Day Six, Marking Time

Day Six is really just a series of small vignettes that replay in my head over and over . . . . like ESPN running the Joe Theisman injury tape in slo-mo. You want to turn away, and shut it off, and can't really, and peek through your fingers, and it's still just as gory the 81st time as the 1st seeing the bone protruding through the leg. And just when you think you're falling asleep to the image of warm, floral smelling beaches, up springs Joe, writhing around on the turf keeping you up another 45 minutes.

Where was I?

Somewhere circa 5:30-6:00 a.m. Sunday morning my watch went off, alerting me it was pumping time, and it honestly took me a few seconds to realize I was still at Children's in a chair (where someone had thoughtfully covered me with a blanket) and not lying bound in someone's car trunk. Mr. ABF woke up and headed home to be there when Bella awoke, and I headed downstairs to the cafeteria for a real cup of coffee. Enough with this pumping-martyr nonsense! Well, ok, maybe a decaf. Please, readers, go now and put a $20 in every bag you own, for you never know where you'll be craving some sort of nourishment only to face a handwritten sign announcing that the credit card machines are down. En route to the coffee aroma with my meager wadded bills I passed . . . oatmeal. I hadn't eaten oatmeal in forever, and right then I could think of nothing I wanted more. To hell with coffee. I retreated to a corner of the cafeteria with my bowl piled high with nuts, raisins and brown sugar, and ate my comfort food. And thought. And wondered how many other parents sitting in the dark morning light had experienced a night like mine. Or worse.

At some point either late Saturday or early Sunday, "the specialists" informed us that they wanted to meet early Sunday afternoon, around 1 p.m. They ushered us into the hallway next to Maddy's, brand-new, everything still covered with plastic, awaiting the onslaught of trauma. And made a circle of chairs. We sat facing two genetic specialists, one assistant, and the senior resident. Their last names were all so fantastic, I wish I could repeat them here; they sounded each one as if I was reading a playbill to a Broadway Rogers and Hammerstein revue. One told us of the ways in which Maddy's problems appeared to be metabolic. The tests they had run already, the tests they were waiting on, stuff they wanted to do. The geneticist told us the ways in which her problems appeared genetic -- maybe of the Musc.ular Dystro.phy vein (a soon to be junked avenue of thought), and so forth. Both informed us that with problems this rare and this severe, it was likely a genetic autosomal recessive problem, and Maddy was the unlucky 1:4. They spoke of wanting to know what happened to her, always couching it first and foremost in the argument "in case you want to become pregnant again." I fell out my chair and rolled on the floor in hysterics. In my head. You had to be fucking kidding me, pregnant again, after THIS? But they also pointed out that Bella might be a carrier. And her future offspring, depending on what this was exactly, might be affected. We should find out. We agreed to the skin biopsy.

When they were finished with their spiels, in sum not knowing what on earth had conspired to afflict our daughter, I asked them both, regardless of what you think it might be, what is her prognosis? And they both, separately, told us that she would die, probably within days.

I had been so level-headed and robotic through this discussion, and then I remember wanting to ask a question about the biopsy, and all that left my mouth was, "What are . . . " and I couldn't finish the sentence. I looked at Mr. ABF with my gut quickly rising into my mouth, and he turned to them and said, "what are the risks of her being put under for this procedure and dying during?" which is exactly what I wanted to ask. I have no idea how he knew I was thinking just that. I still don't.

When the experts were finished, the resident then turned and spoke to us. All I remember is her first sentence, "What I see is a little girl on a tremendous amount of support." The rest was a flood of words that fell on the floor and I couldn't distinguish one sentence from the next. But I heard her loud and clear: Maddy was currently being artificially kept alive by machines. Her body was done working.

They left us alone for a few minutes, which was the first time I realized that our nurse had actually been in there the entire time taking notes for us. She looked at us with a tear-stained face and asked if she could do anything. I can't even remember if she left us alone or not, but I remember us looking at each other and knowing instinctively, it was time. The first words out of my mouth to Mr. ABF were "I'm sorry." And I didn't mean it so much in an "it's my fault" kinda way (although I don't think a day has passed where I've wondered how this very scene could've been avoided had he married someone else), but in an "I'm so sorry you have to go through this. That you are here right now, in the midst of this hell. You deserve more." Without a word to each other, we realized Maddy was done fighting, and it was time to put an end to her horrible nightmare, now, as soon as possible. We didn't even discus the whether, we went straight to when, and how soon. Within minutes, I can't imagine it was much longer, we had assembled everyone again.

We asked when the biopsy could be done, not wanting to wait for the next crash, and they called a surgeon who was willing to come around 5 p.m. They would put her under, and then gently bring her out, and then we'd remove her support.

There was a flurry of phone calls to relatives, and I went and finally got a cup of coffee. And I sat with my cup of "who cares, you won't need to breastfeed" in the waiting room at a table and made a list. Questions on a napkin were my last ditch attempt to maintain some control over the situation, and I wanted things written down in the event I became incoherent so I could simply nod and point. Could I donate all that milk? Questions for the social worker who was called in on a Sunday afternoon: How do you tell a bright two year old that her sister is dead? I didn't know how much I should ask of the Social Worker in these cases; What would we do when we left this hospital without our daughter? How in hell could this have happened to us?

We spent the rest of the afternoon holding Maddy. They unplugged the vibrating contraption, plugged her into a normal respirator, and let us hold her. Despite the nurses kind intentions at both hosptials, due to seizures and respirators and moves and exams, we had hardly held her all week. Most first weeks are spent in a mad attempt to put the baby down; ours was spent desperately trying to pick her up. We spent the afternoon telling her, well, everything. About her ancestors. How we met. Things we did. Her sister. Her pets. We spoke with Social services, and with lactation consultants. If there's one thing Children's is well-equipped to do, it's death.

They performed the biopsy right in her area behind a screen, while I sat on the outside, the junior resident trying to draw my blood for the milk donor program. I was so dehydrated that it took her repeated jabs and at least 10 minutes to fill a tiny vial. When Maddy was done, we went and thanked her for doing that, for us, for her sister. She did fine, none of her numbers budged. They slowly brought her out, which wasn't any different to us than being under, or any different than last Tuesday really, save for a few more machines and bottles on the IV stand. She hadn't changed at all in six days -- she still had the same expression, the same calm, serene look on her face, the same color more or less, the same akimbo position; our lives, however, had turned upside down and changed on a quantum level.

We demurred bathing her, but then I started trying to gently pick off some tape stuck on her chest, and suddenly there was the nurse with a warm bowl of water, some washcloths, and soap. We declined the nicely offered but hideous pink outfit (we would've declined had it been the most charming embroidered French linen) and opted to simply swaddle her. And then they began, down the row, unplugging everything. The respirator. The IV drips. The monitors. Everything hummed to a stop, blinked dark, and grew incredibly quiet.

I held her first, and then Mr. ABF, and at the 20 minute mark the resident, crying openly, listened for a heartbeat. There was none. She called the time of death, which I honestly can't remember, but assume it was sometime around 8:30 p.m. I have no idea whether Maddy died in my arms or his. I like to think she died in both sets, for I know certainly she died within both of us.

My Dad drove us home in silence. Right before we walked in the back door he turned to us and said, "I don't know when I'll get another chance to say this, but the way you've dealt with everything this week gives me goose bumps." I said nothing and filed past him, asked the family gathered in the living room where Bella was, and headed up to her room.

I lay in the dark, in her bed, crying, looking in her sleeping face, my daughter, my only daughter. All I had left. And I feel asleep, hard asleep, on the pillow next to her.

I awoke bolt upright in the middle of the night still in Bella's bed to the sound of my watch alarm notifying me it was time to pump.