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I’m moving! Well, my blog is moving. Not that it makes a whole lot of difference to any of you, but beginning tomorrow (Friday) morning, my blog will be undergoing a makeover and moving from WordPress.com to WordPress.org. The whole process is set to take about three days, so during that time, I won’t be posting. Come Monday morning, my new url will be lisamorguess.com – whooee! I will be the master of my very own domain! I’m really hoping not to lose any of my followers; you should be redirected to the new address when the transition is complete, but jot down that new address anyway, won’t you? Because the fact that you take the time to read my musings and ramblings really means a lot to me.
And I’d like to plug jellyfishweb.net – they’re the kind people who are handling the move for me.
Until we meet again!
My friend Meriah wrote about happiness today: Happy-Making: Goals for 2013 and What Happy People Do. Interestingly, I was sitting in the rocking chair earlier this morning, nursing Scarlett, and musing about happiness. Meriah’s post has spurred me to try to find words for the thoughts and feelings that float around in my head.
I’ve been short on happiness of late. There are a whole lot of reasons behind this: my marriage has taken some major hits over the last couple of years (which I have not written about; maybe someday I will), and although we’ve come a long way toward recovery, things still often feel tenuous and raw; and that is, of course, compounded by a plethora of much more mundane things, like the stress of raising so many kids, and what very well may be some sort of midlife crisis on my part.
Depression is no stranger to me; I’ve struggled with it since childhood. I don’t know if I’m depressed right now – like, clinically, diagnosably depressed. It’s not that I can’t function, or even that I don’t find enjoyment in things or sometimes laugh until my sides ache. I’ve just noticed that a vague feeling of melancholy seems to have descended on me. Milestones like holidays and my kids’ birthdays leave me pining for days gone by, because I feel like it’s all going way too fast, it’s all just slipping away from me. I feel like I’m floundering; I wonder who I am – am I more than just a cleaner up of messes, a server of food, a folder of laundry, a disciplinarian? I feel very conflicted: I am living the life, immersed in motherhood, that I dreamed of for years, and yet . . . I don’t feel as fulfilled as I think I should feel, and that makes me feel guilty. I’m inarguably middle-aged, and I feel like I’m caught in some sort of weird limbo: the mother of an infant on the one hand (at a time when I’m technically old enough to be a grandmother!), and having morbid thoughts about aging on the other hand.
And there may or may not be something postpartum going on. Or there may or may not be something pre-menopausal going on. There’s definitely something PMS going on.
I don’t know what the answers are. My tenacious inner voice says, “You just have to ride it out, lady. You just have to keep on keeping on.” That’s what I’ve done all my life.
Today is Kevin’s sixteenth birthday. (That is definitely having an effect on my emotions.) It’s bittersweet to have my firstborn so close to adulthood. I feel like I’m running out of time with him, and I have a lot of doubts about how well I’ve spent these years mothering him. I feel like I’ve squandered a lot of time – not purposely, but, you know, it’s just so easy to get caught up in the daily grind of things and let the things that will matter for the long run fall by the wayside. Did I read enough stories to him? Have I hugged him enough? Have I sheltered him too much, or not enough? Does he feel good about himself?
I could use some happy.
So we moved Finn from his crib to a twin bed over winter break. I know – he’s four and a half! What was the delay, right? Well, there were various reasons we put it off, among them: he’s small (30ish pounds at this point), so it’s not like he had outgrown the crib; things have been sort of in flux since Scarlett was born, as we weren’t sure where she was going to end up sleeping (we thought it might be with Finn in his room, but that hasn’t come to pass); and, not the least, to contain him. I had a sneaking suspicion that as soon as we moved him to a regular bed, he’d be up wandering the house at all hours. Winter break seemed like a good time to make the change – I really expected him to have difficulty giving up the familiar surroundings of his crib, and if we were going to be dealing with bedtime tantrums, I wanted it to at least be when we didn’t all have to get up at the crack of dawn for school.
So a few days after Christmas, Michael dismantled the crib.
It was bittersweet; I got this crib brand spankin’ new when I was pregnant with Kevin over 16 years ago, and all of my babies except Scarlett slept in it. (Kevin also feels a very sentimental attachment to it and has made us promise to save it for his kids.)
And he put together Finn’s new twin bed.
I was pleasantly surprised when, on the first night, Finn made no protest about getting into his new bed. “Wow, this is going to be easy!” I thought.
Not so easy, as it turns out. While he still has not made a peep of protest almost two weeks later, that whole concern about keeping him contained has become reality. The kid won’t stay in his bed. He gets up at all hours and bangs around in his room. If he can still hear us up and about, he’ll just repeatedly come out of his room – I finally put one of those childproof doorknob covers on the inside of his door just to prevent him from exiting his room, and I also make a point of unscrewing the lightbulb from his lamp because he likes to get up and turn the light on and off. It’s gotten to the point where he won’t go to sleep until Michael or I lay down on his bed with him until he falls asleep – and I really don’t want that to become the routine.
Last night we heard a thud from our room and Michael went into Finn’s room and found him on the floor, his nose and mouth bloody. By the time I extricated Scarlett from me and went in to Finn’s room, he was doing that hiccuping-sobbing thing. As it turns out, he didn’t fall out of his bed, he did a face plant on the hardwood floor from the rocking chair in his room. Because he had gotten out of bed. Again.
I went to Babies R Us today and bought one of those safety rails for his bed. I’m hoping that, although it won’t prevent him from getting out of bed if he really wants to, that it will mimic his crib in some way and at least discourage him from getting out of bed.
We shall see.
Kevin and I went to see Life of Pi last weekend. Several years after having read the book, it still stands out in my mind, and I’d say it’s probably on my Top Ten List of Best Books I’ve Ever Read. The movie was a visually stunning (largely computer generated) adaptation of the book that did an excellent job of sticking to the original story. Kevin and I both enjoyed it very much.
If you don’t know the story – and without giving too much away (read the book! It’s really good) – here’s a synopsis: A teenage boy and his family set sail from their homeland of India, en route to Canada to start a new life. Pi’s father owned a zoo in India, and they are bringing the menagerie with them to Canada to sell. En route, the Japanese cargo ship on which they sail sinks, leaving Pi to survive aboard a lifeboat for many weeks, his only companion a Bengal tiger. Pi’s story of survival is touted as “a story that will make you believe in God.”
There comes a point in the story, when Pi and the tiger have been adrift at sea for a very long time, starving and losing hope, when their lifeboat lands on a mysterious island populated by meerkats. By day, the island is lush, overgrown with shade trees, a mysteriously fresh water pond, and plenty to eat. By night, the island itself transforms into something sinister and carnivorous, and Pi realizes that it’s not the oasis it appears to be, and he must leave it. So he and Richard Parker (the tiger) reboard the lifeboat and again set off to sea.
It is at this point that Pi, narrating his story, explains that he knew God was with him, he felt God’s presence and mercy, and he was thankful.
It bothered me. Much as this sort of sentiment bothers me in “real life” – I realize that Life of Pi is a fictional story, but this is certainly something that is expressed prolifically among the Christians I know.
In the story, Pi feels God’s presence and mercy presumably because he has survived an almost unfathomably harrowing experience. What about his family, though? His brother and parents, as well as everyone else on the ship, were not spared. Why would a merciful god pick and choose like that? If this god that people believe in has the power to save people, why doesn’t he save everyone? Why would he have allowed the ship to sink to begin with?
It’s just a big mystery, isn’t it? God is too complex for mere mortals to understand, right?
It seems to me that this is something that is missing among believers: the rational questioning. If you believe that God works in your life – that he actually intervenes on your behalf – then by the very same logic, you must believe that he totally screws other people over. If it’s by the grace of God that your sister made it through that surgery, or that you found a job just when the money was running out, or that the storm missed your house, then how can you also not believe that God is a twisted fucker who does allow other people to die in surgery, or not find a job and live in poverty, or lose their homes and possessions and lives to catastrophic storms? How can you believe that God keeps your children safe but allows other children to suffer and die under horrific circumstances?
I know I’ll get a slew of comments from believers trying to explain it all to me, but really, I’m not looking to be convinced. I have my answer: it’s not that God is a mean, mercurial, favorite-playing son of a bitch, it’s that there is no God (it’s okay, I’ve been calling God names for years, and I haven’t been struck by lightning yet, and I won’t go to hell, because there is no hell, friends). I just wonder if people ask themselves these questions, and if so, what answers they come up with to keep themselves believing. I will also say that in all my years of being a believer myself, I never thought to ask such questions. I just took it for granted that all the good was attributable to God, and the bad, well … not. Which is super convenient, to say the least.
I loved the story, but it didn’t make me believe in God, for what it’s worth.
I was going to do things differently when Scarlett was born. I was going to make her a little more independent, a little sooner. I was going to start pumping right away and get her on a bottle, imagining the relative freedom I would have if she easily went back and forth between breast and bottle. I was going to let her sleep with me only during the immediate postpartum period, while I recovered from giving birth. After a week or two of sleeping with me, I imagined, I would then have her sleep in her bassinet, and from there, she would easily transition to a crib after a few months (I imagined).
But things didn’t go as I planned. She turned out to be a temperamental baby, and I had a much rougher time after she was born – physically and emotionally – than I had planned for. I never did start pumping; it just ended up being a task that I didn’t feel able to add to my already overflowing plate. Consequently, she’s never taken a bottle and I can’t be away from her for more than two or three hours at a stretch. Although for a short time as an infant she did nap in her bassinet, I never did try to make her sleep there at night; six+ months later, she’s still sleeping with me every night. She’ll only nap in her swing now, and her bassinet sits in our bedroom, a convenient place to toss her blankets.
I don’t regret it, though. That’s not to say that I don’t sometimes get frustrated – it would be nice to get up and go (like Michael can) without having to carefully plan my outings to coincide with when Scarlett will most likely sleep for a couple of hours (or, alternatively, taking her with me, which can put a damper on dinner out with my girlfriends, for instance). But I find myself so attached to her – this beautiful gift that I never expected.
There is something about curling up with her in bed, her warm little body snuggled up against mine. She nuzzles me and latches on and grunts and hums in delirious contentment, and I stroke her head and murmur silly sweet nothings to her. I want her to feel how much she is loved in every fiber of her being. I want her to know how cherished she is.
Sometimes I wonder what a difference that would have made for me.
They say that when we are infants and babies, the quality of our attachments will impact us for the rest of our lives. Babies who do not experience love and tender nurturing will suffer because of that all their lives with trouble forming and maintaining loving relationships, difficulty with trust and letting their guard down, and poor self-esteem. My mother didn’t want me. I don’t have any memories of a deprived infancy, but I grew up being told by my mother that she didn’t want me when I was born, and it wasn’t until an incident when I was two years old and when she stopped herself from putting her hands around my throat to strangle me that she accepted me and realized that she loved me. I know it was difficult for her – I came a mere ten and a half months after my brother, I was apparently a very temperamental baby, and she was only 21 when I was born, already in an abusive, difficult marriage. I get it, although what I’ve never understood is her need to tell me things I would have been better off not knowing about. I suppose in her way, she was conveying to me that somehow she managed to rise above some really difficult circumstances and actually love her child.
And so I am mindful. Which is not to say that I don’t screw up with my own kids, or even that they won’t one day find themselves in a therapist’s office pouring out anger, disappointment and hurt over my motherly failings. But I often think that my own longing for children for all those years was rooted in a wish to rewrite my own story. To give the unadulterated love I didn’t receive, to show what that could do, the difference it could make.
And so I coddle Scarlett, I love her unabashedly and purposefully, as I have all my babies, wholly and completely.
I had to cut Annabelle’s hair again. Well, had to? I guess it is a choice I make. For her. For me? I don’t know. She twirls and pulls until it’s so ragged and uneven that it doesn’t feel like there’s much choice but to cut it all to even it out. But she hates it when I cut it. It’s always a scene involving a lot of crying. I hate it, and I admit that I’m not sure that it’s the right thing for me to do. I feel like either way, she’s screwed: leave it alone and it looks terrible because of what she does to it, or cut it in a very short pixie cut (which looks adorable, for what it’s worth – but that’s not the point, I guess) and leave her feeling angry and powerless.
Just that day – after I cut it – she told me that the dad of a neighbor girl she was playing with that day asked her why her hair is short. I’ve seen it happen myself – grownups asking her to her face why her hair is short, or asking me right in front of her why her hair is short. It seems incredibly rude and nosy to me; you would never ask another grownup why their hair is a certain way. What the fuck do they think? What do they think she’s going to tell them? Why do they care?
And yes, she’s been mistaken for a boy. I was mistaken for a boy when I was a kid on occasion when I had my Dorothy Hamill haircut, so I know how much that hurts. I know how it made me want to just curl up and disappear from the shame of it.
We’ve been dealing with Annabelle’s hair-pulling for about five years now. It hasn’t gotten any easier. We’ve tried fidget toys, band-aids on her fingers, gloves, rewards, and ignoring the behavior. Everything works for a while, and then she’s back at it.
Someone sent this article to me recently: N-acetylcysteine For Trichotillomania, Skin Picking, and Nail Biting. I’ve actually read about N-acetylcysteine (NAC) being used to treat trich a number of times over the last couple of years. Rather than redirecting or preventing the behavior, it’s supposed to somehow work on brain chemistry to control the impulse to pull. I’m generally not a fan of medicating, but I’ve decided to give this a try – mainly because I’m sort of desperate, and because, technically, this isn’t really a drug, but rather an amino acid that can be purchased at any vitamin or health food store. (No, I have not consulted with our pediatrician, as he is clueless about trich, as are most doctors, I think.)
It comes in capsule form, and since Annabelle is not yet swallowing pills, I have to open the capsule and mix the contents with juice and have her drink it (we’re starting at 500 mg/day split up into two doses, one in the morning and one in the afternoon). I thought about sneaking it on her and then decided to just be up front with her. The first thing I did was tell her, “Did you know that there are lots and lots of other people who pull their hair like you do?” She looked at me suspiciously; her hair-pulling is a point of stress and contention between us, so she doesn’t like talking about it. “Yep,” I told her. “There’s actually a name for what you do.” “There is?” she asked. “Yes, it’s called trichotillomania.” Her eyes got big – awed, I guess, by the size of the word to describe what she does. We said it slowly together a few times until she could pronounce it. Then I told her that there is a special vitamin that might help her not want to pull her hair anymore. “But I already don’t want to pull my hair, Mommy,” she said. “I know, but it’s hard not to, right? This vitamin might make it easier. Can we try it?” She said yes.
A couple of hours after the first dose, she said to me, “Mommy, I think it’s working.” Bless her heart.
We shall see. I think it’s going to be weeks – months even – before we can tell if it makes a difference, since her pulling tends to go in cycles anyway. In any event, I don’t believe this will be a cure – I’m convinced that this is something she’s going to struggle with forever. But maybe this will help.
I undecorated the Christmas tree this afternoon and felt sad. I’m usually something of a humbug – I find the holiday season mostly stressful and am totally over it and ready to kick the tree to the curb by December 26, but this year was different. It really felt this year like Christmas came and went too quickly, and I wasn’t in any hurry to take the tree down, but alas, it was mostly dead and dropping needles everywhere. I can’t tell you why this year felt different, because I don’t know myself. Maybe I’m going soft in my old age.
I spent a week baking up a storm, and then gave boxes of treats away to neighbors. I got all my shopping done with little fuss, and didn’t mind being up late wrapping after the kids went to bed. Even the Elf was good for some laughs! The hustle and bustle seemed cheerful instead of stressful. And Christmas day . . . being awakened in the cold, barely light morning, the kids all wound up with anticipation, the sea of wrapping paper that grew in the living room as the kids tore open their gifts . . . and the food: gooey cinnamon rolls, sausage, and eggs for breakfast, and steak and fondue for dinner – all of us gathered around the table together, loud and rowdy.
Our tree is decorated each year with a hodgepodge of ornaments – some store-bought, some handmade. As I took them off the tree today and wrapped them in tissue paper and packed them away, memories of Christmases past filled me with nostalgia. There are plaster ornaments that I painstakingly painted way before I ever had kids, filled with hope and visions of future Christmases that would include children scampering about. There are numerous “Baby’s First Christmas” ornaments from the kids’ first Christmases, and ornaments with their names and later dates marked on them from subsequent Christmases. So many of the ornaments hold particular memories – if not of that specific Christmas, then memorable events from that particular year – like bookmarks in the past. A slideshow of images parades through my head: chubby hands . . . round cheeks . . . warm fuzzy jammies and a sleep-creased face . . . eyes lighting up over a Brio train . . . early mornings watching Bob the Builder . . . soft, damp curls glowing by nightlight as I reach into the crib.
And that’s the thing, I guess – when you’re in the moment, it’s hard to fathom how precious the memory of it will one day be. I think the older my kids get, the more sentimental I become over my memories of their childhoods. I look back with my mind’s eye and want to hold all those moments in my heart forever, vivid and cherished. It’s all so fleeting, gone in an instant.
I swear it seems like we were just saying goodbye to 2011, and here we are, another year behind us. Time certainly marches on, doesn’t it?
2012 was a somewhat bumpy, somewhat eventful year for us. The highlights:
We got a new baby . . .
. . . who, over the course of the year, grew into this:
Scout’s a good dog. So much energy, though! And at 80+ pounds, she’s under the impression that she’s still a little lap puppy.
Michael went to Washington DC and appeared before the United States Supreme Court. Very exciting; most attorneys never get to do this.
Back in January, Michael had another brief hospital stay, which, looking back, I did not handle too well. Granted I was pregnant, moody, tired, and overwhelmed, but I still feel a little ashamed and wish I were more the stoic type. In any event, since then, Michael has enjoyed good health, and his annual scan a few weeks ago revealed that he’s still cancer-free. He now has three and half years of remission behind him, and the memories of his cancer, treatment, and the onslaught of resultant medical issues are beginning to take on a hazy quality.
Joey played another season of Little League, and his passion for baseball lives on. Watching him play is one of the highlights of my life as a mom. He also shocked all of us recently by scoring one of the lead roles in his school’s production of Bye Bye Birdie; he has been cast as Albert Peterson and will give five performances at the end of February! He turned 10 over the summer, and we took him to San Francisco to celebrate.
Kevin turned 15 (and is now about to turn 16!), got his braces off after nearly five years, started shaving, got a girlfriend, and dyed his hair. Adolescence has been bumpy, but so far not the nightmare I’ve feared. He’s a good kid, and I feel fortunate to have a close relationship with him.
Finn turned 4 in July and started preschool in September. He attends a typical preschool
with typical peers and is absolutely thriving there. We are so grateful that the opportunity for him to attend this program fell into our laps, that they have been so welcoming of him and see him as a whole, valuable child.
As for me, I got published in Literary Mama and Mamalode this year, both prestigious publications. One of them I will actually be getting paid for – peanuts, but still, it’s my first paid writing gig. Writing remains my passion, and I still dream of making it big, or at least bigger. I’m still trying to find a balance between the demands of mothering a slew of kids, maintaining a house, and carving out time for writing. Every year I begin the year hoping that this will be the year that I write something important and meaningful and that it finds an audience; I know it’s really up to me.
After the shock of finding myself pregnant again at the ripe old age of 44 wore off, I enjoyed a smooth, mostly uneventful pregnancy. I savored it, feeling that, although very unexpected, it was a gift. In June, Scarlett Rose entered the world, a beautiful home birth after a labor of approximately 45 minutes! It was probably my easiest birth, and a beautiful note on which to end my childbearing career. I had a rough go of things for a while after she was born, but eventually found my feet back on steady ground.
Scarlett has stolen all of our hearts, and six months after she was born, it’s hard to remember our family without her in it.
I capped of the year with some new ink representing me and Michael (the vines) and our brood.
I’m not big on making New Year’s resolutions, but I have hopes for 2013: that I live purposefully and in gratitude, that my kids feel safe and loved, that my marriage is peaceful, and my friendships flourishing.
So long, 2012.
I was looking forward to Andrew Solomon’s Far From the Tree with a mixture of eagerness and trepidation after reading Cristina Nehring’s article, Loving a Child on the Fringe, and Alison Piepmeier’s initial reaction to the book on her blog, Baxter Sez: “My Early Thoughts on Far From the Tree.” The book is generating quite a lot of buzz in the Down syndrome parenting community, and at 702 pages (not counting bibliography, notes, acknowledgments, and index, which comprise another couple hundred pages), it’s quite a tome.
To date, I’ve read the first four chapters, and I’ve been trying to sort through my thoughts and feelings. I wanted to get some of my thoughts down specifically on Solomon’s chapter on Down syndrome while it’s still fresh in my mind.
The first chapter introduces us to the concept of “horizontal identity” – that is, the fact that some of us in the human family have something that is so fundamentally different about us that we must seek out peer groups who share the same fundamental differences outside of our families (from whom we receive our “vertical identity”) for a sense of belonging. The second chapter is on deafness; the third is on dwarfism, and the fourth is on Down syndrome – all examples of “horizontal identity.”
I have mixed feelings about his presentation of Down syndrome. Solomon is a gifted writer, and this book was obviously an extremely time-intensive labor, as it’s comprised of extensive research and interviews that span years and years. I think it’s important to keep in mind, however, that this book is not intended to be a piece of advocacy for the specific “horizontal identities” which are discussed. I think as a whole, Solomon’s book is meant as a sociological study, and to that end, it’s fascinating – an exploration of the human condition through a lens of fundamental differences, and I guess as far as advocacy goes, it’s perhaps meant to advocate for diversity in general. As for each topic the author writes about, I’m not sure how or why he hand-picked the specific topics he did. In any case, I’m pretty certain that he didn’t choose them because he has a soft spot for all or even any of them.
As a parent of a child with Down syndrome, it’s always a little awkward and uncomfortable for me to hear or read an “outsider’s” take on what it means to have Down syndrome, or what it means to love someone who has Down syndrome. A person can study Down syndrome in books, they can interview people who have Down syndrome and their families, they can enter a career that will bring them face to face with Down syndrome five days a week, but unless you live Down syndrome – and by that, I mean either have it yourself or experience the highs and lows, day in and day out by having an intimate relationship with someone with Down syndrome – you don’t really know Down syndrome. So as a parent, I always hope the “outsiders” will get it right, but they inevitably, even with the best of intentions, get it at least partly wrong, and their perceptions are colored by their own biases.
And I have no doubt that the same can be said of all the other horizontal identities out there as well.
There were a few things that struck me as I read Solomon’s chapter on Down syndrome. First of all, it has a generally grim tone. While he does touch on the joy and fulfillment most families with a child with Down syndrome experience, overall, he seems more intent on discussing the down side of having a child with Down syndrome – or of having Down syndrome: the medical issues, the loneliness, the battles with school districts, the agony of parents trying to figure out what to do with their adult children with Down syndrome. And while these are certainly all very real issues, they are no more real or important than the joy and fulfillment the vast majority of families in the Down syndrome community experience. I guess what I’m saying is, if Solomon intends with this book to promote the idea that diversity enriches humanity, a more balanced picture would be called for.
I got the feeling that Solomon actually didn’t delve into the Down syndrome community nearly as deeply as he did the deaf community or the dwarf community. He immersed himself in Deaf culture – to the extent possible as a hearing person – and even traveled to a remote third-world community where deafness is prevalent in order to explore deafness outside of America. He became intimately familiar with dwarfs and families of dwarfs and attended numerous dwarf conventions. His exploration of Down syndrome, on the other hand, appears to be based solely on academic research and extensive interviews. He mentions Buddy Walks, but there is no indication that he actually attended a Buddy Walk, or a Down syndrome convention, which are held annually and have been for years. He doesn’t make any mention of the online Down syndrome community through blogs and forums, which are booming and absolutely integral parts of the Down syndrome community as a whole.
Further, all of the families he interviewed seem to reside in New York, and they all have adult children with Down syndrome. I believe this is important because the face of Down syndrome changes with each generation, or even half-generation; the lives of children born today with Down syndrome look very different from those of children born with Down syndrome even ten years ago – certainly twenty years ago. I watch Finn with his iPad and am in complete awe at how technology is enabling him to teach himself so much through interactive play, and it nearly blows my mind to think how different it was even five years ago when there was no such thing as an iPad.
Solomon is off in his word usage, as well. The chapter is peppered with “Downs kids” and “Down’s.” “Down’s” is not considered appropriate here in the US (although it is in Europe), and “Downs kids” is frowned upon here. From a completely objective standpoint, the fact that Solomon completely missed the People First Language movement – which is a huge hot button issue in the Down syndrome community – is a red flag. Additionally, he uses the term “mentally retarded” pretty liberally. It honestly didn’t offend me; I can handle it when it’s used in the clinical sense (it’s only been done away with in the clinical sense because it became a casual and ubiquitous pejorative; had it retained only its clinical meaning, it never would have come to be seen as offensive, and I still maintain that regardless of what we demand the terminology be changed to, it will eventually be flung around as an insult – attitudes have to change before language can really be changed), but the fact that he seems unaware that “mentally retarded” just isn’t used any longer indicates that he hasn’t done his homework as thoroughly as perhaps he should have. It’s also indicative, I think, of the fact that he only seems to have spent time with families of adult children with Down syndrome; some of the insights he gained from them are simply outdated.
The chapter does discuss the issue of prenatal testing for Down syndrome and the implications of it, and he does a good job with this discussion. Prenatal testing, especially in light of the new, “better” tests available to expectant mothers now, is another hot button topic in the Down syndrome community. He remains neutral, discussing the perceived benefits of testing and the impact on society by likely reducing the number of babies born with Down syndrome, and therefore also reducing funding for research and services for people already living with Down syndrome.
In his chapters on deafness and dwarfism, Solomon discusses the fine line that exists between affirming and helping those with the conditions, and trying to improve or change them – as with cochlear implants for the deaf, and limb-lengthening surgery on those with dwarfism. Both of those procedures have ignited passionate debate in their respective communities, with some parents being adamantly in favor of doing whatever it takes to give their children every tool available to help them fit into a society that is not naturally equipped to accommodate them, and some parents righteously indignant at the suggestion that their children should be “normalized” to fit an arbitrary convention. These are extremely important issues, and I wish Solomon had carried this idea into his exploration of Down syndrome; indeed, I wish it were more a topic of discussion in the Down syndrome community. Solomon discusses Early Intervention for children with Down syndrome, but only in terms of obviously that’s what parents do for their poor Downs kids nowadays, and boy, are they lucky to have it – not like in the old days. No discussion of the implications of Early Intervention – how it’s possibly the equivalent of the cochlear implant or limb-lengthening: an effort to normalize children with Down syndrome to the extent possible rather than accepting and embracing them as they are (do I have you riled yet? Don’t you think this is worthy of discussion at least? I do.).
The chapter left me feeling a little sad. I lay awake in the quiet darkness of my bedroom on more than one night after reading it pondering . . . pondering Down syndrome, our family, Finn, Finn’s future, worrying over all the things that parents who have a child with Down syndrome worry about. Solomon’s presentation of Down syndrome dug up feelings I thought I had put to rest a long time ago, and that’s unsettling.
Nevertheless, I’ve never believed that it’s honest to insist on focusing only on the positive, and doing so does a disservice, I think, to those affected by Down syndrome. I certainly don’t see Finn’s life as bleak or grim, nor do I see our life with him in it as bleak or grim. It’s mostly just life – full of ups and down, and yes, with a unique set of challenges where Finn is concerned. It is worth it? An unqualified yes.
I’ve set aside Far From the Tree for the time being, as I’m reading my book club’s current selection, but I plan to get back to it in the next couple of weeks.