Tag Archives: stroke

Remembering Nightly Conversations with Grandma Barb

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.

Triple Trapeze Stunts – Age 8

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.

Yard Work is Great Therapy

Both of my girls have long loved digging in the dirt each spring. Here they are at 4 and nearly 2 years old.

And, in the next picture, you can see how Mia is bearing weight on her right hand while digging with lefty in our backyard sandbox.

We also would play “wheelbarrow” where I’d hold her feet and she’d walk on her hands (not many pictures of that as I was usually the one holding her feet). This was great for weightbearing on both hands and for balance. Mia had a stroke at birth which largely affected her right hand and arm.

This afternoon, we set out to solve a puppy predicament. This morning, too early, our doorbell rang. I was asleep as the fifteen month old dog still wakes me up too early most days so I had fallen back asleep. The girls were up though and had let him out in the fenced back yard. Well, those holes he’s been digging finally panned out for him. He escaped into the neighbors fenced-in back yard, and was brought back to our front door by our lovely neighbor.

After researching a bit, and filling in the holes along the fence as best we could with bricks, dirt, and rocks, we decided to create a digging pit for Toby in a place where he already likes to dig. So, we dug a hole, and then used the wheelbarrow to transfer some sand from the sandbox that my kids have outgrown to the pit, layering sand and dirt, to make it a digging spot. Now, Mia can fill and push a wheelbarrow on her own, and it’s great for helping her use her whole self to coordinate balancing the wheelbarrow. She holds the metal rake the same way she holds a hockey stick when she’s skating out, and opposite from how she holds a lacrosse stick (for that she has her right hand near the end and her left hand near the head of the stick).

Zoe joined in the action for the training part. The girls buried Toby’s toys in the new pit and encouraged him to “find it.” Time will tell how effective this solution is for Toby. Meanwhile, he’s only allowed in the back yard with supervision. I’m pretty sure he’ll try to escape again.

Cutting with a Knife with Hemiplegia

  

At age 5, Mia was able to peel and cut a cucumber independently with some supervision. She has more limited use of her right hand due to a stroke at birth and resulting hemiplegia. Notice how she’s using her right thumb to hold the cucumber in place. For kids and adults with more limited use of their affected hand, cutting boards are available that hold things in place.

Today, at age 8, she used a utility knife to cut through cardboard for a school project. I don’t have a picture of that because I was supervising a bit more closely.

 

Spontaneous Supination to Receive Cherry Blossoms

 

Spontaneous supination (palm up) with both hands. My girls were playing with cherry blossom petals, and Mia offered her palms up to receive the petals from her sister. Supination has been one of Mia’s goals since she was an infant as she had a stroke at birth. Many people with hemiplegia struggle to turn the palm of their affected hand upwards. In the picture above, Mia is 5 years old and Zoe is 8 years old.

And, because this is the season when the cherry tree blooms in our garden, we use it every year as a way of marking time. So, in 2018, my girls are now 11 and 8. You may notice in the picture below that Zoe is as tall as the cherry tree. And, Mia has both of her arms in a relaxed position by her sides. This was not always easy for her as she used to frequently hold her right arm in a contracted and pronated position with both her elbow and wrist flexed.

Mia Changita

Changita means “little monkey” in Spanish. We are lucky to have Latina au pairs caring for my girls so here is “Mia Changita” doing her monkey thing!

Mia continues to amaze me, now at age six. This video is from a few weeks ago. Her inventiveness, strength, experimentation, and courage are all palpable. And, it’s really hard to tell that she had a stroke as she does most everything with both arms and hands and both legs and feet.

If you want to have some appreciation for this beyond imagining the abdominal strength needed to do this, check out my earlier post about Monkey Mia from when Mia first mastered the monkey bars at age four, or this one on neuroplasticity, or Mia learning to do skin the cat, and why Mia is an outlier as explained by Karen Pape, MD.

Tonight, Mia found the splint we used for constraint therapy when she was a toddler and until she was nearly 3 years old. She put it on even though it’s too small, and said she was going to give herself a “challenge” and give “righty” practice doing everything and that’s how she got ready for bed, using only her hand that doesn’t work quite as well as the other one for fine motor tasks. I asked her if she wants us to get a new splint that fits her better so she can do this “challenge” more often. She said yes. She asked me the name of the orthotist that we need to go see. I told her he’s Dr. Wall and he’s very funny. His name cracked her up.

Pediatric Stroke Clinic – 6 Years Old

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Today was our fifth visit to the Pediatric Stroke Clinic at MGH. The first was when Mia was 2 months old, then 14 months, 26 months, 4 years and 2 months, and today at 6 years and 2 months. Every one of these appointments has been in mid August. The stroke clinic happens once a month, and we’re on an August schedule, at first once a year until Mia turned two, now once every two years. It’s a form of time travel for me, revisiting this place, with an older and more capable child each time, answering the same questions and some new ones, sharing information, seeing if I’ll learn anything useful.

The heat, the drive, the traffic, parking garage, finding the bathroom, remembering doing it all with a stroller, getting a snack at the cafeteria, finding the right elevator to the eighth floor, waiting, the really friendly staff in the waiting area as the stroke clinic shares space with the pediatric oncology team. They seem friendlier and more gentle with families than the other floor with pediatric neurology and gastroenterology. The toys in the waiting area are nicer. There are many books and a beautiful huge fish tank.

Today, there was a new neurologist on the team and she was great! She is an M.D./Ph.D. from Buenos Aires, spoke Spanish with Mia, and is eager to learn from me as they work to set up resources for families. Mia’s main pediatrician is a woman, and all of her therapists have been women, but this is only the second specialist we have seen who is a woman. She took time to get to know us, was patient when Mia wouldn’t answer her questions, gave her time to warm up, and asked really good questions. She asked me what kind of support system I have. She asked me to share resources with her as they are setting up a website to support families. She offered to write letters to support me in advocating for Mia to continue to receive occupational therapy through the school district and to get speech therapy too.

I found a sweet video of Mia at that first appointment six years ago. She was swatting at the toy horse hanging from her carseat, snapped into her stroller frame. Then and now, I watch this video clip and see that she is hitting the horse a bit more purposefully with her left hand than her right. It’s subtle but noticeable. And yet, her right hand is active too. I used to wonder what it meant, what would she be able to do with her hands.

Today, Mia read aloud for the new neurologist on the team. She ran down the hall, with no apparent gait issues. She hopped as easily on her right leg as her left. She turned pages in a book, took off her sandals, all using two hands in a very functional way. She can tie her shoes, paddle a kayak, climb trees and rock walls, swing across monkey bars, ride a bike, swim, waterski, play soccer, ice hockey, lacrosse, and piano. She is amazing and our journey has been rich with rewards and challenges.

I know a family new to this world of pediatric stroke. I know several such families in the online community of CHASA (Children’s Hemiplegia and Stroke Association). It’s a scary, bewildering journey. Love your child as if they are fine. Educate yourselves to advocate for the best care possible.

I have felt sick this week. It started as a bit of congestion Monday evening and then turned into intense fatigue Tuesday afternoon, worsened overnight as Mia needed some nighttime parenting. I did get good sleep Wednesday, night but still felt tired in my bones this morning. I felt sick again this afternoon from the heat and sun during the drive as I didn’t take the time to put on my sunglasses. I have been doing some amazing healing work with Irene Lyon to support my nervous system in healing from stress and traumas small and large, recent and distant. I sensed that my fatigue this week is a release of long held stress. And, then today, as I was trolling through my memories brought on by the heat and places on our route into Boston and through the MGH campus, I was moved to write here to process all of this, and it made sense all of a sudden. I am releasing some of that stored tension, the wonder and worry that started when I learned my two day old baby had suffered a stroke.

I felt it all today, the fear and uncertainty that made me anxious through the early days, weeks, months, and years, intense pride and connection with Mia as she showed off her many skills, compassion for my imperfect parenting of both of my children through a tough several years, and joy to have them both on this journey with me.

Since I had to take the afternoon off from work for the trip into Boston, after we finished with the appointment, Mia asked me to take her to get new sneakers before school starts next week. We found shoes she loves, blue boys’ ones, no laces please. And, I agreed because last year in Kindergarten, she learned to tie her shoes in September and had to practice all year with her lace sneakers that are now two sizes too small.

We met Zoe at home after her afternoon playdate and took her to soccer practice. Mostly now, life goes on like this with our full schedules of work and camp, soon shifting to work and school. We get help from our au pair to fit in all the activities, transportation, meal prep, and care needed to support the development of both of my girls. And, occasionally, I make time to pause, write, and share how much I appreciate the wonder of it all.