Maddy was alive from 4:45 p.m. Monday, 2/12/07, to 8:30ish p.m., 2/18/07. Six days. It's mostly a blurry roller coaster descent into hell, except for Tuesday night, which was the low point, Dante's lowest ring. Hard to believe there was a low point in this week, but in retrospect, I believe that was it. I cried all week, but Tuesday night is when the howling let loose.
Late afternoon/early evening, on Tuesday when Maddy was roughly 24 hrs. old, a neurologist sat down with us and told us that not only was our daughter blinded with glaucoma, but there were serious problems regarding her brain development. (Definite nomination for understatement of the year). How bad? Should she live (still a big question mark as of Tuesday), she would have severe brain damage.
When it comes to prenatal testing, I'm in the camp that likes to know. After a miscarriage and a lovely daughter, I can honestly say I have no idea what I would do if faced with a bad genetic report at 18 weeks of pregnancy, but I surely know that I would want to know. I would want to prepare myself and my family for whatever my ultimate choice was. I like walking into things eyes wide open, and I'm not one to give over to fate or chance or put up with what the universe deals me. So after a clean amnio and what I thought was a healthy pregnancy, the news that my daughter was severely brain damaged pulled the rug and reigning life paradigm out from under me.
And I panicked. Not so much a metaphor to say that my entire universe came crashing down around me -- on fire. My mind couldn't shut off the blender of disturbance: would my marriage survive? Would we have to modify our new house? Would we have to sell our new house to afford care? Would we go bankrupt? How would this impact our toddler? Would having a probably-hospitalized daughter suck an inordinate amount of parenting time and necessary financial resources away from Bella? Would we ever be able to travel again? Could I be a mom of two where one lived somewhere else? How would our extended family react? Would it be Bella the lovely one and, oh, her, yeah, sorry almost forgot? From personal to monetary and back again, I grew more nauseated by the idea by the minute. I began to contemplate the impractical and poetic: what if I just whisked Maddy away, under a cloak (well, cloak of our volvo) to somewhere cold and snowy, say, far northern Canada, and we lived out our lives in a fur-lined hut on the edge of a community who took pity on us and occasionally dropped off a basket of unknown meat? At least this way Mr. ABF and Bella could have some normalcy. And I cried. Doubled over and sobbed.
It was not a pretty moment for me personally to think this was how I reacted to the health forecast for my own child. For the first few weeks after Maddy's death I felt great shame about Tuesday evening, but came to the conclusion that it was purely an evolutionary, self-defense mechanism on my part. When life hands you an oncoming vehicle, one's reaction is to curl in the fetal position and protect the family. And that's what I did.
A few hours after howling at the moon, and pumping, and falling asleep for 45 minutes, I limped back to the NICU and held Maddy. I honestly can't remember what I was thinking while holding her (everything? nothing?), but by going back and taking her up, I can honestly say that I reasserted myself as her mother. No matter what the future held. I was not happy (there are actually a few photos of us that night, the saddest I have probably ever been in my lifetime), I was not resolved by any stretch of the imagination to deal with any of this (surely still thinking of the easiest way to get up the east coast through Canada -- do I stick to 95? 83?), but deep down I knew I had to get used to a new paradigm, and Maddy was it. And all I understood, all I knew how to do at that moment, was hold her. I assume this was probably an evolutionary instinct as well, that when life presents you offspring, you desperately cling to them and attempt to ward off the lions. And so I did until well after 3 a.m. Tuesday night/Wednesday morning when I finally couldn't keep myself upright any longer and fell asleep for a rough few hours.
I woke up somewhere around 6 a.m. Wednesday morning, Valentine's Day, and turned on the pump to the early early morning news, watching the near-blizzard conditions outside my hospital window. A NICU doctor walked in as was typical when I was naked from the waist up and plugged into the wall, sat down in the chair next to my bed, and told me that around 5 a.m. -- not long after I had left her -- Maddy had a seizure that stopped her heart. They did CPR, pumped her full of drugs, and had her breathing again on a respirator. And right then and there, in that room, in those few seconds, before I had a chance to find some measure of peace in the "my daughter is severely brain-damaged" plateau, the paradigm shifted again: I asked at what point we had to think about how much interference was too much, and he looked me straight in the eye and said "I think we're there now." From that second forward, I wanted whatever was best for Maddy -- not me, not her sister, but her. And if it meant pulling her off her equipment so she could finally rest and stop fighting, than so be it.
As badly as Mr. ABF beats himself up for his panic attack on Tuesday evening (he apparently hyperventilated trying to get Bella to fall asleep, and stayed up until the wee hours online, tracking down the best rated institutions for blind, deaf, and otherwise handicapped children), he arrived at the hospital moments after the NICU doctor left my room, with a totebag of books. On Tuesday, after delivering us a world of devastation, the neurologist told us there was little anyone could do, but: if anything in Maddy's brain was functioning, reading to her would be the best exercise and medicine to try and work any connections that may remain in her poor little head. Her father, after defending himself and his family, showed up ready to be Maddy's father to the best of his ability. And was told that he probably would not have this chance: we were now in a place where we had to think about Maddy's comfort, her pain level, her dignity, and her death. Mr. ABF sobbed, picked up his tote bag, and went and started reading to Maddy.
More than one person told us in the weeks following that "This was for the best." And frankly, I had to agree: for us and for Maddy. It was too much to see her suffer, and I don't want to contemplate what was going on in herself with what little nerve connection she had. But as a grieving parent, I deserve the right to change my mind on this, and I have -- multiple times, sometimes within the same day, or same blogpost. It was not for the best that she died, just as it was not for the best that she was born with a medically impossible set of issues. Babies aren't better off dead, they're better off with their parents. I'm certainly not better off with a dead daughter. I'm a bitter little pill who still can't taste or find joy. There are times I honestly wish I had one more week with her -- one more week to just rub her fuzzy head and read, even if she just lay there, and caused us all sorts of babysitting hell running to and from the hospital. One more book. One more story. One more hold. I can't possibly be better off with my daughter in a box on a shelf.
Or am I? When I dream about Maddy being here, she's healthy. She's a wide, blue-eyed child, who can see me and her dogs and the sky. She can walk, run, see, talk, love, breathe, eat, and be. And I know this is pure fantasy: were she to have lived longer than her 6 days she would've been confined to a bed, a tube, a pump, and drugs drugs drugs for however much longer she had on this earth. Were she still here I would not have had the time to sew Bella's Halloween costume, let alone potty train her, take her to the beach this summer, throw her a birthday party, or just be there for her as her mom should. I would not have time to attend therapy (which I certainly would've needed were Maddy to have lived), write a blog, exercise, or sit by the fire with my husband after an insufferably long no-nap, temper-tantrum filled day. In all likelihood we would not be waking up in our beautiful old house, in our wonderfully supportive neighborhood, wistfully looking at the Blue Atlas Cedar in the yard while contemplating how to renovate the kitchen. The fact is, I don't know if I'm better off or not. There are times that I wonder if Maddy's "gift" as it were was dying when she did. Perhaps Maddy gave us the clear, unmistakable signal that it was time, so we could begin to rebuild as soon as possible, no matter how unspeakably hard that rebuilding might be.
I know parents who had children who were very sick, uncommunicative and essentially brain dead for quite some time before their deaths. Parents who lived at Children's Hospital for years. To a one, they all said they'd do it all over again if given the chance. I'm not sure whether I'm cursed to have only had six days, or lucky.