Thursday, January 20, 2011

The Question With No Answer

When I first heard that Gabrielle Giffords had survived a close-range gunshot wound through her brain, I was absolutely stunned, but as the doctors kept saying, I knew there was a frightening vigil ahead for her family as they waited to see whether the swelling in her brain would stop. Then I read that they had removed pieces of her skull to relieve some of the pressure. Then she opened an eye and moved her limbs. Then the doctors removed her ventilator. And then today, I heard that she was able to stand and read get-well cards. Tomorrow, she’s going to be moved to a rehabilitation hospital.
With each new piece of encouraging news about the congresswoman’s “miraculous” recovery, I grew more and more envious. I’m not proud of that reaction—in fact, I’m very ashamed of it. The envy does live alongside great relief for her family and hope for her complete recovery, but the fact that it lives at all feels awful. I’ve thought about this every single day since the shooting but have been afraid to put my thoughts into words.

Why can modern medicine save a 40-year-old woman with a bullet through her brain but can’t save a 17-month-old little girl, whose brain is supposedly more resilient than an adult’s, from an infection? WHY? Why didn’t the neurosurgeons remove parts of Hudson’s skull, or at least drill a hole in it, to help relieve the pressure? Why do so many other families get near-misses and miracles with their loved ones, but we didn’t?

I’ve written before that until the wee hours of Tuesday morning, about 8 hours after Hudson was diagnosed and admitted to the PICU, I had complete faith that she was going to be OK. I was still terrified, but I simply could not fathom that the doctors could not treat and cure an INFECTION (again, I had been advised to avoid Google—advice I took—so I had no idea what we were really dealing with in terms of fatality rates and so on). In the middle of the night, though, she started having seizure-like episodes, which seemed to me like a bad sign that things were not going well in her brain, and then, horribly, one of her pupils did not respond to the hourly checks with flashlights that the PICU nurses were doing. I knew then that it was very, very bad—I had been with Jessica’s family in the hospital when her mom was stricken with Rocky Mountain spotted fever, and the news that her pupils had stopped responding to light was the beginning of the end. The CT scan they did on Hudson’s brain immediately thereafter showed significant swelling, so they pulled out all the stops to try to relieve the pressure—gave her a massive dose of Mannitol (a diuretic that is supposed to help reduce intracranial pressure) , sedated her and put her on a ventilator to control the amount of carbon dioxide to her brain, and kept her elevated in the bed. They may have been doing other things, but those are the things I remember. At rounds a few hours later, I asked the attending physician what we were hoping to see if Hudson was going to recover. He said we were looking for some signs of voluntary movements, like trying to pull out the vent tube, as the sedation wore off to show that her brain was still working. Not long after that, I looked up and saw Hudson, eyes still closed and still heavily sedated, lift her left arm and reach for that tube. My heart leapt. Surely this was a sign that they’d been successful in reducing the pressure enough to allow her brain to start recovering. The neurologists came in and did their series of neuroreflex tests—she passed them all. Her pupils were responding evenly again, her toes were curling in response to stimuli on the arch of her foot. No one could explain it, but it seemed to bode well. There was hope. Maybe we were going to get our miracle.

A few hours later, in the middle of the day Tuesday, still not even 18 hours after she’d been admitted, Hudson’s pupils stopped responding to light at all. Another CT scan (which took so long that we were not even sure she had survived it) showed massive swelling all over her brain, a catastrophic injury from which she was unlikely to recover—she would likely either suffer significant brain damage that would impair her in every way for life or she would die. The doctor said that he hoped he would be proven wrong, but those were the likeliest scenarios.

I can’t count how many times, in the hours before and after that CT scan and in the many days since, I pictured Hudson recovering in a general ward at Children’s, sitting up in her bed in a hospital gown covered with bears, IV full of antibiotics still taped securely to her hand with a wooden board, eagerly downing her first Jello with a grin, playing with all the toys people had brought her as she recuperated, laughing at the hospital clowns as they made the rounds each day, singing Twinkle, Twinkle Little Star with them. How many times I pictured us trying to keep her entertained and satisfied for the three to six weeks kids usually had to stay in the hospital for treatment for bacterial meningitis. Even after we knew the coma was probably permanent, I tied an Elmo balloon that one of our friends had brought for her to the foot of the bed, where it would be the first thing she would see if she happened to open her eyes. The first time our pediatrician stopped by, after the first CT scan but before the second, she told us that she firmly believed in the power of positive thinking, so I tried so hard to think positively. We tried not to cry openly or audibly in the room. We continued to talk to Hudson and read books to her and surround her with the stuffed animals she loved.

But it was not to be. The next time the pediatrician stopped by, she cried with us. The infectious disease doctor cried with us. The nurses cried with us. The hospital clowns came to Hudson’s room and softly sang Twinkle, Twinkle Little Star while we lay in the bed with her and cried. She never opened her eyes or moved her limbs or took a breath on her own again. She never got to see her Elmo balloon or eat hospital Jello. They never removed her vent until she had been declared brain-dead. And then we held our little girl in our arms as her body died, too.

And so today, for the millionth time, I ask the unanswerable question. Why? Why her? Why us? Why did our sweet, amazing, precious child who brought so much joy to the world, why did she not get her fucking miracle?


  1. There is no reason she did not get her miracle. And that is why it is so hard to comprehend. A true tragedy because she was so innocent. When I look at my children I see pure beauty. I know that is what Hudson was to you and it's not fair that she got this stupid infection in the first place and that it was untreatable in the second place.

    I am in tears for the recovery that never was this afternoon. Thinking of you and sweet little Hudson.

    Erica Marcoux

  2. I also rage and cry with you, Mandy. There is no explanation. I hate life's unfairness and cruelty. Thank you for your painfully honest writing, admitting your truest feelings.


  3. There is no reason why Hudson didn't get her miracle --
    As usual, I have to (((hug))) and commend you on your ability to get to the heart of the matter -- you are SO strong, you are such a good mama -- and unfortunately, there aren't any answers for so many of life's tragedies.
    It did occur to me, though, that you and Ed were Hudson's much love, such amazing parenting, two unbelievably unselfish parents -- you two were Hudson's miracle. Mariann

  4. I've thought about this for you so many times. There's no answer. Thinking of you all the time, friend...

  5. Mandy,

    I had those same thoughts you did about Gabrielle Gifford.

    Why some and not others? I still question why my beautiful child has been robbed of her life...and me as her mum, and Dempsey as her sister......and not some of the monsters in this world?

    Life is cruel sometimes and I don't think there will ever be answers as to why a beautiful, innocent, full of life and loved little girl was taken.

    Sometimes through this grief joureny it's as if there is no sane answers to the insanity of it all.

    Sending you a hug,
    Diana x

  6. Wishing Hudson had recieved her miracle right alongside you.....thinking of you tonight mama xoxoxo

  7. i am a stranger to you, but i cry with you often. hudson deserved that miracle, and so did her parents. to have to make sense of not getting that miracle, to have to figure out how to go on without it is an unimaginable task you've been forced to take on. i'm so sorry for you and all the pain you have to endure.

    i think if i were in your position i'd be so angry i wouldn't be able to function. but you have the grace to feel ashamed over your envy of someone else' miracle. you are remarkable, and you have absolutely nothing to feel ashamed of. i hope that sharing those feelings with all of the people who read your blog absolves and relieves you. heaven knows you deserve respite in any and all forms possible.

  8. I don't know, Mandy...any more than I can tell you why Matt was the only person out of 80,000 to die at Bonnaroo. Why him? Why my amazing, handsome boy with the dancing blue eyes and infectious smile? Why my child, whose loving and generous spirit touched everyone he knew? Why Matt, who was doing so much good in his adopted city? Why someone who was SO loved by so many, and not some drug-crazed addict with zero to none as far as redeeming features? I don't know...we will never know. All I know is that life is not fair, and Hudson's being so special, being your beautiful, loving little girl was no more protection for her than being such a wonderful young man, admired and loved by so many, was for Matt. There is no answer to the why...

  9. There is no answer. In 1986, when the space shuttle Challenger exploded, I went to church for the first time in years. (And the last time.) I was hoping for an answer. I watched one of the astronauts' mothers on TV as things went horribly wrong, and I knew that she knew before anyone else. The priest, in his terrible sermon that day, said, "It was God's plan, and it was not random." I refused to believe that then, and I refuse to believe it now.
    Some things are random, senseless, and cruel.
    Hudson's lack of miracle is one such event. I weep with you, Mandy, and think of you often.

  10. I've wondered the same thing about Giffords and the other victims. How does a 9 year old girl shot in the torso not survive when a woman shot through the HEAD does? I just don't get it. This doesn't mean I don't hope for a full recovery for Giffords. Of course I want her to have her miracle. But I want others to have theirs, too. I want to make sense of it all. I want Hudson to have gotten her miracle. But she didn't. Why? I don't understand it and I never will. There is no explanation, no justification or rationalization that will ever make sense in my mind.

    There's no shame in your envy. You'd be crazy not to wish that miracle for Hudson.

  11. Crying with you tonight Mandy.

  12. I'm so sorry, Mandy. There is no reason, and it's so incredibly sad. I like what Mariann said above, that you and Ed were Hudson's miracles. I believe that must be true. Her life was so short, but she was so loved all the way through it.

  13. With closed eyes, we weep and shake our heads in complete disbelief at the unfairness of it all. Sending you love...Renee

  14. Because there was some horrible combination of bacterial virulence and host factor on Hudson's part that created a perfect storm for catastrophe. The same way there was something intrinsically wrong with Veronica's anatomy that predisposed her to sudden death, when the vast majority of kids with her specific heart defect present subacutely, get diagnosed, have surgery, and go on to live a normal life.
    You, me, Hudson, Veronica were just incredibly incredibly unlucky.
    Which leads me to miracles...kaka, I say. Just dumb luck. And not "by the grace of God go I." No, you just got lucky. God has nothing to do with it.
    Sorry to sound so harsh and cynical, but that's the only thing that makes sense to me.

    Hugs, Mandy. We've all felt that jealousy. Don't be ashamed of it. It's natural. And I bet the parents of that little 9 year old girl are thinking the same thing.

  15. I don't know why. I believe we will know one day why we suffer, but for now, there is just the pain. I'm so sorry, Mandy.

  16. Mandy,
    I was home one afternoon early from work and caught Oprah. She had a husband and wife on the show, who lost all three of their children in a fatal car crash. The mother and grandmother were also in the car but survived. The children were ages 2, 5, and 7, two girls and a boy. The parents were lost in their grief then became pregnant with triplets, two girls and a boy. They gave each of the babies the middle names of their deceased children and began parenting again.
    The couple each shared that some of the grief has lifted with having the new babies, life is happier and each day gets a bit easier because of the joy of the babies. They talk about the three older children every day, have many pictures of the older children in the house, and have family picnics at the graveside.
    I just hope for you and Ed that some of your grief and sadness lifts with the birth of your son. Denise

  17. Every time I read these flashbacks, glimpses into your life, I feel my broken heart shatter again. I feel my tears flow from within as I imagine your world without your daughter. And I think about how much of this you must hate- how so many of us hate it- right through the ups and downs of life after the death of a child.
    I wish there were answers- a fair playing ground where everyone gets their miracle- not just some.
    I feel for you because I know that no matter what the future brings, no matter how many children you go on to have, your oldest daughter will always be the one part of your life that is broken, missing, present yet so seemingly untouchable.
    I know that happiness will find ways back into your heart and your life, and yet I also know that it might always be tempered with the sadness of Hudson's death.
    I think that learning to live with that balance- the understanding and realization of both sides- is what so many of us struggle with every day.
    Love and light to you mamma...

  18. Oh Mandy. I wanted a miracle too. I think that my husband and I followed that same pattern, of being absolutely certain that everything would be fine and the problems just became worse and worse.
    It seems so cruel to have your hopes raised by that arm movement only to have them dashed. Even though I know how the story ends, I felt my heart lift a little and caught myself thinking that perhaps there would be a miracle this time.
    I hope that, somehow, Hudson knew that Elmo balloon was there. xo

  19. No answers. Not, most definitely, part of God's plan. I never thought I'd lose a child to an infectious disease; that was something that my great-grandmother went through, but something that never cropped up on my worry list. Eventually you'll come to terms with this as something that just IS, but it takes a while. I pray for you and Ed often.

  20. As always, I am with you Mandy. I asked the same thing after the shooting. I ask it daily: why some die and why others don't?

    I have come to believe that it is random and part of the fagility of being human. And it sucks, it is unfair.

    Thinking of you.