On Down Syndrome and Falling Far From the Tree
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.
On Christmas Eve, Michael and I waited until the kids were sound asleep (or so we thought) to bring up all the gifts that had been wrapped and hidden in the garage.
Let me just stop right there and ponder this whole Santa thing for a minute. It seems that every family does Santa differently – and I only realized this after we had been long stuck in our own tradition, which I basically took from my own childhood (Michael is Jewish and, although his family apparently celebrated both Hanukkah and Christmas – at least the presents part – to some degree, he doesn’t seem to have more than vague recollections of it), and that is, Santa wraps all his presents and leaves them under the tree Christmas Even night after the kids are asleep. Come to find out later that in some families, Santa does not wrap his gifts, only the gifts from Mom and Dad are wrapped; and in some families, Santa only fills the stockings. I could have saved myself a lot of work all these years! Here I am, wrapping every damn thing every year, setting aside special Santa paper so the kids won’t say “Hey, Santa uses the same paper you use, Mommy!”, using special gift tags that are from Santa, and trying to disguise my writing! And to think, all this time, I could have just been throwing a few unwrapped gifts under the tree from Santa!
There needs to be a manual about this sort of thing.
Anyhoo, so Michael and I are bringing the Christmas haul upstairs from the garage, tiptoeing and being as stealthy as we can, and suddenly the girls’ bedroom door pops open and there’s Annabelle. “Presents?” she says. “PRESENTS?!” Thinking quickly, I say, “Um, we’re just helping Santa out, rearranging some things. You’re dreaming. Go back to bed now.”
They got us up at the crack of dawn yesterday morning.
Annabelle came into our room and said, “Mommy, did you leave cookies out for Santa?” Shit. Fail. “No, honey, I guess I forgot. But I’m sure Santa had plenty of cookies from other families.” “WHO CARES?!?!” She shouted. “LET’S OPEN PRESENTS! CAN WE OPEN PRESENTS NOW?!?!”
And so began Christmas Day, 2012.
Everyone was happy with their bounty.
Our traditional Christmas dinner is filet mignon and cheese fondue, and then a chocolate fondue for dessert.
This year I made The Melting Pot’s Wisconsin Trio cheese fondue (substituting provolone for butterkase, as the latter was impossible to find anywhere); it was delicious.
And Chocolate Cream Pie fondue* for dessert –
Every year, the pictures look the same; the kids just keep getting bigger.
Chocolate Cream Pie Fondue
8 oz. milk chocolate, finely chopped (you can use milk chocolate chips)
4 oz. cream cheese, cubed
1/2 cup milk
1/4 tsp. vanilla extract
Melt the chocolate in a double boiler set over simmering water, stirring constantly. Add the milk, cream cheese and vanilla, and continue to stir until completely dissolved and blended. Transfer to a warm fondue pot over low heat. For dipping, sliced bananas, large marshmallows, cubed pound cake, and graham crackers are all good!
Scarlett @ Six Months
A half a year!! And it’s hard to remember life before Scarlett.
Was there a time when this sweet little face wasn’t a part of our family?
At six months, Scarlett rolls quite a bit (in fact, she took her first . . . and second . . . tumbles from our bed. Which means, she’s been duly initiated), and she babbles “mamamamamama” all the live long day. She also blows raspberries and is generous with her baby slobber. She’s working on a couple of teeth, I think, but none have made an appearance yet.
I can’t resist her. She’s temperamental and demanding, but she has my heart on a string, this girl. She exhausts me, and yet, I miss her when I’m away from her for more than a couple of hours. Motherlove is a curious thing; it’s strange to think that the shock of my pregnancy with her was so upsetting to me, and it’s resulted in this little person who fills my heart.
It’s hard to believe that in the next month or two, she’s likely to start sitting up by herself, and then crawling, and eating food that doesn’t come from me. Sometimes I wish I could stop time and keep her a little baby. This time is so fleeting.
Finn plays with the iPad a lot. So much so, in fact, that we actually invested in a second iPad (for me) because he and I were basically, well, fighting over it. I’d be reading a book on it, and he’d be raising hell because he wanted to play on it. Although we’re certainly not parents who give in to their kids’ every demand or buy all the latest gadgets their kids want (we’re one of the only families I know that doesn’t have a Wii, or even a flat-screen TV), the iPad is a different story. More and more, it’s being utilized in classrooms, and even Finn’s speech therapist sometimes uses one with him and her other students. It engages him, it’s interactive (rather than passive, like watching television), and he’s learning from it. More so, in fact, than I realized.
I was shocked to discover recently that he recognizes most of his letters. I did not teach him this – I’ve never been a flashcard-wielding parent with any of my kids, it’s just not me. And he’s not learning this in preschool, either – the preschool he attends is not academic, but rather, developmental.
Do you know what this means? If he can learn his letters, he can eventually learn to read. And before you say, “Of course he’ll learn to read,” let me just say that while many, many kids with Down syndrome do learn to read nowadays, some do not. I try to maintain reasonable and healthy levels of optimism and realism with regard to Finn’s capabilities. Even so, I was surprised at how much this surprised me. Maybe because it happened without any person’s intervention – it was just him and the iPad.
But wait, there’s more!
Not only can he identify letters, he can match those letters up with words that begin with letters he is presented with! I won’t go so far as to say that this is reading or even pre-reading, but it’s certainly a step towards pre-reading.
I’m suddenly feeling very, very fortunate that Finn was born when he was. There is so much educational technology now, it’s relatively easy to access, and the benefits are undeniable. It’s hard to say what studies will show in ten or twenty years, looking back and comparing the educating of kids with intellectual disabilities in this age of technology versus educating them just a half a generation prior, before the technology explosion, but I imagine there will be notable differences.
Here are some of Finn’s favorite iPad apps:
iTot Alphabet (this is the app he’s using in the first clip above)
National Geographic Look and Learn Animals (this is the app he’s using in the second clip above)
Preschool Farm Animals by Photo Touch
First Words – Toddler Touch and Say
Let me know if you have any apps you’d like to suggest!
Another Gun Story
I recently wrote about how, many years ago, my dad taught me how to shoot a gun. It was a heartwarming story, and I very much remember it as a time when the hard-won bond between me and my dad was cemented a little more.
Now I’ll tell you another gun story. It’s not too long.
One night when I was about 10, I woke up to the familiar sounds of my parents fighting. It was another doozy – my father’s drunken shouting, my mother’s shrill screaming, things going bump and bang as my father, I imagined from my bedroom, staggered around, and the sounds of slapping and hitting as the fight escalated. Alone in my room, I buried my head under my pillow, trying to block out the sounds. I lay there, rigid with fear, waiting for them to stop.
At some point, my mother began screaming, “KIDS! CALL THE COPS! HE HAS A GUN! CALL THE COPS!”
I was frozen in terror, afraid to move a muscle. A gun? I couldn’t get out of bed and call the police! I was just a little kid! My two brothers were in their room next to mine, and I imagine they were just as terrified as I was.
In a short time, the police did arrive. I don’t know if it was my mother who called them or a neighbor. They took my father away, though. I remember that I spent the rest of the night in my mother’s room, and that she cried all night.
They took my dad to what we called then “the funny farm.” He was pointing the gun at himself, apparently, threatening to shoot himself. I don’t remember how long he was in the psychiatric unit of the hospital – a day or two – but that night left a lasting impression on me. If I close my eyes and concentrate, I can call it up like it was last week.
As I said in my recent post, my dad always had guns, for as long as I could remember. They were not locked up – they were stored under his bed and in his closet. We were never taught gun safety. We never talked about his guns at all as far as I remember; they were just part of the background at home, something I don’t think my brothers or I ever thought much about. I don’t even know why my dad had guns – he didn’t hunt, and he didn’t hang out at a firing range. Did he inherit them? Did he buy them himself? I have no idea.
Looking back, I feel extremely fortunate that nobody got hurt that night (at least not with a gun). Or any other time, really. My dad was often drunk and often volatile. My older brother was troubled and often violent as well. It makes me shudder to think how easily something truly horrible could have happened.
There’s no point to this story, really, except that guns are bad. Especially when in the wrong hands at the wrong time. And there’s really no way to predict when or if someone with access to a gun might snap. My dad had a history of alcoholism and violence, but there are plenty of seemingly rational, “normal” people who go off the deep end for one reason or another. And you know what? You never hear stories about people with guns saving other people, despite gun proponents’ insistence that bearing arms promotes safety; you hear about people with guns hurting other people.
Horror, Sorrow, and Anger
Up until a few days ago, I had never heard of Sandy Hook Elementary School. Now, like just about everyone else in the world who has access to the news, I’ve become intimately familiar with the name. I don’t know what to say about the massacre; the horror and sorrow I’m feeling – the sadness I can’t seem to shake – isn’t unique. Anyone with a child – or a heart – is reeling.
I have not talked to my kids about what happened, with the exception of Kevin, and to him only briefly. On Friday, I lowered the flag in our front yard to half staff, and when the kids got home from school, they wanted to know why it was lowered. I told them that we do that to honor people who have died, and they wanted to know who had died. “Some people far away in a different state,” I told them. How can I tell my kids that someone went into an elementary school and gunned down teachers and little children? At almost 16, Kevin wasn’t satisfied with that explanation, so I told him briefly what happened in Connecticut, but I couldn’t even finish without having to swallow back tears.
I have refused to read any articles or watch any news segments about it – what’s the point? Nevertheless, it’s impossible to sign online without seeing headlines: “NEW CHILLING DETAILS EMERGE” and “VICTIMS’ FAMILIES REACT” and “PROFILE OF A KILLER” and “FUNERALS SET FOR THREE OF THE VICTIMS.” Words like “pimp” and “ratings” come to mind.
We got the bubble-headed-bleach-blonde who
Comes on at five
She can tell you ’bout the plane crash with a gleam
In her eye
It’s interesting when people die-
Give us dirty laundry
– Dirty Laundry, Don Henley
I don’t want to know the details. I don’t want to see the photos of the sweet, smiling faces of those little boys and girls whose lives were so ruthlessly cut short. And I’ll tell you: if I were any of their parents, I think having the details and photos splashed relentlessly across every news outlet would be the last thing I would want. Even reading the headlines makes me feel like a voyeur. Is the media just filling a demand? Are we the people just feeding the media machine with our morbid curiosity? If all the coverage promotes meaningful discussion about the underlying issues and encourages people to lobby for change with regard to gun control and how we approach mental illness, then perhaps it will have been a positive force.
We let those teachers and kids down. We as a nation value our personal freedoms more than we value other people’s very lives. We are a nation in shock and mourning now after Friday’s horror, but it wasn’t the first school shooting here in the US – although it perhaps claimed the youngest victims. Mall shootings and school shootings seem to be gaining popularity – and this kind of thing doesn’t happen in other civilized countries. How many mall shootings, how many school shootings, how many people have to be senselessly murdered before we take a good hard look at the way we do things here and make meaningful changes?
“Are we really prepared to say that we’re powerless in the face of such carnage, that the politics are too hard?”
– President Obama
The religious rhetoric is everywhere. I understand that people take comfort where they can, and it’s in the face of tragedy like this that, I suppose, the appeal and attraction of God and religion are at their most powerful, but if we lull ourselves with dreamy images of children running to Jesus and playing in paradise forevermore, we are doing nothing but living with our heads in the clouds, and effectively trivializing what happened. In effect, these fairy tales justify what happened, and they don’t encourage meaningful dialogue about important issues.
It’s starting to feel dangerous just to be alive. I don’t want to live in fear, but it’s hard to not walk around without at least a vague sense of apprehension. I deeply hope that this latest tragedy brings about meaningful change; if it doesn’t, then all those little lives cut short will really have been for nothing at all.
Yesterday Michael came home from work and started telling me about this case he’s handling at work, and how the Ninth Circuit granted his (client’s) petition for rehearing, which means he gets to go up to San Francisco and argue before eleven judges. Very exciting stuff. Then he asked me about my day. “Oh, I had a very productive day,” I said. “I did three loads of laundry, took Finn to speech therapy, baked some Christmas cookies, gave the baby a bath . . .”
More and more lately, the shape of my days – the monotony of them, the veritable triviality of them, the drudgery of them – is getting me down. I know I’m not supposed to say these things, right? As a stay-at-home mom, the proper thing to do is to sing from the rooftops in exaltation about how wonderful and magical my life is as a housewife, and as a “mommy blogger” (if that’s even what I am; I’m not sure), I should be honing my photography skills so as to document for all the world just how wonderful and magical my life is.
The reality is, however, that I’ve been spending an awful lot of time lately feeling like not much more than a servant. Everybody in this house wants something from me all the time, and most of them complain about what they get from me. I am here to do for, to serve, and to listen to (not be listened to). I am a pair of hands and a pair of ears.
Do I sound bitter? I guess I am.
On the one hand, I do feel extremely fortunate to be able to stay home to raise my kids. I know that not everyone can do that, and there was a time when I couldn’t financially do it either. On the other hand, lately I can’t help but question the choices I’ve made. I don’t think they’ve been the wisest choices.
I read this book recently, Why Have Kids by Jessica Valenti. I couldn’t put it down, and it left me feeling angry and depressed. The premise of the book is, first and foremost, that motherhood isn’t all it’s cracked up to be. Can I get an Hallelujah? It’s not. I’ve known that for a long time. It is a lot of monotony and drudgery. There are, without a doubt, moments of bliss, of transcendence, but those moments are fairly rare – rare enough to be noteworthy, certainly. It’s mostly a thankless undertaking. I guess the rewards come later, when the kids are all grown up, and they turn out to be decent, productive members of society. Then we can sit back and say, “I guess I did a pretty good job.” (In truth, though, so much of how they turn out is out of our hands; if they turn out to be assholes, do we take the blame for that? I guess in that case, the whole endeavor will have turned out to be a complete failure.)
Valenti also posits in her book that, basically, we mothers have been duped into believing that motherhood is the most important job in the world by a paternalistic society that really, even in this progressive, enlightened age, wants to keep women at home where they belong and let men continue to run the world. Even the push to breastfeed, she asserts, is a way to keep women tied to the home and the children, and to limit their choices. I can see truth in this: while I’ve always been rather militant about breastfeeding, it can’t be denied that formula was created in the first place as part of Women’s Lib – a way to open up women’s options. And while we as a society push breastfeeding, we certainly don’t make it extremely easy to breastfeed out in the world – especially in the working world.
Is motherhood really the most important job in the world? That’s like saying, “Maintaining this house that I built, that nobody asked me to build, is the most important job in the world.” I’m only raising the kids that I chose to have – I’m not doing society any favors. Perhaps one of my kids will grow up and contribute something truly amazing to society – and in that way, it will be a blessing to humanity that I bore and raised that child. But it’s not likely. Let’s be honest: the vast majority of our kids will live average lives and will not leave a lasting mark outside of their own families.
And really, is doing laundry the best I can do? Am I dazzling anyone with my baby-bathing skills?
Motherhood certainly doesn’t utilize my best talents, and in fact, it probably, more than anything, exposes my failings and shortfalls.
The truth is, I’ve been turning these thoughts over and over in my head for a while. It’s hard to write this stuff and not come across as ungrateful, and even unloving. I love my kids, okay? I do. They are my whole world. I guess that’s what’s getting me down. They are my world.
What happened to me along the way? Who am I? I had no idea when I took on this gig that my entire identity would be subsumed by my kids. I am a mother. I am a mom. Outside of that, I don’t know anymore.
I think I should have had fewer kids. I think I should have kept working outside the home – at least part-time. Not only have I lost myself, I’ve made myself completely financially dependent on my husband (which I swore I would never do after my first husband died and I sold our house, paid off all our debts, bought a smaller house for me and Kevin, and started over fresh). I’ve sacrificed my earning power. I’ve been out of the workforce for ten years now, and it will be at least several more years before Scarlett is in school and I can possibly find part-time work. By then I’ll be in my fifties (!!!), and I won’t be qualified to do anything that will earn as much as I earned before when I worked. It’s frightening when I think about all the what-ifs.
And it’s not just about money. What am I teaching my own daughters about independence? I’ve started to think that maybe I’m not such a hot role model for them. And maybe everyone in this house would appreciate me a little more if I weren’t here at everyone’s beck and call all the time.
But for the time being, I’m stuck. I feel stuck, anyway.
And that’s the thing: it’s a goddamn myth that women can have it all, do it all. No, we can’t. If you want to stay home to raise your kids, you sacrifice independence, earning power, and possibly your sense of self. If you work outside the home after having kids, you’re engaged in a constant, never-ending, exhausting juggling act, and it’s likely that you won’t get the kind of practical support you need at home or in the workplace to feel like you’re giving your best self to either.
I don’t have a tidy wrap-up for this particular post. So, that’s it I guess.
Down Syndrome Awareness: Guest Post by Emily
I know that Down Syndrome Awareness Month is long behind us, but it’s never a bad time to raise awareness. The following was recently sent to me by a fellow mom of a child with Down syndrome. She first got in touch with me when her son was a little babe, and we’ve since become better acquainted via Facebook. The online community of parents of kids with Ds is amazing, and I am truly grateful to be a part of it.
In August of 2011, our son Jacob was born. We had the “surprise” diagnosis. We live in a rural area with very limited resources. That is why searching the Internet seemed to be my only option. We had so little knowledge of what Down syndrome was all about. Therapy for babies? I had never heard of such a thing. We do not have those resources in this immediate area. No doctor or specialist offered much information at all. As a matter of fact, a doctor told me to not read the internet at all for any information, because most of it was outdated and inaccurate. When they did try and share information it all seemed so impersonal and generic, since they had not been through it themselves. I figured that no one would be more help to our family than the up close and personal from another family. That is when we found Lisa and Finn.
SEARCH: “Down Syndrome”, “New mothers with babies with Down syndrome”, “Children with Down syndrome”, “Life with a child with Down syndrome”, etc, etc,…then I was introduced to “Life As I Know It” by Lisa Morguess. I immediately felt a connection when I saw that she was close to my age and I saw how many children she already had. I was wondering what is was like for the older children to have a sibling with Ds. I had never even read a blog before Jacob was born.
And so began my quest for information on what it was like to be a mother of a baby with Down syndrome. I knew no one at that time who had been down this path. I longed for that connection, for someone to tell me what this was going to be like.
I thought Finn was the most beautiful boy! I looked over all of Lisa’s pictures carefully and just cried like never before. Tears of joy that is! This is how Down syndrome really is! No institutions, no grim outlook at all, this really did not seem any different than raising any other typical child. I combed the blog pages looking for insight, and I got that. A very honest depiction of their life raising Finn. Also seeing another outlook on therapy was quite reassuring after feeling so much urgency and pressure from other parents in the Ds community. Another thing most people do not know is the raw grief and emotion involved when things are not quite as expected with your new born baby. I also learned this is part of the process and that it is okay. I saw how much Finn’s brothers and sisters adored him and looked after him. I loved to see how his sisters took care of him and let him play dress up with them. I soon developed an excitement about the future in days to come. I knew my daughter was also simply loving her brother for being Jacob. That is the beauty of children, they love completely and don’t even care about Down syndrome. A lesson all adults could really learn from.
I quickly learned how politically incorrect medical professionals are as a whole. Through the pages of the blog I was introduced to a more progressive way of thinking, as well as a more articulate way of speaking in a language that showed respect for all individuals living with a condition called “Down syndrome”. I have started encountering a lot of individuals who still have so many of the same old tired images of people with Down syndrome. The ” I am sorry’s”, the long face they reveal after showing them a picture of my son. I just had an elderly man tell me that he used to know “some of those”. It broke my heart, but it was then that I realized how important it is that we continue to educate the public and get rid of these old outdated images and feelings some people still have.
I no longer felt like the only woman in the world with this new path before me. I emailed Lisa with countless questions and she would always get right back to me. I soon had my friends and family read her blog so they could better understand. I became inspired, motivated and confident that we would be “okay”. I can always count on well researched topics from Lisa and value her opinions, whether I agree or not.
I have made many more connections since our journey began. However, I will never forget the day that young Finn popped up on my laptop screen and showed us all how beautiful life is.
Thank you Lisa and family for taking the time to advocate, research and educate our public on the truth and facts regarding Down syndrome. You have a strong voice and I hope you continue to be a presence in our community.
When I was somewhere in my mid-twenties, my dad invited me up to his place for a weekend. We had managed to forge a positive relationship in my adulthood after many tumultuous years while I was growing up. At this point, he lived with his second wife in a house up in the mountains near the coast of Central California. I had been up to visit before, but this time it would be different: his wife would be gone for the weekend, and I would be going up alone, without my husband. It would be the very first time in all my life that I would spend an extended period of time alone with my dad, with nobody else acting as
buffers. I was thrilled and anxious; all my life I had craved a close relationship with my dad, and for most of my life that was made impossible by my parents’ divorce and ongoing melodrama, and his alcoholism and penchant for violence towards my mother and me and my brothers. What would we talk about? What would we do for two whole days? Would it be weird and awkward?
As it turned out, we had a grand time, the two of us. I flew up, and he picked me up at the airport and drove me back to his house in the woods. We spent the weekend eating food home-cooked by him (he loved to cook and was wonderful at it), watching old Laurel and Hardy movies, smoking in the house (not allowed by his wife), even drinking together. My clearest memory of that weekend, though, is of my dad teaching me how to shoot a gun. He always had guns – for as long as I could remember. That weekend he decided he was going to show me how to shoot. So he took a paper grocery bag and drew a target on it with black Sharpie, and hung it on the fence in the paddock. At the other end of the paddock – several dozen yards away – we stood, fortified by alcohol. He put a pistol into my hands and explained the mechanics of it to me, and then showed me how to shoot it. It was thrilling and terrifying. I can still remember the force of the recoil, and my ears rang for days afterward. We stood out there shooting for quite a while, and
somewhere, I still have that hand-drawn target on a paper bag, riddled with bullet holes, each of which he initialed with his or my initials, depending on whose bullet hole it was.
A couple years ago, my mother attempted to reestablish contact with me. When I rejected her advances, she sent me a scathing letter – 6 pages of single-spaced typed vitriol, recounting every perceived crime I’ve ever committed from birth on. In the letter, she also told me that any belief on my part that my dad and I had had any semblance of a positive relationship in my adulthood was a mistaken belief because, she said, it is impossible to have a healthy relationship with an alcoholic. I don’t know why a mother would feel the need to try to rob her child of positive, loving feelings.
It’s true that he remained a drinking alcoholic until his death, and it’s probably true that over the years since his death, my memories of him have attained a certain sheen that might not be completely reflective of reality; we do tend to glorify those whom we love and lose. All I know is that at some point, my dad changed. He continued to wrestle with his demons until he died, he continued to drink, but he seemed to reach a state of reflection. He looked back on his transgressions as a father to me and my brothers as we were growing up, and he realized that he fucked up, and he was full of remorse over it. And he was sorry without ever demanding that I also be sorry (which is what my mother has done). In my adulthood, he was kind to me, he encouraged me, he was supportive. He seemed to be able to see me as a person in my own right, a person with value, a person deserving of respect.
My dad’s been gone fourteen years today. I miss him more than ever. I can hardly imagine what he would think of my life as it is now – all these kids! I wish they all could have known him.