal stories and poetic language.
Three thousand days is worth marking. I don’t trust the user error in marking our daily logs so I relied on the computer to tell me when it would be two-thousand-nine-hundred-and-ninety-nine days since September 26, 2012. It is Hannukah this week, so on Sunday, our three thousandth day, I decided to give each of my girls three thousand pennies worth of books, that is gift cards to a local bookstore for 30 dollars. They may each choose two or three books.
This reminds me of one childhood birthday when my two aunts gave me some seemingly large amount of money to spend at a bookstore. I came away with a pile of books, and still remember the freedom and joy from choosing them.
I also gave them each two books. I gifted Zoe our current read-aloud, Braiding Sweetgrass, because Hoopla kept losing our place on the library-borrowed e-book. I chose Megan Rapinoe’s new book because we read about the US Women’s National Team for soccer and I knew Zoe would enjoy another perspective on those events. She read it yesterday in one sitting. This is why we mostly get books from the library.
For Mia, I chose A Light in the Attic by Shel Silverstein and a beautifully illustrated book about the periodic table. But, first, we need to finish Ogden Nash’s Zoo. Mia and I don’t keep track and we sometimes skip days. She favors poetry currently.
In a time when we have been mostly housebound for nine months, having this small daily ritual with each of my daughters has kept us connected. Reading together is a doorway into other conversations about the books, characters, events, and life.
For me, looking back on all the books we have read in three thousand days, or eight years and a few months, I see growth and possibility. Using the braiding metaphor, we have woven together a love for words, appreciation of books, literature, a quest for knowledge, and time together. I had no idea it would last this long, even though five-year-old Zoe said she wanted to read like this for more than three thousand days. It may shift forms still, but I am now certain that this reading streak of ours will endure in our hearts and minds. Consistently showing up breeds that sort of knowing.
Everyone is home for weeks now, due to the COVID-19 pandemic. And, still we read. It’s been quite a while since I updated our reading streak log. The last time was when we were at 2222 Days of Reading Aloud. Here we are, 7.5 years into our reading streak. We started when Zoe was in kindergarten and Mia was 3 years old. Now, they are 13 and 10.
Reading aloud to older kids is pretty different and much the same as reading to little ones. It’s different because they can read well on their own, and often prefer to do that, especially for stories that they want to enjoy more quickly than our late evening schedule often allows. In usual weeks, we get home from sports or other activities, juggle dinner and homework, and fit in a quick page or two of reading aloud. Some books take months at this pace. Reading aloud to older kids is the same in that we all still look forward to this connecting time, to the shared unfolding of story, narrative, facts, and characters.
So, what have we been reading? Since the last time I updated the log, we read several more books in the “Swallows and Amazons” series of sailing adventures by Arthur Ransome, that is up until “Missee Lee” a pirate story that takes place off the coast of China. We tried to get through it a couple of times, and it was too scary and too racist, written in a different time. Fortunately, Mia and i were reading the Penderwicks series, so Zoe joined us as we made our way through books 2-5.
Now, we’re onto nonfiction. Zoe listened for six months as I read “The National Team: The Inside Story of the Women Who Changed Soccer” by Caitlin Murray. Zoe had done a school project two years ago about inequities in women’s ice hockey, and so the topic felt relevant to her, and she remained interested throughout, even though we sometimes only managed a paragraph on particularly late nights.
We just started reading “Hidden Figures: The American Dream and the Untold Story of the Black Women Mathematicians Who Helped Win the Space Race” by Margo Lee Shetterly. The girls and I saw the film when it first came out in the theaters, and I’ve listened to the audiobook. Reading it is bringing alive history, with Zoe interrupting frequently still to ask questions and place events in the emerging historical timeline in her head. It feels like we may get through it faster than “The National Team,” but then again, we have more time to read late into the night now, and sleep in if needed.
After finishing the Penderwicks series, Mia and I have enjoyed a poetry anthology, and now are working through Shel Silverstein’s “Where the Sidewalk Ends.” Note that I don’t log the books I read aloud to Mia, though I do write about them when I write these occasional updates. Mia likes to read and be read to, and she likes to do other things too. When she was younger, she’d often ask for a game instead of reading, because it was too many words to listen to the books that Zoe liked. Last night, we worked late into the night on a jigsaw puzzle together. These days, Mia wants a poem or several before bed.
As most families and schools sort out what schooling looks like in this unusual moment in history with kids unexpectedly home instead of at school, I feel grateful to have this anchor in our lives, time to read aloud daily with each of my girls. And, I love hearing about the books they have chosen to read on their own. Zoe and I made it to the public library on the last day it was open so she is still working through her pile of books. Otherwise, we’re relying on what we have in the house, what we can borrow digitally via Libby and Hoopla, and occasionally ordering Kindle books when the wait would be too long for digital loans. Happy reading!
This week, we hit 2222 days of reading aloud. I had noticed it coming as I logged our daily reading as we passed day 2200, and since our reading streak is reliable as a daily connection time, I shared with Zoe that we’d hit 2222, and she asked me to blog about it.
The reading streak was initially created by Zoe’s request, though for most of the past six plus years, I’ve read aloud to both Zoe and Mia. Sometimes each had a separate book going for me to read. But, in September, we ended our six years of hosting au pairs which meant that Zoe could move out of the girls’ up-to-then shared bedroom, and into the vacant room. So, now I read nightly to Zoe and continue to log it. Mia and I read separately in her room, and she likes to alternate reading to me and being read to and playing games. It’s an entirely different pace. It’s easier to give them each the kind of bedtime they want now that they are not in the same room.
Our pace has definitely slowed over the years as Zoe and Mia have become capable independent readers and as busy sports and activity schedules and the constant pull of electronics compete for our shared leisure time. For more than a year now, we’ve been reading the series “Swallows and Amazons” by Arthur Ransome, sailing and boating adventures set in England. Each book takes us more than the nine weeks you get with two renewals from the library, so we pay fines, or if I remember, we request the same book on Zoe’s account, return the one I had checked out, and carry on with our reading. These books are an antidote to our always-connected life now. The child characters have days or seemingly weeks as a pack with their friends to map a whole island, invent pretend worlds, and sail across seas. With each book, I inquire if Zoe wants to continue with the series, and she does. We are nearing the end of “Secret Water” and we await arrival of the next book “The Big Six.” There are four more in the series so that may occupy much of this year of reading. After that, I suppose we’ll branch out. Now that Zoe is interested in more challenging content, I have notions of reading “The Diary of Ann Frank” or maybe something by Ursula Hegi as I have fond memories of reading that aloud to a precocious nine-year-old friend when I was in my late twenties and staying with her family on sabbatical in Brittany, France.
Mia and I are currently reading “Wonder” by R.J. Palacio. She has seen the movie. I have not. Mostly, she doesn’t like movies and Zoe has only recently started to enjoy movies. They’re curious about that. I think it’s because we didn’t watch a lot of movies when they were younger so they still find them loud and fast, and kind of overwhelming. Mia also still finds picture books engaging, and she really likes to play games, so a lot of nights her time with me has been in playing Scrabble or Iota or rounds of War.
I’ve begun to travel more this year for workshops and trainings, and I give the girls a choice about how to keep our reading and connection lifeline going during these separations when they are home with overnight sitters. When Zoe went on to a week-long sleep-away camp, she took photocopied pages from the book we were reading at the time, and we read in parallel those days we were apart. When I can call them, to read over the phone or video-call, they prefer that. On one recent trip, when Mia was missing me, she read me a couple of picture books about other mamas and their young, “The Kiss Box” and “Make Way for Ducklings.” It really helped. After that, she got Zoe to do origami with her.
For independent reading, both still enjoy books from the library. Zoe has also discovered the Libby app on the iPad and so she can request and read books from the Overdrive collection without involvement from me. The usability is better with that than using the Kindle which requires me to do the final Amazon to Kindle push.
As Zoe has started middle school this year, and has moved further away from us in the house, our shared reading time remains a special connection. Even when we’re mad at each other, we read. Even when we get home at 10 pm, we read, sometimes before we go out, sometimes after and only for a paragraph. But, I’d say reading aloud together has become an essential part of our life, and I particularly love when I hear questions from the girls connecting characters from the books to real life situations, or when I hear the girls use vocabulary they could only have learned from reading.
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.
Dr. Karen Pape wrote the following post on her site in August 2013. Sadly, Dr. Pape died on June 2, 2018. As a tribute to her, I’m reposting it here. Below her post, I share a comment about falling that I wrote in response to her original post. Shortly after Dr. Pape wrote this, I shared my Reflections on Outliers Post by Dr. Karen Pape which in many ways was the seed for the career transformation that I have undertaken this year.
In a previous post, I asked people to write me about Outliers…children who were doing more than expected after an early brain or nerve injury. This is Mia, demonstrating a new skill on her 4th birthday.
When you watch her “Skinning the Cat”, it is hard to believe that she had a stroke in the early days of life. The damage was to the left side of her brain, causing a right hemiplegia. Yet holding on to the rings, both hands and arms are working equally hard. Both legs swing up and over. There is no evidence of the hemiplegia. This result is not magic – it is the result of a determined child who has adopted the “I can do it” philosophy taught to her by an equally determined mother. I think both of them qualify as Outliers!
Her mother’s description, still shots and videos, take you step-by-step through Mia’s learning process. First and foremost, Mia expects to be able to accomplish this task and she works hard, through many failures, until she reaches her goal. She is encouraged by her mother and also has the added role model of her older sister. If Zoe can do it, then I can do it! I am quite sure that during the learning process, Mia has taken some falls. She probably had a few bruises as well. Learning a new skill is a series of failures, trying new methodologies and finally success. Mia has the advantage of watching her older sister work through the same sequence of learning and she is up to the challenge.
How many children with an early brain or nerve problem are allowed to fall? When I was in clinical practice, I always checked young children for bruises on the legs. It is a normal finding in growing, exploring children. The absence of bruises often means there is an excess of watchful helpfulness. The cognitive neuroscience experts…and master coaches…understand the simple reality that learning is an experiential process. No able-bodied child has ever learned to walk without a lot of falls. Brain neuroplasticity is activated by a novel challenge. In the absence of challenge, the child’s normal habits dominate. In the past, many therapists had tried to get Mia to extend her arm and grasp. She learned how to do it when she had to…new habits are formed by novel, challenging tasks that have consequences. Read the whole post about Mia’s learning process. Her mother and sister offer some guidance and ensure her safety, but the process of trial and error…by Mia…is the way her brain learns the task.
At the end of the video, Mia says, “I flipped”. Her pride in herself is a precious gift and I am grateful to Mia’s Mom for sharing her story. We need more of them.
August 7, 2013
Mara commented:
It’s such an honor to have Mia featured here along with Zoe and me. Thank you.
And, you guessed right, she definitely has fallen over and over. She falls all the time and happily proclaims before I can say anything, “I’m okay Mommy!” Then, she hops up and continues doing whatever has captured her attention. And manipulating band-aids for all those little boo-boos is excellent fine-motor practice for both hands, fundamentally a bimanual task.
Just yesterday, we were at a play structure and Mia was playing on a triple trapeze swing, similar to the one in the video above. Just six weeks after first doing skin-the-cat, she continues to take new risks. She can hook her legs with knees bent over the bar and hang head down. She was so bold as to let go with her hands and hang there for a few seconds seeking a thrill. And then, just as I was starting to panic wondering if she’d be able to find her grasp again on the rings she did and she flipped off the bar and had the biggest smile.
It takes some training as the parent to stand by and witness this kind of courage and determination, but the rewards are tremendous and often surprising.
This morning, I mentioned to my girls that a year ago I had posted about their pogo sticking feats. Zoe reminded me that she led the way and inspired Mia to want to learn this new skill. When I commented that Zoe hasn’t been pogo sticking lately, she said that she has outgrown the one pogo stick we have so it’s time to upgrade.
Here’s Zoe in action with Head-and-Shoulders thrown in for fun in March 2017 at age 10.
Zoe’s tricks on the pogo stick motivated Mia to master her own tricks. A year prior to this, Mia had a hard time making the pogo stick go down. Here is Mia “one handed” with her tongue out to help focus! Variety is one ingredient in healthy movement development so part of what I am sharing this month are many of the different activities Mia tries. Pogo sticking requires balance, timing, and comfort with falling. Here’s Mia in 2017 at age 7.
And, here is Mia this year in 2018 at 8 years old.
This picture is from the grand opening celebration of the Christa McAuliffe Branch Library in May 2016. An artist drew these fun henna tattoos on the girls’ hands. I bought this brick nearly a year prior to support the library construction. At the time of the brick installation, we were at 1327 consecutive days of our reading streak. Now, we are a month beyond 2000 Days of Reading Aloud.
These days, I spend a lot of time at the Christa McAuliffe Branch Library. It has great light, tons of windows, and plenty of quiet working space. Each time I enter, I find our brick.
While I’ve read to both girls since birth, Zoe initiated the reading streak, and we have promised to keep it going as long as we can. Mia’s interest and endurance come and go, sometimes it’s “too many words” and other times she joins us. Both girls are capable readers and still love being read to at least once and sometimes twice each day. Sometimes we have two read-aloud books going at the same time, one of each girl’s choice. Car rides got easier once both girls were interested in the same books. This beats the couple of years when our long drives alternated between an hour of quiet (Mia’s frequent choice) and an hour of listening (Zoe’s preference), and all the associated negotiations about who gets to go first and when it’s time to transition, especially if we were mid-chapter.
About ten days ago, in anticipation of the release of The Penderwicks at Last, the fifth and final book in the series by Jeanne Birdsall, Zoe was rereading Harry Potter, and she told me that she planned to finish reading the sixth and seventh Harry Potter books then reread all four Penderwicks books so she’d be ready for the fifth book. She did it. The newest Penderwicks book arrived yesterday and she read it straight through. Some school and household tasks get put off when she’s in a reading burst like this; it’s hard even to convince her to stop to eat or move her body.
I wrote the post below when Mia was eight months old and Zoe was newly 3 years old. I was thinking about my mother yesterday, on Mother’s Day, how complicated relationships between mothers and daughters can be, how messy ours was. I was thinking about my own girls, about the imperfect parenting I’m doing. I was thinking about how all mothers do the best they can with the resources they have. And, now eight years after I first wrote this, I’m sharing it again here, even more grateful that I made the effort to repair my relationship with my mother in the limited time she had as a grandmother to my children, as a mother to me as a mother.
November 2007, Grandma Barb holding Zoe (10 months old).
August 2009, Grandma Barb holding Mia (2 months old).
August 2009, Grandma Barb reading “The Little Red Hen” to Zoe (2.5 years old).
March 14, 2010
A month ago, I drove to Ithaca for my last visit to see my mother. Two days before that was our last of many hundreds of nearly nightly phone conversations over the past three years.
I didn’t always talk with her daily. There were many years where I understood that her expectation was that I’d call each week and I dutifully did so, sometimes with stressful anticipation for many days worrying about what zinger of a remark she might make, what questions she might ask that I’d need to artfully avoid, and of course what small parts of my life I felt comfortable and safe to share with her.
But, something shifted when I became a mother myself. My mother’s last visit to the Boston area was for a baby shower when I was 7 months pregnant with Zoe. My sister Amy brought our mother and they stayed at Nan’s house where together my sisters threw me a beautiful baby shower. My mother enjoyed the trip, delighting in being part of the celebration of another grandbaby-to-be, reconnecting with friends of mine from high school, college, and meeting some more recent ones for the first time.
Her ability to travel was limited. Her health was fragile even then. And, her days were pretty monotonous. She spent a lot of time watching TV. She managed to get out to the pool 3-4 times a week for some water exercise. She had home health aides to help her get to her appointments and manage her own selfcare. She saw my 2 siblings who live in Ithaca frequently, and the rest of us less often.
So, I started to call, daily. In the early days when I was on maternity leave and spending great amounts of time sitting around nursing Zoe, it was fairly easy to call, and it helped the time pass. My mother enjoyed hearing about every little milestone, hearing Zoe’s coos through the phone, and I suppose remembering her own days nursing each of her 6 babies as newborns. Then, there were the few months that I started working part time while my house was also being renovated. She was interested in everything, Zoe’s adjustment to daycare, my return to work, progress on the house. We visited Ithaca every 2-3 months during Zoe’s first year so my mother often would say that she couldn’t wait to see Zoe doing this or that, whatever I had told her she was doing now. I also sent pictures every month. And, when I visited, she had albums ready waiting for me to fill with these pictures of Zoe. I have all those albums now. In fact, they’re the only photo albums I have of either of my kids. All my pictures are in digital albums and any prints are in a big box. There are several more months worth of prints that are in the basket where my mom collected them. I suppose they’re waiting for me to continue the tradition, to find an album and fill it. I might just need to make time for that.
As Zoe started to eat solid food, I adapted our phone conversations. I turned on speaker phone so I had both hands free to manage the feeding process. My mother wanted to know each night what Zoe was tasting now. “Is it all over her face?” “Does she like it?” “Did she make a face?”
Sometimes these conversations were as brief as 5 minutes, other times they were longer. It really depended on what was going on with us, how much attention Zoe needed, what else I needed to get done.
As Zoe started to talk, she could say things directly to Grandma Barb. At some point, they began a nightly tradition of “Night, night, don’t let the bedbugs bite!” Only, my mother didn’t like bedbugs, so she asked Zoe to start a variation on the game. So, bedbugs were replaced by monkeys, kangaroos, koalas, and tens of other silly things that do and don’t really bite.
At times, mostly when Zoe was two, she didn’t want to call Grandma Barb, so I struggled to keep it interesting for her. Sometimes, we read stories together over the phone to Grandma Barb. Sometimes, Zoe’d be contentedly playing and I’d get to have an adult conversation with my mother, usually brief, often interrupted, but still a useful break from an evening of chatter with my extremely verbal toddler then preschooler.
These conversations went on through my whole second pregnancy. I didn’t know if I was having a boy or a girl. My mother wanted to know. She was impatient to find out. She was very excited that I had a second girl. And, then she was as worried as anyone when Mia’s early health complications arose.
At first, I was too overwhelmed to call her. Eventually, I did. She was frustrated and felt left out because a lot of the fast, real time communication in the days immediately before and after Mia’s birth went via text messages and e-mail, media she was not able to manage herself. My brother Andrew printed hard copies of these sagebaby posts and brought them to her. I have her stack of them, in the folder with flowers on it, where she kept them. She read them so carefully, and followed up with questions when we talked. At one point, she corrected me about Mia’s weight. She was sure that I had gotten it wrong in a post. In fact, she was right, I had made a typo off by a pound, and I went back and fixed it after she told me. Unbelievable.
She tried to keep track of every early appointment that Mia and I had. It was a lot to remember and so she’d ask me over and over again for the details and the sequence. She’d follow up to learn what had happened. She was remarkably understanding when I was unable to plan to visit until late August when Mia was almost 2 months old. On that visit, she enjoyed Mia so much. Mostly, I’d put Mia in a spot where my mom could watch her – in her carseat with a toy dangling for Mia to bat at with her hands, or on the baby gym mat where Mia looked at her toys and started to hit them. And, she held Mia too as much as she could. Even in August, it was tricky for me. I had to make sure my mother was in a chair with enough support that I thought Mia would be safe.
In September, my mother was hospitalized with pneumonia for 5 days. She was released with round-the-clock care at home and lived most of her last 5 months in one room. And still we called. I took Mia to Ithaca to visit right away, left Zoe for 2 nights with a friend from work. We all visited her in Ithaca again for Thanksgiving. And then, one last trip – Valentine’s Day. All together my mom saw Mia on 4 trips we made to Ithaca in her first 8 months. Mia had started to “talk” in our phone conversations, jabbering loudly enough that my mom would talk back to her.
In the weeks before her final illness, my mother said so many times that she wished she could come help us. She knew I was stressed juggling my two girls and work and the household maintenance. She tried to suggest things that might help. She was eager for us to visit again, though she knew that we were not ready to travel because of illness, weather, and my work. She said that she couldn’t wait for spring so I could bring my girls to visit again.
Spring is coming soon, perhaps jump-started today by the clocks springing ahead and the rain falling all day long.
We can’t visit her now. All we can do is remember and find small meaningful ways to keep her spirit alive for these girls who only barely knew her. I can continue the photo album tradition. I can wish Zoe “Night, night, don’t let the *** bite.” Lately, Zoe’s been wanting me to say “bedbugs!” Funny. I can go shopping for a baby doll for Mia. I had told my mom that Mia recently started to play with Zoe’s two baby dolls. My mom wanted me to get one (from her) for Mia that’s exactly like the one she gave Zoe at Thanksgiving 2008. I was busy. I didn’t go right out to get it even though she kept asking me about it. Soon, I will.
While Mia is more drawn to team sports than gymnastics, she continues to challenge herself on our backyard play structure and on similar challenges at larger playgrounds.
She’s come so far from five years ago when she first managed to skin-the-cat, as the flip over is called on this triple trapeze bar with two rings.
I love her inventiveness, how she does the movement to get her feet to flip over and then reverses it, then she starts from the midpoint, to flip back, again and again. As you watch the videos, notice how she is patient with herself, giving her right hand time to find its way into the ring, to grip, how she leads with her left hand but waits until both hands are participating to flip herself over. She uses her eyes to help make sure her right hand is where she wants it to be as her sensation in righty is reduced.
Mia had a stroke at birth and has right hemiplegia, affecting her right arm and hand.
Mia loves to climb. Here she is at age seven, after hiking Angel’s Landing in Zion National Park, leading her older sister Zoe up to explore a little cave. She uses all four limbs while climbing and scrambling, which is therapeutic but mostly just fun!
Mia had a stroke at birth and has right hemiplegia.
