Thursday, July 22, 2010

Guilt Trip

I had another guilt dream last night. In this one, I was taking care of someone else’s baby (I have no idea whose). I laid the baby back in a sink to give it a bath. I turned the hot water spigot on first and before I could even turn on the cold water spigot, the baby started to scream. I realized immediately that the water had come out of the spigot scalding hot—it had not taken the customary minute to warm up like it usually does at my house. I looked down and saw the baby had a fiery red blister coming up on its right arm, just where the water had hit it. I was beside myself—I started to try to explain to someone what had happened, that usually the water has to warm up and I had no idea it would come out so hot. Whoever I was talking to looked down at the baby. I looked down with them. We both saw that in fact, there was no welt there at all.

Maybe this is my subconscious struggling to help me forgive myself. I really have been trying. I just re-read the section of Harriet Schiff’s book, Bereaved Parents, about “Bereavement and Guilt.” There, she says, “People logically should not blame themselves for things they did not know they were mishandling.” I have turned this over and over and over in my mind, trying to make it stick (and of course, trying to remind myself that really, the judgment we made about waiting a few hours to go to the pediatrician probably was not even “mishandling” the situation). Certainly it is only in the unforgiving light of hindsight that I can see that maybe there were signs of meningitis that an aggressive ER doc would have seen, if we’d only taken her to the ER first. I read recently that leg pains are now seen as one of the early warning signs of meningitis, and immediately remembered that when Hudson woke up at 4AM, her fever having risen since her Tylenol dose an hour earlier, I touched her leg and she shrieked. That was the first time I remembered saying that something seemed wrong. But I just figured she felt so crappy that she didn’t want to be touched anywhere, didn’t want us to mess with her at all. Even now, I have no idea whether she really had leg pain, because she couldn’t tell us what hurt. Hindsight is so incredibly (even if falsely) clear.  And it is so incredibly agonizing.

And sometimes it’s more of a generalized feeling of guilt, not even related to the decision to wait a few hours for the pediatrician to open rather than going straight to the ER. I just think about her not being here, enjoying all the magic in this world that she adored. I think about all the things she’ll never get to learn or do, all the places she’ll never get to see, all the adventures we’ll never have together, and I just have the overwhelming sensation that it is my fault, that I should have prevented it. And that everyone looks at me and thinks the same thing—after all, I am Hudson’s mother (and yes, I know this is not the case, so please don’t feel the need to reassure here—I am rationally aware that this is totally irrational).

I have been trying so hard to get to the bottom of why this keeps plaguing me, despite all evidence that it should not, in hopes that logic will ultimately prevail. Last night, I asked Ed if he was dealing with any feelings of guilt. Once, a while back, when I was going through one of these bouts with wishing we had taken her to the ER instead of the doctor, Ed said that sometimes he felt as though maybe if he’d also gotten up when I was up with her overnight, he would have seen that she looked pretty bad and would have helped me decide just to take her to the hospital. At the time, I told him I didn’t want to hear that, because it sounded as though he thought he might have seen something that I missed. But he explained that he just meant that I definitely shouldn’t feel bad because he didn’t even get out of bed when all this was going on. So I asked him about it again last night, wanting to drink in whatever wisdom he had that kept him from getting dragged down into this like I do. He said that while he does get that feeling every once in a while, he just believes that what happened to Hudson was simply not in our control, no matter how much we wish it could have been, and that even if we’d taken her to the ER instead of the doctor, it would not have made any difference.

In my heart, I think I know that this is true. I started wondering last night if this sense of overwhelming guilt is generally stronger in bereaved moms than it is in bereaved dads. After all, I was primarily responsible for Hudson’s life and nutrition for the first twenty-one months that she existed. For the nine months that she was in my belly, I was responsible for trying to make sure that she got all the nutrients she needed to grow, for shielding her from all manner of teratogens, for giving her a safe place to develop into the amazing 7lb 6 oz creature that emerged from my body on December 1, 2008. And then for the next twelve months, I was still her primary source of nutrition—both her day and mine revolved around a seemingly endless cycle of nursing, pumping, and feeding, for a whole year, well past the six-month mark when she started eating solids. (None of this is to discount the extraordinarily important role that Ed played in our family during all of these times—one of my favorite pages in the book The Very Best Daddy of All, which I gave Ed for Father’s Day when we were pregnant with Hudson, says “Some daddies take care of your mama, so she can take care of you.” And of course, that is only the tip of the iceberg of what Ed does for us.) Maybe the real source of this guilt is not guilt at all, but anger and frustration at this total and utter helplessness (and many of you have touched on this before, including my friend Kate, in her comment on my first post about this). When you so wholeheartedly believe that you are in control for so much of the time, it is difficult, if not impossible, to concede that maybe you are not in as much control as you thought. Maybe you are not in control at all.

I think about parents who lose their children to birth defects, lifelong illnesses, cancer, or accidents away from home, parents who had absolutely no control over what happened to their kids and I think, “Well, at least they will never feel like they had any responsibility for their children’s deaths.” And then I think, “What the fuck kind of thinking is that, Mandy?” Because I am absolutely certain that every parent feels responsible, somehow. I recently heard an interview on Fresh Air with comedian Louis C.K.— he said during a standup routine once that a parent’s primary job is to make your kid “not die.” And I thought, “Shit, I couldn’t even do that.” As parents, any outcome that results in us outliving our children feels like utter failure, no matter how illogical or irrational that may be. And yet, every one of us has to come to terms with the fact that no matter how much we love our children, we cannot control everything that happens to them any more than we can control our kids themselves. It is a hard truth, but I know it is the truth.

I hope (God, I hope) this is at least the beginning of my making peace with this monster.


  1. Mandy, This is melissa F.,

    this grief is just a big rotten onion with lots of layers to peel off isn't it? I'm reminded of some of my feelings of guilt with elijah's autism and various other diagnoses: if I hadn't insisted on a midwife who botched things? What If i hadn't taken medication during pregnancy? What if I had insisted they use forceps instead of repeatedly trying a vacuum extraction, maybe he wouldn't have had so much trauma and now wouldn't have this life-long issue....i think there is a maternal guilt that is different from what men experience in that it has shame attached...What kind of a woman am I if I can't even do this right? Something about it strikes at your very womanhood. Just wanted you to know I can relate and what helps me is just seeing it and trying to then turn my attention to a less painful part or even just vacuuming or doing something else....

  2. If we had a dime for every time one of our kids felt sick and we treated it lightly (and usually correctly)...

    In poker, great play doesn't always equal a victory. Luck (good or bad) is always at play to some degree. The most a player can hope to do is make the best decisions he/she can, with the information available at the time. You set yourself up with a good probability, but the outcome is out of your hands.

    That is life, indeed.

    I have always known you as a smart and thoughtful person, Mandy. You guys did what every good parent would have done with the limited information you had. Hudson was so very fortunate to have had you both.

    Love you. Jennifer and I think of you and Ed every day.

  3. Mandy--I want to share one effect that Hudson's death has had on me: I notice acutely the deaths of other children in a way i didn't before. Before I'd read a headline in the Washington Post and feel sad, but it would leave my mind within hours or days. Now I not only think of Hudson daily, but I think of the 6 year old girl that drowned at Turkey Thicket, of the 11 year old boy visiting DC (probably so excited for a big trip!)who was struck and killed as a pedestrian in Georgetown, of 16 year old Brishell Jones who was shot randomly and of her mother consumed in grief like yourself, of the niece of a woman in Brookland who went rollerblading without a helmet, hit a fence, and died instantly, and then I think over and over of you. These separate, terrible threads share the common theme of being completely random, completely horrible, and involving what ifs. What if the lifeguards and parents were more attentive? What if she had on a helmet? What if Brishell decided to skip hanging out with her friends and hang out with her mom? What if the crosswalk and signals were better? And in your case, my question is always, What would I have done? And the answer is always, "Nothing Different." Because in no case is your question I ask in my head the question of going in 12 hours earlier--Anyone who has been a parent has had a sick child has dealt with the messy, anxious, worrying feelings of what to do, what to give, who to call, and how to make our child feel better. You did all of those but you aren't a specialized, pediatric emergency doctor. Maybe if you were a trained neuroscientist, your outcome would be different, just like maybe the little boy from Texas might be alive if the driver who hit him was an expert in pedestrian safety.

    You are a parent like the rest of us, who isn't trained to recognize early signs or symptoms, and instead used your brains,LOVE, and best abilities. I know as I struggle with all the questions above that the answer ultimately SUCKS EITHER WAY. What is so agonizing for those of us who are trying to help you is knowledge that you we've all been in your shoes (sick child, fever, other symptoms, waiting for the doctor's office to open), and by LUCK walked away unscathed. NOT because we are more in-tune, more aware, or better parents, because You clearly have me beat on that front. Erin

  4. Amen to what Erin said. You clearly did the very best you could by Hudson. Hugs.

  5. Hi Mandy, your many readers may be interested in knowing the symptoms of meningitis. I've eliminated those that would not be clear in an infant or toddler, like a headache, and things that would obviously cause anyone to go to the hospital, like a seizure.

    Here's what you might notice in an infant or toddler: A high fever, vomiting or nausea, sleepiness, sensitivity to light, lack of interest in drinking and eating, constant crying

    Of course, if your infant or toddler has the flu, here's what you might notice: Fever as high as 103 to 105, chills and sweats, dry cough, fatigue and weakness, nasal congestion, loss of appetite, diarrhea and vomiting.

    The first set of symptoms, as we know too well, can lead to death in a matter of hours. The second resolve themselves 99.9 percent of the time. Now that's scary.

  6. It seems that you don't blame your pediatrician, even though you took Hudson in and s/he did not catch it. Why don't you blame the pediatrician? (Rhetorical question). Clearly, you know in your rational mind that you are not to blame, and you are wisely trying to sort out why you still feel guilty. I just had the thought that maybe looking at it from another perspective would help. Wishing you peace with this monster called guilt.

    Susan H.

  7. When I read your posts along this line of thought, I keep thinking how greatful I am for medicine. If you were on the prarie with Laura Ingels and the same thing happened, you would have had no option. But that day you took her in, you acted. You could do something, you brought her to the "experts" and they tried their best. In the end, the result (in the words of Dr. X) was still pretty "fucking terrible", but at least you could do something, at least you tried. You did what you could with what you had. You aren't and weren't a clarivoyant. You brought her to the experts, and still Hudson left. It is not your fault. It isn't. It can't be, it is impossible for it to be.
    God give you peace, and that you may accept it.

  8. Mandy, guilt is a terrible monster and, as I have said before and believe with all of my heart, you bear no blame, even if you feel guilt.

    My father is a surgeon and has lost very few patients in the operating room. However, I know the names of the ones he did, their histories, how they passed --- I know these details b/c he obsesses about them, analyzes "what went wrong," and wonders how he personally failed them. He was supposed to save them; it was his job. He doesn't discuss the thousands of lives he's saved, he barely mentions the successes, the near-misses, the miracles.

    Our job as parents is not unlike that of a doctor. We are responsible for the care of our children in a world where human knowledge (like science and medicine) is imperfect and luck often plays as much of a role as behavior. But you MUST remember that even in the awful light of Hudson's passing, you are intensely and wonderfully good at your job as a mother. Anyone who saw you with Hudson knows it.

  9. My nine month old had very similar symptoms last week...I rushed her to the pediatrician...she had a virus and is now ok. Mandy, you did what all of us would have done. You are a fantstic mother and a true role model to many of us. Thinking of you and Ed everyday.
    Love, Mary Henry

  10. I have no experience with nor insight into your situation, but wanted to say to that part of you that chooses to publish your story, that I'm reading.


  11. My Friend Mandy, I can't take the pain or the demon of guilt away (maybe I can banish the demon...I am from New Orleans my dear), but perhaps I can offer some room to breathe. Of course there are hundreads of us waiting in line to hold some part of the pain/guilt for you whenever you decide to set yourself free.

    At any regard, one of my favorite shows on cable was "Six Feet Under". I am not a morbid person by any means; however, I was really drawn to the characters and the random ways in which people died. Death often came without warning for most and some through a long term illness.

    What I took from the show is that each of us, including Hudson, has an appointed time to be born and an appointed time to die. Even when people survive a terminal illness far beyond what the doctor's predict they would, one can call it a miracle or accept that it wasn't their appointed time to die. What I find truely tender though, is that you and Ed were chosen to be Hudson's parents for her brief time on earth; and since I believe in Angels, perhaps that is what she was created to be. Hudson lived a very happy and pure life; sounds to me like the definition of an Angel. Wow, you and Ed were parents to an Angel...a real Angel...and some of us got to bask in her marvelous light, what an honor. I bow down.

    The pain of her loss is deep and devastating; oh but her light...her light, I can see it in my sleep.

    Renee xoxoxoxo

  12. I think there are two layers of guilt that you are struggling with. There is the guilt that arises because you fear there is something you could have done differently that was within the realm of your control and consciousness that would have saved Hudson from this vicious bacteria. (which of course, you rationally know there wasn't) But there is another layer of guilt that arises, because, in fact, you *were powerless* to save her. Even though you don't want to think there was something you should have done that would have made a difference because you would never forgive yourself, part of you *does* want to believe there was something that you could have done. Because feeling powerless to protect your child's life is maybe just as awful as knowing you didn't do something that you could have (especially in the short term). I think the desperation to have Hudson back and the desperation to feel like something this awful could be prevented from happening to any other children you may have keeps your mind looking for a way that you could have saved her.

    Indeed, the world is a beautiful place but it is also a terrible, cruel place. It's hard to accept that we can bring children here and not be able to assure that they will be safe from the horrors of it and live only to enjoy the wonders.

  13. Mandy,

    I was only recently introduced to your blog a week ago. A month ago, I scheduled a consult appointment to get my first tattoo. I had it done this past weekend. It is simple but amazing and I love it. As you refer to Hudson as your little monkey, I refer to my girls (6 yrs old and 17 months old) as my 2 little birds. I got 2 precious little birds on my left upper back. My reasoning for that place 1. because it's the only area of my body I don't think I could ever get stretch marks. 2. my back is by far the strongest area of my body, and well, it seemed an appropriate place to carry my 2 little birds. I have always had a 'things I want to do in life' list. Since at this point in my life I can't leave the country or go on tour with a rock band, getting a tattoo was one item I could definitely check off. Today I shared my tattoo with a close friend. I started out by telling her about my list. She seemed concerned when I first started talking and after I was finished and showed her my 2 little birds, she confessed that when I started talking she was about to ask me if I was dying. I giggled and replied, no dear, not today as far as I know, I am living!

    I showed it to my oldest daughter just yesterday. She loved it and I told her it was her and her sister, my 2 little birds. She asked if I could ever wash it off and I told her No. She smiled and said, So we will always be together with you. I said yes. I am not promised tomorrow with either of my children, but this somehow confirms to me that they are always with me and always will be in many forms even if not physically.

    Thank you for sharing Hudson with us. She touches my life and I look at things differently, for the better. Sorry to talk so much about a tattoo when you just shared such meaningful parts of Hudson's life in this post, but your mention of it really made me just have to share my experience with you. Keep feeling, loving, remembering and sharing.

  14. Oops. My first time posting comment to a blog and learned that my comment is placed incorrectly, should be in response to your Just Another Way to Remember post. It is out of place and perhaps inappropriate here. My apologies.

  15. Mandy,
    Guilt is such a powerful part of grief. I think it is our mind's way of distracting us from the shattering pain of loss to ponder how we could and should have handled things differently. There will come a time when the force of feeling that you didn't do enough will ease. But I think as grieving parents we do try and figure out how we can reverse time and change our actions to get the outcome that gives us our children back. I know in the weeks and months after Jordan died it didn't matter how many people told me that it wasn't my fault (including my husband). I couldn't shake my belief that if I had only bought him a bus ticket to NY instead of allowing him to ride with friends, he wouldn't have been in the car that killed him. It took a long time before I was able to say to myself,"It's not my fault. I did the best I could." Even as I say it my voice still shakes.

    Please be gentle with yourself. Feel what you're feeling and know that you are not alone.