Sunday, May 24, 2009

Fearing fear

I will be honest, I am not a blog reader. I am a blog checker, in a hurry, because I need to know who someone is, or because I already know who they are and need to just check up on what they're doing. This is (obviously) evidenced in my ridiculously minimal list of blogs along my sidebar, which consists almost entirely of the blogs of people I know whose daily life I want to have quick links to (told you I was being honest). I have come across dozens, hundreds of blogs that suck me in and make me want to read them every day, make me want to pore over every word and place myself in that persons shoes, but the stark truth of my life is I hate the computer and my therapy is writing, so that is what I spend most of my time doing on the computer.
There have been a few blogs, though, that I find myself wondering about as I go about my day, and they always, always, consist of a blog where there is some sort of baby in a precarious, life threatening situation. I become obsessed, wondering throughout the day about weight gains, GI tubes, and surgery success rates. I count backwards from birthdays trying to figure out adjusted ages. It is as if I am wanting through my own psychic thoughts and online energy transmission to somehow save these parents from the purgatory in which I once drowned myself. Quite simply, I need to see this baby saved.
Now, let me preface all the following remarks with this: the experience of a baby on the brink of life is a purgatory in itself, and a place which I profess to hold no knowledge. The greatest difference between these two forms of living hell (the land of the baby who has died, vs. the one who might die) is this: if the baby is alive, there is a glimmer of hope, and this is the strand that ropes me in. I cling to the hope for them, so desperately having wanted there to be one ounce of hope for my daughter who never had a chance, and so through these little fighters I somehow live out the dream of hope over the satillite waves of the world wide web.
My recent obsession, only two days old now, is Danny Miller's tiny son Charlie, who is fighting for his life so gracefully in Los Angeles. Miller, whose blog once took an entirely different form which you can peruse for yourself, has found his life (and hence his blog) suddenly consumed with his son's struggle to survive. Little Charlie now weighs in at almost two pounds, doing well for his class... and the other half of this story is that little Charlie's little twin, Oliver, lost his own struggle only hours after birth.
So there is Oliver, beloved brother, and he has died, the sweet son of two loving parents. The hopes and dreams for his independent life, the images of two boys in some likeness of one another, have slipped away. Grief looms, hovers, threatens to take over, and then there is Charlie.
The fight to survive must sometimes overwhelm the urge to crawl into a cave and cry. The thread of hope for Oliver has been lost, and I imagine that the strength it takes to recognize the enormity of that loss, of the life of one little son, is greater than the strength it takes to hope that the other son will live. Who could accomplish both at once, the grief (to its fullest extent) accompanied by the hope? Some of you know all too well.
But I do not, and this is what I am struck with now, as I sit here thousands of miles away wondering if there is anything I could do to help to keep Charlie alive. I picture his parents, sucked into a lightning-fast whirlwind of the micro-preemie world. They are also swirling in the dust cloud of grief, and feeling that increasing realization as each day passes that the dream has died, that Oliver will not return to them, and that they will have to trudge through each remaining day of their lives without him. They are learning what it feels like to lose a child, they are learning the ache that starts so deeply within your heart that when you take a deep breath it hurts. They are learning that some things hurt so much that your body forgets to do even just that, and a minute might pass without breath, until you begin to feel dizzy and suck in a gasp, and let out a sigh, and the world is still there in front of you, and your child is not in it.
So how do you pair this, the knowledge of what it feels like to lose a child, with the fear that your other child will die? How does knowing what this is like impact the journey of a family walking through the daily struggles of a 2-pounder who is fighting along like a little champ, but still walks the line? I ponder this as I wonder, knowing that the answer could never be known, how their daily fears would compare to the fears of someone who has only known the purgatory with the gleaming, distant droplet of hope, and have never known one where hope was lost.
This thinking is circular, and it takes me nowhere, but this is really where everything originates: I am amazed, every day, by the strength of the human spirit. I can't imagine how Miller and his family can cope with the grief and the anguish and the stress and the hope and the despair, with the loss of innocence and loss of life and each milestone and ounce gained and ounce lost. I can try to put myself there and say, oh, I could never, ever do that. I don't know how they do that.
Yet had you asked me, six and a half years ago today, if I could survive the death of my own baby, I would have told you in no uncertain terms that the answer was no. I remember, at one time when I was pregnant with Charlotte, having this very lucid thought:
If this baby died, would I kill myself?
I couldn't envision myself separate from my child, and she hadn't even been born yet. I was sure that I could never live beyond any separation.
Yet here I am, and while I feel I could tell you in just as certain terms that I could never survive it again, I also know that something grew within me that surprised me and took me captive, that held my hand and helped me to find light when around me there was only darkness.
And so while I cannot make Charlie live, I can sit here and feel amazed by the strength of his family, I can grieve in my own unrelated way for his brother and his parents, and I can hope on my own terms that this little boy wins his fight. And I can feel amazed, and assured, that whatever forces held my hand will in some way hold them tightly around their middles, keeping them standing for their child who lives, all the while keeping them gentle for the sadness that they hold for baby Oliver.
Thinking of you, little sweet Charlie, and offering all the good wishes and hopes for strength and growth and ounces gained and food digested and all those other things so many people take for granted.


Mel said...

The Miller story sounds a lot like my own, only that our second twin boy did die after two days. I can say that in my case, the grief and shock overtook any slim hope that I felt in those two days.

Congrats on your pregnancy. I am also pregnant with what I imagine will be our third living child. I had a "successful" tubal ligation after the birth of my youngest, since there are risks involved with me being pregnant. Given the three years of infertility that preceded the conception of my oldest, this comes as quite a shock.

Anonymous said...

I think I've read this post 20 times, amazed at its beauty and sadness while realizing with a surreal start that you're describing (so accurately) what my family is going through. To lose one child while the other clings to life creates a mix of emotions and realities that I never thought I could bear. And guilt which I AM trying to work through. At first, when Oliver was failing, all energies on him, Charlie was fine in his incubator, just leave him alone and he'll be okay, he's just little. Then, after Oliver died, all focus on Charlie whose situation was far more precarious than realized, forget about Oliver, he's gone, no time to grieve. Then the slow realization of the endless, agonizing, massive grief for Oliver lying just under the onion skin layer of "holding it together" for our other son and because the NICU is no place for any kind of breakdowns. Still no time for that, though, must keep it back even though it keeps seeping up and leaving stains on the fabric. Then horrible, scary setbacks with Charlie, an insensitive clueless doctor (not his regular one) telling me (on Mother's Day) over his incubator that it would be best to pull the plug now rather than later because we'll just bond more if we let time pass and miss "the window of opportunity" of pulling him off the ventilator. Then a stream of more positive new amidst new challenges. Weight gain, better respiration, successful feeding tubes starting up his digestive system. How can we not hope? We do, tremendously, even though the unfreezing of emotions opens the door to even greater loss. But it's too late, doctor, sorry to disappoint you but we've missed our "window."

Carol, it moves me more than I can say that you are pulling for Charlie and grieving for Oliver, as I am for Charlotte. And to Mel I can only offer compassion for losing both her twin boys. And now I'm off to see Charlie and will tell him about these amazing people who are rooting for him.

Charlotte's Mama said...

Isn't this amazing?
The "window"???????????
My jaw is sitting on the floor right now, as I imagine that this man must never had had children of his own.
If he does, he clearly has a very different relationship with them than I do to mine.
Less time to bond being better?
And what would you give for one more day with Oliver, I wonder?
Would that day of bonding made his passing more difficult, or would you perhaps cherish that day?

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