Some Things Are Just Meant To Be

My oldest son, Daniel, was born with Down syndrome. Because I've never wanted to define him--nor have others define him--purely by his disability, I always try to view him more as a young man who happens to have Down syndrome than "My Down Syndrome Child." He is above all else a human being, deserving of the same dignity and respect as any other human being. That's why I like to stress the things he has in common with other human beings, rather than focus on his differences too much.

Acknowledge them I freely do. I know, for instance, that he'll probably never marry and have children, never drive a car, never earn a Ph.D., learn to play an instrument, become a star athlete. But I also believe that focusing too much on his physical, emotional, intellectual and behavioral differences would only serve to limit him in life, and limit how others perceive him.

So until now I've avoided writing posts that focus on his disability. I don't intend for my blog to become Down Syndrome Central or anything. But because, as I said in my previous post, October is National Down Syndrome Awareness month, I hope you won't mind if I indulge myself in one more Down's-related post before the month is out.

I have a few thoughts to express today about how, in retrospect, it almost seems as if Daniel was destined to come into the lives of my husband and me.

There's the issue of genetics, of course. I had a great uncle who had Down syndrome. Lived to the ripe old age of 69, he did, which is quite old for someone with this disability. I attribute his longevity to the fact that, in an era when so many handicapped infants were whisked out of the arms of their heartbroken mothers and fathers to be hidden away in institutions, my great grandma and grandpa--a hearty Minnesota Swede and German, respectively--kept their boy at home, where he was raised alongside his three "normal" siblings, and where he remained until both of his parents had died. Only then did his siblings look for, and find, a wonderful group home for him, where he had a job, friends, and a thriving social life, and where he was eager to return after his weekend visits with family. (Which is always a good sign. It's when they DON'T want to go back that you should worry.)

So was it simply a question of genetics that brought Daniel to us? Surprisingly, it wasn't. When the doctors did all the blood tests, they discovered that neither my husband nor I was a carrier of the gene that causes the extra chromosome associated with Down Syndrome. So it was purely an "accident." And because we were quite young when we had him (early 20s), it was against pretty high odds (about 1 in 1000) that he was born with the disability. Everyone knows that the odds of having a baby with Down syndrome increase greatly with the mother's age, so that by the time a woman is in her 40s, the risk is very real, and goes up higher with each year. But to be 23 and have your first child born with Down's...well, let's just say it takes you completely off guard.

So what makes me feel that I was destined to have a baby with Down syndrome? Call it intuition if you like. First there was the fact of growing up with Uncle Tommy around. Everytime dad would put mom and all of us kids (there were *ONLY* five of us at the time in our still-growing family) onto a train in Chicago's Union Station and we'd head up to Minneapolis to visit her relatives--there Uncle Tommy would be, just he and great-grandma left in the old white clapboard house he'd lived in since his birth around 1930.

As we kids and our Minnesota cousins ran wild around great-grandma's cozy old house, Uncle Tommy would be sitting there in his big worn armchair like a king on his throne in the tiny living room, watching his favorite shows on TV. Every time we got too loud for him or blocked his view of the TV, he'd get all flustered and forcefully say "SHHH!" to us, putting a finger to his lips for emphasis. But other times he seemed to enjoy having all of us little kids bustling about and disrupting his normally calm, quiet house. A smile would crinkle his sweet slanted eyes as he'd

watch us play. Sometimes he'd even try to talk with us a little.

Ever since those days, I always felt somehow drawn to people with Down syndrome. Whenever I'd be out with my parents at the zoo, a museum, restaurant, etc. and spot a person with Down's, I'd just kind of watch them for awhile. I wouldn't stare rudely at them or be impolite in any way about it. I just felt compelled to acknowledge them, just because I cared, and felt a strong affection for them. Long before my Down syndrome baby was born, I often had to resist the overwhelming urge I sometimes felt to wrap my arms around people with Down's and give 'em a great big hug.

To be completely honest, in those early years I was also slightly afraid of and even slightly repelled by my uncle, with his thick tongue that was always pushing out of his mouth as if there just wasn't enough room for all of it in there (which of course I later found out is exactly why many people with Down's have the very same problem). And I was scared a bit by his droning, slurred speech and the moaning noises he'd make when he just couldn't find the words in his limited vocabulary to express what he was feeling, and so had to lash out somehow in frustration.

Yet at the same time, I was also mystified, fascinated, empathetic and curious about him. Though he was a grown man in his 30s at the time, he seemed so childlike and vulnerable with his lumbering, shuffling gait, his stubby fingers, his thick neck, his wire-rim glasses and that protruding tongue, so I felt almost protective of him, even when I was just 6 or 7 myself. I guess I just sensed that he was still a lot like a kid himself. He had a thing for Superman, liked to wear a towel pinned around his neck with a safety pin as a cape. And he loved cap guns. So how could a 7-year-old not relate to him, right?

So this background of growing up with Down syndrome as a normal part of my family life sort of groomed me for what was to come in my own life, though of course I had no idea then what the future held for me.

Then there was that textbook in my Intro. to Psychology course in college. I remember very clearly being drawn to pictures of people with Down syndrome in the chapter on "abnormal psychology." As I pulled an all-nighter to prepare for a test, I can still remember staring at those photos, quite mesmerized by the sweetness and innocence of those faces, feeling a surge of compassion, love almost, toward them...that protective feeling again.

And perhaps most strangely and presciently of all, there was the time in the hospital, just days before Daniel was born. My doctor had admitted me two weeks before my due date, after we realized I was quite small for my dates. After he'd studied the results of an ultrasound, he sat us down in his office. I clearly remember him sitting across from my husband and me at his desk, giving us the diagnosis: Intrauterine Growth Retardation. He must've noticed the involuntary reflex of fear in our eyes as soon as he uttered the word "retardation." Because he quickly added, "And I stress, this just means PHYSICAL retardation. The baby's PHYSICAL size isn't measuring up." (I guess he really didn't know about the Down's at this point, or I don't think he would've said that. At least, I hope he didn't know yet, and that he wasn't just withholding that information from us to postpone our grief.)

As I lay there in my hospital bed that weekend, missing my own baby shower, waiting for labor to be induced the following Monday, I picked up my copy of LaLeche League's guide to breastfeeding and started flipping through it. Though I'd exhaustively researched this topic over the past nine months, I figured it couldn't hurt to review. After all, I'd be needing this knowledge a little sooner than I'd expected.

And there in that book was a photo of the sweetest, most beautiful baby. My eyes kept being drawn back to it, almost involuntarily. Yes, you guessed it: The baby had Down syndrome. And he was a boy, in an adorable little baseball cap, I remember. He had the sweetest grin on his little face. I couldn't stop gazing at that photo, my heart swelling with love and tenderness for this pure, innocent little guy who'd drawn a short straw in life, who was starting out life with a huge strike against him. But he didn't seem to know that, or to mind. With that sweet smile on his face, he just looked so happy to be alive. He was in the chapter on nursing a child with special needs.

I finally forced myself to turn the page after awhile, truly thinking I'd never need such information. I still had that confidence that most first-time parents have that their baby will be absolutely "perfect."

And then, two days later, our Daniel was born...with Down syndrome. It was a devastating shock and a raw wound for quite awhile. But in some ways I'd been preparing my whole life for his birth. Strange how life works sometimes, isn't it? And he DID turn out to be quite "perfect" in his own way, after we, his parents, were able to do some adjusting, some rearranging of our initial dream. We just needed to learn to live with a new, slightly revised definition of the word "perfect."

Down Right Beautiful

(This post is dedicated to all the beautiful, remarkable people in the world who have Down syndrome, as well as to the families and friends who love them.)

October is National Down Syndrome Awareness Month. With me being the very sporadic and infrequent blogger that I've been so far, it probably doesn't surprise anyone that it's taken me until the month is nearly over to write a post reminding people about it. But as one who is too-often running late and is an expert at procrastinating, I've come to learn that in most things, the old saying "better late than never" really DOES apply.

In that spirit, I present the following two-part documentary, which I discovered much to my joy on YouTube. It's about the very special Core Family, two loving parents and four big sisters who weren't about to let a little Down syndrome get in the way of loving and caring for their son/brother.

It's a beautifully filmed little piece of work (with kudos to Papa Core, who captured his children's 1960s childhoods so beautifully and poetically on his no-doubt quite primitive video equipment. The moving footage, combined with his eloquent, poignant commentary, brought tears to my eyes more than once while viewing this. The credit goes to filmmaker Roger M. Richards for the evocative synchronization of Core's audio commentary with his video images. Richards--Core's grandson, and the son of one of the sisters featured in the film--found his grandfather's audiotapes and home movies among boxes of tangled film spools he inherited upon his death, and edited them together to create this incredibly moving documentary.)

I think this "small" film says just about everything there is to say about the sacred bonds of family, and the incredible, abiding, unconditional love of four sisters for their baby brother. And--perhaps most important of all in these times when the prevalence of amniocentesis is leading to an alarming increase in the rate of abortions of fetuses revealed to have Down syndrome--it shows us the sweetness, purity and beauty (maybe not apparent to some on the surface, but there all the same) of people with Down syndrome. I think it shows quite clearly just what the world would lose if people like Dwight Core Jr. (and my son Daniel) ever became an extinct "species."

Think of Me First As A Person--Pt. 1

Think of Me First As A Person--Pt. 2

Loonacy

My husband and I caught the last half of On Golden Pond when it was on TV recently. It's a problematic movie, very uneven in tone, switching as it does from deeply moving scenes that ring so true to some downright melodramatic, even unintentionally silly scenes. Even the title is all wrong. I know we're dealing with acting royalty here, but excuse me Mr. Fonda and Ms. Hepburn, that's no mere "pond" you're on, that's a full-fledged lake. And a huge mother of a lake at that!

But there's one thing this movie gets absolutely right: the loons! And Norman and Ethel's reverential love for them--that's absolutely true to life too.

When they arrive at the beginning of the summer to open up their cottage, and their ears perk up and they get those blissed-out looks on their faces at the sound of the first loon call of the season, well...that isn't sappy melodrama, that's reality! In fact, it's exactly how my husband and I react whenever we hear them calling. Call us loony if you will, but we stop whatever else we're doing, and just listen intently. If the kids are talking, we hush them and demand that they listen too, until the last strains die down and we know this particular loon moment has passed.

And calling it a "loon moment" isn't hyperbole either. When you're fortunate enough to be staying at a lake that's got a resident loon family floating and diving around in its waters, you feel as if you've been blessed, that nature has given you a rare gift. You fully appreciate that you're being graced by their presence.

And this is not just because they're fairly rare birds, who live within a very limited range in North America. It's also because they're such special birds. They look, sound and act like no other birds around.

Once you've heard the lonely, hauntingly beautiful wail of a loon late in the night on a Northwoods lake, or its crazy tremolo warbling as it flies across the sky at sunset, you never forget it. If you've never been lucky enough to hear one, this is what it sounds like:

http://www.birds.cornell.edu/AllAboutBirds/audio/Common_Loon.html

Loons have held an almost mystical attraction for me since I heard my first mournful but beautiful loon call as a child, while whiling away some idyllic summer days at relatives' cottages on Minnesota lakes. This was the "old days" of the '60s to early '70s, before cottages became "summer homes."

So I'm not talking about those palatial, fancy log homes with their second-floor lofts, prow fronts and huge banks of windows. No, these were honest-to-goodness, rickety old spider-web shrouded cottages. The kind with screen doors that squeaked when you opened them, and banged shut with a nice, satisfying slap when kids ran eagerly out the door after breakfast or dinner to explore in the woods, or fish from an old wooden pier, or skip stones on the lakeshore (looking for the perfect, nice flat rock in the crystal clear, shallow water along the shore was half the fun), or go for a swim out to the diving raft that was often anchored offshore. (Sometimes we made it home from our wanderings in the woods for lunch too; other times not.)

Now those were some happy, magical times, some of my best childhood memories. And the compelling call of the loon was the perfect soundtrack to accompany them.

It wasn't until I'd heard them for years, felt their unseen presence on many a Northwoods vacation, that I had my first actual sighting of one (or at least, the first one I remember). Finally it was my turn to wake before dawn and join my dad for an all-morning walleye-hunting expedition on his boat. We kids had to take turns, because there were 7 of us. Way too many to fit safely on his little rented motor boat at one time.

As we coasted along in the chill gray of dawn, a loon appeared ghostlike out of the thick mist that floated over the lake's surface. My dad pointed it out to me as we drifted silently by, not wanting to scare him.

To my untrained eye, it looked like a duck. But once you're familiar with those iridescent black/dark green heads, thick necks, long pointy beaks and red eyes that somehow don't look ugly or creepy (as you might think red eyes on anything would), and those black and white checkerboard feathers, you can never mistake a loon for anything else. They're magnificent birds!

And their calls...I can't quite express in words the primal hold they have on me. They're one of earth's oldest bird species, which might at least partially explain why their tremelos, hoots, and especially their signature wails, reach an ancient place deep within my heart and soul.

Heaven to me is two loons calling to each other on a full-moon summer night, their haunting cries echoing across a quiet lake aflame with silver ripples in the remote and wild Upper Peninsula of Michigan.

Yes, I know Yoko Ono would have a field day with this one, but I'm talking loons in June under a full moon. But somehow I think Paul McCartney--who Ms. Ono famously scoffed at for such simplistic rhyme schemes and his sometimes saccharine expressions of emotion--might understand the overpowering emotions that can get stirred up by the haunting call of the loon.

Suspended In Mid Air

This is one of my favorite photos of my youngest son, for several reasons. I love the way it captures a carefree summer afternoon in our leafy backyard. Then there's the goofy pose my little guy is in, all lanky limbs akimbo. And there's something about the way the camera captures him suspended in midair, just before he takes his plunge into the cool, refreshing, aquamarine water.

The shot was taken more than two years ago. We were having fun experimenting with the "sport" setting on our new digital camera. My son was eight here, right near the end of that time when I could still safely get away with calling him "my little guy."

And just this past summer, I somehow got away with using this photo on the front of an invitation I made for a pool party he had for his friends.

Knowing how much he likes to avoid appearing "babyish" at any cost, I was actually pretty surprised I got away with it. He did protest when he first saw it, but only slightly. I convinced him that his friends would think it was pretty neat, that they wouldn't find it babyish at all.

But I also have a 15-year-old son. So I know full well that this is probably one of the last times I'll get away with something like that with my 10-year-old. I know that any day now, he could transform.

He's already showing signs of it.

One night after I'd pulled the covers up over him and bent down to give him a kiss on the cheek, all of a sudden he laid this one on me: he said he didn't need me to tuck him in anymore. He even pulled out the dreaded, "None of my friends' moms tuck them in anymore." It felt like a punch to the gut hearing my youngest say that, knowing that--after 23 years of raising kids--my days of "tucking in" are numbered. But I quietly absorbed the blow and jokingly persisted, because I could sense that he wasn't really quite ready to let go of our lifelong tradition. Just testing the waters.

My hunch was fortunately correct. As of this writing, I'm still allowed to tuck him in and get my goodnight kiss. But I know it won't be long now before he decides he really means it.

It happened this way with his older brother. This is the age when I first began noticing the little signs that he was preparing to "break away."

You spend years hoping they'll learn to pick up their Legos and put them away. Then when they finally do it, it's for good. And then you long for the days when there were piles and bins of them everywhere. You wish you were still stepping on them in every room of the house, that the vacuum was still sucking them up with that loud, telltale rattling sound.

And the bookshelves tell the story of their growing up too. The hardcover Dr. Seuss books that you spent hours reading together when your sons were toddlers and young boys give way to hardcover Harry Potters. The multitudes of thin Clifford, Franklin, and Berenstain Bears paperbacks--books you were always happy to read with them because they were just the perfect length for a quick pre-nap read--get replaced by longer chapter books about Lego Bionicle characters, or Pokemon or Sponge Bob. Then it's on to Goosebumps, then Artemis Fowl, and before you know it, he's graduated to those Japanese manga paperbacks. At first you protest that there's too much violence in those stories, that they're "graphic" in more ways than one. And then before you know it, your "little boy" is at the point where you think he might be mature enough to handle certain morally centered R-rated movies if he watches them "accompanied by a parent."

(All too soon, my boys will be sailing off on their own adventures.)

We read the first five Harry Potter novels together, spending literally years-worth of memorable evenings tucked in on the couch together, me reading aloud to him chapter by chapter. Then finally the time came when he told me he'd like to make the journey to Harry's sixth year at Hogwarts by himself. And that's when I knew our nights of bedtime stories were officially over. Now he sits at the kitchen counter before bed most nights, munching on multiple bowls of cereal while reading Ray Bradbury or Stephen King stories to himself.

You can mark the passages of their young lives by their sleeping arrangements too. In those early months of their infancy, all of my boys slept nestled in right beside me, as safe and warm and protected as they could possibly be. Then when they'd lost a bit of that newborn fragility, when they'd grown bigger and stronger and could sleep through the night, we found ourselves moving them to their crib in our bedroom. It was just a few feet away, but it felt like a big separation nonetheless.

Finally when they got to be toddlers of two or so, it was time for them to make the move out of their crib and our room into a room of their own. Here they had their own real bed for the first time. But they were still reassuringly close by, right across the hall, where I could check on their breathing if they had colds, or pop in easily to make sure they were all covered up and cozy before I retired for the night.

And now that 15-year-old has recently moved out of the room he shared with his younger brother for the past eight years. He's made his biggest separation yet from the family proper. He's taken over the space downstairs that used to be our family office/computer room. So now he's got that quintessential teenager's "room in the basement," as far away from the rest of us as he can be without actually moving away.

He would've been scared to death to sleep all alone in the basement until a few years ago. But now...he loves it! He and his friend have spent many hours painting the walls, arranging furniture, assembling the new nightstand we bought him, digging up little objects d'art that we'd packed away in boxes, setting them up on his shelf and dresser. And he's wanted very little help from us in this undertaking. He's made it quite clear that he can do it on his own.

And in many ways, I'm loving it too, this surge toward adulthood and independence. It's a beautiful thing watching a small boy transform into a big boy, then into a pre-teen, and finally into a full-fledged teenager, a young man.

But I'm going to enjoy every minute I can with my last "little guy" before he grows up on me too.

The Ones That Almost Got Away

(Definitely not one of MY photos!)

Thanks to Peter in Australia for inspiring me to write a bit tonight. As I was replying to his comment (which I've copied below) about my previous post, I suddenly realized that my "reply" had turned into a full-fledged post itself. So I thought, ah, why not? I'm due for one anyway. So here goes....

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Peter wrote:

I can't do without my computer and scanner. A new digital camera is also coming my way.

They all help with blogging and sharing moments in time to anyone.

I just have to work out what I am going to do with the dozens of undeveloped 35 mm film rolls, God only knows how old they are, that are sitting in my cupboard draws.

Lost moments in time!

Anyway, thanks for listening. Must run!

Time for me to mow the lawn, clean the pool and fill in the holes that the dog has dug.

Regards
Peter McCartney
Sydney Australia.

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Exactly Peter! There you go. You've just reaffirmed the idea I was trying to express in my post, that there are pros and cons to both digital and film photography. Yes, photos are usually pretty easy to find when they're stashed in a drawer. But apparently sometimes rolls of film aren't. :)

As I said before, I love the stunning clarity of digital photos, and the amazing things you can do with them. But I don't like empty photo albums just sitting there collecting dust, waiting to be filled with photos I never seem to get around to printing. So that's the "dilemma" of my title.

And to answer your question about what to do with all those old rolls of film: ditch 'em right into the trash I say! I don't mean to sound bossy...just a warning from my own painful experience.

I still remember the time back in 1977, when I told my mom that I, my sister, and a few of our friends were going to take the bus and the L into downtown Chicago, where we were going to meet Led Zeppelin, so could I please have some film for my camera. She rummaged through the kitchen junk drawer and absentmindedly handed me a roll, probably thinking all the while, "Yeah sure she's going to meet Led Zeppelin."

Well, you might be able to guess what happened next. We DID actually meet them--all four!--outside the Ambassador East Hotel, where they were staying during the Midwest leg of their tour. They chatted with us for awhile, signed our album covers, and smiled obligingly for our cameras. And then when the film got developed, I saw that my otherwise great, close-up shots of Jimmy, Robert, and the two Johns were way-too-dark and way-too-purple/bluish. So much so that everytime I showed someone the photos, I felt the need to apologize profusely for their awful quality as I watched them squint to identify the four lads.

I remember my mom looking a bit worried when I got home and told her we'd actually met the band, and that I'd taken photos. "I hope they turn out; that film was pretty old." Boy, she wasn't kidding! Turned out it was years past its expiration date!

So I repeat, throw away that old film now! I know that can be a hard thing to do. With the price of film being what it used to be, it's almost like throwing money away. But I still wince when I think of the price I paid for my mother's thriftiness (or maybe it was just a lack of time for jobs like clearing out junk drawers, as she was raising 7 kids back then.) I could've sold those photos on eBay for perhaps thousands of dollars by now.

Not that I ever would really dream of it, mind you. Even shrouded in their "deep purple haze," those shots of a very cool-looking Jimmy Page in shades, with a rock-star scarf thrown jauntily over one shoulder, and John Paul Jones sitting calmly in the back seat of a limo on Chicago's Gold Coast, are still priceless to this former Led Zeppelin freak.

P.S. Your itinerary of domestic duties sounds like a typical weekend around MY house too. You lucky Aussies...here you are just beginning your spring, and it's already warm enough to use your pool! And here we are just about to put ours under wraps again for the next 7-8 months, until next summer rolls around.