Wednesday, June 30, 2010

The Worst

I am about to write what I hope will be the most difficult chapter of this journey to write about (wishful thinking, I am sure). It is hard for me to imagine anything worse than this, and if there is something worse, I don’t want to face it. I’m hoping that by writing about it, it won’t keep thrashing me whenever I think about it (“If I get it all down on paper, it’s no longer inside of me, threatening the life it belongs to.” Thank you, Anna Nalick).

The worst is this: Why didn’t I take Hudson to the ER at 4AM on Monday morning, rather than 2PM later that day? As I write this, I dread, dread, dread the internal reactions (for I hope no one would be so cruel as to actually respond this way) of all the mothers and fathers, and non-mothers and non-fathers, some of whom will certainly think, “Well, why didn’t she take her to the ER? I would have taken her to the ER.” This is the worst.

Why, after paging the doctor on Sunday, why when the one thing that she said we should be concerned about happened—the fever not responding to medication—why didn’t I pack her in the car that second and take her to the ER? Why, when somewhere inside I knew something was terribly wrong? My mommy instincts had been spot-on during the entire 17 months since Hudson was born. Why, when it mattered the most, did they fail me? I spent agonizing time this morning sobbing and crying out (to no one in particular), “Why didn’t I take her in? Why didn’t I take her in?” This question (and its corollary, “Would it have made any difference?”) lingers in the background of my every waking moment.

My answers? Who knows? Because it was 4AM and I knew the doctor’s office opened at 7, so I figured if I could just get the fever down with a cool bath, we could wait it out until then. Because I was trying not to be an overreactive parent. Because I was only worried about the fever getting too high, not even thinking about what could be causing it, and assuming it was no worse than a really crappy virus that would resolve itself. Because just nine hours before, she was chipper, ate a huge dinner, and seemed like she was on her way to a full recovery from a bug. Because just five hours before, she’d taken the Tylenol, perked up and was chatting in our bed until we decided it was probably time for her to go back to sleep in her own room. Because I mistook her lethargy for being tired from fighting off a fever the night before. Because never, in a million years, ever, ever, would I have dreamed that she was fighting off a rare and frighteningly fatal illness.

When I start to think this way, I try to remind myself that I did take her to the pediatrician as soon as they opened. And the doctor, who had seen Hudson pretty regularly for all the normal daycare illnesses, walked in, saw Hudson lying across my lap, and immediately said, “She is sick.” But even hearing the whole history, including the fever not responding a few hours before, she was ready to send us right back home with more ibuprofen and Tylenol. It was only because I started to cry in the office (again, I knew something was wrong) that she agreed to do a full work-up. And then sent us home to wait. I try to remind myself that the only reason we even ended up in the ER at 2PM when we did was because Hudson was refusing to eat or drink and I was concerned she was getting dehydrated, so I called the doctor again and we decided we should go on to the ER for some fluids. But the doctor assured me they would do no more evaluations because Hudson had had a full work-up already that morning. I try to remind myself that when Hudson left the pediatrician that morning, her white blood cell count was, in the words of the PICU Fellow in charge of our care, “stone cold normal” (meaning it would have been so a few hours earlier at the ER as well).

But even though I know these things, and I know I don’t have a crystal ball, the “what ifs” are still enough to kill a parent. My job was to protect her. My job was to know that something was wrong. My job was to take her to the ER and insist that they figure out what it was. I keep imagining that the ER docs would have been more aggressive, that they’d have seen her slightly swollen eye (a symptom the doctor had said when I called in on Sunday was most likely just related to the same infection, probably an upper respiratory something or other, that was causing the fever), heard about the unresponsive fever, somehow suspected meningitis then, and gotten antibiotics into her 12 hours earlier. And that the antibiotics would have worked then. And then I would have saved her. And then she would be with me now.

Of course, I have no idea whether any of these things is true. And I know there is no point in this kind of thinking. But this is what bereaved parents do. No matter how close they were to, or how far they were from, the catastrophe that befell their children, they wonder what they could have done differently so that their children would still be alive. I know this. So I try most of the time to avoid this kind of thinking. But sometimes the grief just takes me there, and once I’m there, it is hard to climb out. I try to remember what I just read in Elizabeth McCracken’s spellbinding memoir about having her baby die in utero at 41 weeks: “This kind [of thinking] is not so bad, the If I Did One Thing Differently, Then Maybe Everything Would Also Be Different sort, a vague, philosophical itch: yes, if life were different, then life would be different. Such thinking feels like science fiction, stepping on a bug in 20,000 BC and altering the course of history.”

But it doesn’t feel like a vague, philosophical itch or science fiction to me. I was Hudson’s mommy. It was my job to protect her. And the fact that I didn’t, or couldn’t (whichever it is—it doesn’t really matter, does it?) is just the worst.


  1. Love your way. I can't imagine how hard that was to write.

  2. Mother once apologized to me for being a terrible mother(Can you imagine?). I simply told her that she did the best with what she had. She smiled. I know that this doesn't help much but, it's all I got.

  3. Mandy, I truly hope that writing this entry (and this blog generally) brings you some peace. I'm so sorry this weight is sitting on your shoulders; it should not be. You are Hudson's mother; your job was to love her and take care of her to the utmost of your ability. You did that. You did that with grace, finesse, humor, and your whole heart. You're still doing it. A child can't ask for more, even if a mother wants to give something more, like you wanting to have a preternatural ability to diagnose and cure your baby before the doctors could. I hope that when the fog of "what ifs" weigh on you, the reality of "what was" --- you gave your child your everything --- lifts some of it.

  4. Mandy,
    Have you read Ayelet Waldman's novel, Love and Other Impossible Pursuits? If you haven't and you're interested, I'd like to send it to you -- not only because it's about a mother who lost her only child to SIDS but because a lot of what you've been expressing is echoed in her narrative and because in the end it's a hopeful book.
    I'm thinking of you and sending all the support I can.

  5. Mandy,

    1) I would have done exactly what you did. I would not have gone to the ER. My daughter once had a 104 fever. I called the doc in a panic, and he assured me it was no big deal. It was no big deal. It usually is.

    2) I would have done the EXACT SAME thing, because even when you know something is wrong, you want to forestall it. You want to deny it, and by continuing to think that you don't need to go to the ER, that is what you do. When I had a one-year-old covered in bruises on Thanksgiving day, I continued to make a marshmallow salad. I didn't want to face the reality that there was something wrong until hours later when his forehead was covered in huge, goose-egg bruises. (He is fine--he recovered, but he could have suffered brain damage in those intervening hours.)

    I completely understand why you are thinking this. I have thought a thousand times since Hudson's death, why didn't I tell Mandy to take Hudson to the ER. I saw your FB post. I recently had a colleague whose sister lost all her fingers and toes to meningitis. I could have sent you a message and told you to take her to the ER. You doctor could have sent you straight to the ER. I am so sorry that you are having these thoughts, but know that you are not responsible and no reasonable parent would have done anything differently.

    I am sure that

  6. FYI--"Joe DeLuca" is actually Hannah.

  7. Mandy, I too am so sorry you have to weigh these "what ifs." The fact is obvious that you are a phenomenal mother. And just so you do know, I think the infinitely more common internal reaction of your friends and others (I know it has been mine, over and over) is, "I would have done the exact same thing Mandy did."

  8. As a parent who's agonized over Hudson's case, I know I would have been at best as diligent as you were, at worst, less so. It's dumb luck that I am not in your shoes. What's troubling to me are not your actions -- not in the least -- but medicine's lack of progress in coming up with better ways to diagnose meningitis and treat it.

  9. I suspect there are no answers at all to these questions, Mandy. They're just thoughts and questions that need to unleash their fury. They will eventually quiet down a good bit; I'm sure you know that. But the fact that they are so furious right now doesn't mean they hold any particular truth. Maybe they're just what a caring mind and soul do in trying to make sense of the senseless. Peace to you, Mandy.

  10. Mandy--first I want to echo Andrea in saying that, while obviously I cannot speak for those I don't know, I feel certain that one of the things that your friends and fellow parents identify most with you about in all of this is that we would have done exactly what you did. It's that crazy impossible line parents are always walking being vigilant and being a nutjob.

    I also want to say that you knock my socks off--how you look this brutal stuff straight in the eye and talk to it.

  11. It's very brave to put this out there. To us and to yourself.

    We share a pediatrician... and I saw her with my 17 mos old recently. Why was I there? Being uncharacteristically over-protective... because of Hudson and the fragility of life she taught us all. In the end, nothing was wrong; I did the delicate, slightly embarrassed apology for taking up valuable doctor time with panicky worries and noted that the community is shook-up about the loss of one of our babies. The doc paused... she knew who I meant without my saying.

    The look on her face, the change in her demeanor, a slight shift in her posture... the docs are deeply deeply disturbed and saddened. I recall what she said, "That doesn't happen. What happened to Hudson just doesn't happen." I really thought she might cry. I wanted to offer her a hug, but there was enough professional distance, we talked it out a bit instead.

    Peds don't, as a rule, lose their patients. They share in helping them grow up and they expect to share jokes for many years. She'd only seen one other child with anything like this - a child with many other complications, not the least of which was not being vaccinated. Everyone did what was right and reasonable but the situation wasn't reasonable.

    Speaking for myself, I would probably not have been at the docs yet. I feel generally confident in dealing with what comes up. You were probably ahead of me by a whole day. If anyone breathes a whisper of blame, they speak out of their own helpless rage and not with any sense.

  12. Mandy, you are so strong that I know you don't *need* anyone to tell you this, but if I were in your shoes - and Lord knows any of us could be - I would want to hear from a chorus of people who know they'd do the same in your situation. We would. You did everything right, and you were beset by tragedy beyond your control.

  13. mandy, i am going to confess something horrible about myself. so i am on FB off and on all the time and i saw your post that you were taking Baby Hudson to the ER. i can't remember the exact words, but i said somehting about how "first time parents go to the ER at the drop of a hat" to marc (my husband). i actually ridiculed you for taking her to the ER so soon becuase i wouldn't have until something VERY unusual happened. obviously, i am really ashamed of this. but if it makes you feel any better, most parents would have waited longer, i would have waited WAY longer and if you had more kids, you would probably, even you, have waited longer. becuase the thing is, getting meningitis is like one in a million. getting a fever that lingers and a whiny toddler that doesn't eat/drink, that is somehting that happens VERY often to EVERY toddler. and yes, you say you had a feeling something was off, but don't we always? you only remember that feeling becuase of what happened afterwards. had the end of the story ended like 999,999 of indistinguishable cases (to us non-pediatricians) ended, you would never have remembered that feeling. so after we found out the cruel turn of events that we so wish wouldn't have happened, i said to marc that "imagine if that had happened to us? imagine how guilty we would have felt becuase we would have waited like 24 hours longer than mandy". we (wrongfully) concluded that "thank god she could atleast NEVER blame herself". but goes to show, parents will always blame themselves, whether it makes sense or not.
    i have yet to take any of my kids to the ER, and i probably should have many times but i was just too tired, too familiar with the fevers that come, last a few days, and then go away with no explanation. erik, my eldest, has probably had 10 instances of extremely high fever (106 with an ear thermometer) and i gave him tyleonol (which brings it down to like 102) but did not even take him to the pediatrician after 24 hours of that. 10 times! i would NEVER have gone to the ER. i think that if anything, you were an incredibly attentive parent. Hudson got care and attention that extremely few toddlers would get and serisouly, there is NO WAY you could have given to a second or third child becuase you just COULDN'T.
    mandy, let me tell you, compared to the average parent, you took your precious baby hudson in to the ER very quickly.
    hang in there mandy. it has GOT to get better. it HAS to and it WILL.
    xoxoxoxoxoxoxoxo kristina

  14. I know nothing of having a child or losing a child; I know only how much I love and adore my three nieces and could not possibly fathom losing one. I know a little about living with guilt, grief, and regret because of difficult questions--why didn't I go straight to the hospital as my last living grandparent was passing instead of stopping off at my sister's to say hello to my nieces on the way from Greenville to New Bern? Why didn't I take the 45 minute trip home from ECU more often to see him while he was alive? Why didn’t I take the time to call him the entire last week of his life to tell him I was thinking about him and loved him? Since 2000, those thoughts have never left my mind and I still cry fairly often (to be honest, quite regularly) at the thought. What kind of awful, horrible, selfish person does those things? These types of questions are inevitable and have their place in the grieving process, which, as you well know, is a Process with a capital “P.” I know only of your parenthood and your journey with Hudson what I glean from reading, but, for what little it’s worth, it is more than obvious to any outside observer that you gave Hudson 110% of your absolute best. And, knowing you personally, your best is pretty damn amazing. You could have done nothing more to save her, Mandy. (And I understand and am sorry that those words are hard, hard words to hear. I truly believe, however, they are true.)

    I read your blog and cry with you every single day and wish to God this did not have to happen to you and Ed. I hope you can find moments of comfort in your grieving Process, and I hope they get longer as the months go on. And I hope one day, the moments of comfort exceed the moments of overwhelming sadness and you can find peace with Hudson’s memory. Please let me know if there’s ever anything you need. We think of you often in Atlanta.

  15. Mandy,
    In the spirit of offering you comfort, I wanted to add that when my first child was a couple of months old she had a fever. We gave her Tylenol and it didn't seem to go down. We took her to the ER and, from my perspective at the time, the doctors 'overreacted' and suggested that they do a spinal tap to test for meningitis. I told them no, as I couldn't believe she was in that sort of danger, and we took her home. She recovered by the next day, but what if I had been wrong and the doctors' concerns justified?

    As you've read, it is part of the healing process to relive those hours, to rethink and question the decisions you made, but the bottom line is that what happened has no rhyme or reason. It was the 'exception,' the 'outlier,' the thing that's not 'supposed to' happen.

    I experienced this to a much lesser extent when my husband and I were on our way to Nova Scotia nearly 15 years ago. I was driving, he was sleeping, and we hit a moose. It was nighttime and I didn't have any warning; in fact, afterwards I had no idea what exactly had happened. It seemed as though a brick wall suddenly appeared in front of us on the dark road. The car was totalled and the moose was killed. Peter was very badly injured -- head trauma, broken bones, etc. I walked away unscathed. As Peter lay in a coma for many days, I replayed the whole scenario in my mind (and continued to do so for months afterwards as he slowly recovered) -- what if we had stopped earlier? what if I had been driving more slowly? what if Peter had been driving and I had been in the passenger seat? I would lie down at night, close my eyes, and the scene would play itself out again and again. I returned to work and couldn't focus or concentrate. I was overcome by guilt. To this day I remember it all as clearly as if it happened yesterday.

    Your words also resonate for me as a result of the fact that my mother had a premature baby when I was two years old who lived for a couple of days and then died. We spoke of him during my childhood, and although I was an 'only child,' I thought of him as my brother and tried to honor him in small ways. His name was Aaron David.

    Terrible things happen. For no reason. What I love about your response is that you are reaching out, sharing with others, giving them an opportunity to offer comfort to you, which is really a gift to them as well.

    Please take care,


  16. I am so proud of you for speaking to your worst thoughts and feelings and sharing them with complete abandon. Hang in there my friend. The sun will shine again and you will see it for the first time anew...Renee

  17. Mandy, love, I know you must have been thinking these thoughts this whole time, and I know it can't be helped.

    Twice in my life so far (and hopefully no more) I have been in the position of trying to cope with the fact that decisions I made -- or didn't make -- allowed some one to die. And you can really tear yourself up about it. You'll never sleep, wishing you'd done something else and that person might still be here. I felt like the whole world and their loved ones were looking at me like "why didn't you do something sooner, or do xyz instead and we could still have our beloved here?" They seemed like such small, almost automatic decisions at the time and just turned out to have the worst consequence (or maybe not, as you point out in your corollary question -- would it have even made a difference? We don't know). But when it comes down to it, if I could go back and I was in that place again, I would probably evaluate those situations exactly the same way, and make exactly the same decisions now. All we can do is the best we can with what we've got. Clearly you did that for Hudson. Little kids get sick all the time with serious fevers and they amount to nothing. You did for her what the most loving, intelligent, reasonable and protective parent would do - and some. You made the best decisions you could for her in that situation.

    Life is series of freak accidents -- sometimes horrible things result, sometimes beautiful and amazing things. Most of the time, the results are so seemingly inconsequential, we don't even know the difference. We just roll along with making our little choices every day, most of the time never knowing what we may have just missed -- both terrible and wonderful. Or just completely mundane. Who knows, something I did today may have prevented some one's tragedy and I have no idea! It is scary how chaoticly life really unfolds, even when we are doing our damned well best. It is a reality that we must all live with -- we can't protect our loved ones from everything and something awful could happen to any one of them or any one of us at any time. We can only do our damned well best...

    The meningitis infection Hudson got was a freak accident. It really was. I know you can't help all the "what ifs" and it might drive you absolutely crazy for awhile. But they will quiet, because you know in your heart of hearts that you and Ed did your best for her. We know you did. Life has been cruel to you. We can never make sense of it.

    We love you ~ Lindsay

  18. The other day my son (two years old in a few weeks) fell into a pool when I was supposed to be watching. Thankfully his cousin (only four herself) kept his head out of the water until I noticed what was going on. It's all so fragile. It would have been my fault - what happened with Hudson doesn't seem anyone's fault at all. I guess you know that but there's no way to turn off these questions. We all have more near misses than we can count. And sometimes the worst does happen. I hate it for you.

  19. To reiterate what everyone has said and I believe to be true, you absolutely did the right thing (and acted far faster than most parents in your shoes would have).
    At the same time, I think it is perfectly normal, as your wrote, to ask yourself these awful questions- even though we know and you know that you did all you could- it is normal to question because I think underneath all of the "what ifs" is the "why"? Why did this happen? And there is no answer to this terrible and painful question. It is an incomprehensible injustice.
    But I hope there is some small measure of comfort in knowing that you did, as you described, your job. You loved that little girl with everything you had. There is no way to question this. And while it is almost impossible not to replay all these moments of those horrible days in your mind and question the decisions you made, I hope that you do not let these questions borne of grief overshadow the understanding of what a beautiful thing you did in being Hudson's mommy.
    Sending love to you and Ed.

  20. Mandy, Mandy. I so wish I could take this doubt away from you. You are an amazing Mother. And you always will be. You did everything right. As someone else said, it was just dumb, ridiculous enraging fucking dumb luck.

    To echo what Sophiagrrl said...I, too, share the same physician (per your recommendation, actually). I took Cecilia to the pediatrician a few weeks after Hudson died for the FIRST time since she was born for a non-routine appointment. I've always been, as several have described, afraid of being pegged as a paranoid, over-reactive parent and being turned away for nothing. Especially after being so embarrassed and frustrated from being sent home from the hospital for coming in "too early" during labor, my first time ever going to a hospital in fact, I resolved to really evaluate it out next time before I make that trip. However, towards the end of May, Cecilia was eating very little and fussing some, and just had a slight temp, which by the way was only the second time I've ever taken her temperature. I took her to the pediatrician, thinking of you the whole time - Mandy took Hudson in the second she noticed something was wrong. If that had happened to us, I would've been days behind her. I had already let this go 4 days, what would Mandy have done? Same exact thing as Sophiagrrl, the pediatrician said everything was fine with Cecilia. I confessed my guilt about Hudson and how I'm sure I would've waited longer. The pediatrician and the nurse had the same reaction and the same words to offer me as Sophiagrrl. This had never happened to them before. Their facial expressions dropped. They looked at the ground. The Doctor hugged me. This was a shock to everyone, Mandy. You did all you could. Nobody blames you and nobody believes you could've done anything different. I hope someday (as soon as possible) you will know this in your heart. As it turned out the next day, the first of four molars popped out. She was just teething. Hudson's unbelievable circumstance has given everyone a free ticket to go to the pediatrician with the smallest of symptoms - and they totally get it there and they reassure our fears and worries. Now. NOW they get it. I think all of our Mommy instincts were and still are out of whack. I've been freaking out for weeks over little, insignificant things - and then a tooth pops out, and then she takes a nap and is better, and then her nose starts to run, and she pops out a big solid one in her diaper, and when we get back home and back to routine everything is okay again. And yet why do I still question my instincts? I question them because I know you did everything right and it still didn't turn out they way it was supposed to.

    And as Kristina said, I also (and with much guilt and shame), didn't realize how serious her condition was and initially dismissed the ER visit as an plausible over-reaction. It wasn't until Renee called me after her visit to Children's and told me just how serious it all was. It's hard today, to get the credit and reassurance you deserve as a parent when your instincts kick in. You deserve that credit; you DID do everything you could and your instincts did kick in! You said at her memorial, it was a one in a hundred million chance; and an unfair, fucked up, unreal, unfathomable (still!) chance at that. I'm so sorry for your guilt, as completely undeserved as it is.

    Thank you for sharing, this has got to be the hardest read yet, and the hardest to write for sure. You are amazing, strong, powerful, and reflective - you will someday look back on these writings and say, "Damn, I'm an amazing woman. Look at all my power and strength and forethought and ability to grieve and process with such maturity and heart." You really will, Mandy.

  21. mandy! you are unbelievably brave to "go" there publicly. please hear us all: you have no blame in this. lift that recording off of your record player and replace it with a new song: all of the voices of your loved ones singing your praises for the incredible mother that you are. we need to look no further than the loving record you created with photographs documenting each month of hudson's life with you and ed. every milestone and all the everyday moments in between. you really LIVED a wonderful life with that girl. you weren't a worrywart mama who didn't let her get her hands dirty- for god's sake- look at her chocolate covered birthday cake face! she really lived- and you encouraged her to dive in. when she was sick- you immediately posted about it on facebook. you were concerned- you were on top of it. all of us mama's can think of countless high fevers that we waited out- calls to the doctor where the advice was to alternate between motrin and tylenol to get the fever down. an immediate trip to the ER? who'd have thunk? i've been a mom for 10 years and it wasn't until after hudson's experience that my 8 year old's 105 high fever made me consider an ER trip. it takes a wildly unlikely tragedy like this to even put an ER trip for a fever on my radar. and that can be ONE GOOD THING that has come of this awful mess. a lesson to the rest of us to know that there is such a rapid thing as meningitis that can suddenly rob us of our children. i'd never even heard of it before hudson. how could you have known? please let yourself off this hook. you've got enough hooks to detangle yourself from right now, my dear. this is not one you need to bother yourself with. i know, easier said than done. but please, try sweetlove.

  22. I have already expressed to you many times what I am about to write, but this post deserves a public witness. To add to the chorus already here: you were the best mother our child could have ever had, you did nothing wrong when she was sick, and you do not bear an iota of blame or responsibility in her death. I will tell this truth forever. I love you.


  23. Death is full of “what ifs” my sweet, sweet Mandy.

    When I was 6 years old and saw my dad collapse, why didn’t I run faster for help? Why did I run under the fence instead of in between? Would those few seconds have mattered? Could they have saved him? I’ve thought so for all of these years.

    When my grandmother was in the ER dying and I knew it, why did I only ask for help twice? Why didn’t I insist that they do something? Would it have mattered?

    The comments before me say it all….you are a fantastic mother who protected her daughter at all costs. There is no other truth, my dear. You have to keep telling yourself the truth when the “what ifs” come. I hope that maybe that means coming back to this page and reading the comments of other parents and friends who have shared the “what ifs” too. Love you so.

  24. Mandy, as difficult as it was to read this chapter, I am so touched by all the comments. Almost all reflect my own sentiments. I remember when you came kayaking at my dad’s house and you expressed this guilt about what could you/should you have done. I hope at the time that I wasn’t overly dismissive. But if I was dismissive it was because I know that you did everything right. I would have done the same thing, or as the others write, I may have waited longer. If the doctors’ office didn’t open until 10, I would’ve waited that long. If I hadn’t gotten an appointment that morning, I would’ve waited until the appointment. When the St. Ann’s kids all – well, it seemed like all -- got sick after Thanksgiving of last year, I did just that – waited until after 2 PM for the appointment. The fever wasn’t going down, child wasn’t eating, was crying unless being held. She had, just the night before, seemed better and we were planning to take her back to school. Then, it got worse, and I was panicked and called the doctors’ office (meningitis, pneumonia both crossed my mind). They said, try motrin if tylenol isn’t working and come in at 2 or whatever time the appointment was. Turned out it was an ear infection.

    I think maybe the guilt you feel has to do with control. You’re the best mom and sadly even the best mom can’t control what happens to her precious little one. And sometimes an unimaginable, terribly tragedy strikes. And even though you did everything right, did what the most diligent parent could/would do, this awful tragedy still happened. I am sorry you feel so much guilt over this. I don’t know if it’s worse to have you thinking you didn’t do enough or to realize that you did everything and still this happened and how it means that all of us are at the mercy of so many things out of our control. We are all struggling with the why of this – as you can tell from all our comments. Why did this happen to Hudson? But never do any of us think for one tiny millisecond that, ‘oh well, if only Mandy had gotten Hudson some medical help faster, all would be ok.’ It is precisely because you were the most diligent of parents, totally on top of things, taking perfect loving care of Hudson, being in touch with the doctors, taking her to an appointment first thing, NOT waiting, that scares the shit out of the rest of us. We have so little control.

    My family and I continue to grieve with you and to question and to cry and to get angry. But never, never, never do we ever think you didn’t do enough. Hugs and love, Kate Ackley Zeller

  25. Oh gosh, Mandy. It tears me up that you are questioning your actions when Hudson became ill. Nothing you could have done would have changed the outcome. I know you don't follow a particular religion...but I will share with you my belief. Our fate is written long before we are born. God shared Hudson with us for a short period of time and took her back to heaven. When I shared with my mom your story, she immediately said, "Hudson is in heaven and on the Day of Judgement, she will appear before God with her parents." It is our belief that parents of deceased children endure hell on earth so you will be judged in the eyes of your daughter. My mom said, Hudson's parents must be remarkable people because they will one day end up in heaven too because of the pain they endure in this lifetime. I know that my response to your post is strictly from an Islamic point of view...but I believe everything is meant to be as it is. We can only do so much to control our fate. The pain you and Ed are facing is unimaginable. But please, please, please do not question your actions or blame yourself. Hudson lived a wonderful life with the most loving, caring parents. You couldn't have been a better Mommy to her. Hudson was blessed to have a Mommy and Daddy as wonderful as you and Ed. She watches over you from heaven, and I pray everyday that you gain some peace in your heart and know that she is in a much better place than we are. Please don't torture yourself with feelings of guilt. Please find peace in your heart knowing you couldn't have taken care of Hudson better if you tried. At the end of the day, it is the absolute worst that Hudson is gone..but as hard as it may be to hear this, it was meant to be, my dear..and we can only learn from and strive to become better people as a result. Love you.

  26. Oh gosh, Mandy. It tears me up that you are questioning your actions when Hudson became ill. Nothing you could have done would have changed the outcome. I know you don't follow a particular religion...but I will share with you my belief. Our fate is written long before we are born. God shared Hudson with us for a short period of time and took her back to heaven. When I shared with my mom your story, she immediately said, "Hudson is in heaven and on the Day of Judgement, she will appear before God with her parents." It is our belief that parents of deceased children endure hell on earth so you will be judged in the eyes of your daughter. My mom said, Hudson's parents must be remarkable people because they will one day end up in heaven too because of the pain they endure in this lifetime. I know that my response to your post is strictly from an Islamic point of view...but I believe everything is meant to be as it is. We can only do so much to control our fate. The pain you and Ed are facing is unimaginable. But please, please, please do not question your actions or blame yourself. Hudson lived a wonderful life with the most loving, caring parents. You couldn't have been a better Mommy to her. Hudson was blessed to have a Mommy and Daddy as wonderful as you and Ed. She watches over you from heaven, and I pray everyday that you gain some peace in your heart and know that she is in a much better place than we are. Please don't torture yourself with feelings of guilt. Please find peace in your heart knowing you couldn't have taken care of Hudson better if you tried. At the end of the day, it is the absolute worst that Hudson is gone..but as hard as it may be to hear this, it was meant to be, my dear..and we can only learn from and strive to become better people as a result. Love you.

  27. Mandy, I do not know you, but my heart aches for you. I have 3 young kids. Like many others here have said, I am slow to take them to the doctor and always figure everything is a virus they can't do anything about. I used to have a friend who would say, when you hear the sound of hooves, you should assume it's horses and not zebras. I think about this a lot b/c it's so easy to get freaked out about all of the horrible what-ifs, and if we went there every time as parents, we'd go crazy and would freak our kids out about all of the danger lurking everywhere. And it sounds like you were VERY vigilant. You trusted your instincts, which is all you could be asked to do. I am sure I would feel the same way that you do in your situation, but I bet you would also tell someone in your situation the same thing everyone is telling you here - that you are not at fault and that horrible things happen. I had an adult friend who had meningitis and although he recovered, he was in a coma for a few days and has permanent hearing loss. He eventually went to the ER b/c his head hurt so badly that he could not stand it - they triaged him and sent him back to the waiting room, where he waited for over 8 hours to be seen by the docs. He talked to some doctor friends afterwards about whether he should sue the hospital for negligence, and they all said that the there was no way to know if he'd been treated sooner if it would have been any different, most of them thought not. I am so sorry for your loss. When I lost a close friend to cancer, the wisdom of Anne Lamott (of all people) really helped me get through it. Take care.

  28. Mandy, you did absolutely every single last thing you could do for her. You saw the doctors, you took the best care of her possible. This is still the most horrible, hateful, terrible thing that has ever happened to anyone we know-- it should not have happened, and I hate every day that it did. But it did not happen because of anything you did or did not do. Oh, my heart is just breaking for you and I wish there was something I could do.

  29. You did the best that any parent could possibly do. Life is uncertain: there are risks, perils, pathogens. You gave Hudson your full love and protection. I'm deeply sorry that you lost your precious child. I hold you in prayer and lift you up for comfort and healing.

  30. I know that there is probably nothing anyone can say to stop the constant replay of the last week of Hudson's life. But, I figured I'd throw this in there anyway. I'm a doctor (a pretty good one) and a mom, and I would have done the same thing you did. You didn't do the wrong thing; the wrong thing happened to you. It is just unbearable. I think of you, Mandy, every day, wishing there was something we could do to ease your suffering. peace and love, rekha

  31. I am so sorry for your loss... I found your blog through Altdotlife. I'm just so so sorry. Your daughter is beautiful as is your memory of her. I can't imagine your pain, but at the same time I can imagine the feeling of "what if" but you did what you were supposed to do and you were robbed. Again, I'm sorry for your heartbeaking loss and I wish you peace...

  32. Hi Mandy,

    I don't know that you remember me, but I was on the Unitas hall, I roomed with Shara - and I was friends with Keely Noffsinger Massie, from whom I learned recently of your blog.

    Though my beautiful daughter, Maddie, is by some miracle with us today, I second guess myriad decisions daily on account of the fact that she has autism. Hudson may have had more speech than Maddie does at the age of 4.

    I too ask the questions: why didn't I realize that late-onset reflux had turned to seizures? Why did a negative GI study mean I temporarily ceased looking for answers? Why did I dismiss the lab attendant's informal diagnosis when she saw a brief seizure the pediatrician didn't? Why did I give Maddie the 9 month vaccines anyway, when my formerly well infant's health was falling apart? Why did we live in a 1920s home WHILE it was being renovated, exposing my husband and myself to lead dust which I apparently transmitted to my future child through my breastmilk? So many worries and doubts, so heavy to carry through this life.

    And three years on from getting the seizures under control, we wade through the instructions of therapists and integrative medicine practitioners, the speech disorders clinic, the early childhood special ed program, the
    weekly parent training in Relationship Development Intervention to teach Maddie's brain to act as it should have in that pre-speech year... I have been feeling overwhelmed. Unblessed. Unforgiving of myself.
    Uncapable of producing healthy children.

    As I read your poetry of loss, I am moved to try to start letting some of the above go. I am blessed, greatly, by friends who bring their children out for playdates with Maddie though she does not know how to interact properly with her peers. By organizations of the kind that I used to read about during my student job at the School of Social Work, but of which I could not anticipate ever becoming a client. By myriad other families who are walking the same path, who celebrate our kids' smallest victories and accomplishments and understand that our worries are not the same as those of typically functioning kids. On the other hand, there are also the families who love us as we are and help us understand what is productive anxiety for every child, not just an autistic child.

    We have a few family hurdles to get over, but we may be getting to the point of trying for another child. Reading your words about Hudson's siblings gives me hope that I can help myself and our family welcome another miracle of life.

    I spend too much time fretting over what Maddie doesn't have that I neglect what she DOES have: a glowing spirit, an active intellect, and an incredible kinesthetic sense, among many other admirable traits. She is and will continue to be my life's work. I have always sensed that my cause would find me, and its name is Maddie. She has helped me find myself. Hudson is doing the same work in you.

    Bless you, as you have blessed me with your words.
    Katie Stow Hotard