Of Prematurity and Pandemics

November 17 is World Prematurity Day. It's also my preemie twins' birthday. Coincidental? I think not. Their first year and this year of the pandemic have become deeply intertwined in my brain. It's a weird brain, I admit. Jump on over to the Mike&Ollie site to view my musings. 

If you would like to honor Molly and Isaac's amazing journey, please wear a mask. 

Be well. Be safe. Be careful. 

28? No Way! Happy World Prematurity Day

There are two kinds of people in the world: those old enough to have 28-year-old twins, and those not. Clearly, I am far too young for that, but a woman who looks an awful lot like me has written a spectacular tribute post celebrating their birthday and World Prematurity Day over on the Mike&Ollie blog. You don't want to miss it. Read more here.

Happy birthday, Isaac and Molly!

Happy Prematurity Awareness Day

There are two kinds of people in the world: those born full-term (at or about 40 weeks gestation) and those born prematurely (before 37 weeks). Today, November 17, is National Prematurity Awareness Day. It is also the birthday of my two favorite preemies in the world, Isaac and Molly. (Happy birthday!)

Those preemies are 19 years old today. I know, I can't believe it either. Part of the reason that's so hard to believe is that the struggles they faced for the first five months of their lives are vividly etched in my brain. I remember more about those five months than I do about the last five months. That's what crisis does to us. It makes us hyperaware.

We've lived through it and those tiny little babies, born at just about a pound and a half each, are now young adults, off on new adventures. For years, people have encouraged me to write their story, but I wasn't ready. I needed to get them safely here, to this place, before I could gain the kind of perspective needed to write a compelling, meaningful memoir. The time has come for me to write my part of this story, because from here on out, Ike and Molly's stories are theirs to tell.

Many of you know that I have been participating in National Novel Writing Month (NaNoWriMo). I'm here confessing that I'm a NaNo Rebel, writing a memoir, not a novel. Along the way, I reread and transcribed the journals I kept during those long days in the hospital. I took me right back to their bedsides (I should say, isolette-sides). I've been bawling my eyes out, but they have been good tears — cathartic tears, finally letting me shed the fear of that desperate time.

As part of this project, I have decided to launch a new website today, chronicling that time on the neonatal care unit of Evanston Hospital by posting the actual journal entries, day-for-day, 19 years after the fact. I hope you join me on their journey at Mike&Ollie: 24-Weekers Who Beat the Odds. You're in for quite a ride.

We have been so lucky at every step along this journey. We have had wonderful doctors, nurses, therapists, technicians, teachers, helpers, family and friends who have helped and supported us. You know who you are. If I haven't said it recently, thank you. I am mindful even as I write our story, that many families with similar stories have not been as lucky as we have been. My heart is with you. My hope is that this project will help those who are at an earlier point along their path.

I welcome your comments here, as always, but I hope you'll visit the new site and leave your comments there, as well. Don't miss the video page, which has the commercial they made for Evanston Hospital and a short video they made as a gift to the parent support group of the Infant Special Care Unit. Bring tissues.

A special thanks to the lovely Rebecca Rasmussen for granting me a guest post today on her blog, The Bird Sisters.

FYI, you can now find me posting occasionally on Technorati. Here's the post that went up today about the Empire State Building lighting up for Prematurity Awareness Day.

Cryin' Time Again

"There is a sacredness in tears. 

They are not the mark of weakness, but of power." 

— Washington Irving, 1783-1859

There are two kinds of people in the face of emotional events: those who maintain a dry-eyed dignity and those who weep. If this post is splotched with mascara stains, I apologize, but I'm a crier.

We criers fall across a broad continuum, with the misters and dabbers on one side followed by your leakers, snifflers, huffers, whimperers, sobbers, bawlers, wailers, howlers and ululaters (not typically Americans; we're too uptight for that). I've always envied the misters — the ones who can show that they're feeling the deep emotions, but who are able at the same time to blink back the tears, avoid the runny nose, and preserve their makeup. I also envy the ululaters for their total abandonment and commitment to the emotion.

I  fall somewhere between a sniffler and and sobber, with the added quirk that once I start to cry, it's almost impossible for me to stop until dehydration sets in. My biggest fear is always that I'll lapse into the ugly cry before I dry up. Remember when Halle Berry, that beautiful woman, slipped into the ugly cry at the Academy Awards. I'd like to say it was a beautiful thing, but the fact is that the ugly cry usually makes everyone, crier and observer alike, uncomfortable.

I know I'm a crier, because during my wedding I looked at my groom and the waterworks started. Those who were there will remember that things were a little chaotic, what with my mom almost dying and everything, so when I reached for my pretty little lace hanky, I realized I had forgotten it. The tears kept falling, my nose started to run and all I could think about during the rest of the ceremony was that I wanted to grab the little red pocket square from our rabbi's suit coat. I would have, too, but he was 80 years old and I was afraid that kind of sudden movement toward his person might give him a heart attack.

I also know I'm a crier because our brand new elementary school principal caught me yesterday during the first grade play, where the twins played a hip-hop weed (the boy) and a swaying flower (the girl) in award winning performances. The minute the stage lit up, my tears started and our principal whispered: "Oh, you've got it bad."

"You have no idea," I said. "They shouldn't even be breathing and here they are performing, on stage, with all the other first graders." I couldn't say any more. The tears were crowding my voice and the ugly cry threatened.

But how, if that first grade play was just yesterday (and I know it was), are those same twins now experiencing the final few hours of their senior year in high school. I've done a pretty good job so far putting off the inevitable deluge, mainly because I've just been too busy and far too deep in denial (here's proof) to think too much about this approaching milestone. But it hit me hard as I drove to work this morning and I had to pull off the road to staunch the tide of tears before I could drive again safely.

It's here now, there's no denying it. Today was their last last day, and for the first time ever, I wasn't there to take their picture on our front porch (a tradition we practice every first and last day of school) and it made me cry. Tomorrow is prom — dresses and shoes and corsages and photos and tears. Next week we have to pay our fines and graduation fees (which is likely to spark an entirely different sort of crying), before we pick up caps and gowns and head off to a ceremony that's bound to be one big blubber fest.

I know these are tears of joy. I understand that all the tears of fear and anxiety we shed during five months on the NICU, years of hospital visits and worry, growth hormone and febrile seizures, speech and occupational and physical therapy — I know all those tears got us here, to this next first step, one that they will take on time with their peers. And I'm happy. Really, I am. You just can't tell because of the tears.

And there's only one thing that would make me happier: if I could do it all again.

What about you? Click here to tell us how you embarrass your family with public displays of emotion or whether you more of a stoic type.

From Crying Time by Buck Owens

"Oh, it's cryin' time again, you're gonna leave me

I can see that far away look in your eyes

I can tell by the way you hold me, darlin'

That it won't be long before it's cryin' time."

Photo credit: JGS-Handkerchiefs by gracey via morguefile.com

Holy Crap, They're Graduating — CMB Post

This was originally posted on the now defunct Chicago Moms Blog.

Dateline Evanston: Micro-preemie Twins Graduate from High School; Mom's Non-stop Weeping Earns World Record

Denial is the thumb in the dyke holding back the deluge of tears that I know is coming. So far, it's working pretty well.

The fact that it's May helps. May used to be a pleasant, benign month, the waiting room for summer. Now, it's a whirlwind of award ceremonies, school concerts, final projects, class picnics, paperwork and soccer games. If you could see my color-coded calendar, you'd weep right along with me.

This year, May bustle is my lifeboat down the River of Denial, and I'm grateful. Each morning, I focus on one square of the calendar, and take things one day, nay, one event at a time.

But the subconscious is an uncooperative entity, and I'm having a much harder time keeping things in perspective during my short, fitful hours of sleep. For example, last night my dream-state kept pelting me with the reality that the twins really are going to graduate in just a few weeks. And what did the devil on the shoulder of my subconscious whisper in my ear?

"You are old."

"Well, OK, maybe not old, but you are definitely not young. Only not-young people have children who are high school graduates."

It also revealed to me that my role is about to change. Growing up, I had nothing but respect for my parents. (In the case of my mom, it was more like fear. She is all of 5' 2" and tiny, but she has the best mom glare you have ever seen. It worked every time.)

That was until my brother and I graduated from high school, when it all changed. Our parents became the subject of endless mockery — by us, their adoring offspring. It was gentle mocking, but mocking nonetheless. Every foible, every tiny misstep was held up for ridicule. They were easy targets and pretty good sports. I'm not sure I have it in me to become the butt of my kids' jokes. Oy, I can see it now: 

"Remember how Mama lost her keys every morning?" — followed by exaggerated pantomimes of me tearing apart the house in an eternal quest for the elusive keys.

"Remember Mama's escalating rants in the car while schlepping us around?" — followed by shrill mimicry of me losing my mind about something ridiculous.

"Remember how Mama always corrected everybody's grammar? Like the time she whipped out her Sharpie and crossed out '10 items or less' and wrote '10 items or fewer' on the sign at the Jewel?" (OK, I don't apologize for that. Once an editor, always an editor.)

I woke up in a cold sweat. This is not fair. I'm not ready.

I am Mighty-Mama, in absolute control of your electronics and play dates. I have the power of grounding and time out. I know your most embarrassing secrets and, if necessary, I am not afraid to use them.

I am Mama. Thou Shalt Not Mock.

When Susan Bearman isn't having nightmares about her diminishing authority, she can be found writing at Two Kinds of People and The Animal Store Blog, as well as freelancing at www.bearman.us. Oh yeah, and Twittering @2KoP. This is an original Chicago Moms Blog post. 

18 is Not a Magic Number — CMB Post

This was originally posted on the now defunct Chicago Moms Blog.

My twins turned 18 last November and are seniors in high school. Since last spring break, my daughter has been researching and visiting colleges, completing applications, filing for financial aid and pacing the floors with worry and excitement over where she'll be going to school in the fall.

My son has been going to high school. He gets up every morning, does his routine and goes to class. He hears and sees his sister whirling dervishly around the house, and spouting words like "deadlines", "recommendations" and "essays". It has had no affect on him. When asked what he plans to do after graduation, his eyes kind of glaze over and he launches into a brief nondenial denial that he has pieced together from things he's overheard.

"I'm not quite sure yet, but I'll probably take a few community college classes, do some volunteer work and get some kind of part time job. I'm just not ready to think beyond that right now."

It's a reasonable statement, I suppose, except that he doesn't really understand what any of that would actually entail, and he has done nothing to find out more information.

I have been a nervous wreck about him, but getting one kid ready for college has taken a lot of energy, so mostly I've been working with the girl, fretting about the boy, and feeling guilty all around. And hyperventilating my way through sleepless nights. And yelling gently hinting things like: "You are not living in my house for the rest of your life," and "Playing video games is not a viable career choice."

Then, one day, I listened - really listened - to my son's press conference statement. Especially the last sound bite. "I'm just not ready to think beyond that right now." And I realized that 18 is not a magic number; it's just a number, just the next birthday in what we hope will be a long line of birthdays to come. And that, in and of itself, is a miracle.

Born at 24 weeks and just 1.5 pounds, we didn't really think he would see any birthdays. Both twins were significantly delayed. Just to put things in perspective, he was born November 17 and came home from the hospital on March 27; he walked at 23 months; he talked at 4.5 years old. He weighed just 27 pounds when he started kindergarten, and 47 pounds when he started middle school.

Now, he's 18. He has finally caught up physically. He is intellectually very bright, but has a short-term memory deficit, a sequencing disorder (part of his learning disabilities) and some ADD issues. He will be graduating with his sister and his peers in June. He is among the kindest people I have ever met.

This spring break, we are visiting Beacon College, the only accredited college offering BA and AA degrees for students with learning disabilities, ADHD and gifted LD. My mom heard about the school and sent him the link. I suggested that we could visit, but he went to the college resource center at school and he made the appointment for us to tour the campus. Will this be the right place for him? Who knows. Will he be ready to go in the fall, or even the spring? I doubt it.

Why I ever thought that 18 would be a magic number, that he would suddenly start to reach milestones on someone else's schedule instead of his own, is only proof that I'm the one still suffering from developmental delays. My son is right on schedule. So, what comes next? I know what we're doing for spring break. I'm just not ready to think beyond that right now.

When Susan isn't worried about developmental delays, student loans and sending her kids to college, she can be found writing at Two Kinds of People and on her freelance writing Website, www.bearman.us. This is an original Chicago Moms Blog post.

iPhones — New Help for Special Needs Kids — CMB

This post originally appeared on the now defunct Chicago Moms Blog.

Disclaimer — I do not now nor have I ever worked for Apple, and they haven't paid me in goods or dollars for this post (although I'm open to negotiation).

Last month, my twins turned 18. I'm still in deep denial over what is clearly a blip in the time-space continuum. I know for a fact that it was just a few days ago when we were huddled around their isolettes in the NICU, watching in awe as their tiny 24-week bodies struggled to survive. And now … well, I just can't go there yet.

We have been so blessed, so lucky. Their delays, while significant, were just that — delays. They are both fully-functioning, healthy, happy (adult?) human beings, enjoying their senior year in high school and starting to think about the future. My daughter has taken the wheel on her road to life and is well on her way to independence. Her brother, who has had more physical and learning issues, still has a way to go.

For their 18th birthday, we got them each iPhones. During such difficult economic times, it's reasonable to ask why would we spring for such a hot, trendy, extravagant gift as an iPhone. That, I can tell you in two words — assistive technology.

The lingering issues that continue to affect my son as a result of his extreme prematurity are:

• low tone/graphomotor issues — he explains it like this: "It's really hard for me to think and write at the same time."
• short-term memory deficit — he would explain it to you, if only he could remember. Seriously, one of his teachers once told me: "He seemed to understand. He repeated it back to me exactly." He does understand — he understands everything, he just can't remember once the cue is gone.
• sequencing disorder — trouble breaking down tasks into reasonable chunks and completing them in the right order in a reasonable amount of time.

I have long believed that my son was lucky to be born when he was — that technology would be his friend. I still believe that, but there have been some bumps along the way: an addiction to video games and losing three (count them, three) cell phones his freshman year. During the few days he managed to hold on to his cell phone, he never remembered to turn it on, so I couldn't reach him any way.

Then, last year, he used his birthday money to buy himself an iPod Nano. Miracle of miracles, he did not lose it. He kept it turned off during school, but remembered to turn it on after school so he could listen on his way home. About a month ago, we had a meeting with his assistive technology specialist at school. A long-time PC person, she recently got an iPhone and is tremendously excited about the potential it holds for many of her students.

Assistive technology runs the gamut from wheelchairs to customized computers that allow quadriplegics to communicate with eye blinks. The field is exploding, but much of it is hugely expensive. While the initial outlay for the iPhone (about $200 for the middle-range iPhone) isn't too bad, the $30 monthly bite per phone for the data package adds up fast. We learned, however, that unlike computer programs, iPhone apps are pretty inexpensive (often free), and there are new ones every day. While there are many PDAs out there, the iPhone offered some distinct advantages, first and foremost the fact that it would be my son's new iPod, so we were pretty sure he would hold on to it.

It's fairly obvious how the calendar and organizational apps could help someone with short-term memory problems, but the iPhone apps offer much more than simple datebook functionality. For example, there's an app called VoCal that allows my son to record a voice message on his phone, which then translates into a written calendar reminder.

And it works! Our first iPhone success came after a missed orthodontist appointment one Friday. That night, he added the orthodontist's phone number to his contacts and entered a voice reminder into his phone. That entry sent him an alert after school on Monday to call the orthodontist for a new appointment. My son gets out of school at 3:35. By the time I called him at 3:45, he had already made the new appointment and entered it onto the calendar, which automatically sent an email to me so I could put it on the family calendar. That may sound like a small thing, but it was one giant leap toward independence for him and peace of mind for me.

That ability to recognize voice commands is a huge advantage for a kid with graphomotor issues. The sensitive microphone allows him to use his voice in a variety of ways, bypassing the need to write (and even draw). For example, there is an app called Omni Note. Say his horticulture teacher draws a picture of a plant cell on the board and tells the class to copy it for a quiz on Monday. This would be extremely difficult for my son to do, and the end result would not look anything like the original.

With the Omni Note app on the iPhone, my son could take a picture of the diagram, draw directly on that picture, add a typed and/or voice message to the picture and send it immediately to his computer at home so he could study it over the weekend. How cool is that?

His teachers are also on board, allowing him to keep his iPhone out and on throughout the day. He doesn't text and we haven't given out his phone number, so there is no risk of interruption during class. As part of his sequencing disorder, he has trouble organizing his thoughts into a coherent structure in school papers. One of his English teachers had the brilliant idea of having him research new apps and, as an assignment for class, write out the directions on how to use it (a great sequencing and organizational exercise), and include a paragraph or two about how he, personally, is using the app (a good way to practice his analytical skills).

Right now, our district would have provided him with an iPod Touch, which has some, but not nearly all the functions of the iPhone. The integrated microphone of the iPhone is a big part of the functionality my son needs to make this tool work for him, so we opted to make a family investment.

I understand that this is new technology, which is often scary and expensive for schools to contemplate, but I urge educators to jump on this bandwagon early. The potential of the iPhone for special needs students is vast and untapped, and this generation of students is already immersed in technology. This seems to me to represent the best that technology has to offer — a chance for students to overcome (even bypass) their disabilities and get right to the good stuff — the learning.

How did we justify making the same investment for our daughter? We told her it was because it would be a good tool for her at college next year, and it will be, but really, this is just one of those times when she should be darn grateful for her twin brother.

This is an original Chicago Moms Blog post. When Susan isn't busy trying to figure out how such a young mom can have such old children, she can be found writing at Two Kinds of People and The Animal Store Blog.

More Than Meets the Eye

"I was walking down the street wearing glasses

 when the prescription ran out."

— Steven Wright

There are two kinds of people in the world: those who wear corrective lenses and those who don't.

If you don't need glasses, count your blessings … for now. Presbyopia catches up to everyone. 

In our family of eight, five of us wear corrective lenses, which puts us right about in line with the national average (78% of American adults wear some kind of vision correction, but not all our family members are adults yet). This takes quite a financial toll, since we don't have any kind of vision insurance and the average cost for a pair of prescription lenses runs between $50 and $350 (depending on the prescription). 

On our first tropical vacation together, my husband and I were astounded to discover that we needed an entire suitcase just for our eye wear: two sets of contact lenses (plus all the requisite paraphernalia), two pairs of prescription glasses, two pairs of sunglasses, two pairs of prescription sunglasses and, because we were going scuba diving, two diving masks fitted with corrective lenses. Thankfully, this was in the days before airlines charged by the bag (and when we could still afford to take tropical vacations).

I didn't get glasses until I turned 21 and I was sure I was going blind, since my prescription changed dramatically every three or four months for several years. It turns out my eyes were just going through delayed adolescence. Generally speaking, people either get glasses before or during puberty, or not until aging starts to wear away the elasticity of the eye, resulting in the aforementioned presbyopia and the need for reading glasses — usually around age 40. 

I struggled with contacts for years, due in part to an astigmatism (an abnormally-shaped cornea) as well as exophthalmos (slightly bulging eyes often associated with Graves Disease, which  sounds much worse than it is). Now, lucky me, in addition to the vision correction I need for my inherited myopia (nearsightedness — thanks mom), I also need reading glasses.

I used to think those half-glasses were kind of cool, and would pull my regular glasses down to the end of my nose to see how I'd look. Not bad, even now. The problem is that it's one more thing to schelp and track. If I wear my contacts, which gives me the best peripheral vision, then I need to carry the dumb reading glasses with me, and that's new, so I often forget them. 

When I was a kid, my mom was so nearsighted that she couldn't even answer the phone without her glasses. "I can't hear you," she'd say, "let me put my glasses on." So, it was bit disconcerting a few years ago when she had lenses implanted after cataract surgery and started walking around without glasses for the first time in my life. I kept offering to find her glasses for her. But, alas, it didn't last. Her distance vision is fine, but she can't stand not being able to read, so she got bifocals that are clear on the top and reading strength on the bottom. I guess old habits are hard to break.

My oldest boy claims he will never wear contact lenses. The idea of sticking something in his eye all the time totally freaks him out. As preemie babies, my twins suffered retinopathy of prematurity (ROP), a condition where the blood vessels of the eye develop abnormally and can, potentially, lead to blindness. Despite this ominous beginning, both cases of ROP resolved spontaneously. My son needs glasses as a result of his genetics (both his dad and I contributed to these bum genes), but my daughter won't need glasses until, well, she's my age now.

The first eyeglasses didn't make an appearance until the late 1200s in Italy. Even though corrective lenses are a mild pain and seriously expensive, I'm grateful to live in a day and age where people with less than 20/20 vision can live full, productive lives (as opposed to being eaten by predators that we can't see). 

I admire people who embrace their imperfect vision as a chance to make a fashion statement. I have several friends who collect prescription glasses as wardrobe accessories, matching the frame to the outfit or the mood. Of course, that's another way vision problems betray you — in photos, where your frames will forever date you in time. Why is it that no matter how cool your frames are when you buy them, five or ten years later they look completely ridiculous in the family photo album?

Despite being temporarily unsettled by my recent need for reading glasses, I came to terms with my less than perfect vision years ago. So, why this treatise, you ask? I'll tell you. Today was chilly, so I was taking a hot bath, as I am wont to do on cold days. I was, of course, reading in tub, which is what you do when you take a hot bath on a cold day, when all of a sudden one of my contact lenses popped out from behind my reading glasses and plinked into the water. This is not a good thing. It's not easy to locate a contact lens in a tub full of water with only one good eye. Was it floating? Did it sink to the bottom? Was it stuck on me or the side of the tub or the soap? 

I eventually found the damned thing and so I have some advice: if you are going to take a hot bath on a cold day and read your book with your contacts in and your reading glasses on, be sure to blink — often — so your eyes don't get too dry and your lens won't pop out.

Have you experienced an embarrassing lens loss, or have some other vision-related horror story to share? Just click here. Misery loves company.

By the way, don't take vision correction for granted. Donate your glasses with old prescriptions or dated frames, and share the gift of sight.

Finally, I'm pretty certain my latest Chicago Moms Blog post will stir up a little controversy with avid bike riders. Let me know what you think.

Photo credit: Rubber Duck in Glasses by SunShineLia-Stock via deviantart.com

Wee Windy City Guest Post

There are two kinds of people in the world: those who have done guest posts on other blogs and those who have not. Check out my first guest post on Wee Windy City, part of Chicago Now.

The Wee Windy City blog was started by a fellow author from the Chicago Moms Blog, Caitlin Giles. In addition to being a brave mother of three raising her children in the city, Caitlin is a wonderful writer (check out her blog, A Hen and Two Three Chicks). In fact, hers was the first "mommy blog" ever recommended to me.

In addition to her blog writing, Caitlin is a frequent contributor to Chicago Parent Magazine and other publications, such as Mindful Metropolis. Her goal at Wee Windy City is to help other families find "the best family friendly activities and destinations in and around Chicago."

As I prepared my guest post, I marveled at how the Internet has changed parenting. Even when my twins were young (not that long ago), parenting small children could be a very isolating experience. One of the best things that ever happened to me as a parent was when my neighbor dragged me to a Mothers of Multiples (MOMs) meeting— a support group for mothers raising twins, triplets or higher order multiples. My preemie babies were still in the hospital, being cared for by many dedicated professionals, but not by their mother. The women in my MOMs group made me feel like a real mom for the first time.

If I were starting that journey today, I could connect with others moms just like me on the Web in a thousand different ways. Just on Facebook alone, there are 117 groups for parents of preemies, dozens and dozens for parents of twins, and 79 groups relating to high risk pregnancies. That doesn't begin to touch the number of articles, Websites and blogs on these and similar issues. I could even start a blog or Twitter about the experience, keeping friends and family up to date without having to rely on the phone tree we used 17 years ago.

As a consumer, I'm fascinated (my husband says addicted) to the ways the Web is unfolding before me. As a writer, I know I must become evermore Internet savvy to remain viable, but I'm torn. On the one hand, people argue that posting and distributing your work for free undermines the value, the skill, the experience and the craft that a professional writer brings to his or her writing. The online version of the American Heritage Dictionary defines "professional" as:

"engaging in a given activity as a 

source of livelihood or as a career: 

a professional writer."

So, as a writer, if you are giving away your work for free, are you in fact a professional?

On the other hand, many others argue that to become a published author, you must build your writer's platform, and that some of the key components of this platform are: starting a blog, creating a Website, blogging or writing for established Websites, and actively participating in online communities and forums. Almost all of this means writing for free.

What's a writer to do? Or a photographer? Or a musician? In fact, what is any artist whose work can be distributed over the Internet (and potentially plagiarized or pirated) to do?

Here's what I know: I don't know. And I know something else: nobody else knows either. Conventional writing — be it for newspapers, magazines, books, or any other traditional format — is in complete flux (which is to say, leaking money faster than a rotten dinghy leaks water). 

And in just the short time (18 months or so) that I've been writing seriously on the Web, things have changed and grown, expanded and contracted, and changed and grown again right before my eyes. 

Writing on the Internet reminds me of a condition suffered by my twins as a result of their premature birth. Retinopathy of Prematurity (ROP, sometimes called retrolental fibroplasia), is a potentially blinding eye disorder found most often in preemies weighing less than 3 pounds. In these very small babies, the blood vessels of the eye can stop developing normally, so the retina sends out growth signals, sometimes causing the development of new, abnormal vessels, which can lead to bleeding, scarring and, potentially, retinal detachment resulting in severe vision impairment or even blindness.

There are treatments for ROP, such as laser surgery or cryotherapy, but the curious thing about ROP is that it can resolve on its own, often with as good or better results than with intervention. Our twins were lucky. Although their ROP progressed to grade 3+, both cases resolved without treatment. 

To me, writing on the Internet is growing in that same frenzied, haphazard, potentially risky way as do blood vessels in ROP, and I believe there will be victims who don't have successful outcomes. But the curious thing about the Web is that I'm not sure we will get any better results if we intervene than if we just wait and let technology take its course. 

For now, you can continue to read me, for free, here at Two Kinds of People and on the Chicago Moms Blog, as well as on a few (strategically chosen) guest posts. If you like what you read and want to pay me cash money for all this talented word smithing, email me here. For the rest of you, you can pay me back by leaving a comment. A little Digg or a Stumble wouldn't hurt, either.

Most Improved Mom — CMB Post

This post originally appeared on the now defunct Chicago Moms Blog.

It's an act of hubris to brag about our children, but as moms, we're all guilty. After all, those accomplishments we love to enumerate — the straight As, the home runs, the chess standings — they really belong to our children. It's hard, though, to keep our pride from bubbling out of our hearts and through our lips, even when we are doing it out of love and not a vicarious sense of competition.

In Hollywood, the award season kicks off with the Golden Globes in January, but every mom knows that kid awards are in May. In this two-week period alone, I will attend at least five ceremonies for my twins, who are high school juniors. (Please note: the following list does not constitute bragging, as I'm trying to make a point here.) My daughter was inducted into the National Honor Society, will be recognized as an outstanding student by three of her teachers (Anatomy, Applied Science and English), and will receive a few other honors, as well. Her twin brother received a "most improved" award in history.

I'm proud of all my children, but these awards for these two children are particularly meaningful because their futures were so precarious when they were born 16 weeks prematurely. At that time, we were hoping they would breathe on their own, so scholastic achievements weren't even on our radar. As I have proudly touted their most recent accomplishments to friends, grandparents and other relatives, it's been hard not to notice the imbalance of accolades. I hear myself saying "she did this" and "she got that" and … she, she, she. Oh, yeah, and he got an award, too — most improved.

A friend recently asked how my son felt about all this attention being bestowed upon his sister. Frankly, it's hard to say, because this is a boy who doesn't register accomplishments (his or anyone else's). This phenomenon is actually part of his set of learning disabilities and reflects an inability to connect planning and effort to achievement, as well as difficulty reading social cues.

This is the second time my son has been recognized as "most improved". The first was after an extraordinarily difficult transition to high school. When you ask him how he feels about these awards, he says "I'm happy," and then wryly notes that it's not hard to be most improved when you start at the bottom — an interesting observation from someone who is supposedly "socially delayed". When you tell him you are proud of him, he says "Thank you." When you ask how he feels about his sister's awards, he says "I'm happy for her."

As his history teacher presented my son with his award, she made special note of his kindness, his upbeat attitude and his positive contribution to the atmosphere of the class. I wish I could give her an award for recognizing these as accomplishments.

"Most improved" is a stunning accomplishment, especially when you improve upon most improved. My goal over the next year is to follow in my son's footsteps to become eligible for the Most Improved Mom Award — a mom who devotes as much of her braggadocio to her children's behavior and character as she does to the more coveted awards and public recognitions. I will strive to instill in my son the same sense of pride I feel for the person he is. It's clear I have a long way to go, but with a little more effort and self awareness, I may have a fighting chance.

This is an original Chicago Moms Blog Post. When Susan isn't boasting about her brilliant, beautiful, talented children, she can be found blogging at Two Kinds of People and The Animal Store Blog.

Life's Not a Paragraph

There are two kinds of people in the world: those who have already experienced profound loss and those who will.

I've been lucky so far in this life. My losses have been quiet goodbyes, gentle by most standards, the soft leavings of old age, cushioned by the generations between them and me. Secondhand losses. 

After my grandfather died, and my grandmother was diagnosed with cancer, I asked her if she was afraid of death. "Oh, honey," she said. "At my age, death is almost a friend. It's a story I read about every day in the paper."

Death is not always a friend — sometimes it is a thief, robbing us of our dearest treasures. 

Earlier this month, I wrote about my greatest fear — a recurring nightmare I have that one of my children has died. I knew even as I wrote it that I was trampling on someone else's grief. Tragically, unbelievably, one of my fellow bloggers from the Silicon Valley Moms Group is living this nightmare right now, having lost her baby just two days after I posted my nightmares.

Madeline Alice Spohr 

(November 11, 2007 - April 7, 2009)

I've never met Maddie's family, but so much of her story is familiar — difficult conception and pregnancy, traumatic, premature birth, eating issues, growing issues — but more importantly:

joy,

fun, 

giggles, 

first teeth, 

first baths,

FIRSTS. 

Her story may not be a long one, but it is a story worth knowing.

This loss, like so many others, was not a quiet one. When a child dies, we roar with the pain, the grief, the missed opportunities of a story barely started. 

A writing friend, Cindy Fey, wrote beautifully about the sudden loss of her dear friend, a peer, a cohort, a man who was walking this life at the same time as her husband when his footsteps suddenly stopped. His premature death left a novella, not a full novel perhaps, but a story worth knowing. 

Death is not always a friend — sometimes it is the harshest of spotlights, the cruelest of mirrors, shining stark light on our own mortality, leaving us gasping and keening.

Another dear friend has experienced more deaths in her family than anyone I know, whittling her immediate family down to a precious few, leaving her clear-eyed and unsentimental. Her losses are a series of short-stories and tall tales, an epic saga — a story worth knowing.

Death is not always a friend — sometimes it's a relentless clock, ticking off the lives of those we know and love as surely as it counts off the seconds of our individual lives — a never-ending death knell.

I know I am lucky — death has brushed by so closely that the hairs on the back of my neck still rise and tremble at the memory. In grateful acknowledgement of those near misses, in tribute to Maddie and Eric and Jill's family, and in celebration of April as National Poetry Month, let's remember that no life is just a paragraph, but a full story worth telling:

since feeling is first

by ee cummings

since feeling is first

who pays any attention

to the syntax of things

will never wholly kiss you;

wholly to be a fool

while Spring is in the world

my blood approves,

and kisses are a better fate

than wisdom

lady i swear by all the flowers. Don't cry

- the best gesture of my brain is less than

your eyelids' flutter which says

we are for each other: then

laugh, leaning back in my arms

for life's not a paragraph

and death i think is no parenthesis

Please click here to share a thought, a poem or a comment.

Tapping into the Network — CMB Post

This was originally posted on the now defunct Chicago Moms Blog.

"Call it a clan, call it a network, 

call it a tribe, call it a family.

Whatever you call it, whoever you are, 

you need one."

— Jane Howard, Families (1978)

Often, woman have been accused (and guilty) of being catty, backstabbing Mean Girls. I challenge you to find a girl or woman who hasn't suffered the slings and arrows of a group of nasty wenches. BC (before children), I steered clear of girl groups. I had a few close friends I met between junior high and college, and we are still friends today, but I never really joined much of anything. Blame my mother, she wasn't a joiner, either.

When my twins were born at 24 weeks, I was completely overwhelmed. At just a pound and a half, they spent more than five months in the hospital being watched over every minute of the day by literally hundreds of talented, caring professionals. At first, it was difficult to find my place. I couldn't hold them, I couldn't nurse them, I couldn't care for them. I felt pretty lost, and certainly did not feel like a mom, whatever that was supposed to feel like.

About a month or so after they were born, a neighbor came by — a women with three kids, including a set of year-old twins. She invited me to come with her to a Mothers of Multiples (MOMs) meeting. I gave her a bunch of excuses, ending with the fact that I wasn't really a mother to them yet. She looked at me for a minute and then said: "You're their mother. I'll pick you up at 7:15."

I will be forever grateful to that woman for reaching out to me and dragging me to my first MOMs meeting. It changed my life — as a mother and as a woman. For the first time, I was plugged in to the powerful network that is motherhood.

Our MOMs group met once a month in each others' homes and usually had a terrific speaker. To this day, I pull from the parenting advice those speakers offered. But, as valuable as the speakers were, it was the camaraderie of the women in that group that saved my life.

Many of the new moms I met at that time approached motherhood like a competition, bringing the full force of their expensive educations and high-level jobs to the table of motherhood. These women competed about everything: whose child spoke first, whose was potty trained first, what preschool they got into. It was overwhelming, not to mention ridiculous, and even if I had wanted to participate, my twins were not in the running. Boasts of "Well, they're both still breathing this week," got me nothing but pity at a time when I thought breathing was the greatest accomplishment in the world.

The women in my MOMs group were a whole different story. They were so grateful if they got to shower before five in the afternoon, that they didn't have time for one-up-womanship. When you are trying to nurse two babies at once or chasing two toddlers around the house or keeping up with ever-growing mountains of laundry, all bets are off. You learn pretty quickly that it's survival of the fittest and that you better hone your sense of humor. These moms just got it.

To be fair, most of the nastiness of competitive motherhood evaporated with the births of second children. Over the years, I have joined a number of other groups; some have provided temporary connections to get me through a certain phase of life, and some have provided life-long friendships. My network has continued to expand with book clubs, writing groups, PTAs and any number of support groups, including those for families of children with special needs, families with preemies, families with curly-blond-haired math geeks — OK, I made that last one up, but you get my point. Today, the Internet provides even more possibilities for tapping into the network — for finding and hooking up with people from all over the world who get it.

Along the way, I have met women who understand the challenges of infertility, who know better than to say things like: "Tom and I have decided we want a June baby." I have found women who know the difference between morning sickness and hyperemesis gravidarum (puking nonstop during pregnancy) — they get it. I have leaned on women who understand that even though I love my children more than I can ever say, today they are making me totally and completely crazy. I have had moms save my neck when I was stuck in traffic and couldn't make preschool pickup in time (or Hebrew school pick up, or chess club pick up, or … ).

I've saved my share of necks, too. It is in the Mom Code of Ethics that if you can do something for another mom, even a virtual stranger, then you do it. You pay it forward, not so that particular person pays you back, but because you know that you'll need help someday soon. It's like having a healthy savings account in the Bank of Mom.

Just last week, I spent some time on the phone with a mom who is beginning to have her son tested for learning disabilities. My special needs son is now 17, and we've been on this path for a long time. I was happy to share my experience, making another deposit into the Bank of Mom. Today, I reached out by email to another mom whose special needs son is further along the path than mine. I've never met this woman, but she is happy to share her experiences with me as I make my withdrawal from the Bank of Mom.

To all the women who have offered me love, support, a shoulder to cry on, a kick in the pants, or a girly martini, I say thanks for being there and thanks for getting it. To those of you just starting your journey, I strongly encourage you to tap into the network.

This is an original Chicago Moms Blog post. When Susan isn't going to support group meetings or balancing her account at the Bank of Mom, she can be found blogging at Two Kinds of People and The Animal Store Blog.

Help, My Son is Morphing into an Avatar — CMB Post

This was originally posted on the now defunct Chicago Moms Blog.

There is something familiar about the figure slouched in the office chair, face aglow in the eerie light of the monitor. I can still see traces of that sweet little boy who used to talk my ear off, but it's hard to recognize him, since I only ever see him in profile anymore, and his earphones tether him to his computer. There is an occasional deep-voiced giggle over the latest Dane Cook video, but otherwise just the quiet, rhythmic tap dance of keyboard and mouse clicks.

I know I'm not the only mother who fears losing her teenage son to screens, but I'm kept awake at night with visions of him actually falling into his monitor and becoming an avatar. If I look closely, I swear I can see the edges of his face turning into thick dark lines, while his visage flattens into two dimensions in Web-ready colors. The sad thing is, I think this is a fate he would welcome.

My son, now 17, was born 16 weeks prematurely. While he is doing great given his desperate prognosis at birth, he struggles with ADD, a short-term memory deficit, delayed social skills and a few other learning disabilities. It's ironic to me that a child who has difficulty concentrating can become utterly engrossed in the artificial world of video games, but this is a common scenario. According to Larry Silver, MD, video games hold particular appeal to kids and teens with ADD: "A child who's bothered by distractibilty in the real world may be capable of intense focus, or hyperfocus, while playing," says Silver. "For children who struggle with social skills, or lack the skills to play team sports, these games entertain and level the playing field. Computer games are emotionally safe."

That's my son in a nutshell. So, what's a mom to do? We recognized early on that technology was this particular child's friend. With poor graphomotor skills, he needs the computer to communicate his thoughts. His handwriting is large and difficult to read and we have discovered over the years that he actually produces more writing, both in terms of quantity and quality, when he types. With poor organizational skills, the capacity to email work back and forth between home and school has greatly improved his ability to complete assignments and turn work in on time.

But it is his poor executive functioning abilities, those areas of the brain that allow you to monitor yourself in goal-directed behavior, that stymie our efforts to help him use the computer to its greatest advantage while setting reasonable limits on screen time. We've tried everything:

We moved his computer into a public space in our house. It used to be in his bedroom and we never saw him. He'd hole up there, with the door closed and lights out, clicking away all hours of the day and night. Moving his computer into the dining room has allowed us to monitor the time he spends online, see exactly what he is doing and get his attention when we need him to do something else.

We have tried timers over the years for a variety of purposes, with little or no success. The best timers are programmable ones, where we set his computer with a password that only allows him access for certain times during the day. This works fairly well, since there is no arguing about "five more minutes" or "wait until I get to the next level," but with a high schooler who has legitimate school-related computer needs, the passwords can get in the way in a busy household. We are working on a system that will allow him access to some Websites all the time, while limiting access to other sites except during proscribed hours.

• We have tried to use screens as a carrot, rather than always chasing them with a stick. This, too, has had limited success with a child who has no sense of time and no goal-setting abilities. The first consequence is always loss of screen time; the first reward is always extra screen time. This is the only reward or punishment that has any meaning for him.
• Screen time is measured in aggregate: computer plus video games plus television equals your total allotment of screen time. It used to be that we would shut him down on one screen and he would simply move on to another.
• No handhelds allowed. It has been nearly impossible to monitor and limit this child's screen time when he is plugged in to a wall socket. I cannot even imagine how difficult it would be to get his attention if he was allowed to carry a mini-screen around with him all the time.
• We have provided plenty of opportunities for him to interact with other human beings, including an agonizing year of Cub Scouts, several successful years of sleep-away summer camp, day camps, swimming lessons, music lessons and lots of family activities. It is almost always a struggle to get him to participate, but he almost always has a good time when he does. We've learned not to ask him if he wants to do something — we just tell him what he is going to do.

After all the stress, tears, punishments and rewards, my question is this: should we be limiting his screen time at all? What is the benefit of setting screen limits at this stage in his life? As long as he gets his homework done and helps out when asked, is it important to continue to restrict the time he spends at the computer? True, if left to his own devices he would probably always choose "virtual" over "reality", but when we insist, he does participate in other activities.

Chances are that any work he pursues in life will involve computers. While it's true that he does play a lot of video games, he also uses his computer for a wide variety of purposes. For example, he recently joined a graphic arts chat forum. This is the kind of social networking he never would have done in the "real" world, even though there is probably a graphic arts club at his high school. To join would require finding out where and when the meetings were held, signing up, remembering to go, and putting himself into a difficult social situation. It just wouldn't happen.

He also subscribes to several news feeds and, consequently, is pretty up on current events. He reads (and I believe sometimes even writes) fan fiction. Why is it any more valid for him to read newspapers or books than online news sources and fiction Websites?

Here are my moral dilemmas: Why should I limit his computer time to, say, an hour a day when I certainly spend more time than that on my computer? If I am constantly forcing him to do something else — anything else — besides computers, will he ever really enjoy those things? Can you, or should you, force someone into social situations that do not appeal to him?

Why should I limit his computer time when I don't limit his twin sister? This is a particularly difficult question for me, as she, too, spends a lot of time online, multitasking away at a lighting pace — IM-ing with six or eight of her closest friends, downloading music, researching her history paper, creating graphic collages and shopping for new boots — all at the same time. But, and this is a big but, she has a big life away from her computer, and he does not. There is also the fact that she spends little or no time playing video games, and that somehow seems to make her time online better or more productive. When I look at that in the clear light of day, I can see the double standard.

Finally, this teenage boy has two younger brothers who have just as much interest in gaming as he does. I have to be careful with any precedent I set, for I will have to live with the consequences of that decision for many years to come.

This is an original Chicago Moms Blog post. When Susan isn't busy being a computer cop, she also writes about Two Kinds of People, as well as about pets on The Animal Store Blog.

Photo credit: "Slaves" by Cleopapu via flickr.com.

Golden Birthday — CMB Post

Originally posted on the now defunct Chicago Moms Blog.

"They look like space aliens," said my 12-year-old stepson. And they did. Born at 24 and 3/7ths weeks gestation, my twins spent five months on the neonatal intensive care unit, with tubes and wires attached to every part of their little bodies. The ventilators huffed and the monitors blinked and bleated day and night. Nurses shaved their plum-sized heads in a quest to find viable IV sites, and their little toes glowed red from the pulse oximeter that measured their blood oxygen levels, just the way ET's finger glowed.

On their birth day, my son weighed in at 1 lb. 8.5 oz. and my daughter was 1 lb. 10 oz. They were not the earliest preemies ever born, nor the smallest — world records I'm happy we do not hold. Chances are they won't make it through the night, we were told. Chances are they will be blind. Chances are they will be deaf or profoundly hearing impaired. Chances are they will have cerebral palsy, severe learning disabilities, asthma, allergies and chronic lung problems. Chances are they will have to be hospitalized on a regular basis.

But chances were with us and this week we celebrate their "golden" or "star" birthday, when they turn 17 on the 17th, in perfect health as juniors in high school. It was a long haul. They spent nearly a year on oxygen and reached every milestone months (in some cases years) after their peers, but they did reach them. In honor of their birthday, I would like to share 17 of the many gifts they have given to me:

1. Good things come in small packages. These babies were literally gifts, their conception the result of a fertility treatment called gamete intrafallopian transfer (or GIFT).

2. Live in the moment. Until I was hospitalized 11 days before their birth, I wished my life away, always hungry for the next thing: growing up, going away to college, moving to a new city, getting married, buying a house, getting pregnant. Because we didn't know what the next minute would bring as we tried to stave off their premature birth, I saw for the first time the value of living in the now.

3. Be grateful for the simple things. Breathing is beautiful and not to be taken for granted. So is peeing, which I learned as we prayed for my baby boy to urinate as proof that his kidneys were not shutting down.

4. Never wake a sleeping baby (thanks mom). When my daughter came home on March 10th, nearly five months after she was born, she weighed four pounds. I was told she would act like a newborn, waking every two hours to eat. She didn't. That first night home, I watched her sleep. When she didn't wake at the two-hour mark, I put a mirror by her mouth to make sure she was still breathing, even though she was on oxygen and electronic monitors. I stared at her for two and a half more hours before she finally woke. She was tired; people had been poking and prodding her for months. From that night on, she slept six hours at a stretch, just like a real baby.

5. Everyone is different. These twins who shared so much were completely different right from the start. I learned that comparing them to each other or anyone else was pointless. I also learned to stop comparing myself to others.

6. We all learn at our own pace. The best piece of advice I got when they were born was to ditch my copy of the baby bible What to Expect the First Year. Everything that happened that year was unexpected. Everything that has happened since has been unexpected. As long as we are making progress, it's all good.

7. Boys and girls are different. It's not nurture, it's nature. I did not have the time or energy to give these boy/girl twins different toys or different kinds of attention. Girls mature faster, boys are noisier and more physical. Are these generalizations? Sure, but they're generally true.

8. Everyone has strengths and weaknesses. My son has struggled mightily in many ways, but you would never know it to meet him. He has a short-term memory deficit, which makes learning by rote very difficult, as well as finding things, like your homework or your socks. On the other hand, each day is a brand new adventure, and he never suffers from emotional hangovers. We could all use a little more of that.

9. You are what you think you are. My son was diagnosed as small for gestational age for most of his life. Until he was 14 and had been on growth hormone for four years, he never even reached the lowest percentile on the growth charts. He was always the smallest kid in the class, but when you asked him how big he was compared to his classmates, he would say "Oh, about in the middle."

10. Trust yourself. We have had the benefit of hundreds of talented, dedicated professionals who have helped bring these children to where they are today. But I am their mom, and I know them better than anyone. To become an effective advocate for them, I had to learn to trust myself.

11. Ask for help. As the saying goes, it takes a village. A neighbor of mine took me to a Mothers of Multiples support group meeting even before the babies came home from the hospital. Those women saved my life. I also found therapists when we needed them, as well as a great pediatrician, not to mention all the times I leaned on my parents, other family and friends.

12. This too shall pass — and faster than you think. When they were little, it seemed that we'd be mired in diapers forever; we weren't. My son was finally potty trained at four and a half. It seemed like they would never talk; they did — at four. The problem with "this too shall pass" is that it applies to the sweet times, as well as the sour ones, so pay attention or you might miss something good.

13. Read aloud together. They are 17 and we still read together — not every night, but often enough. I have loved this time together (except the Go, Dog. Go! phase).

14. Never give up. These tiny, frail, vulnerable babies (fetuses, really) are the strongest people I have ever met. They survived more challenges in their first year of life than most of us do in a lifetime: ventilators, lung damage, jaundice, retinopathy of prematurity, heart surgery, and invasive infections, just to name a few. They fought hard to be here.

15. Don't listen to the naysayers. I can't tell you how many people told us it would have been better if they had never been born. I was terrified at first, sad that I had not carried them to term and that their lives were going to be harder (at least in the beginning) than it should have been. But we are so lucky they were born at a time and in a place where they had a real chance to survive and, given that chance, they have thrived.

16. Celebrate. Many loving, well-meaning people had no idea how to react when they were born. We received no gifts or cards or flowers until they came home. People were afraid they were going to die. My mother handled most of the phone calls, conveying to everyone that we were celebrating. Whether they lived 90 hours or 90 years, this was the only life they would ever have. We're still celebrating.

17. It goes by fast. These children were babies for a long time, much longer than most, and yet here we are, on the edge of 17, that dividing line between childhood and adulthood. How did this happen? I swear I was paying attention.

So, my babies, Happy Birthday! And thank you.

This is an original Chicago Moms Blog post. When Susan is not sobbing over baby pictures, she can be found writing at Two Kinds of People and The Animal Store Blog.