I just sent some information about early intervention to a family whose little boy has been newly diagnosed with cortical dysplasia. So tonight I’m thinking of Lauro, a child on my caseload two years ago, who had the same diagnosis. The cortical dysplasia (neurologic disorder causing seizures) was the least of Lauro’s troubles. He was a micro preemie, born around 25 weeks gestation (if memory serves) with a birth weight of less than 1200 grams. By the time he came to me he was already 15 months old and in relative good health: he had bilateral hearing loss, so he needed to wear hearing aids at all times; he had sleep apnea, so he needed to be hooked up to a monitor any time he slept; he needed oxygen, although they were trying to reduce the amount; and with medication his seizures were down to only five to seven per day. Smooth sailing.

When I received the referral from the hospital and tried to make contact with the family, I found that the only phone number we had was disconnected. I sent a letter to the home and asked that they try to reach me, but no one did. I visited and found no one at home. At this point I should have closed the case, but I just kept going back whenever I was in the neighborhood and one day, I found them!

This family was already on the edge. The mother (let’s call her Maria) was only 20 and she had three children: a four year old in Mexico, Lauro, and Gabriel, who was eight days old when I met them. They shared the apartment with another couple who also had a little one: a girl whose name I don’t remember and who was almost two. After I explained our program, Maria asked for my help in filling out a form for Lauro’s social security disability benefits. It was a developmental questionnaire that asked fairly simple things about Lauro’s current abilities: when he started smiling, what sounds he was making, how much milk he was drinking and how often….that sort of thing. The scary thing was that Maria didn’t seem to know any of the answers.

It was hard to work with this family as they could only keep a cell phone turned on for about one week out of the month, so most conversations had to happen in person. I started visiting them at night so that I had a better chance to find them at home. Lauro started receiving once weekly visits from a special education teacher and twice monthly visits from a physical therapist (our program is home-based). But Maria kept missing appointments. With us, with Lauro’s specialists at the hospital. She had missed his RSV shots (preemies are particularly susceptible during flu season).

Worse yet, I got a call from the apnea clinic: the script from the monitor Lauro was supposed to use anytime he slept showed that the machine hadn’t been turned on in a month. Didn’t Maria realize that he could stop breathing at any time and she would never know?

As a team, her providers and I poured tons of time to make sure Lauro would get the best shot at life. We taught Maria basic life skills, helped her keep appointments, found her counseling when we realized she was suffering from post partum depression, tried to convince her to move out when we realized she was a victim of domestic violence, helped her apply for food stamps and other public assistance, and a myriad of other things. She was so young and so disoriented that I think all of us felt motherly toward her.

Slowly, Maria began to accept more responsibility. She learned how to keep a calendar and became more consistent about being home for her therapy appointments with our program. She started keeping all important documents in a binder we gave her. She told us she was using the apnea monitor and oxygen as she was supposed to. Maria even started selling phone cards from home so she could have some cash.

But our real joy came from Lauro. Lauro was making visible progress week to week, which is so rare! Most kids have a hard time adjusting to the hearing aids and fuss to take them out. Not Lauro! It was as if he understood that the aids were his entry into the world. He started cooing and babbling within weeks of getting his hearing aids. He enjoyed all of the toys the special educator brought, was always eager to play with her, and learned quickly. Even his PT sessions went well (for the most part), and soon he was rolling over all by himself and bearing weight on his legs when standing. We had started getting information from the neurologist about possible surgery to control his seizures.

He was almost sitting independently when he died. From a cold.

First Lauro’s cousin (the other little girl who lived in the apartment) got sick. Then Gabriel, Lauro’s brother. On Thursday, Lauro fell ill. By Friday morning, he was dead. When he got sick, he started vomiting; then he got a fever (Maria never knew how high since she didn’t have a thermometer in the house); then he got diarrhea. Because he was crying all night, Maria took off his oxygen so she could hold him in her arms as she paced around the room, hoping that would soothe him. It worked, she thought, because by around 5 AM, he had stopped crying and was finally asleep. She didn’t dare place him on oxygen again because she feared he’d awaken and he was sick….he needed the rest. She made plans to take him to the pediatrician’s office in the morning. But not until after his therapy session at 9. After all, how many times had we told her how important it was for her not to miss these appointments with us?

By the time the educator from our program arrived at her house Friday morning, Lauro’s lips were blue and he was unresponsive. She called 911 and began CPR. He was declared dead at the hospital a few minutes after the ambulance arrived with him. And there was Gabriel to worry about. When Maria mentioned that he, too, was ill, they worried that Lauro had had meningitis. Another ambulance was dispatched to the home and Gabriel was taken to Childrens Hospital in DC where they were equipped to do the necessary testing. Maria had to leave the body of her dead child at the neighborhood hospital so that she could go be with her other sick child who she now feared might die too.

I met her there and she was more bewildered than grieving. No one had explained to her why Lauro had died. No one had said anything about how long it would take to figure out if Gabriel might be next. Her world had been destroyed in less than 12 hours. It took six days for tests to reveal that Gabriel was fine and he could be released from the hospital; there was no meningitis. Lauro’s death was the result of a bad cold and some poor choices. The hardest thing I’ve ever had to do in my life was explain to Maria why Lauro had died. I’ll never forget the look in her eyes as it all started to make sense: the missing RSV shots, the dehydration from the vomiting and diarrhea, his need for the oxygen from the tank.

She and I sat on the cold floor of Gabriel’s hospital room, holding each other and crying. I couldn’t think of a single word to comfort her or assuage the guilt I knew she was feeling.

Some of my other kids have died; families with whom I’ve been just as involved. When Roberto’s mom decided to end life support, she waited until I arrived at the hospital. When Melissa died, I’m the one that made the funeral arrangements. But Roberto was never going to recover and Melissa’s disorder was degenerative. So, by comparison, Lauro’s death just seemed so unfair. Not when we had such plans for him! Not when we could see such progress….

It’s been two years and I guess I’m supposed to have more perspective now. Wisdom born of difficulty and sorrow. Oh, I can rationalize and I know that God can turn our sorrow around and help us grow from adversity and all that. I know we belong to eternity and that there’s a glorious promise of the day when death won’t exist.

But you know what? Sometimes sad things are sad no matter how much time has passed or how much wisdom has been gained. And it’s appropriate that the memory of a little boy’s death should still bring me to tears.

It’s been 16 posts and I’ve not uttered a single word about Coupling. That must be some sort of record in self-restraint. I deserve an award. Actually, I’ve been agonizing about this entry. If I hype the show up too much, I fear I’ll drive expectations up too high and you won’t like it. If I don’t introduce it properly, you might get the idea that I’m just casually mentioning some TV program I like. See my dilemma? Such a thin line!

Here’s the thing: watch the clip and form your own opinion. If you enjoy it, let me know! If you don’t, find yourself another Cecilia. No pressure.

In this clip, Steve’s girlfriend finds some of his porn while cleaning his apartment, a film titled Lesbian Spank Inferno. During a dinner party, he is challenged to describe the plot as he argues that the film is not porn but erotica.

“Sarah, wait! Damn it, wait!” In three long strides he’d caught up to her. His arm easily encircled her waist, gaining him a captive audience. Fine. She was waiting. But now what? What could he say? What was there to say?

Their silence was filled by the ghosts of the accusations they’d hurled heatedly at one another time and time again. When trust is gone, when it’s been eroded, how many platitudes are necessary to patch it back up? Until the next time.

He let his arm slacken and she turned to him; her eyes raked his face searching for a glimmer of understanding or hope somewhere, under some stone she’d previously left unturned, perhaps.

He knew she needed answers. Hell, he knew she deserved answers. But he couldn’t function under the weight of the regret and disappointment in her eyes. He reached up to brush the hair out of her face, a familiar gesture that had once been enough to convey all that he never seemed to have the courage to say. She closed her eyes and he traced her features, barely brushing her skin with his fingertips. Sarah, Sarah, how did I let it come to this?

Aware now of the warmth and nearness of her body, his mind tortured him with a thousand images of Sarah, his Sarah, playful, mischievous, seductive….her passion had been his undoing. He’d vowed never to be this reckless again and yet here he was, standing on this ledge, wanting for all the world to jump. He’d wanted only calculated risks, but her touch had shredded all his calculations, had left him tormented that he could not offer more, could not be more for her. And now he that he was losing her, he understood that he’d simply chosen not to give more. He’d chosen what he thought was safety. And now he was losing her who was his safety.

He stepped off the ledge.

Countless times he’d kissed her hungrily, greedily, driven by a need to possess and control. She’d been his obsession ever since that first harmless flirtation. He’d ruthlessly taken from her so that he might quench that obsession. To atone, he attempted now to give, feeling clumsy and awkward. He was tentative as he explored her mouth, no longer master now, trying to copy her artlessness, her abandon.

She broke off their embrace abruptly. She needed safety, too.

When he finally offered it to her, he was slumped against the wall for strength. He’d said the only thing that could have bridged the chasm that divided them and he’d meant it. Getting the words out had dissolved the last of his defenses.

When he finally said it, they were the last jagged words ripped from a dying man: “Sarah, I can’t live without you.”

When he finally said it, she was already gone.

********
The song "And so it goes" by Billy Joel is one of my favorites when I'm feeling sappy. I listened to it last night and woke up humming it. Beyond the sappyness, I do agree with his notion that a commitment to love is made without a safety net and with full acceptance that your heart may be broken. Billy Joel is awesome! He has another song, which is the most romantic thing I've ever heard. I'll keep that one to myself, though. :) I'm not feeling that sappy!

(During Sabbath school, Dave asked us to think about what man's glory had been before the fall...these are my thoughts.)

It was absurd. That he should be down there, kneeling in the dirt. It was beneath his station and he didn’t even seem to notice or care. Muscles taunt and straining underneath the hot sun. Mud seeping and oozing through this fingers. A smudge on his face from where he wiped his brow. And a silly, besotted smile tugging at his mouth as he worked.

One word, one thought, and humanity would have burst into existence. Instead he toiled.

I will give him strength.

He fashioned.

I will make her beautiful.

He crafted.

They’re going to need a sense of humor!

He formed.

And creativity.

He dreamed.

They will bear my image.

He planned.

They must have free will.

Even before the light of that first dawn, he was intimately involved, personally invested. Deeply committed. Every detail was designed, nothing overlooked or forgotten. His hands worked with deliberate care; he knew no hurry.

They belong to eternity. They belong to me.

There was no hesitation as he leaned down to breathe life into his creation; there was only joy. “It is very good.”

“He loves us with passion, without regrets. He cannot love more and will not love less.” (Michael Card)

For many years, I thought I hated to cook. It turns out I was wrong! What I hate is following a recipe, measuring things, planning ahead, and cleaning up. Oh and on principle, I hate anything that requires my complete attention for longer than 20 minutes. I’m also not too keen on cooking for myself. Other than this---why, I love to cook!

For a long time now I’ve combined my love of cooking with my love of books and I collect all manner of cookbooks and recipe collections (you know, the little booklets they put by the cashier in the grocery store). Of course, this collecting began before I realized that I liked cooking, so many of these are still in boxes somewhere, waiting for my fairy Godmother to hurry up and buy me Billy bookcases from Ikea. (My love of Ikea is even stronger than my love of cooking!)

Through the magic of DVR I record 30-Minute Meals and Semi-Homemade (both are Food Network shows). I follow two blogs that showcase daily recipes and I’m a registered member of allrecipes.com where I have a profile full of recipes I find particularly tempting. I love shopping for cool kitchen gadgets and excitedly drool over such things as sifters, whisks, silicone tools, and serving dishes.

Considering all this, it’s amazing that such little actual cooking takes place! Let’s see… for Christmas I made cookies and cream fudge for David (I’ll go ahead and claim credit for that), but my contribution to Andrew’s magnificent Thanksgiving meal was water! And I was late getting there! (Why do my friends put up with me?)

Every week when I put out nothing but store-bought goodies for Sabbath School brunch, I promise myself that I’ll cook something the following week. The sad thing is that I believe this recurring lie! I think the last time I got excited about cooking was when I used to make breakfast for the praise team---hmm…maybe there’s some hidden meaning there!

Cognitive dissonance, I learned at AUC, is the fine art of holding two conflicting beliefs at the same time. In particular, it can apply to believing one thing and yet behaving in a contradictory manner. This theory goes on to argue that people cannot do this for very long; that there is an internal drive to resolve the dissonance by either altering the behavior or changing or rationalizing the beliefs. Very soon, this theory predicts, I will either return to the idea that I hate cooking, continue to make excuses, or actually start cooking.

Isn’t the suspense just killing you?

I don’t get to read as much as I would like so I make up for it by typically reading more than one book at a time (what ADD?). Here’s what I’m reading right now:

The Giver by Lois Lowry

“Jonas’ world is perfect. Everything is under control. There is no war or fear or pain. There are no choices. Every person is assigned a role in the Community. When Jonas turns twelve, he is singled out to receive special training from The Giver. The Giver alone holds the memories of the true pain and pleasure of life. Now it’s time for Jonas to receive the truth. There is no turning back.”

This is my first Lois Lowry book and I’m thankful to Jared for introducing me to it. It’s a Newbery award-winner and a great read! Like so many other wonderful children’s books, it has so much to say for our adult world. As in all dystopias, there is a strong link between the control exerted over the populace and the control exerted over language. The book raises tough questions about wisdom and the importance of the past.

A Man of My Words by Richard Lederer

“Popular author and speaker Richard Lederer is one of the foremost and funniest commentators on the pleasures and quirks of the English language. In this far-ranging collection of essays, Lederer offers readers more of the irrepressible wordplay and linguistic high jinks his fans can’t get enough of, along with observations on a life of letters. From an inner-city classroom to a wordy weekend retreat, from centuries-old etymological legacies to the latest in slang, dialects, and faspeak, these essays transport, inform, and entertain as only Richard Lederer can.”

This is how the book opens: “The other day I went to the bookstore to buy a dictionary. The clerk showed me a really cheap one. I couldn’t find the words to thank her.” What can I say? Lederer had me at hello! The author is clearly and completely a lover of language; he is also quite funny! The book gives commentary on word usage and entertaining etymology, so this English major is in absolute heaven! Another big thanks to Jared!

Wired for War by PW Singer

“What happens when science fiction starts to become reality on the battlefield? A military expert reveals how technology is changing not just how wars are fought, but also the politics, economics, laws, and ethics that surround war itself.”

Chilling. That’s the best word I can use to describe this book. Singer uses a combination of history, technology, current events, and pop culture to help readers understand some very complex notions. Did you know that there are soldiers living in Nevada who are remotely killing terrorists in Afghanistan while sitting in a cubicle, then going home at night to dinner and little league games? That the same company that builds the Rumba (the little robot vacuum cleaner) also has a Pentagon contract to provide robot soldiers? That most of the companies that are creating these new technologies are private and would be perfectly happy to sell their wares to the Pentagon as they would to Al-Qaeda?

I heard an interview with the author on NPR (of course!). He has written extensively on the changing nature of war, with previous books on the nature and use of child warriors and mercenary armies. In this book he certainly describes the coolness factor of some of the cutting-edge technology being developed, but raises all the questions that he feels are being overlooked in our quest for the best and brightest toys. What about the psychological effects of the men who are fighting this new war? If wars in the past ended when one side couldn’t sustain any more deaths, what will happen if that is no longer a consideration? Current research is focusing on creating robots who will be able to collect information and then autonomously make a decision on how to respond, in essence “thinking” on their own. How far are we willing to take artificial intelligence? Didn’t anybody watch Terminator, for goodness’ sake?!

Waking the Dead by John Eldredge

OK. I’m cheating. I haven’t started this book yet. I’m putting it on the list because I plan on starting it tonight. It’s the book that we’ll be using as textbook for the Sabbath School class I attend. We just finished another book by Eldredge and will be starting this one tomorrow. I’ll write more about this one once I’ve actually read a chapter or two!

It’s because I believe so strongly in the power of love that I’m largely turned off by most romantic novels, movies, and songs. I gravitate much more to what I term “optimistic realism” --- comprising anything that recognizes that loving another person takes singular valor and hard work.

Love (the kind that lasts) is dirt-under-your-fingernails messy; it must be fought for and defended against the push and pull of everyday living, which is it’s natural predator and worst enemy. For it is the mundane things that claw at and, unchecked, tear down the promises exchanged with such hope and devotion.

Don Henley writes in the song The End of the Innocence that we have been “poisoned by these fairy tales.” I don’t know that I would go so far as that, but I do think the myths we hold on to about romance make it harder to find and recognize love when we are graced by it. Prince Charming is supposed to fight dragons and rescue the damsel in distress all without damaging his perfectly coiffured mane of hair (and, no, he’s not gay). But only in the fine print do they both find out that the dragon is not some outside creature that needs to be slain once (to then leave the couple gazing in one another’s eyes, undisturbed, throughout eternity) but that instead, the dragon is the daily struggle, the daily decision to be loving at all costs. And it is a fight in which both people must engage.

When we find someone who has the characteristics we admire, we rejoice and call it love. But how hard is it to love beauty, kindness, humor, self-control, generosity, and whatever else is on the list of Things We Look for in a Mate? It’s how we react when confronted with the stuff we don’t want that makes the difference.

He’s lazy. She’s vain. He never picks up a sock! Why does she need so many shoes?

We broke up; we weren’t really compatible.

I’m writing this piece because I just finished watching The Story of Us, one of the most romantic movies I’ve ever seen. Bruce Willis and Michelle Pfiffer portray a couple who’s on the brink of divorce after 15 years of marriage. Their happily ever after has failed as both realize there are things about the other person that get under their skin, that drive them nuts, that are completely unacceptable. [Spoiler Alert] They manage to stay together only when they accept that such is the multifaceted nature of love. Love isn’t only “happily ever after”: it can be hurtful at times, confusing at times, lonely at times….but always present.

He’s lazy. She’s vain. He never picks up a sock! Why does she need so many shoes?

But I made a commitment to be loving and I will honor it anyway.

Love is unconditional, but it is never blind. Being loving means intentionally setting aside what I wish you were so that I can see, really see, who it is that you are. Being loving means not being afraid of the word submission, not resisting being accountable to you. Being loving means choosing to be vulnerable and uncomfortable and disappointed and angry all the while letting my heart expand to encompass you…ALL of you.

The Story of Us is one of my favorite movies because it does not gloss over the complexity of love in its rush to bask in the romance of it. When happily ever after fails, love is what remains.