Friday, October 31, 2014

It's In Her Code

It only took five years, but last year was the first year that Zoe seemed to truly enjoy Halloween. Between iffy autumn weather, indifference to or discomfort in her costumes, or (perhaps most cruelly) an inability to eat 95% of the candy she got in her basket, Halloween was never that much fun for her. There were some years she was back home and out of her costume within ten minutes. But last year, she braved a little misty rain and made it as long as the rest of the family. I chalk that up to two things: she picked her own costume for the first time (the Little Mermaid), and Daddy promised to make sure she got to try more of her own candy than in previous years (before he ate all the Twixes and Kit Kats).

The victory was undercut a little once we got home and saw pictures that different friends had posted on Facebook. One in particular had a daughter, who we know is within days of being the same exact age as Zoe, also dressed up like the Little Mermaid. I tried not to let seeing their girl walk from door to door behind her big brother, ringing doorbells and waving at the camera, sting too much, but it did. And it didn't ruin the day for Zoe, but it just reminded me why we get so frustrated that a fun holiday can't just be a fun holiday for Zoe, the same as for any kid. We know why, but that doesn't help. It was great that Zoe picked her costume, but I would have loved to be able to hear her explanation why she picked it, as this other girl was no doubt able to tell her parents.

It hadn't been clear why Zoe had wanted to be the Little Mermaid, but she'd definitely enjoyed it. A few months later we borrowed the movie from the library (again), and I watched it more intently. As I did, certain elements in the story began to stand out, and it answered some of my questions. I assumed, however, that my wife already had this shit figured out, since that's how things usually work around here. I wasn't prepared for the evening my wife came outside with me to talk privately, and she remarked how stupid she felt for not realizing why Zoe had been so drawn to the Little Mermaid. "It's because she can't talk," I blurted out. "And she wants to have legs. Or you know, be able to use the ones she has." My wife shook her head, annoyed with herself, and annoyed with me for realizing it.

It reminded me of the Ron Suskind piece from earlier this spring about his son's attachment to Disney characters, specifically the sidekicks. I've noticed that Zoe's interest awakes in any scene where the heroine is about to undergo some transformative moment. Zoe hates when we talk to other people about Rett Syndrome in front of her. She rubs her face in agitation, or she looks away in cool disdain. Still, she hears what we say in these conversations, and she's repeatedly heard us talk about the work underway in pursuit of a cure. She knows her own transformational moment may be around the corner, so she may identify with those moments when one of the characters in her movies is presented with them. Rapunzel's first moments outside the tower in Tangled. Tiana and her friends singing about what's going to happen when they're human again in The Princess and the Frog. But I don't know if she's identified with those characters to the same degree as the one who seems to be her new favorite.

This year, our house has been gripped in the oversize, destructive mitts of Wreck-It Ralph. We watched it with Hannah at least a year ago, but her toddler brother has taken to it unexpectedly. Dylan loves it; the idea that an over-sized person can make a living smashing other people's stuff  (even if it's just in a pretend video game) is the only thing to comfort his soul in its darkest moments, like when we make him go to bed. Because it noticeably calmed him down right before bed, we would play it a lot. At first, Zoe would get annoyed when it came on, mostly because she knew it was her brother's choice of movie, not hers, and that last hour or so before bed was precious airtime. She would even get so worked up, she'd start to have one of her Rett episodes.

A Rett episode can be mistaken for, but is not the same thing as, a seizure. They can last anywhere from one to fifteen minutes, depending on Zoe's disposition or what prompted it. When she's in the throes of one, her muscles will tense up, she will look off to one side, and sometimes open and close her mouth involuntarily. There are times we can calm her down, and prevent or curtail the episode. They can be caused by sudden changes in position; surprises, like a loud noise; or general annoyance (like the frustration at having to watch a movie your little brother picked). She has them almost every day, something that started about two years ago for her. During a recent episode, I asked her to stop glitching, a reference to the Vanellope character in the movie. It just slipped out, but I think she thought it was funny, and more importantly she listened. Over time, we noticed, she was laughing harder and harder at Vanellope's scenes (specifically any where she got to showcase her smart-assery). The cute little kid who winds up being an outcast because her body doesn't do what she wants it to? Sorry, try somewhere else, Vanellope, no one in this house is going to relate to you.

As Halloween approached, it came time to pick a costume. Zoe first selected Wonder Woman, browsing through the options on the Party City website using her Tobii eyegaze device. She seemed happy with that. But the more my wife heard Zoe's laughter in reaction to Vanellope's scenes in the movie, she wasn't sure Wonder Woman was our girl's first choice. She asked her if she would prefer to be Vanellope. The "YES" response was unmistakable, and my wife got to work. Amazingly, a replica of Vanellope's race car came together over the course of a week. Every time Zoe saw it, as my wife built it bit by bit, the pride on both their faces was my favorite part of the day.

She could not have a more perfect costume. She gets to use one of her least favorite aspects of her Rett condition (the wheelchair) to a cool effect. When she looks at it, I'm sure she says (to quote Vanellope herself), "THIS is me." Because it is. She's the sweetest little smart-ass kid we know, glitches and all. The kid is in a race every day against a cruel medical condition, and we have the utmost faith she's going to win that race when a cure is found. She might as well look cool and have a little fun while she does it.

Friday, August 15, 2014

Math Rules Everything Around Me

It all started simply enough. It was summer, and somewhere in our house, a child was bored. Normally I try not to get involved in matters like that, but the child in question was sitting at the kitchen table with me, and she was really bringing me down.

It was our older daughter, Hannah. She had slouched into the room while I was feeding Zoe dinner and sat down with us, giving us the gift of a deep sigh. My wife had just brought in our latest tomato crop from the garden and put it on the table. Given the weather peculiarities around these parts this year -- Polar Vortexes, Late Springs, Summers Without Swimming Weather -- our garden has underperformed and underwhelmed. For most of the summer, our cherry tomatoes have ranged in size from a Red Ryder BB to a cats-eye marble. We have struggled to find anything to do with them, but Hannah had the beginning of an idea that got me thinking. She looked at the pile and said "I wonder how many there are. Can I put them in this bowl?" "Of course," I said, "but you should count each one as you do." I figured that additional task would occupy her for almost a minute, which was precious to me at the time. The final tally was 43 (and to help illustrate my previous point, those 43 tomatoes, taken together, did not equal the size of a normal Roma tomato).

The large number of tomatoes made me think to the past school year, when Hannah and her first grade class were given a series of guessing contests by their teacher each week. How many jellybeans were in the bowl? How many clothespins were in the jar? Hannah had an uncanny knack for having the closest number. She "won" the contest at least three times (even though technically, there were never any winners). If the finer casinos in Las Vegas had a "Guess the Number of Clothespins" game, we'd be on our way there right now, plotting ways to spend our winnings in advance. Zoe is going into first grade in a week, and it occurred to me that she will probably have the chance to show off her numerical guessing skills too. Or would she?

Zoe is smart, but like many Rett girls, we struggle to find ways for her to show how smart she is. She has a Tobii eyegaze computer, and her teachers started to complement that with her own PODD book this year also. Each system has pages where she has access to numbers and can choose and say them. But given the page and screen size, her choices are limited. As I thought about Hannah's guessing acumen and the number of tomatoes, a comment from Zoe's summer school teacher in her daily notes from a few weeks ago came to mind: "Zoe counted all the way up to four today." Four is a long strike from forty-three. Every single number in between the two of them has proved useful at one time or another. And I got pissed. Because Zoe only stopped counting at four for them that day for one of two reasons: she either got tired (very possible depending on what else had gone on in school that day), or they only showed her that many numbers.

I immediately flipped to the number screen on her Tobii. The first screen showed 1 through 7. That's it. Granted, one of the reasons for that is the layout of the screen and the other buttons for which we need room on each screen ("Back", "What I Want to Say Is Not On Here", etc). But it was clear we were putting constraints on Zoe's counting that didn't need to be there. Either that, or we were electing to use the obscure "Base-7" numerical system. The next screen had 8 through 13. There was not a third screen.

I started editing right away. Clearing out unnecessary buttons, I made room for all ten numbers, plus zero (it deserves to be there as much as all the other numbers), and a button to skip to the next set of ten numbers. 11 through 20. 21 through 30. All the way up to 50.

Then I showed Zoe where they were and how to navigate them. She looked at me. She rubbed her face with her arm, as she always does when she's tired, and then she rolled her eyes, as she frequently does when the end of her patience for me is within range. That's fine with me. I accomplished what I wanted. She may not need them right away, on Day 1 of first grade, but they're there. She's equipped for more heavy-duty counting when she needs it. And I know there are going to be more than four clothespins in the jar at the MGM Grand when Zoe and I hit town for the Guessing Contest, and we make off like bandits.

Sunday, July 27, 2014

Special Day, Regular Girl

Monday was Zoe's sixth birthday. As most parents in our situation know, birthdays (like Christmas) never allow themselves to be a pure celebration. You're happy that your child gets to celebrate, but you're frustrated that they can't celebrate like other kids. You rack your brain for an idea for the right gift for your own daughter or son, since you don't have the luxury of them leaving illustrated gift lists around as soon as the Target Christmas catalog hits the mailbox (in time for their July birthday). You're confident that you used up your remaining perfect gift idea on the last birthday, and the cynical side of you screams that you've had an entire year to learn something new and inspired about your own child -- and you fucked it up. Every idea you come up with has some therapeutic value, and you fear that you're skewing far too close to that side of the spectrum and too far away from simple fun. You wind up settling on babyish toys instead of something more age-appropriate, and you're forced to give those recommendations to generous friends and family members who ask. You assumed you'd always know what your kids want, but a kid like Zoe always has something unknowable about her.

This is the first year we have felt confident that everything about Zoe's birthday was something she chose or would have chosen if she'd given voice to it. Her year in kindergarten has brought a lot of firsts with it, and it has begun a transition from someone we babied too much to a big girl. She has moved away from constantly watching the Wiggles to enjoying the same movies and shows as her sister (Frozen, in particular, as has already been noted). This year, she picked everything. Her birthday dinner. The party location. And every choice was clear.

The first half of the day was spent in summer school, where her class had a party for her. We sent in cupcakes to share with the class. This has been her fourth year in summer school, and the teachers have had a party for her each of those years. We had to send the cupcakes in this time, because this was the first time in four years that we weren't invited to the party. For all we know, that was Zoe's idea, since she knows she's a big enough girl to have a good time without us.

She got home, and while she normally might have napped, the topic of going to the pool came up, and her excited giggles gave away the fact that she was mildly interested. So she took off with her mom and big sister to enjoy one of this summer's few days warm enough for swimming. Normally, an afternoon of swimming would be enough to tire her out, but we didn't have time for a nap after that either, because she had a friend from kindergarten coming over to visit.

This may sound like a small deal to some people, but this was the first friend Zoe has ever had come visit who was not the child of one of our friends or the younger sibling of one of Hannah's friends. The only reason we know this girl and her family is because she has been Zoe's friend in their general education kindergarten class since the start of the school year. The friend wasn't able to come to Zoe's party this weekend, so she wanted to visit and drop off a gift. The friend had picked the gift out herself -- a sampling of the same "Rainbow Magic Fairy" books that she'd been reading (and that Zoe's sister had plowed through last year). While I wasn't anxious to see another one of these books enter the house, this was different. The friend had picked out something that she enjoyed and wanted to share with Zoe. Her mom didn't ask us for gift ideas. The friend just made a brave, bold assumption that Zoe would love the same things she did. And she was right.

Finally, we had our family dinner and celebration. She got to open presents from us, which for once, felt like the right gifts for her age, for her interests, and for her ability to enjoy them. We gave her Frozen on DVD, along with Barbie dolls of Elsa and Anna. These seemed to be a safe bet upon purchase, but you never know. Her expression on seeing them was worth all the anxiety we'd subjected ourselves to with previous birthdays and Christmases. It's the look of a kid with agency over her own birthday, a kid who got exactly what she asked for, even if she couldn't come right out and say it.

Saturday, July 12, 2014

The Wonders of Eye-Gaze

We've written before how Zoe uses her Tobii eye-gaze computer to express herself, both at home and in school. Here, though, what she's really displaying is remarkable restraint and patience with her little brother, who can't keep out of the way, and obviously likes to state the obvious. If we were being generous, we'd say he was modelling for his sister, but he's really thinking of one person and their tummy, even though he'd just eaten. You can watch the video of the action here.

If you do want to read a compelling piece about augmentative communication we enjoyed this week, check out this post from another special needs parent.

Friday, June 27, 2014

A Story for Sisters

I love being able to recommend movies and music to friends, especially when it's something they wouldn't have had exposure to otherwise. I'd love, right now, to be able to say that one of the movies that our girls have gravitated to is this little unheard-of gem from Disney with a great story about two sisters, and a few great songs. I'd love to tell you how much you'd like it, if only you knew about it. If only people had talked about it more. How if you searched hard enough on YouTube, maybe you would find one or two of the songs. But I can't, because I'm talking about Frozen.

Of course you've heard of Frozen. Everyone has heard of Frozen, as this great article in the Times illustrates. I've been thinking about the movie and a few of the songs this week, even before reading that piece, not just because they have been sung non-stop since January by the women who live in my house. Our older daughter Hannah turned 7 then, and chose, as her party, to have her girl classmates over to watch the movie and have ice cream in their pajamas (a sleepover with a more humane endpoint for us parents). We even had a special surprise mailed to us from my wife's cousin, who works for Disney.

All the girls, including Hannah had seen the movie already, so they didn't need to pay full attention throughout. They would mess with each other's hair, run around the room, or bounce around on our mini-trampoline --  basically fool around like seven-year-olds. Until the songs played. Every song commanded complete silence, which amazed me, but it didn't prepare me for the near-religious trance that descended on the room once "Let it Go" came on.

Hannah has one friend in particular who doesn't fit in with the rest of the girls. She gets picked on by a few of the other girls, and we're very happy that Hannah tries to stick up for her and be her friend. My wife and I  had to take care that night to make sure this girl was having fun; she'd even gotten teased at the beginning of the party for her choice of footie pajamas, and there had been tears. This girl was completely transfixed and transported when "Let it Go" started. Unblinking, her mouth moved silently along with the words. I didn't have, at that moment, a full command of the lyrics (at least compared to after the weekend's many repeat viewings). Once I knew them, I could see how the song spoke to this girl, who clearly felt like an outsider, at too young an age.

And as we watched the movie again and again that weekend, when the song came on, I would look over at Zoe, my own unusual treasure of a daughter, who at this point is old enough to wonder just how she fits in, here at home, at school, out in the world.  I could see her, too, absorbing the words and music. We played her the song more and more on her sister's MP3 player, or with the YouTube clip of the movie scene. Even her teacher caught on, replacing the Wiggles clips she used to play for Zoe as a reward for, or break from, hard work, a reflection of Zoe's tastes growing up along with her. And it is a great song, and a great scene (although it is not my personal favorite rendition of it).

But that is not the song from Frozen that resonates most with me. There is a different song that destroys me. Every day of my life I see two sisters with barriers put between them by Rett Syndrome. Some of those barriers may be working in our favor; a younger sibling who can't talk or use her hands effectively is also a younger sibling who can't tell on you, take your Barbies, or tell you to shut up. But most of the time, we see the girls' disappointment that they can't do all the same things, together, whenever they want. Riding bikes. Playing dress-up. Building snowmen. We see and feel that disappointment ourselves. It goes beyond disappointment.

We are raising two separate girls but trying with all our power to not have them have two separate lives. Granted, no one is wearing gloves to save the rest of us from her icy touch or quarantining themselves in their room, but there is still a division on which we never planned (especially for two girls we were so excited would be just 18 months apart forever). This spring we rearranged furniture in the house to make space in our son's room. As part of the moves, Hannah got upgraded from a twin- to a queen-size bed. Immediately, she started talking about having Zoe sleep over in her room. At first, I wasn't sure if it would work, but we rigged up pillows and cushions to help keep Zoe stable and in place. They've had a few sleepovers, but it's not the same as what, I'm sure, Hannah envisioned. They may giggle, Hannah may whisper to Zoe while they're still awake, but they can't pretend they're sharing secrets or arguing or anything that should come with a sisters relationship.

It is a beautiful spring day here, and even though we had snow flurries the other morning (a reminder that this winter refuses to give us up), no one is building a snowman. Zoe is napping, but we will try to do something with her outside later. I'm watching out the window as her older sister walks around the yard, talks to herself, and picks dandelions. It doesn't take much imagination on my part to know exactly what she wants.

Tuesday, May 20, 2014

The Promise of Ongoing Trials

Today was International Clinical Trials Day (not that I needed to remind anyone -- our Target started decorating for it after Valentine's Day). Our family obviously has a vested interest in the different clinical trials for Rett Syndrome treatments going on around the country, as each of them present an exciting research and testing avenue for Zoe and girls like her. However, when we hear that phrase, we think of one specific trial and one specific team, first and foremost.

Last month, we took Zoe down to Rush for her semi-annual visit to the regional Natural History Study. We've been making this trip with her twice a year, dating back to just after we got her diagnosis. It's provided an introduction to many other Rett families, whose friendships we've come to treasure. The study has also helped us form a wonderful relationship with a research team from Children's Hospital in Boston. Every six months for the last four years, we've gone down to Rush to meet with the same team, who are dedicated to finding a cure for Rett Syndrome. They've measured Zoe, taken her temperature, annoyed her on some days, but most importantly, gotten to know her and us. We hope through this whole process (which includes meeting with a hundred or so girls and their families in the span of a weekend), they've learned a lot about this awful condition. We know that we, in turn, have gotten invaluable insight into the work they're doing, as are their colleagues from Baylor University, Alabama-Birmingham, and Greenwood Research, who join them for the trip.

Sadly, this was the last time the teams will travel here for the foreseeable future. The study is being rearchitected to shift the data collection responsibilities to a local research team at Rush. This will save the research study funds in the short term and allow these teams to focus on their work in their home facilities. Each team is incredible, but we are partial to the Boston team that has been our constant, Dr. Kaufman and Kate Barnes, who are managing a very promising clinical trial, yet in its early phases. They are studying the impact that insulin-like growth factor (IGF-1) can have in strengthening the nerve synapses that have never had the chance to function in girls with Rett Syndrome, as well as people with numerous other neurological conditions like it.

Since this was our last trip to meet with them, we brought our older daughter Hannah with us for the first time in these four years. She had always been curious what these visits entailed (and why she'd been excluded from them; she didn't realize it was to shield her from the monotony of a four-hour hospital visit). About a week after our visit, she told me she wanted to invent a kind of medicine that Zoe and her Rett friends can drink to make the condition go away. I told her that was a wonderful idea. My wife and I had always told Hannah she can do whatever she wants in life. I didn't have the heart to tell her that this was probably the one thing in life she wouldn't be able to do, as much as it would mean to her. I know that Miss Kate and Dr. Kaufman, Zoe's great team of friends in Boston, are going to beat Hannah to the punch.

Good luck to them and to all the other research teams. We'll miss you, and we'll see you soon. We hope we helped.

Tuesday, April 1, 2014

Guess Who IRSF Let Be Dad of the Month?

Once again, I welcomed the chance to write about our experiences with Zoe in a forum different from this one. Sad to see my month in the spotlight come to an end...

You can find what I wrote, along with great contributions from even greater Rett dads, right here.

Monday, March 10, 2014

Missing Grammy

My girls have lost their Grammy. My mother-in-law was an incredible woman, as all who knew her would attest, and over the last few years, she was unfairly robbed of the version of herself that we loved. Originally, doctors thought her slow-building dementia was the result of Parkinson's or Alzheimer's, but repeated tests ruled those out a year or two ago. Instead, she had a condition called Lewy Body disorder. The person who suffers from it actually retains more of their mental faculties than is apparent. Their memory may suffer, but not to the same extent as with Alzheimer's. Their body just deteriorates, to the point that it requires an incredible amount of effort to perform simple motor tasks or express the most mundane thought. Once we learned more about the symptoms, my wife and I found them chillingly familiar. We already had someone in our lives, someone we love dearly, who is trapped in a body they cannot control. As Elise's condition worsened, I think our experiences with our daughter Zoe gave us better insight into what she was going through. The connection they already shared was bolstered by the common enemy they had to fight: a neurological impediment that waylaid the connection between their minds and their bodies. This bond of theirs made us more sympathetic to Elise's suffering. I hope, at least, that she would say the same, now that she's gone.

This was the first person close to our girls who passed away. Knowing that Elise's health was in decline, I was hoping that the girls' goldfish would die first, so we had an easy way to introduce this intimidating concept. It wasn't an unreasonable expectation -- we'd had the fish since August, and the family shared an amiable negligence for it. He didn't eat every day, and his water went way too long before it got changed. Still he stubbornly hung on, and he refused to die early enough to be an object lesson, which is always the way it seems to work out on TV. Instead, we had to explain death to the girls in the context of someone whose value to them was beyond measure.

Hannah got to see her Grammy in the last few days before she passed, which may have helped her to process things. Due to different factors in our schedules, we never were able to get Zoe over to see Grammy in time. I don't know if it would have helped or not. She may have had a hard time recognizing Grammy if she had. Elise had become a withered version of the vital person we all remembered. She spent the last week of her life in bed. Like all of us, Zoe would have too many memories of Grammy, even in the last few years, just doing something -- being active, playing with her and the other grandkids, cooking, singing. The Grammy at the end was not that Grammy, and it may have confused Zoe even more to see her like that. Instead, I had to explain to the girls, much more abruptly in Zoe's case, that Grammy was too sick, and her body was too tired. She was going to go to sleep soon, and she wouldn't wake up, which is what happens when someone dies. I was proven right within days.

It is hard enough to explain death to any child that age. There are just too many elements of it -- the finality, the overwhelming absence, for which they have no frame of reference. Hannah asked fewer questions than we expected; the questions have filtered in over the last month, but we aren't sure how well her mind has processed all this. We are even less sure with Zoe. We don't know what questions she has, because none of our means of communicating with her are sophisticated enough. She has an eyegaze computer that she uses to tell us simple phrases, ask questions, or answer them. The phrases and questions that would provide us an entryway into the topic are even too overwhelming to try to broach with her. It's even more difficult to try to guess what questions she has and put thoughts in her mind, worries or confusion that weren't there. Still, Zoe has always been Daddy's Little Stoic, so she might be coping just fine.

While Zoe and her Grammy loved each other immensely, I will always suspect their relationship was not as deep as her older sister's relationship with Grammy. The girls are only eighteen months apart, but much of the time Hannah spent with Grammy was time that Zoe couldn't share, by definition. In the time around Zoe's Rett diagnosis, and the year or so that followed, Hannah would stay with Grammy while my wife and I accompanied Zoe on hospital visits: EEGs and sleep studies, overnight stays to battle pneumonia, or biannual trips to Rush to participate in a research study. While we were off watching Zoe get measured, or have her temperature taken, or get hooked to an IV, Hannah was at Grammy's house, playing the piano with her, or baking cupcakes, or setting up toy trains. It's safe to say one of the girls may have been having a better time in those instances than the other.

But that's not to say that Zoe and her Grammy did not have plenty of special time together. It was just quieter and different. Grammy was always content to sit and cuddle with Zoe and watch the same Wiggles video over and over, or sit in a rocking chair and sing with her, as she'd done with all the grandkids. As Zoe got bigger, but her body and its abilities didn't catch up to her, Grammy may have had a hard time thinking of different things to do with Zoe, but those old favorites always worked. And cruelly, as Zoe started school, and we got welcome assurances about her normal mental abilities, her sense of humor, and her increased interest in age-appropriate activities (all things that Grammy would have appreciated and tried to cultivate), Grammy's own abilities began to deteriorate. They dovetailed. I will never forget one of my mother-in-law's last incisive thoughts that she could fully express. She, like us, suspected something was wrong with Zoe prior to her diagnosis. She passed along information to us about Angelman's well before we had any testing done on Zoe, well before we had resigned ourselves to the fact that she needed to be tested for anything. I read the information and dismissed it immediately. I was angry with my mother-in-law for putting this information in front of us, not-so-distant relative to the facts that it was. It was one of the few times I can remember being angry with her for anything. But she was right, she got across her point, and it helped us ultimately be open to accepting Zoe's condition. It was one of Elise's final, appropriate gifts to us and a reminder that she knew children better than anyone.

Prior to her funeral, the younger grandkids wrote letters to put into Grammy's coffin, and Hannah wrote letters on behalf of Zoe and her baby brother. Hannah didn't know what Zoe was thinking any more than we did, so many of the memories she wrote about were her own (and many of those things Zoe didn't participate in the same way). I made a point of asking Zoe some specific things that were important to her about Grammy, and she looked at me intently and smiled. I had Hannah add them to Zoe's letter, acting as her sister's hands as she so often does. It was one of the many times that I remind myself to trust my instincts with Zoe and know that she can, despite the many obstacles, clearly communicate to us that we are on the right track to understanding her.

At the actual funeral, Zoe fell asleep in church, possibly because she was legitimately tired and possibly as a defense mechanism to the physical and emotional strain. She missed her mother's beautiful eulogy about Grammy, but even in her sleep, she might have heard it, observing the words that any mother would love to hear from her daughter. Zoe is a daughter who loves her mother; she knows the message my wife conveyed whether she was awake to hear it or not.