These reviews/discussions are kind of cobbled together from a bunch of my Caring Bridge entries, and I read these books at all different points during the past couple of years. So when I say, "I just read ..." that could be any old time.
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I’ve had this book for about a year and a half; I only finished it this week. I didn’t open it at all for about a year, because I’d (obviously temporarily) burned out on parent-of-kid-with-Down-syndrome memoirs. Then I read a couple of chapters and put it down for a long time, not resuming until after I finished Bloom.
I was mostly familiar with Martha Beck’s writing from the life coaching columns/articles she has had in Real Simple – I usually liked those a lot. She has several other books, I think, but I haven’t read any of those. When I ordered this one from Amazon, I remember reading a bunch of reviews, many of which were glowing and many others that were … scathing (I don’t think I’ve ever actually used that word before). The gist of the negative reviews seemed to be: (1) There’s no way this stuff really happened, and (2) This lady is a pretentious bitch who mentions about every third sentence that she went to Harvard.
(1) For those who haven’t read it, Beck talks a lot about these unusual, spiritual-bordering-on-supernatural experiences that she had while she was pregnant with her son Adam, who has Down syndrome. It is pretty fantastical (never used that word before either) at points, but … well, I guess I am reserving disbelief for something that has the possibility of ever being proven wrong, and that doesn’t seem to be the case here. I don’t want to promote inaccuracy in memoirs (I still have my copy of A Million Little Pieces, I kept it because I’m convinced it’ll be worth something someday), but Frey (?) lied about factual items, like, everything, so I’m thinking that since Beck’s experiences can’t be disproven ("disproved" is what is suggested) I'll just proceed as if they happened as reported. Because, wouldn’t it be great if they did? She felt protected and guided and was in awe and wonder throughout the pregnancy. I hope something like that could happen.
(2) Well, she does mention Harvard a lot, usually at least once per page. …. If I’m acquainted with anyone who went to an Ivy League school I’m not aware of it, but I would guess that they might mention it a lot? Maybe I would mention it frequently, if I’d had that achievement? My Ivy League experience is limited to the character of Susan Silverman in the Robert B. Parker Spenser novels, and she mentions having a Ph.D from Harvard about 1,000 times per book. Yes, I am totally aware that I am citing a fictional character here. It’s the closest I can get. … So I can see how that might be annoying to some folks, but I think dismissing her as pretentious misses the point, the transformation she underwent because of this experience. If I’d met her back then, I might not have been too crazy about her, and her descriptions of the academic pressure and competitiveness at Harvard are distressing, the point is that she totally admits to having bought into all that for a long time, but then she came to realize it’s only so much bullshit. She comes to pity, rather than fear, the professors she once admired and was intimidated by, and she and her husband shift nearly every priority in their lives.
One thing I wouldn’t have anticipated – Beck was expecting Adam in 1987, and the book was published in 1999. This was before the ubiquitous use of the term “developmentally disabled,” and it was jarring to read the word “retarded” so many times. I have written before, I don’t mind the use of the “r-word” as long as it’s done in an appropriate way, used as a non-judgmental description of someone with an IQ of less than 70, and not used to insult something the person simply doesn’t like. So, I thought I would be cool with it, but reading it over and over was odd, and thus I have learned that as long/clunky as it is, it’s developmentally disabled from now on I suppose.
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(8) Bloom: Finding Beauty in the Unexpected
Matt gave me Kelle Hampton’s book Bloom as an early birthday present, and I just finished it last week. There is a link to Kelle’s blog on my “Helpful Sites” page; the photography on the blog is excellent and I like most of the writing. Bloom tells the story of the birth and first year of life of their little girl Nella, who has Down syndrome. The parents did not know or suspect the diagnosis before birth; ultrasounds and prenatal tests did not raise any red flags.
Although Kelle is a few years younger than I, our stories have a similar timeline – her older daughter Lainey is a couple of weeks younger than Simon, and Nella was born two months before David. The book describes the family’s adjustment to the diagnosis, and Kelle’s movement from shock and grief to winning an award for “Best Special Needs Blog” at the National Down syndrome Congress meeting that year. The most moving part of Bloom, for me, was her description of a young man’s reaction to her acceptance speech for this award. In the speech, Kelle had discussed the sadness she had worked through in the past year, upon receiving Nella’s diagnosis. After the speech, a young man who has Down syndrome spoke with her out in the hallway, and he said he was sorry she was so sad. Kelle then realized this young man (and everyone else) had heard her say, she didn’t want her baby to be like him. She didn’t want Nella to have the same thing “wrong” with her, to have that same extra chromosome. I will freely admit to being in tears as I read this.
Another highly-identifiable part: In the book, Kelle describes public reaction to an entry on her blog. She wrote in the blog about observing Nella playing with a toy in a certain way, and wondered if she was doing it that way because she has Down syndrome. Kelle reports in the book that the vast majority of feedback on this post was supportive, but admits that the few negative comments really bothered her. This is my worst blogging nightmare – that one day I will really go out on a limb and share something that is deeply personal, and a bunch of (perhaps well-meaning but) crazy people will end up arguing about my mental health and parental fitness, all on my own website.
(This has sort of/slightly happened already, see “Communication Breakdown” post)
I could identify with a lot of Kelle’s emotions, but as Matt said awhile back about the blog, it’s not the way I would’ve written it. Not that I could never be accused of wordiness or overstatement, but there seemed to be a fair amount of repetition and everything was described in pretty intense terms.
This next statement is likely going to be interpreted as jealousy, and that’s probably correct to a degree, but: I really cannot believe that a grown woman has this many girlfriends. I don’t think I know anyone who actually has this huge intense circle of close, loving, supportive, etc, women. I guess it’s an ideal situation, and occasionally wish I had more close friends than I do, but really. Really?
Given the quality of the photos on the blog, the photos in the book were slightly disappointing, but I suppose the purposes of each medium are different? Most of the photos in the book are candids of various friends and family, and the events they attended throughout the year, but they didn’t appeal to me nearly as much.
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(Written 1/15/2012)
(7) Special Siblings: Growing Up With Someone With a Disability
I thought I would make a radical departure from reading and reviewing books about being the parent of a child with a developmental disability, to reading: a book about having a sibling with a disability. I have just finished Special Siblings: Growing Up With Someone With a Disability, by Mary McHugh.
This is the first non-fiction book I’ve read by a woman who is, ah, clearly from a generation earlier than my own. It made me really thankful I grew up when I did, and I’m definitely glad we’re raising David now, not 50+ years ago. There are so many more opportunities, for all of us.
The book is partly a reflection on the author’s relationship with her younger brother, who has cerebral palsy and both physical and developmental disabilities. She also discusses various studies that have been done about families of a child with special needs. I took away several suggestions from these chapters: (1) in one study, children with a sibling with a disability did not resent that their brother/sister had fewer chores than they did; they recognized that in most cases the sib was unequipped to perform many tasks. What they viewed as unfair was when their parents simply assumed they were the go-to babysitter for the sib. The non-disabled kids felt their own wants and needs were completely ignored, especially in instances when parents made them cancel their plans with friends, to stay home with the sib, while the parents went out to eat or to a movie. Note to self: don’t do this with Simon. (2) We may want to look into finding some sort of sibling group for Simon – apparently a lot of kids have found them to be helpful. There’s also a website, SibNet, which I have not checked out yet but hope to soon.
The author’s discussion of her relationships with her brother and her parents is quite frank, even difficult to read, at times She believes that as a child, she pressured herself to succeed academically because she believed someone in the family needed to do so and it wouldn’t be her brother. She describes her father as distant/remote, and she feels she never really pleased him, even after publishing several books. After she graduated from college she lived in Paris for one year, where she basically pretended she didn’t even have a brother. Over the course of her life, many friends, even close ones, never knew she had a brother at all, or that he had a disability. The book ends happily, or at least as happily as possible – her parents have both passed away, and before they died they placed her brother in an excellent group home in Florida. She has slowly built a loving, respectful relationship with her brother, but freely admits that at many points she felt hatred, resentment, jealousy, and just about any other negative emotion you can think of.
I’ve thought about Simon and David’s brotherly relationship quite a bit. I’ve thought mostly about positive stuff: the late-night whispering when they don’t want to go to sleep, all the schemes and plots they will hatch, and the secrets they will keep. The book agrees that siblings (can) have the deepest, longest-lasting relationships, surviving their parents and certainly outlasting any case managers or other service providers. We have tried to strike a balance with Simon, giving him as much information about David’s Down syndrome as we think he can understand while emphasizing that David will learn to read/write/ride a bike, it will just take him longer than other kids.
We have also tried to (as much as possible) balance out parental attention to each kid, encouraging Simon to play with him every day but also trying to give Simon plenty of one-on-one time, with each of us. Tonight Simon said he wanted to have computer time (he plays various games at pbskids.org) alone in the master bedroom, where my laptop was plugged in. He said later he liked being in there by himself, and we’ve encouraged him to play in their room by himself sometimes. For Christmas I got him a Transformer, which is not my favorite idea for a toy (we did remove the “blaster” from the box before giving it to him), but I wanted him to have some stuff that David cannot play with yet, so Simon will have to go off by himself and have some “big kid” time.
We’ve spent a fair amount of time discussing what will be best for both boys, if Matt and I both died while they are still young. We recently met with a lawyer and drew up wills, power-of-attorney papers, and made it official that my sister will be their guardian (with Matt’s folks as backup) should this occur. What we haven’t talked about yet is what will happen to David if Matt and I live out full lives, and David and Simon are both adults when we pass away. All the legal documents state that at this time, David’s future needs are impossible to predict.
I hate to think that Simon might attend a college close to home, or choose a career path he can maintain close to home, if that’s not really what he wants. Several of the siblings interviewed for the book say they did this; some of them regret it and some don’t. The book discusses ways that David’s disability will likely affect Simon’s interpersonal relationships – anyone who wants to be a real friend or romantic partner will have to be accepting of David, and if Simon gets married someday it would need to be to someone who understands that he will likely be responsible, to some degree, for David after we die. The book urges parents and service providers to involve siblings in planning for their brother/sister’s education and services right from the beginning. We would have to emphasize that the grown-ups make the big decisions, but that Simon knows David in a way nobody else does, and he probably has valuable input.
The book also says that when children reach adulthood, there should be clear communication between children and parents about each person’s expectations. Some parents assume the sibling will step up, when it’s the sibling’s dream to join Doctors without Borders or SEAL Team 6 or move to Paris or whatever, and the last thing they want is to put aside their own dreams for a sibling who has already had the lion’s share of attention their whole lives. In turn, some siblings assume it will be up to them, when their parents are making other plans for group homes or supervised apartments. The book says siblings tend to push their brother/sister harder than parents, do – they believe they are capable of more independence, if parents would just let go a little and let them do it.
I try not to worry about this stuff too much. I think I do okay at that, most of the time.
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(6) Gifts: Mothers Reflect On How Children with Down Syndrome Enrich Their Lives
I recently finished reading another being-a-mom-to-a-kid-with-Down-syndrome book. It is titled Gifts, and was edited by Kathryn Soper, who wrote The Year My Son and I were Born. It is a collection of many short (2-3 pages) stories written by moms. A helpful read, as I could identify with at least a part of nearly every story. When most of the stories were written, the children in question were usually still quite young, some less than a year old. In keeping with the other books I’ve read, most of the moms did not know the baby had Down syndrome until it was born, but a few did. Most who did receive a prenatal diagnosis report their doctor seemed to assume they wanted to terminate, and it was difficult to get them to understand that they planned to bear and raise the child. Beyond that, there was not much discussion about termination, except this one mom who went into a lot of detail about their decision. I really appreciate her sharing her story, as this is about the most private, personal topic I can think of.
I enjoyed reading about each woman’s issues and experiences. One woman wrote hers as a letter to herself – written now, to the person she was when she received the diagnosis, reassuring herself that everything’s going to be okay. Another compares having her child to enrolling in college – with classes titled, Health 103, Acronyms 201, Advocacy 203, and Dealing with the Uninformed, or How and When to Educate Jerks. Still another talks about a trip with her son as the guide – how every time she gets too big for her britches and thinks she knows best, he gently puts her back in her place and shows her is in charge. One mom’s daughter died of leukemia at age 2; that was quite difficult to read, as you can imagine.
My favorite image from the book is by a mom who compares finding out that her first child Nicholas has Down syndrome to being suddenly thrown into the deep end of a swimming pool. It says, in part:
In the deep end! How unfair! You don’t take the person most frightened of the water and throw them in the deep end! Throw another person in the deep end, someone who’s used to the pool! Someone who knows how to swim!
How did this happen? Who did this to me? Gagging and coughing and choking and sputtering, I railed against the shock of the cold water, the unfairness of it all. My head went under and panic set in. I’m going to die, I thought. But instinct kicked in and clumsily, I moved my arms and legs. And I did not drown.
Now I was treading water. After a few big breaths I looked around and noticed there were other people in the deep end with me, and they were offering to help. But I didn’t want to be in their Deep End Club. And besides, I didn’t think I even belonged here. It was only a matter of time before someone told me it was all a mistake and I’d be pulled out of the pool to safety. I should have left well enough alone. I should never have tried to go into the pool, I thought. But since nobody came to my rescue, I continued to tread water. And I did not drown.
Soon I started to float. My panic subsided. I knew I could survive, although it surely wouldn’t be pleasant being stuck at this end of the pool. I was able to rest for short periods, suspended on the surface of the water. I felt pretty much alone. Yet I did not drown.
Then I noticed there was a little boy in the deep end with me, a little boy named Nicholas with eyes that crinkle up like half moons when he smiles … and Nicholas could swim. Looking at him, I began to realize that someday, I might be able to do more than float. I might be able to swim. And I might even enjoy it. Perhaps I’d even love it.
As I watched Nicholas I discovered that the deep end allows for underwater somersaults, and in the deep end, it’s possible to dive. You can’t do that in the shallow end. And I realized that perhaps someday, with Nicholas at my side, we’d both wave to the parents at the shallow end of the pool and say, “You don’t know what you’re missing, here in the deep end.”
(“Notes from the Deep End,” by Jennifer Enderline Blougouras).
Nearly all the babies had some sort of health issues at birth, most were in the NICU for at least awhile, and some needed oxygen for a time. Many had heart defects that required surgery at a young age, and had other problems David doesn’t have. And not everyone told the exact length of time their baby was in the NICU, but of those who did, we are still the reigning champions at 92 days! A dubious honor, but we’ll take what we can get …
Another thing that helped? A lot of the moms have gone on to have one or more additional children, and their subsequent pregnancies were perfectly healthy. Food for thought.
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(5) Before You Were Born
When we had Simon, a family at one of our former churches gave us this book, Before You Were Born. It is based on Psalm 139 and the illustrations are lovely. I was initially not too crazy about it because, well:
Before you were born
We watched the ducks stand on their heads
In the golden pond
While the sun flamed red
Behind the apple orchard
But when you arrived
Our eyes were only on you
Glowing in the bed between us.
The entire duck family quacked
In celebration
As fire spread across the sky
And you were our delight.
(You see what I'm getting at, right?)
But I recently flipped through it again, and now that David is here I am liking it better, since the overall message of the book is: okay, before you were born our life was one way. We thought some things were important, and we thought certain things would occur once you were here. But now you are here, and it’s not what we thought – it is 10,000,000 times better than we thought. It would apply to any first baby, I suppose, hence it was a good gift for Simon’s arrival. But I’m looking at it (not to mention everything) in a little differently light now.
Matt says Psalm 139 is a pretty popular one, and I’ve heard the “fearfully and wonderfully made” a number of times. He also says the last few verses (not included below) are loathing and hating the enemies of God (and that makes it a perfect Psalm), but we’re gonna ignore that for now. Again, this means more to me now, with David:
For you created my inmost being;
You knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
Your works are wonderful, I know that full well.
My frame was not hidden from you
When I was made in the secret place.
When I was woven together in the depths of the earth,
Your eyes saw my unformed body.
All the days ordained for me were written
In your book before one of them came to be.
Psalm 139: 13 – 16
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(4, 3 again): Short Bus and more on Life As We Know It
I just finished reading another book, The Short Bus. Yes, Joanna is reading a lot of books about disabilities. But that is how Joanna makes sense of things and figures out what to do – she goes to the books because she hopes somewhere there is a perfect solution. Short Bus is written by Jon Mooney, who was diagnosed with dyslexia and ADD and was labeled “severely learning disabled.” He was put in Special Education and rode the short bus. He seems to have overcome these issues, as he graduated with honors from Brown University, has written a couple of books, and is a motivational speaker of sorts. The book is about a cross-country trip he took in a short bus that he borrowed, meeting adults and kids and parents who are dealing (or dealt) with the special education system. I think this popped up as a suggestion from Amazon when I ordered Life As We Know It. It was interesting to read about Mooney’s educational experience – school was really hell for him, day after day after day. He hid in the bathroom, he played sick, he did anything he could to avoid reading aloud in class. My elementary school education was the exact opposite – I loved school more than anything, it was really pretty easy, and thus I had lots of successes. It has been quite educational to see the other side of things, and to consider the experiences of the kids in my class who were “pulled out” for reading resource class and whatnot, the ones everyone knew needed special help.
Short Bus and Life As both recount some of the history of Down syndrome and how it is viewed and treated. Both authors make me glad David was born in 2010, rather than 50 or even 25 years ago. Kids with Down syndrome have historically not had a very long lifespan, mostly due to their heart problems. Advances in heart surgery have come quickly – Dr. Tripp told us that even 10 years ago, the risks of surgery like David’s had to be carefully weighed with the benefits. So, even though we were bummed to find out that David’s surgery was not quite as successful as we originally thought, his heart is working much better and if he has to have more surgery in the future, I’m imagining that it would be less risky than the original. So there’s that. There are also improvements in educational and Early Intervention services, so that kids with Down syndrome are no longer institutionalized as a matter of course. And, I’m thinking there is simply an increased understanding/tolerance/something of kids with disabilities, such that kids with (all kinds of) disabilities are no longer viewed as sick or even really that deficient, but just the wonderfully-termed, “differently-abled.”
Having said that, I have been struggling lately with accepting and dealing with the (possible) scope of David’s disability. As interesting as the characters in Mooney’s book are, to me they are mostly “just” learning-disabled – they have ADD or dyslexia or autism; only one has Down syndrome. There were several who were described as “retarded” at some point in their educational experience, and they all struggled daily in school. But if I understand the stories correctly, only the young lady with Down syndrome, Katie, is actually mentally retarded. As much as the word “retarded” makes me squirm, I almost prefer it to the current term of developmental disability. To me, DD is more about motor skills and whatnot – I mean, you can have a developmental delay or even a disability, I think, without being mentally retarded. … only Katie’s story is about a person who is mentally, physically, developmentally, etc., handicapped. Katie looks different and probably speaks a little differently; she will likely only ever be semi-independent. She has health problems that are unique to people with Down syndrome. A couple of months ago, a friend asked me, hesitatingly if that’s a word, if David “will be ‘special needs’.” And I thought, oh, she means retarded. Awhile ago I realized I was thinking in terms of, “David will be retarded,” when I suppose he is actually already retarded. Right now I guess he is developmentally delayed – the only things you can “tell” are his delays in rolling over, sitting up, etc. It’ll be a good bit before we can know things like IQ. It’ll be interesting to see how terminology shifts over the course of his lifetime.
Oh, wait, I just remembered that one of the other stories is about a girl who is deaf and blind. I suppose she’ll have some challenges beyond her school years …
I am evidently going to have to brush up on my Foucault and my Wittgenstein if I am going to raise this child who has special needs. Both Mooney and Berube (Life As) quote the same Wittgenstein passage: “’Seeing-as’ is not part of perception. And for this reason it is like seeing, and then again not like" ... I just read an article in my latest issue of Parents magazine about the importance of not (either out loud or just in your head) confining your kids to labels such as “the smart one” or “the cute and charming one.” So in addition to not thinking of or talking about David in terms of “my special needs child,” I am also responsible (to David, to myself) for not seeing-him-as that way … I am responsible for being open to getting to know who he is, as he is, free of any prior expectations or needs of my own. I would bristle at the thought of anyone else on Earth labeling him or making presumptions about what he can and cannot do. I just have to watch it in myself, as well.
As I said in an earlier journal entry, we did not have amniocenteses to confirm David’s Down syndrome. Our OB Dr. Warren convinced me that he had it, and I worked hard to accept it, to the degree anyone could, before he was born. Then when he was born (and by that I mean, within 5 minutes of him being born, when Matt was over with him and the docs were working on him and I hadn’t gotten to see him yet), no one thought that he had it, because he did not have the typical facial characteristics of Down syndrome (mostly, slanted eyes) they are used to seeing in newborns. This was not us being in denial – all the doctors (neonatologist and Dr. Tripp, who saw him right after he was born) said they didn’t think that he did, and Dr. Pulver seemed to be genuinely surprised when the genetic testing came back positive … between David’s birth and us receiving the test results, Matt was really hopeful that perhaps Dr. Warren had been wrong, that despite all those physical markers she saw in utero that he didn’t actually have it (I did say that if he didn’t, I was going to kill Dr. Warren for putting us through all this). I felt conflicted about hoping that he didn’t, in part because we had worried so much and worked so hard to accept it, and I think also in part because I believed, deep down, that he did have it. And by hoping that he didn’t, I was betraying who he really was/is?? That was an odd feeling, because of course it’s okay to hope that there’s nothing “wrong” with your baby (heck, he was already 2 months early, so tiny, and we knew for sure about the heart problem, so there was plenty wrong) – if we had just thought he had the heart problem, or a kidney problem, or something discrete like that, we would of course be overjoyed to find out the doctors were wrong and he wouldn’t have any issues. Perhaps it is the foundational/genetic nature of Down syndrome that made me feel odd to hope that he didn’t have it – ‘cause if he did, it is in every single cell of his body and very much a part of who he is, so hoping he didn’t have it made it seem as though I was hoping he was someone/something other than who he really is??
[(This probably sounds kind of (something?), but I honestly was not expecting to have so much trouble digesting a book about a kid with Down syndrome as I had with Life As. I went to grad school and I read a lot, so I could keep up, but I’m thinking it has less to do with my ability to keep up, and more to do with my lack of inclination or desire to follow his train of thought for long:
“The political challenges presented by Foucault and by the New Right were anything but tangential to my experience of Special Sitters class. For one thing, because I happened to be attending class with Amanda, whom I consider one of the keenest contemporary critics of Foucauldian social theory, we often drove back from class talking about whether the social reforms of the Progressive Era represented an extension of the franchise of life, liberty, and happiness or an extension of the machineries of social surveillance.” (and on, and on)
(a) I would rather pull out my eyelashes one by one than listen to or participate in this discussion.
(b) Really? Did they really talk about that? Or did they just talk about last week’s episode of Dancing with the Stars, like everybody else on the planet?
Really, I’m just looking for some tips about accessing services and some identification with the emotions they may be going through. Who is his intended audience, exactly? … reading his book has nearly talked me out of pursuing doctoral studies someday, if this is the kind of b.s. that academics sit around and think about all day … sometimes I feel a little strange about my career in social work/mental health: I don’t make anything, I don’t heal anyone in a physical sense, the only thing I do with my hands is type notes. But compared to this guy I am a production machine, and at least (I hope) some kids and families are somewhat better off at the end of the day than they were at the beginning)]
(See, I told you it rambled)
My new prayer: Dear God, please continue to watch over our beautiful baby, David Moses, and continue to bless his growth and development. Allow him to be everything he needs to be, not what I think he needs to be. Above all help him to just be – to breathe and eat and grow and flourish. Help me remember to look at him with my eyes wide open, to see him for who he is and all the possibilities of what he can become. Amen.
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(1, 2, 3) Choices, Chance and Confirmation: The Year My Son and I Were Born, We'll Paint the Octopus Red, Life As We Know It
I have been reading a lot about Down syndrome lately. I have 3 books, The Year My Son and I Were Born, We’ll Paint the Octopus Red, and Life as We Know It: A Father, a Family, and an Exceptional Child. The first two, I have written about before: The Year is a mom’s account of the first year of her son’s (who has Down syndrome) life. She recounted all of her baby’s medical struggles in a way that was helpful and hopeful for me to read, especially as David was having his heart surgery. Octopus is a book for Simon, about a girl named Emma whose new baby brother, Isaac, has Down syndrome. I don’t know that Simon gets it too much right now, but he loves the story and we have taught him to say, “Down syndrome.” He can pronounce it pretty well, but I suppose we will have to keep reinforcing it for quite some time. The last book, Life As, has been a very different read. The father who wrote it, Michael Berube, is something of a professional thinker (he is a college professor and evidently a full-time intellectual and philosopher). Initially the book turned me off because of the sort of pretentious way he writes – in the Introduction, he quotes Wittgenstein, Proust, Faulkner, and Shakespeare. I mean, really. We get it, dude. But I’m glad I kept reading; when he finally gets around to talking about his son, it’s much more enjoyable and informative. I also read a short article in my latest issue of Parents magazine, written by a mom of a baby with Down syndrome, talking about her daughter’s birth.
What all four of these stories have in common is that none of the families knew their babies had Down syndrome before they were born. I have several girlfriends who declined any type of prenatal screening (even blood work) that would predict the chances of Down syndrome or other issues, because (like for Matt and me), the results “wouldn’t change anything,” i.e., they would not choose to terminate the pregnancy, so why spend the rest of the 40 weeks worrying? And that is the exact phrasing I used when I turned down an amniocentesis – the results wouldn’t change anything, and we didn’t want to take the chance of a miscarriage (though I know that risk is slight) … and in our case, the doctor ended up making the diagnosis of Down syndrome prenatally anyway. At my 26 week ultrasound, she said she no longer needed an amnio to tell her David had Down syndrome: between his nuchal translucency score, the type of heart defect he had, the fact that he was so small, and the apparent absence of a nasal bone, that she was diagnosing him with Down syndrome until testing proved her wrong.
I’m glad we found out before David was born. In the case of the four stories, those were all evidently pretty healthy, full-term infants, who had some health problems after birth and required oxygen for awhile. But none of them had what David had, in terms of his prematurity, small size, and heart defect. And those were all things we found out about by ultrasound, not any additional testing. And if nothing else, his slow growth would have indicated to the doctors that something was up. … and if we continued to refuse ultrasounds, tests, and information, David would have been stillborn. I believe that, 100%. He was not growing because there was a problem with the blood flow through the umbilical cord, it was getting worse, and he would have died (“passed away” is the term Dr. Warren kept using). … so I’m glad we found out. The day we got the news (Feb 9) is a day I will never forget, ever. We were so scared that even with close monitoring, he could still die. But I’m glad we had time to prepare – to read and find out about resources, to talk to our families, to get ready, to the extent that any parent could, for what raising a child with a disability would be like. Nothing really could have prepared us for the nightmare of the 13-week NICU stay, or what it would be like to give David his bath the night before his heart surgery, and to think it could be the last time we did it. But I’m glad we knew. And not every baby with Down syndrome goes through all the stuff David did – all the ones in these stories were basically healthy.
In Life As, Berube discusses the various ethical and moral issues involved in prenatal testing and abortion. It is an exhaustive (and sometimes exhausting) examination of the issue, and he makes several points I have never considered before. I do not wish to turn David’s website into a forum for debate on abortion: this is not the place. I will say only that I believe in a woman’s right to choose what is best for her. The Year and Life As both give a statistic (but neither cites a source) that in 90% of pregnancies where Down syndrome is diagnosed, the pregnancy is terminated. I have always been, and still am, pro-choice. But 90% seems like … a lot. So I guess the only babies with Down syndrome being born, are those whose parents didn’t have testing? So I guess they would be well-represented in the stories? Berube’s concluding hope was that in the event Down syndrome is diagnosed, that abortion not be the automatic go-to, that women be given accurate information about what Down syndrome means, and the opportunity to ask a lot of questions and receive accurate answers. His belief is that women are told their babies are going to be severely retarded, will never learn or walk or understand, etc, and that women may be convinced that they could never raise a child “like that.”
I obviously have only been doing this parenting-a-child-with-Down-syndrome thing for a short time, it is hard, and we have no idea what lies ahead for us. I’m not criticizing other women’s choices, as I am a very fortunate mom in many respects – loving husband, wonderful 3 y.o., a home and an education and a job. Not everyone is that lucky. I suppose I tend to think of abortion mostly as an option for young women, not married, who find themselves in a situation they did not expect, with possibly little or no involvement by the baby’s father. And to me, there is a difference between that situation and one in which a woman plans to get pregnant (or is happy to find out she is), and then terminates for this one reason. Berube discusses the “vicissitudes of chance,” that just because you know this particular baby is not going to have Down syndrome, nothing else is guaranteed – the baby could be stillborn or born prematurely for some other reason, could have any number of health or developmental problems, etc. I think that when you make a deliberate decision to have a child, you kind of sign up for whatever happens, you know? Simon was born perfectly healthy, but at any point something bad could happen – leukemia, an accident, anything, and it would be my job as his mom to take care of him and make sure he gets what he needs. I suppose I thought the same thing about David, way before we knew him as “David.”
This has been the most terrifying experience of my life, but now we have ourselves a semi/mostly-healthy, 12-lb baby boy, with beautiful blue eyes and a wicked grin. When I was reading the article in Parents magazine, I of course got teary-eyed (anything makes me cry these days). David was lying beside me on the couch, and when I turned to look at him, he just gave me the biggest, most awesome smile ever, as if he knew I was upset and just wanted to say, “Don’t worry, Mom. We got this.” … I’m glad we knew. It didn’t change anything.
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