Monday, February 18, 2008

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.


c. said...

Maddy is simply beautiful, Tash. As I’ve read your recount of those 6 days, I am humbled by your strength during those days after her birth, just as I am by your ability to describe them so clearly now. When C@llum died, in a much different way, he was just that: dead. He wasn’t born alive. He didn’t live for 6 days. He was just gone and I had to come to terms with his loss in just hours. But you, you got to hold on to a little hope for several days. You got to see her, spend time with her, be with her for almost a week. How devastating the whole ordeal must have been. How awful to know that having her was just in your grasp, if the medical team could only figure out how to remove that support effectively enough to keep her alive.

I am just so very sorry. I don’t even know what else to say…

kalakly said...

Oh Tash, Jesus. I wish I knew what to say. I have been sitting here cyring, trying to think of somethig that would offer any sort of solace but I have nothing.
Your Maddy, looking at her beautiful picture, her lying there so peacefully and knowing the horrible losing battle she is fighting, it's just heartwrenching, mind numbing.
The way you and your Mr. ABF. so valiantly fought for her, for her life, for her dignity and finally for her graceful exit from this earth, it is awe inspiring.
If there is anything 'right' about what you have lived through with your Maddy, it is how you lived with her in those too short in number days. You could not have loved her more perfectly, you could not have been a better advocate, you could not have been a better parent for her.
God, I am so, so sorry Tash.

P.S. I think the Resident crying, that she didn't try to make it anything less than the tragedy it was, that she didn't try to sterilize the emotions, that was beautiful.

sweetsalty kate said...

Thank you for sharing her picture. You're right - serenity. She was so lovely.

That cup of coffee made me cry. That and the total silence, like I remember too.. like turning the motor off on a sailboat and your ears almost ringing with the sudden quiet.

She's just beautiful. You were such good parents for her, loving her so much to keep your feet underneath you while you had to ask those questions. This is such courage.

artandwords said...

Oh Tash, I'm crying. I have such admiration for you, for your ability to write all this so beautifully, for your strong grace in the face of such complete and utter loss.

Maddy was beautiful and serene and lucky to have you and E. as parents. She was lucky to have such a dignified and caring end.

orodemniades said...

This is the most heartbreaking story I have ever read.

She is so beautiful in that picture.

kate said...


Maddy is just so beautiful...

meg said...

Tash, what a truly gorgeous little girl. Thank you for sharing her picture, her story, your story.

Your Dad was so right. Just reading this has given me goosebumps. I know how this works, you do whatever has to be done, you don't have any choice in that. All you can do, is care for your child and make decisions based on love. And that is what I have seen in these posts about Maddy's 6 days on this earth. Nothing but love.

I hate when people say, "you're so strong and brave, I never could have done that." I'm not going to tell you that I couldn't have done it, but I am going to say that you are freaking strong and brave. You, Mr. ABF and Maddy. And writing her story out is going to be inspiring to many, many people, including me.

Coggy said...

Tash I'm in bits.
She is so beautiful.
The whole story crystalizes even more seeing her. She looks so perfect Tash, it's hard to imagine the fight she had to make to stay for as long as she did.
I love the fact that you told her all about herself, about you and your family and your stories.

I know I keep saying it, but I am so sorry, I really am.

nina said...

my heart goes out to you and your family, tash.

JuliaS said...

Beautful little girl and your words are so eloquent and moving.

I know there is nothing in the world to say that helps any of this.

My wishes of peace and comfort to you. I am so sorry.

dee said...

Sorry doesn't seem like enough but please know that I am so incredibly sorry.

Your Maddy is beautiful (and Kalakly summed just about all of my feelings up beautifully in her post above.)....

I know that Maddy is here with you in your heart but I know that is of little comfort when you'd much rather have her here with you physically.

You and Mr. ABF are incredible people and incredible parents. I've no doubt that Maddy knew that and felt your love.

I wish I had more words.

The Town Criers said...

Tash, I'm so sorry I got the date wrong. You'd think I could get that right! I'm sorry--for some reason I thought today was the 17th.

This was one of the most beautiful things I have ever read about a very beautiful girl and the world is a less beautiful place because she's not here anymore.

Adrian & Tashida said...

Maddy is beautiful. I know that was the hardest decision that you and your husband had to make. Just know that you will see Maddy again one day. Hugs to you during this difficult time.

Gina said...

What a gorgeous little baby girl.

My heart is in a million pieces - I am so so very sorry for your loss.

Katie said...

Oh, my God.

Your words are so beautiful. She is so beautiful.

Amy said...

Maddy is gorgeous, absolutely gorgeous.

I am grateful to you for recounting your days with your precious girl. It helps me to understand your particular pair of shoes, should I ever wear them or come across them elsewhere.

As I have said all week I have been thinking about you and your family. I awoke today with a sinking feeling, knowing today was your day of loss. You all have been in my thoughts all day. You will always be in my thoughts.

tipsymarie said...

She is beautiful.

CLC said...

I am crying too. She was beautiful. Those 6 days sound torturous.
She was a beautiful little girl. She looked perfect on the outside even though she was very sick inside.
I know you and Mr. ABF were given no choice, but you were both very brave. I am filled with admiration for both of you. I am so sorry she is no longer here. I am thinking of you and your family!

niobe said...

So heartbreaking to read. And, of course, the photo is truly lovely. But it seems like it should be an illustration of another story altogether -- one with a happy ending.

thinking of all of you

Heidi said...

Thank you so much for sharing your story. Your strength is an inspiration. Maddy is one lucky little girl to have such wonderful parents and sister.

Love you.

Caryn said...

Tash, thank you for sharing again, and again, and again. Maddy is beautiful and I'm so sad that she couldn't stay.

Bella has an awesome set of parents.

Much love, Caryn

HLHArts said...

I hardly know what to say. My heart physically hurts for you and for your loss. Maddy is a beautiful girl, and I very much believe she is still with you in spirit, watching over you. I know that is no replacement for taking your child home from the hospital, but I hope it brings you some peace.

Thanks for sharing your story, your beautiful girl, and your amazing strength with us all.

Julia said...

Knowing this was coming sure didn't make it any easier.

I read, and I cried, and then I didn't have the words. I still don't feel like I do. Except for this-- I am still blown away by your grace. I am with Meg here-- it annoys me when people talk about how strong I am, how they couldn't do it. You do what you have to do. So I am not going to say others couldn't do it, I will just say that I believe that nobody, but nobody could do any better by both their children, or by their spouse. My hope is that writing here has helped you through this week, even if only a little.

Maddy was a beauty. I am so sorry she isn't here, and so sorry she never opened her eyes. I am sure that would've been quite a site to behold.

susan said...

Maddy is gorgeous, and I am sitting here, crying, for all your loss.

Amy said...

It is 7:35pm my time and 8:35pm yours. I lit 3 candles 5 minutes ago. They burn brightly in memory of your Maddy. I wish you peace this evening that is all I know I can say right now. I wish I knew you better. I wish I could say this without it sounding corny but I'm going to say it anyway. I feel this way about everyone here but especially you today. I love you. Thank you for everything you do here for all of us in this blog world. Thank you for showing us all Maddy!

Searching said...

I got gooesbumps when I saw there was a picture. Thank you, a thousand times over, for sharing so much of your sweet Maddy and yourself. I have tears in my eyes and love in my heart for you both.

FiestyKel said...

I cannot think of a single thing to say that is comforting or supporting, or vaguely helpful. I just feel so deeply sorry and sad. How does a family survive such devastation? Such a nightmare? I cannot begin to comprehend the pain, I am so very sorry for the loss of your beautiful daughter. Reliving this pain daily, must be hell. Thank you for sharing Maddy with us, she has touched my heart.

Bon said...

and then the silence of after, so wrong and so utterly surreal. Tash, the contrast between that beautiful pink infant face and the reality of genetics hiding behind her skin is so shocking and so cruel, even knowing all along how the story ends. i am so sorry.

and i think you have done her - and you - justice, weaving these pieces of her story into something present and heartrending.

Beruriah said...

Tash, I am just sobbing. Thank you for sharing her story and picture with us. She's just gorgeous.

I wish you'd never had reason to display such grace. But really truly, just as Julia said, no one could have done any better by their husband, children and family.

Much love to you.

G said...

Thank you for giving me a window into the 6 days of Maddy's life. Maddy is, in a word, beautiful.

STE said...

De-lurking to say thank you for sharing your story and the picture of your beautiful daughter. What courage and eloquence with which you honor her, by telling her story -- and the story of your new life.

As a new deadbabymama, I am just beginning the journey, but you inspire me and give me courage -- maybe I can get through the first year, too.

Thank you.

Lisa b said...

She is so beautiful Tash.
I am so sorry you all had to go through this.

missing_one said...

I read this yesterday with much emotion, but just nothing to say.

This epic is such a tribute to your beautiful daughter and the courage of a mother with so much courage and love.
thank you so much for sharing her story.

Thalia said...

What a beautiful baby. How appalling to have to go through those few days with her, watching her but not able to hold her the way you wanted to. Thank you for sharing all of this with us. I don't know what else to say except i'm so very very sorry for your loss.

Anonymous said...

I know there is nothing I can say, but I think you have a good idea of what is in my heart. I'm sorry.

Which Box said...

I meant to comment yesterday and just had no words. Too many tears. For you, for Maddy, for your family, for all the crap you and Mr ABF have put up with from your (his) family, for Maddy. For all of it.

I liked what Meg said. When you're in the middle of it, you just do what needs to be done. From all accounts, you did it as well as was possible.

Megan said...

I wish she was with you, Tash.

Searching said...

Sending you a hug today.

Aurelia said...

I'm sorry Tash. This is so so sad, thank you for telling the story to us.

Stacie said...

I am so very very sorry. There are no words.

janis said...

my heart bleeds for you. I cannot imagine the strength needed to re-cap those fateful six days; and also the desire to put it down in words. Thank you for sharing. Big hugs to you! Maddy was truly beautiful.

Cheek said...

I began reading your archives after Glow in the Woods went up. I don't know if you'll ever see this, but after reading this series of posts, I had to comment. Maddy is so beautiful, she took my breath away (and not in that ambiguous, "is-it-a-compliment" Seinfeld way). I felt moved, awed, privileged to see her.

Thank you for sharing her story and yours, and I am so, so sorry that this beautiful girl could not stay with you.