Monday, April 3, 2017

Home Turf

A few weeks ago marked the one year anniversary of us moving into our current house. We made the move for Zoe, so she could have better ground floor living space (not knowing that we would need even more room for her baby sister, who also marked her own one-year anniversary recently). Zoe wound up with the biggest room of all the kids, and as time and budget will allow, we will continue to enhance her space, making things more accessible for her long-term care. Aside from the house itself, we have enjoyed the benefits of being in a part of the neighborhood populated by more kids, right next to the elementary school. Zoe's older sister walks the one block to school, and all the kids enjoy the proximity to the school playground. Zoe has one of the least efficient commutes imaginable; her service plan mandates bus transport, which takes her five blocks out of the way to get to the school's front door, even though the school is visible from our own front door. As drawbacks go, we can live with that pretty easily.

A week or so ago brought the last snowfall of the winter. For reasons I can't recall, Zoe was not ready when her bus came. My wife walked Zoe down to school in her wheelchair a little after the first bell rang. I wound up having to follow them an hour later with the wheelchair mount for her Tobii or some other forgotten piece of equipment. I happened upon their trail in the snow, still clear despite additional accumulation. Her siblings and friends routinely leave their boot prints in the snow, out playing or just wandering the neighborhood. Given the assistance she needs for those activities, and her general disdain for the cold, Zoe doesn't get the chance to leave her own mark. These tiretracks were like some odd archaeological find, unique enough to move me, even though I knew their creator so well. I loved knowing that no other kid in the neighborhood (for good or bad) left behind the same kind of trail as my Zoe.

Sunday, January 29, 2017

Some Outgrown Notions

Zoe's always had a good relationship with Santa Claus. That seems like an odd statement to make about a little girl who rarely gets anything for Christmas she wants or can readily use. Sure, she's gotten a gift or two each year that she's enjoyed, but most of the stuff from Santa sits in a corner in her room or gets carried off to parts unknown by her little brother, doomed to be gradually destroyed.

One of our favorite pictures is of Zoe, age 4, walking (with Steph's support) to see Santa and sit in his lap. There is a look of wonder on her face so beautiful, as if she knows this guy with the beard might just be able to unlock something magical for her. Subsequent Christmas visits to the mall were just as nice, but not as dramatic and moving. She would sit with Santa, snuggle with him, and telepathically let him know what she might want him to bring.

This year something was different: Santa himself. There had been new mall Santas before -- maybe three different ones in five years -- but they always resembled each other just enough that even I, with a year in between visits, could never remember if it was the same one as the year before. But this year, he was unmistakably different. He had dark eyes, where the others' had been twinkly blue, and he had charcoal-colored eyebrows. Despite the beard and standard red suit, he looked younger and different, and Zoe knew right away. She stared at him angrily for the entire time she was in his lap. All six of the pictures the mall elves took show the exact same glare, which continued once we'd said goodbye to Santa and moved over to pay for the picture. It was pretty clear that she was not buying this shit for one more second - Santa was an imposter. 

As we drove home, I didn't feel sad or wistful. I was actually gratified that my daughter was every bit as sharp and observant as we tell everyone who doubts her (or other Rett girls). I also won a gentleman's bet with myself that she would figure out Santa might not exist before her older sister, who's nine. She is about the age when I started to doubt Santa's existence. It only follows that she has had the same doubts sown in her head, from hearing classmates talk around her. Unlike her older sister, she hasn't voiced those doubts, because she can't, and we haven't soothed them for her, because we didn't know we needed to. But I'm convinced she's onto something, and our conversations with her leading up to next Christmas will be a lot different than in the past few years.

It feels like a big hurdle in her maturation, but one that doesn't sadden me. So she doesn't believe in Santa, but she also doesn't have to. She hears her parents talk about ongoing research and possible scientific breakthroughs enough. She might have more faith in a whole other group of people to deliver what she wants. They aren't up in a North Pole workshop making sleds and dolls; they're working out of labs across the country every day. We hope, as does Zoe, that they got all the microscope slides and Petri dishes they asked Santa for this year. With the reversals in symptoms for which we've been hoping, it's not crazy to think Zoe will, before too many years go by, spoil the truth about Santa for her younger brother or sister, as any big sibling should. If not, we'll continue to wait, and Zoe will look with her lovely, bemused expression as first her younger brother, then her baby sister, and eventually her older sister realize in turn what mystery she figured out this Christmas. 

Saturday, July 11, 2015

The Giving Up and the Giving In

About a month ago, someone from our Rett community shared a link on Facebook from an adoption agency. A family was giving their six-month-old son, who had just been diagnosed with Angelman's Syndrome, up for adoption *. They already had three children. There was no explanation in the link as to why the family was making this decision. There was possibly an extenuating circumstance, maybe two, but without knowing what those were, our impulse was to feel uncomfortable reading about the family's decision. Like many of the people who'd shared the link, the story saddened us. My wife drafted an email ** to the adoption agency, appealing to contact the family, to try to understand their reasons. I don't think she ever intended to send it. I don't think either of us really wanted to know their reasons, assuming the agency would even give us a response.

It really wasn't our business, but the situation still meant something to us, and we just assumed letting these people know how we felt would change things, showing them how wrong we thought they were. This family was manufacturing a solution that would not solve their problem. There are certain problems that aren't meant to be solved. And I began to wonder -- was I envious of their ability to make that choice? Discounting the profound regret they would likely feel every day for the rest of their lives, the parents were serving a huge injustice to their other three kids, who would undoubtedly remember they once had a brother who was excised from their family when he was six months old. I don't know what it is like to be the sibling of a child with special needs, but I live with a few children who can vouch for the experience. While it must be harder to be Zoe's sibling than it is for Hannah and Dylan to relate to each other, there are things about the experience that neither would sacrifice if given the choice (whether or not I'm giving them too much credit is beside the point, at least till they get a few years older). My three children are lucky to have each other as siblings. And I don't just mean that Zoe is lucky to have the two of them. All three are lucky to have each other. It is not an exaggeration to say that Dylan might not even be here if Zoe didn't have Rett Syndrome.

Back over on Facebook, where this story started (like all great ones do), I watched about a week ago on one of the Rett Syndrome forums as a single Rett mom tried to elicit sympathy from the group about her situation. She then rejected the show of sympathy she received from another Rett mother, who'd disqualified herself because she happened to have a husband and more resources with which to face her challenges with her daughter. Apparently, a huge and rare shared circumstance was not enough to bring these two people together, even on social media. The conclusion I took was: we're all different, and maybe none of us can ever understand one another. Comparing our family life to other Rett families can be both rewarding and futile. I'm not foolish enough to think that we don't have some advantages in dealing with our situation. Money and means count for something, and we're somewhere in the middle of the curve for both. Yes, we have some privileges and some circumstances, and some resources that not everyone in our situation has. But you can do what we do for Zoe every day without any of those things. It's hard as shit, but you can do it.

I often look at Zoe and wonder what she would be like without Rett Syndrome. There are elements of her personality that are unquestionably informed by it, but there are other traits she has that have been there since the start (before she knew she was any different than any other kid). We see it in her expressions, in the choices she makes, and how she reacts to us. She might not be as precious to me if she weren't so dependent and vulnerable. Her face might not be as gracefully beautiful if it could say mean things to me, her mother, or her siblings. Without Rett Syndrome, I might be wrapped a little more loosely around her finger than I am now, but I would be wrapped around it nonetheless. We gave into Zoe a long time ago, and we could not do without her. We need her just as much as she may need us. I can understand the choice that other family made, but I am far more comforted in the fact that I never had a choice in any of what has made our family, our family.

* The fact that it was Angelman's struck a special chord with me. It's a condition very similar to Rett Syndrome. Years ago, before Zoe's diagnosis, Steph's mom had gotten an email from her sister with information about Angelman's. The context was, essentially, could this be what's wrong with Zoe? I was furious; this was back when I still told myself that nothing was wrong with Zoe. Such a time existed, but its window was small. It took me longer than it took my wife to recognize that there was anything about Zoe for which we needed to be in denial. And it took me longer to recognize that there was something wrong that needed to be identified and fixed. At the time, though, I was angry that this was being discussed among family members, certainly outside my earshot, and very possibly outside my wife's. For us, we didn't have to wait too much longer for a correct diagnosis, and any resentment I felt at those other family members passed quickly.

** I did not, until I asked my wife to preview this post, realize she actually sent the email. The message she sent is beautiful and sweetly in-your-face, much like the woman who wrote it:


I read your urgent alert about baby Spencer needing a forever home, and I have been in tears and unable to stop thinking about that child ever since. I am the mother of a child with Rett Syndrome, very similar to Angelman's Syndrome, and I wish I could speak to Spencer's birth parents and discuss their reasons for giving him up. I wish I could show them the statistics for children with special needs finding forever homes, or perhaps direct them to a site like Reece's Rainbow to see just how many children with special needs there are on the verge of aging out of the system without ever finding that family. I would love to show them pictures of my beautiful daughter and tell them that doctors and genetecists and the internet are giving them the worst possible outcomes, and cannot possibly describe the joy these children bring. 

I do not have a home study, as my family has not been looking to adopt, but I do know what it's like to care for a child with profound physical needs and feel like it's a privilege and not a burden. I know how these children make everyone around them - parents, siblings, cousins, teachers, friends - better people for knowing them. I know what it's like to receive a diagnosis after feeling like you had a perfectly healthy child, and the fear and mourning that accompany the loss of the life you planned, for yourself and your child. I certainly know that that highly-charged emotional time after diagnosis is not at all the time to make decisions as important as this, and I wish I could tell his birth parents that.  

I would love to share the research currently underway that shows a treatment for AS is not only possible, but probable; that there is evidence to suggest that it may even be reversible. I would love to give his birth parents hope when I'm sure all they are seeing at the moment is darkness. But in the absence of that, I have shared Spencer's story in the hopes that someone who is looking to adopt can see all of these things and give this sweet child the love and support he deserves.

Friday, March 13, 2015

Who Asked You, Anyway?

Dylan has been fascinated by Zoe's Tobii device for a while now. At home, we usually have her use it when she's eating, as it's easily accessible at the kitchen table. However, anything that's easy for her to access can also be easily accessible for unwanted toddlers. He needs such little encouragement to stand in between Zoe and the device and push buttons, both literal and figurative, until we get annoyed, and I push him away. He's been doing this for months, and we've seen an inverse relationship between her interest in using the device as his has increased. According to her teachers, she uses it regularly and effectively at school. It's possible she's too fatigued from her day to use the device at dinnertime, but it seems more likely to me that she's too exhausted to fight over it with her brother.

The other night, he was upstairs while Zoe was eating. I was trying to model a few phrases her teacher had emailed us about a lesson they'd done on the solar system, and he heard us. And he came running. As usual, he ingratiated himself right in front of the device and began pushing buttons until he got to the screen that had all the colors on it. And he started to pick each one, listen to the recorded voice, and repeat after it. I'd never heard him say the different color words before, and I probably would have been prouder of him under different circumstances. But it was showing off. For lack of a better term, it was a Dick Move. And I could have been proud of him for being able to say his colors at Age Two, but that would always be outweighed by my irritation at someone - anyone - messing with Zoe. It is unfair in a family of three kids, but it's the law. You can't expect me to take your side against Zoe. You're going to get a light kick in the butt and get sent on down the line, where you can sit by yourself and say your colors to your heart's content. I can be proud, but I'll do it quietly when my girl is around.

Wednesday, March 4, 2015

If You All Want To Adapt, I'm Not Going to Stop You

A few weekends ago, we were at a birthday party for one of Zoe's boy classmates. The kid really likes sports, so the party was at the gymnasium in our local rec center. One of the rec center employees, a high school kid, was tasked with moderating dodgeball, kickball, and basketball for a bunch of first graders. There weren't a lot of us parents out there on the floor -- just me and the father of the birthday boy. His son didn't need his help, so the other dad could kind of float around, have fun, and mingle with the kids. I stuck with Zoe, since that's...what I do. And I dragged her along to play the games, since that's the other thing I do. Usually, she likes it, if her energy level permits. When it doesn't, she gets annoyed, but she usually manages to tolerate my stubborn insistence.

We were in the field first for kickball. Initially, I positioned us too far away (right field, where I learned to blend in so many years ago when I started playing organized baseball). A few at-bats went by with no action. I figured, if we wanted to just stand around, we could do it anywhere, so I decided to move us over behind second base. That part of the infield was too crowded, though, so I moved us over to the hot corner. However, I didn't have time to explain to Zoe why it was called that before the next kid up kicked a screamer right at her head. I was able to make a play from my knees, knocking the ball away while holding her upright. It exhausted her (or so I told myself as I struggled to catch my breath), and we took a break to sit on the sidelines. The break also gave me a chance to explain to her who Orioles' third baseman Manny Machado is, and how hard it would have been for him to make that same play, especially if he'd recently turned 41 and was incredibly sleep-deprived. Luckily for her, it was our turn to bat before I could get too in-depth with my story.

We were fifth in the batting order, and the bases were actually loaded when we came up. I wasn't sure she understood what an important kickball run-producing opportunity this was. I whispered to her to get ready, and just as I did, her teammates started chanting "Let's go, Zoe, Let's GO!" If I'd been watching this unfold on television, I'd have rolled my eyes and changed the channel. What kind of cliched, feel-good movie crap were they trying to subject me to? If they'd started a "Rudy"-style slow clap, I would have known right then and there they were just messing with me. But they weren't. These kids were sincerely rooting for my girl. And this wasn't even kids that we consider to be her friends. The girls we knew were all on the other team. Zoe and I wound up on a team with all the boys -- those boys: the crazy ones, the ones who punched everything. The ones who I always assumed said shitty things about her amongst themselves, when no one important was listening. Thirty-five years ago, I never would have done what they were doing for Zoe. I probably would have been saying shitty things about some kid with special needs. Which doesn't mean I was a jerk in those days. Our educational environment was just more compartmentalized, and we didn't interact with special needs kids our age in any meaningful way. There was one special needs class in my school growing up. The kids in it were different from us, we assumed. Furthermore, we assumed they were not different from one another, in any meaningful way. Now, the kids in Zoe's class might not be able to enumerate the differences between Rett Syndrome, Down Syndrome, or Cerebral Palsy, but they seem to know there are differences. They seem to get the fact that they're looking at an individual with their own merits. So someone's doing something right. And I know a few people who are grateful for it.

Zoe and I did not kick a grand slam and get carried off the field on the first graders' shoulders. It's harder than one might think to manipulate a child's foot to connect with a kickball while holding them up with your other arm. But we made contact and got on base. The boys cheered behind us, but I didn't look back at them as we ran to first. I've learned in the last few years that my eyes have this horrible allergic reaction to people being kind to Zoe, and it's possible the first grade boys would have made fun of me for it (and possibly punched me).

We switched to dodgeball after another break that Zoe and I both needed. The kid who was the ringleader for the "Let's go, Zoe" chant wandered over and asked if they could throw the balls at Zoe. "Sure," I said. "Try to be gentle, though. Don't peg it at her head or anything." He looked me over with an expression that told me he might not know the term "double standard" yet, but he knew one when he heard it. I was fine with that. Kickball, dodgeball, basketball. These are all things with standard, straightforward rules. Figuring out how to include a child with a disability like Rett Syndrome is not one of those things, and we're making up the rules as we go along.

Friday, February 13, 2015

The Ending to Every Story

I'm probably not alone in affixing a certain emotional importance to the cultural figures I admire. And while it would never be the same as with a friend or family member, when one of these cultural figures passes away, I have an unsurprising emotional reaction to it. Still, I can't always predict the power of that reaction. There are writers whose work I love more than that of the late Hunter S. Thompson. Yet, when they've died, it hasn't affected me as intensely. I vividly remember coming home from a pickup hockey game late one night about ten years ago, reading the news of Hunter's suicide and just putting my head on my desk in sorrow for a good ten minutes. As another example, I've always loved both Bruce Springsteen and Neil Young, but I can say without hesitation that Springsteen's music has always meant more to me. However, I think when they both pass, I can imagine myself being far more upset about Neil Young's death than I will about Springsteen's. It's hard to articulate why that might be, but it may have something to do with my sense that I'm much more comfortable that a world exists that can produce and foster someone as singularly odd and affecting as Neil Young.

I was not expecting to hear that David Carr passed away last night, no more than I was expecting to be so saddened by it. I had never heard of him before seeing him interviewed on "The Colbert Report" right after Night of the Gun was published. I bought and read it immediately, right at the same time I was writing The Big Deal. I had never forced myself to write something that honest before, but to have his model at my fingertips was an immeasurable inspiration. I think the only other thing that had as much as an influence on my writing at the time was re-reading Lorrie Moore's devastating (and devastatingly funny) "People Like That Are the Only Ones Here", as much as a model for humor and perspective as was Carr's tour de force. While the struggles he wrote about are nothing I've ever experienced, his writing still made me feel a connection. After all, we had some things in common -- we both had two daughters we loved immensely. But only one of us wrote an intensely powerful memoir that should be read by anyone wanting to write seriously and movingly about their own lives.

I had read a few more things that David Carr wrote in the last few years, especially once I happily realized he used Twitter to promote new columns I wouldn't have found otherwise. Not having more things to read from him won't be the biggest loss, but it is sad. Sadder though, is the thought that, while he hadn't completely defeated his demons over the span of his memoir, it seemed possible that he had in recent years. And maybe he had. Maybe those past experiences took their toll. Some shit catches up to you. Some shit is just out of your control. We know this quite well, from our experiences with Zoe. Rett Syndrome is out of our family's control. Rett Syndrome may catch up to us. We all think we, and the ones we love, are long for a world that has always had other ideas. The Big Deal suggested that Zoe will have a happy ending. Carr's memoir suggested he might have a happy ending, but if he did, it didn't last long enough.

Thursday, January 22, 2015

Loud and Clear

Steph and her siblings were recently looking at some old videos from their mother's camera. Not old, as in from a Super 8; old as in from a flip camera that her mom had a few years ago. One of the videos was of Zoe, right after she'd started preschool, and the video was amazing to see now. One thing that astounded me was that I apparently was the cameraman, even though I had no recollection of the conversation we captured. Another thing that amazed us was how accurate it was to call this a conversation.

Zoe is vocally interacting with Steph in a way we don't really see anymore. Three years have gone by since the video was taken, and when I say we don't see this anymore, it's not me lamenting something we lost. Zoe now has many other ways to communicate with us, and we've learned to navigate those together in those few years. But there isn't usually the same urgency and expression that we can see in the video. This younger Zoe is so intent on letting us know how her day was -- the answers to Steph's questions, the laughter in response to certain things, the "NO" when she asks about Seth being her boyfriend (no offense, Seth).

This was a year or so after her regression and diagnosis; she's still figuring out what she's supposed to be able to do compared to other kids in school. She's dealing with the frustration of knowing there are gaps in her abilities. There is desperation in just this simple conversation about her day. I love that Zoe has learned ways around some of these barriers and can cope with that frustration. But I miss that little girl, that bespectacled little professor, and I'm not getting her back. I'll say the video is good enough, but the video isn't good enough.