Snow Angels

Dear Bug,

I miss you today. It's weird; every day I miss you, but every day it's for a different reason.

There is a LOT of new snow on the ground here. Like, Bluebird can't get her belly out of the snow and Angus disappears entirely if he gets off the path.

But the snow is too even. It's nice and clean and undisturbed. There are no snow angels. You always loved making snow angels. I can still see you out there, in your bibs and jacket, methodically working your way across the yard. Stop. Set. Drop over backwards, disappearing into the powdery white. Then emerge, laughing, with snow in your jacket and a perfect, beautiful snow angel as evidence that you were there.

There are no footprints. No forts. No tunnels where you and Will have been playing Ben 10 or Pokemon.

Every time one of the branches outside gives up its payload, I think of you, standing under your little tree back by the river, shaking it to knock the snow off and laughing when it all fell on your head. I went back there and shook off your tree this morning. I knew you would be worried about it.

It snowed the morning you left me. It was the first snow of the season and you were so happy about it. I wish with all my heart you were still here to enjoy it today.

And in other news...

People who study grief for a living say that there's a peak in the overwhelming, can't-make-coffee-without-crying portion of the program between three and six months after your loss. I gotta figure that's where i am now. Because seriously; brushing my teeth makes me burst into tears.

I guess it's just something to gut through. It's interesting that this peak comes just about the time when the rest of the world starts to figure you should be getting back into the swing of things.

I'm just glad my office door closes, and doesn't have a window.

So instead of recapping the ongoing "Kleenex Count" here in the land of Bean, I thought we'd come up to date on things that are far happier: The ongoing progress with bringing Daisy Mae into our family.

I've neglected this in my writing, although it's been a major focus of our activity. I guess my point here in the last three months has been to try to find a place to pour out my pain. I'm still going to do that, although it's probably time to intermingle some more discussion of living, rather than dying.

We're starting to become a family again.

It hasn't been easy. We've had a lot of family therapy over the last three months, with a lot of homework and very difficult heart-to-heart talks along the way. I'll confess that, when the Bug died, I realized that I had been thinking of Daisy Mae more as "the Bug's sister" than "my daughter". It was a difficult and painful confession to make. But in making it, I freed myself to figure out how to build my relationship with Daisy from scratch, with our own rules and our own ways of doing things.

I have to say it's working out well. She's still a teen, and by that I mean she makes me stop and stare, dumbfounded, at her at least once a day. But she's increasingly becoming MY teen.

I had a wonderful time fussing over her for Valentine's Day, picking her up from a weekend away at a teen Purity Conference with flowers and balloons and candy. She acted like it wasn't a big deal at the time, but later, I overheard her tell three of her friends and her counselor about it.

This weekend, we got her ears pierced. This was a big deal, and she was scared. But she's happy with the results, and so am I. We also went shopping for her dresses for her spring semi-formal dance, which might have been a disaster, but ended up being a delightful time. We got dresses that she loved and that even Dad approved of.

She seems...happy. And that's a big deal. She hasn't had a lot of happy in her life. We're honestly, collectively looking forward to finalizing the adoption. We're looking forward to a trip to Ireland together with Aunt Kate. We're laughing more and fighting a LOT less. We're cooking together more. We're making plans.

It's not perfect. We still disagree over bedtimes, food choices, R-Rated movies, chores, boyfriends, the Internet, cell phones, and towels on the floor. We all take turns feeling and expressing hurt. We each take our turns crying, and each for our own reasons. But we're becoming a family and that's a good thing.

Today

Today, I am tired of being brave. I want to scream and rage and cower. I want to wallow in self-pity.

Today, I do not want to go to work and make decisions and solve problems. I want to spend the day curled up in a ball, hugging Kiersten's stuffed gharial and crying.

Today, I resent every intact family I see, with their healthy, happy children who give them joy. I want to switch places with them.

Today, I do not want to answer the co-worker who has cornered me in the ladies room, with the tears in her eyes, with an optimistic story about how grateful I am that my beautiful little girl didn't suffer when she died. I want to collapse into her arms and sob and tell her how sad I am.

Today, I want to look people straight in the eye, and answer the question, "How are you?" with the honest answer, "The most precious person in my world is gone and it hurts so much that I'm struggling to breathe."

Today, I want to cry and not have to fix my eye make-up afterward, so I don't look a wreck in my 3:00 meeting.

Today, I do not want to make small talk, cogent presentations or even sense in English. I want to babble like the village idiot and talk about my baby and how much I miss her.

Today, I do not want to "prop up" another living being. I want to be selfish and keep all of my energy for me. I want to blame everything and everyone I see for my pain.

Today, I want my sweet baby back.



Today, I will not get any of these things. But it doesn't stop me from wanting them.

And just who, exactly, is going to eat all these pickles???

As any parent who has had a child go off to college knows, our kids leave a lot behind when they exit our lives. The circumstances of that exit really don't matter, ultimately --their stuff is still there and has to be dealt with .

I haven't been able to tackle the Bug's room yet; in fact, I still haven't made her bed from the day she died. Can't do it. It's now covered with the hundreds and hundreds of cards and letters from people who cared enough about her -- or about us -- to send a note of condolence. It may be 2012 before I get it cleaned off and I'm OK with that. The door is closed and we'll open it again when that particular wound has scarred over.

But this really isn't about dealing with The Room. More to the point, this is about the stuff our kids leave behind in our dining rooms, family room...and pantries. The management of this "stuff" can be painful and utterly absurd, all at the same time.

You see, I have come to realize that children train us. They train us to buy things. Over and over. I have bought cucumbers and red peppers no fewer than five times since the Bug died. It's automatic. They were the Bug's snackfood of choice for when she got home from school or had the munchies before dinner. I have, for the last eight years, cut the top off of every pepper I use to prepare a meal and set it aside, so she could sneak in and pretend to "steal" them off the cutting board. I probably always will.

There are myriad other things of Kiersten's that so far have remained utterly untouched, as if we're all waiting for her to come home. Her pretty little silver purse is hanging off the back of one of the kitchen chairs. It has $34.82 in it (I swear, that kid had more money than God). We all look at it. We all acknowledge that it needs to be put away. And yet, none of us will touch it, let alone take the money out of it. I have gone so far as to pick it up, and verify that her money is still in there, then replace it on the back of the chair. I know that Mr. Bean and Daisy Mae have done the same. It may sit there forever.

So, too, we are faced with the dilemma of the Untouchable Pickle Jar. The Bug loved pickles. LOVED them. I used to have to restrict her from eating pickles before breakfast and from drinking the pickle juice. (In fact, in my Paranoid Mommy moments, back before the Worst Thing in the World came to pass, I used to indulge perverse waking nightmares of my kid dropping over dead of a heart attack from eating too much salt. Who'd have thought...) In any event, about a week before Thanksgiving, we indulged the Bug and bought her a gallon jar of Vlasic Kosher Dill Spears. She opened the jar the morning she died -- and I think ate several of them before breakfast. Because they were then open, she made room in the fridge for the pickle jar (because pickles, as we know, are always better cold). It might as well be labeled, "Kiersten's Pickles! Keep out!"

So there it sits. A gallon jar takes up a lot of room in the fridge. Daisy Mae has GERD, making pickles strictly verboten. I like pickles well enough, but probably only eat 2-3 per month. But we can neither get rid of the pickle jar, nor can we even open the jar and eat the pickles. They were -- they are -- the Bug's pickles.

I hope that I can report back later that I have managed to return from the grocery store and not opened the bag, found red peppers and cucumbers, and said "WTF?". I also hope that I will have retained a small handful of pickles from the jar, to keep for making tuna salad and the like, and that I have removed the jar from the fridge.

But I can't make any promises.

Having trouble finding my voice

I have had a lot of things going through my head of late, but I'm having trouble articulating them in any fashion that makes sense to anyone else. But because I've been writing fairly regularly lately, I figured I should put something down so you all know I didn't get hit by a truck or anything. I might have to resort to a bulleted list however.

So, in no particular order, here are about ten days of random thoughts and occurrences:

I got be spend the night of the State of the Union address in Washington DC. Although I have been there several times, I've actually never gotten to go look at any of the tourist-y parts of it before. I was lucky this time, however, in that my friend Maria and I found ourselves with a free afternoon when it was sunny and in the 40s. We decided to go walking and check out the city a bit. We were rewarded, not only with a chance to go take totally stupid pictures of ourselves and each other in front of the White House, but also with finding a fabulous bistro, serving Pays d'Oc fare, across the street from the Ford's Theater. So Fabulous Lunch + 5-mile walk on a sunny afternoon + touristy goodness + true friendship = the nicest afternoon I've spent in quite awhile - certainly the nicest since Kiersten died. Yay. Oh, and we got to watch the SOTU in the lobby bar of the Mandarin Oriental hotel, nibbling oesetra caviar on toast points and drinking cognac. It didn't suck.

I find that I am more functional, mentally, than I have been thus far. However, when the whole grief thing does come on, it strikes with a viciousness I never could have imagined. This scared the devil out of me for awhile, but then I saw an article in the New Yorker that basically said, "yep; you'll have that." It also suggests that grief builds for about six months for most people and then starts to get better. So I guess we have awhile longer to tough this out before it's actually going to improve.

I went house-hunting with my friend Joyce today. She's looking to move back from Texas with her husband Mike. I've written about them before. We found a beautiful -- and by beautiful, I mean head-for-the-mountains stunning -- home on an equally stunning piece of property. With all the goodies they need to take care of their horses. And it's only about a half-hour from our house. This could be a very good thing. We spent an enormous amount of time with them before Kes was born; they moved away when she was still very young. I'm looking forward to having them home; I think they may be part of our healing.

Daisy Mae has started saying "I love you". She also called me "mom" the other day. These may seem like little things, but around here, they're a pretty damn big deal. Especially since the first I love you came about a half hour after I busted her for sexting (a bra and panties shot sent to one of the boys at school via MySpace) and we had a long talk about what building an ugly reputation in school can do to the rest of your life. It's true what they say -- kids desperately want to know that you care enough to stop them from hurting themselves.

We've decided to stop going to Karate. Even though I dearly love the people who run the local dojo, it's just too, too painful for us to go back there. Kiersten loved it there very much and we can't walk in without seeing her. So we're looking at the health club down the street for an exercise option. I need it desperately.

Well, I guess we've progressed from "I got nothin" to a full-fledged update. I'll find my voice to write about something other than a newsreel in a bit. For one, I have a flyer advertising for a local writer's contest for which entries are due April 1. I took first prize in this competition a couple of years ago, and because of that, I haven't entered since. But I'm not proud -- I need a little pick-me-up right now and I need to focus on writing a piece of fiction before my brain forgets how to do it.

So gentle readers, I will leave you with one final thought: Just like the world feels new after a big thunderstorm, or looks beautiful and clean after a blizzard, our emotional selves can feel purified by a storm of tears. I've learned a lot about the usefulness of crying in the last few weeks. If you're feeling out of sorts lately, I recommend indulging in a good 20-minute pity party. It'll help. I promise.

Act 3, Scene 1: in which I set aside any attempts at eloquence for a few moments and just put some naked truth out there...

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BHD wrote this yesterday, in response to my post about Horatio: What others call courage you probably know as simply keeping on with life.

Something as public as a blog sort of forces you to take all the feelings you have inside and sort them through and make them palatable for the rest of the world to read. I suppose there are those who would call that "courageous" or the exercise "therapeutic". And they would, perhaps, be right. But it's only part of the story.

Others have made me aware that there are a few of you out there in Blogland who are reading this because you're trying to process a loss of your own, and you're thinking, "Holy crap! I am five months (or 8 months, or 3 years) out from losing (someone very dear to you) and I'm still a blubbering idiot most of the time. Why am I not moving along like she seems to be?"

I wish I could tell you that I’m 'OK' and 'taking things day by day' and all that – and I guess in reality that’s what I’m doing. But really? I’m pretty effing far from OK. I have exactly 12 functioning brain cells (up from 6 last week, but still) and a hole in my heart the size of Wisconsin. Probably a good thing that I’m too old and fat to join the Army Special Forces, otherwise I’d probably enlist, just on the off chance that I could get myself killed in an honorable way and it'd let me be close to her faster. So don't let the composed exterior fool you.

And I'm going to let you in on another secret: All the books and whatnot say that the 'milestone' days are really hard when you lose a child. And they are. But the thought that the 'milestone days' are the really hard part of all this? In my experience, that’s a big, fat lie. The really tough days? The days that make you really, honestly think that you wish you had the stones to go join the Special Forces or something? That would be just the regular days. The days that don’t require you to do anything. The days when you don’t have a “role” to play. The days when you can't put on someone else's face and pretend that this is all some macabre production number. The days when you just can’t distract yourself from the awful, painful reality of your loss.

Tuesday. Sunday. Laundry day. Those are the tough days. The days when you have to look, search, hope that you'll find some meaning, some purpose to why you and your geriatric cat are both still here when three months ago, you were worried about how she was going to cope with eventually losing you both. That meaning is tough to find. And believe me; I'm looking pretty hard. It sucks. It hurts like hell. Makes me want to sit and blubber like an idiot.

So, blubbering idiots of the world, unite. We are all brothers and sisters in this club that none of us wants to belong to.

Thanks for being here, to give me someone to reach out to. This is helping me. And if you're reading because you're searching, too, I hope it's helping you.

To you, Horatio.

The mug of Foster’s slid across the table at the Lazy Flamingo, aided by perhaps a quarter inch too many layers of varnish. I stopped it before it hit the wall at the edge of the booth. S similarly stuck a hand out just in time to keep his mug from colliding with the Bug’s virgin strawberry daiquiri. S and I made a quick motion of a toast to each other and took the first sip of Foster’s while the Bug busied herself with trying to lift the dollop of whipped cream off the top of the daiquiri with her straw. *Plop*. The recalcitrant whipped cream slid from its perch for the third time and landed back on top of the drink. I handed Bug my spoon. She scowled, “Don’t spoil my game.”

Fatigue sat just below the surface of my consciousness; S and I had been up until 3 am on a late night snapper fishing run, during which I had landed three beautiful mutton snappers and a spectacular case of seasickness. Don’t be bashful; don’t be shy. Lean over the edge and let it fly! The mantra from the previous night had tickled the Bug to no end, “Mama, did you really honk off the back of the boat?!” Her toothy giggle revealed that she had succeeded in transferring some of the whipped cream from the daiquiri to her mouth.

“Yes; I really honked off the back of the boat. Did you really honk all over that bed in the emergency room?”

Bug scowled at me for the second time, “Hey I was really sick! And I had to get a shot!” I winked at her. She screwed up her face once more and then giggled. The night before last had been spent with Bug at the emergency room in Ft. Myers, after she developed a nasty fever. I had been leery about visiting an inner city ER at 2 am on a Saturday – thinking that a seven-year-old with a virus would wait in line behind a fair share of auto wreck and gunshot victims. But 104 degrees was more than I felt like I could handle on my own and in the end they had fawned over her like a princess, and an hour and a magic shot later her fever was down and she fell asleep on the way back to the condo. And today, we’d taken a short walk on the beach at the Sanibel lighthouse and were huddling at our favorite watering hole on the island, awaiting conch fritters and grilled grouper.

"Daddy, how big was that fish you caught?”

As S measured out about 14 inches with his hands, explaining how the length of a fish is measured from the tip of the nose to the caudal peduncle, Bug grinned like she was up to something. With her fingers, she measured out a span of three inches and leaned forward, conspiratorially. “It was Horatio the Honkapuss!” The giggle erupted from her.

Last weekend, we sat in the same booth at the Lazy Flamingo, with S’s parents. I told the story, and we raised a glass to the Bug and to strawberry daiquiris with whipped cream, and to Horatio the Honkapuss. The varnish was a couple layers thicker. The grouper was temptingly fresh. The Foster’s was still cold and the conch fritters still delicious. All that was missing was the goggle-eyed grin and the belly-laugh of a little girl. I’m not sure the place will ever feel the same to us, but I’ll always feel grateful for the memory it’s given me.
















Love you, Bug, and I miss you very much.

Random Acts of Kindness and Senseless Beauty

Today, a few of my colleagues bestowed a gift on us, in honor of our beautiful bug, that overwhelmed us entirely.

I can't tell you what it is yet; there will be a news story about it later. (Yes; we'll be in the news again. I don't mind so much this time.) But today, S and I are once again feeling profound caring and a bittersweet sense of the goodness of the world.

Getting back in the saddle

One of the toughest things to do when you are grieving -- especially when your tragedy has been such a public thing on so many levels -- is to try to get people to let you do your job again.

This week, I am at a review meeting for a national program I'm involved with, developing new therapies to treat our war-wounded. There's a lot of work to do -- we have reviews for all of our projects, there is media to manage, strategic planning to be done for the year, as well as re-affirming the team of nearly 300 who have to get all this work done.

This is the first time since we lost the Bug that I've seen many of my colleagues. Most of them know what's happened and their first priority is to check in and see how S and I are doing. It's only been seven weeks, after all, and the grief can still be very fresh at times. Some of them don't know what's happened, and I'm left with how to answer the question, "Gosh, I don't think I've talked with you in MONTHS. You must be busy. So how are things going?"

The first instinct is to go with the standard, "Good. Things are going well." But in truth, things are NOT going well. I've been through the worst hell imaginable. But of course, you can't answer that way, either. So I have to take the deep breath, stand up tall, look these people in the eye and say, "My husband and I lost our young daughter the day after Thanksgiving."

And then there is shock, and pity, and tears. I've told the story so many times, it doesn't even make me flinch anymore. Once again, my job is to help everyone else process my tragedy. We talk about faith. I share a story or two. I talk about what a lovely, caring man my county coroner is.

Invariably, they all ask me, "How are you doing this? Shouldn't you just take it easy?" They don't really feel this inside -- their sense of urgency matches my own. I tell them that "taking it easy" isn't the reason I'm here, nor the reason any of the rest of us are here. We're here because there is work to be done, and if we don't do it, the result will be more mothers having to tell stories about how they lost their children.

And then we have to move on. Because we have work to do. Because there are other lives at stake. Because the Bug told me, more than once, "You have to help them take care of those men, Mama."

Baby girl, today I am looking into the eyes of each and every one of these soldiers, their doctors and their caretakers. I am looking for the thing in each of them that you would see -- the reason each of them deserves to feel love, the reason each of them deserves the best I can bring to this. And I'm honoring you while I do it. Thank you for helping me be mindful of the reason I do my job, and for the love and compassion I need to bring to it to do it well.

The first closure.

Of all the questions in the world, "Why?" may be the hardest to answer. Why are we here? Why do people suffer? Why is the sky blue?

The question that, for me, has dominated nearly every waking minute for the last six weeks has been, "Why did my baby die?"

My need to know has been manifold: On an intellectual level, the scientist in me hasn't been able to understand how anyone could die as quickly as she did. On an emotional level, the mother in me needed to know, for sure, that my baby really didn't suffer. And on a purely selfish level, I needed to be re-assured that I couldn't have done anything different to affect what happened that horrific night.

I have played the minutes between 8:55 pm and 9:06 pm in my mind, over and over, a thousand times. What if I was wrong? What if she really did have a pulse and I just didn't get the defibrillator on her quickly enough? What if I'd been skating by her side, as I had been just 10 minutes earlier? Maybe I could have started CPR 90 seconds sooner? What if we hadn't gone skating that night?

Today, I had a call from the county coroner. After a short exchange of pleasantries, he took a deep breath and said, "We have been completely unable to find a single anatomical or pathological reason for her death." His voice caught. "I'm sorry."

"So that means Long QT Syndrome, right?" I finally exhaled.

"By process of elimination, yes. That or a channelopathy even more rare." He paused. I could feel his shrug over the phone. "A lightning strike."

It was precisely the answer I expected. Figuring this puzzle out has taken no small amount of my attention over the last few weeks. I had crossed off all the other causes of sudden cardiac death, settling perhaps a week ago on potassium ion Long QT Syndrome. Long QT is uncommon, but not rare either. It happens because the careful balance of sodium and potassium that make the electrical signals propagate through the heart (and cause it to beat) gets out of whack. The protein mutations that cause it can range from nearly benign to inevitably fatal. It causes the heart to "forget" to beat, and is usually diagnosed from a fainting incident. It is usually first evident in young boys, but nearly always makes its first appearance in girls at the cusp of puberty. In the most malignant form, the first indication is sudden cardiac arrest. When this happens, it not only kills the heart, but the errant electrical signals cascade through the body and cause nearly instant loss of brain function as well. These children do not recover.

Perhaps two dozen children per year die because of this. You can't diagnose it after death, but all the other causes had been exhausted.

So there it was. A lightning strike. Can't predict it. Can't stop it. Can't repair it. He reassured me that there was nothing that I could have done or not done to prevent this outcome. I knew in my heart he was right.

"For the record, she may have been the most beautiful child I've ever seen. I don't know why that's important. We tried so hard to find you a definite answer. I'm so sorry."

We cried together a little bit. Then he wished me well and said goodbye.

I know why she died so quickly. I know she didn't suffer. I know I couldn't fix it.

Not that it changes the outcome, or lessens the pain of having lost our beautiful girl. But at least I can stop asking Why.