Tuesday, January 26, 2010

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...


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.

Monday, January 25, 2010

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.

Thursday, January 14, 2010

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.

Wednesday, January 13, 2010

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.

Thursday, January 07, 2010

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.

Monday, January 04, 2010

First day of the rest of my life

So today starts a new routine for a new year and a new "us". Daisy is back to school. I'm back to work full time. S is back to trying to finish his education. The world, unfortunately, keeps plugging along, as much as I would like to make it stop for me. The world is both kind and cruel that way.

I find that I am surprised, almost continually, by the ways the world has not changed. The bus still arrives promptly at 6:45 every morning to take Daisy Mae to school. It snowed this morning, which meant that traffic was backed up and it took me nearly two hours to get to work. Don't ask me why I was convinced that I would be exempt from this ordeal. There are times you want to say to the world, "Sorry, excuse me; the little love of my life is gone. My baby is dead. Can't you see that I'm just not equipped to handle frustrations like lake effect snow? Can you please teleport me to work now?" Unfortunately, there is no one with whom I can register this complaint. God, I have found, is not inclined to bend to my requests of late; his having so recently re-assigned my Bug to a new job title on a different plane of existence.

So I am left to find creative ways to cope with the reality of a world that has not stopped and is increasingly expecting me to come along for the ride:

1) I find that I absolutely must cry, as hard as I can, every morning. Otherwise, my emotions, not being sufficiently exhausted, will sneak up and whack me in the back of the head while driving in snow traffic, or in the middle of budget meetings. I usually do this while walking the dogs in the woods. This works on several levels: I am alone and outside and the day is new and my mind can go where I will it. The dogs do not care that I am crying. And I get to take a shower afterward, so I'm not a ragged mess. I simply take out a memory that is particularly happy, or sad, or painful -- one that really, it would be a lot easier to bury -- and ponder on it for awhile. S has likened it to the mental equivalent to picking a scab. Anyway, I can take fifteen minutes and cry like a baby while the dogs investigate what critters have invaded the woods overnight. Most of the time, I can then keep it together for the rest of the day. Most of the time. Mileage varies.

2) I always keep a funny story about Kes at the ready for when friends call and sob on the phone to me, or co-workers appear in my doorway with tears in their eyes. The exchange goes like this:
"It's good to see you back."
"Thanks; wish I could say it's good to be back, but seriously, I want to go back to bed."
Now the crying starts. "God, I just don't have any words for you...it's so sad."
"Hey. Did I ever tell you about the time when the Bug ... (insets clever story here)"

3) I always, always, always carry tissues, mascara and lipstick.

4) I do yoga stretches several times a day. It helps me re-center and breathe. I must be careful while wearing tight pants, however. I already had to get my emergency sewing kit out once.

5) I write. I write some things here. I write the really gnarly stuff in a private journal. But I write every day, even if it makes me cry some more.

2010. New year, new decade, new life for me. I started 2000 pregnant and on a quest to figure out how to be a mother for the first time. I guess I'm starting 2010 with a quest to figure out how to be what I am supposed to be from now on.

Friday, January 01, 2010

The New Year

2009 started as one of the best years of our lives and ended with the worst tragedy of our lives. But we have learned the measure of the friendships we hold and despite our heartache, we know we are blessed. May 2010 hold peace, love and prosperity for each of you.