Julia wrote a stunning post yesterday about her day at the beach. I was incredibly jealous of her description of swimming out to a catamaran to get a picture of her daughter and husband. She talks about the “risk aversion monster” – this great problem we now have of being hyper-aware of all risks. Certainly I am that way – I commented that I’m nervous every time Josh goes out on his bike, that some crazy SUV driver is going to take him out. But I’m not new to risk awareness. It’s the fear that’s different in me.I never thought I was exempt – I just never cared so much when the only person at risk was me. In less than a week, this baby will be viable (barely). Soon he’ll begin to hear and have something of a memory. I decided to have another pregnancy knowing it would be high risk. I decided the risk was worth it. I’m no so sure it would be again. If he’s born early and has special needs as a result – we will have decided it was worth the risk to make him live life, we will be the ones insisting that doctors try to save his life. And we’ll all be living with the results. But mostly him.

When other people say they know it’ll all be fine, I wonder if they believe it. Why do people think things will be fine? What do they mean by that?

If this baby is born early, and has a disability as a result, there will be people, even in our families, who will regret that he survived. There are people, even in our family, who never even acknowledge our firstborn son because he didn’t.

What I want to know, but can never know, is whether they suffer because of their limited vision of life. Am I better off because I know what it means to love someone who was born too soon and then died? Or am I suffering more because I acknowledge him as real while they’re getting off easy by denying it? Are people who run from anything less than “perfection,” and even perhaps secretly despise it, hurt? Or do they just not think about it at all?

Our relatives, and the various relatives you all are struggling with, is their coldness costing them anything?


I thought I’d be an hysterical crying mess these few weeks. Instead I’m distracted and confused. If I try to write, I stare at the screen blankly. When I read, my mind is racing, thinking of anything besides the words on the page. Early on I had a smart strategy for avoiding worry – not calculating gestation dates. Not working anymore. And of course there’s a plethora of new worries. Dr. K said I’m doing well considering, and that may be true, but unfortunately it’s not so much a signal of my optimism as a sign that I feel resigned. This baby’s either coming home alive or he’s not and of course I’ll do everything I can, but will that matter? I’m going to be destroyed if he doesn’t though.

Two days from when I entered the hospital with Natan, I feel fairly confident I won’t be in the hospital on Wednesday. With a cervix above 3.5 cm, I don’t think we’ll be delivering this boy at 25 weeks. Dr. K said this morning she doesn’t want me on strict bed rest since the cervix isn’t changing much, but that I’m just to rest when contractions come. I’m still going to take it very easy though, and see where I am at my appointment next Monday.

17 responses to “Thoughtfree

  1. Sadly, I don’t think they hurt. They are missing the fullness of life, but they don’t know it’s there, so how could they suffer for it? I am pretty sure though that the amplitude in question goes both ways– if they are unable or unwilling to experience the devastating lows, then corresponding highs have to be closed to them too.

    About whether doing everything you can matters. I don’t know. But I do know that pretty much the only thing that kept me from loosing my head entirely after A died was the firm belief that there is absolutely nothing anyone could’ve done at any point to prevent it from happening. Of course, it also means that I will be pretty much at the mercy of chance next time as well. But not trying to us is worse than taking this chance again, ans so we try.

    Your next deadline being not until October, maybe you can afford to blow a week. There are always blogs to read… 🙂

  2. for a post titled “thoughtfree” this one was pretty chock-full.

    i have a very dear friend who asked me, both a few weeks after Finn’s death and again this spring, two years later, if i would have wanted him to live if his prognosis had included severe disability. given that he had blue toes and fingers from oxygen loss by the time we first saw him – though no IVH – i’ve always assumed that he might have had a longterm disability had he survived. and in the months immediately following his death, my answer to my friend’s question was an unequivocal yes. the absence of him was far worse – for me – than any present i could imagine that allowed me to have him with me. of course, if i’d had to watch him suffer great pain and trauma repeatedly, as he did in his first few hours, i suspect that would have impacted my answer…but had there been any hope of a moderately full life, without massive and constant intervention causing him pain, i would’ve been on board.

    when she asked again this spring, it was harder to say yes unequivocally…i now know how exhausting it is to parent even a healthy child, and how stressful i’ve found O’s non-crisis experiences in the NICU and hospital. had Finn lived, especially with high needs, there might be no O. all these things, and my own limitations, i’m aware of. but my answer was still yes. he was my son. in the days leading up to his birth, i wasn’t sure i felt so strongly in terms of intervention to prolong life. after i’d held him, i would’ve given my own life to bring him back. that simple…and i usually live in shades of gray.

    i know my friend – who had to ask the question twice – really doesn’t get my answer. that’s okay. she’s carrying her second, presumably healthy, son. she is a person who, while very kind and caring, always spins her life in terms of the next big perfect plan…so i assume that she would make different choices, even of the heart, than i wish i’d been able to. or at least that she thinks she would.

    but i do think she misses out. i learned a lot from Finn, from holding him for an hour. it made me far more human than i was before, and i wouldn’t trade, except…well…for the impossible of having him.

  3. Wow, there is so much here that I feel too. I could have said so many of the same things–it is scary! I do think that the relatives that we’re dealing with are missing out. That coldness that you write about does protect them from ever feeling bad, but it also prevents them from ever really feeling anything truly good.

    I feel like I have a completely different idea of what true happiness is now. Maybe you have to go through true unhappiness, true misery…to know what true happiness feels like? Maybe some lucky people are born knowing this and live their entire lives this way. But I know that I now “get it”. As for my relatives, I don’t think they can go there. They seem happy living a superficial life and anything that doesn’t fit into their perfect picture of life, has to get out of the way.

    Having a child with a disability did not really occur to me when the twins were arriving. I think we made our decision to not use heroic measures, because we just thought they wouldn’t live and we didn’t want them to suffer. The delivery was very quick so we didn’t have a lot of time to make that decision, but I do think it was the right one, for us. Since then I have thought about what would have happened if they had survived, and had been disabled. We, of course, would have loved them, no matter what. I have questions about “what if”, that I just won’t be able to answer in this lifetime.

    I wish I could tell you, Beruriah, that everything will be fine this time. I often say that, even if I had a signed contract from God saying that I get to keep this one, that I wouldn’t believe it. I just don’t trust my body and I guess I’m resigned too…to either keeping or losing this one too. It’s so not fair though. No one should have to go through pregnancy wondering every day (like I do) if today’s going to be the day it all stops.

    I’m so glad that I get to read your blog though. It is great to read words that I can relate to so much. I’m sending as many positive vibes your way, as I can muster!

  4. Yes, I do believe today’s standards are too high. People expect their lives to be basically perfect, without any adversity. At all. I find these shallow people very silly. I imagine that most people don’t have enough tragedy in their lives, resulting in absolutely *no* coping skills. Missing a weekly manicure, becomes fuel for conversation. They lack the texture and depth to recognize a loved one writhing in pain, much less the compassion to sit down and comfort.

  5. Thrice said it very well. I find these people to be very superficial and shallow. They don’t feel the tragic lows or the wonderful highs. They take life for granted. They don’t have close relationships with people, not the way the rest of us are capable. After our loss, R and I became so close and our love for each other so strong. I do think love and intimacy like that is rare and worth experiencing. Hopefully, we’ve both experienced enough tragedy for some time.

  6. Thanks Julia – I didn’t do anything today but some creative writing and crocheting. Can’t let that happen tomorrow though – I’ll start to feel panicked again!

    Bon – I wonder why your friend wants to ask that question? The answers, as you know, are impossible. And if you’d gotten your “yes” wish in the first place, you wouldn’t know what you were missing with O. There are no parallel worlds. I think you’re probably right that she misses out by not understanding. G-d forbid anyone else suffer our pain, but certainly other people could learn by approaching us.

    Thanks, Meg. I wish I could assure you of the same thing. I think I knew true happiness before – but I think if this all works out well, I’m going to learn about true relief. I don’t know what it is yet to be released from such a horrible fear. And I think that will be an unfathomable feeling.

    Mary, Thrice. I agree completely. Except that I don’t believe anyone really escapes adversity. They must just ignore it. Waiting for it to pass, and hating anyone who either reminds them or is a reminder of it.
    Mary, Certainly Josh and I have a relationship worth envying. I say that both seriously and tongue-in-cheek, thinking about my own envy of parents with living children.

  7. Briefly, will answer that yes those who are so cold do suffer for it. Sometimes the coldness does not come from superficiality but from some pathology or the other (thinking of my mother but don’t have time for the details…)

  8. i’m very interested by the comments that suggest that people who haven’t experienced the lows don’t experience the highs. ‘Cause in my experience, that’s not the case. Taking the example I know best, myself, I know that I’m pretty much incapable of the whole higher end of the emotional spectrum. Which is not to say that I’m never happy or never feel anything good, but that I don’t have the ability to feel the more intense versions. On the other hand, I’ve got despair down just about pat.

    In my family, achievements don’t really mean anything. Which I’ve always kind of regretted, because if they did, I’d at least have a chance of being valued.

  9. That’s the thing, Niobe. I’m not so sure either. Although I do think the relatives I’m speaking of are so damn judgmental that they must spend a lot of their life disappointed, if not devastated, because none of us can ever live up to their expectations.

    Should I be sad that you think you’re “incapable of the whole higher end of the emotional spectrum?” You seem to be quite good at finding small things in life to enjoy – like “voiceless aleolar sibilants,” and “velar lateral approxmants” in your “summer afternoon” post (I haven’t figured out how to easily link in wordpress comments…). I don’t know many people who can get pleasure out of words.

    But mostly, I’m thinking of something Julia said on someone’s blog (Meg’s, I think). About how relatives who don’t acknowledge our dead children shouldn’t get to enjoy the live ones. If this boy comes home with us, there are people who are going to take lots of joy & pride in him who have never spoken of our first son and didn’t take part in mourning him, who acted as if losing a viable baby was nothing more than a miscarriage (and of course a miscarriage isn’t nothing either). I can’t forbid that and shouldn’t! But seeing as I always over-imagine things, I’m already considering that one of them might refer to him as the first grandson or great grandson. What’ll I do? I’d want to berate them – revise their view of the world because it’s not that unadulterated.

  10. That’s another subject that I’m wholly confused about – when people ask me if this is our first child. I usually say yes, because people aren’t really asking for the real response and maybe I’m not up to dealing with their discomfort if I answer honestly. But we will talk to our future children about Elijah and we’ll continue to love him and remember him. Luckily, my MIL has been great and doesn’t ignore him, but I know other family members might. Hard hard hard.

    I don’t think these people have never had a tragic event happen, but they do seem to will themselves through it with the least amount of feeling and acknowledgement. It’s a strange society we live in.

  11. Hmmm. No one has asked me that question yet Mary, probably because I’d have to go out in public among strangers for it to happen…..But recently Josh told our neighbor both about my pregnancy and Natan. We moved in last September and our schedules are so different I only saw her once or twice early on, so that she remarkably never saw me visibly pregnant but we have socialized together this summer. It seems to me like maybe people who are going to stay strangers or random acquaintances don’t need to know, but if we’re heading towards friendship or regular contact, for now, yes, I need people to know.

  12. i always waffle between should haves and could haves with our girls. they both had grade 4 ivhs and though we would have been super parents our girls would have suffered greatly. had the bleeds been 1s and 2s it would be a different story. but i could say that forever and it doesn’t change anything.

    i’m with you, beruriah, that “relatives who don’t acknowledge our dead children shouldn’t get to enjoy the live ones.” i think that with a sub pg my side of the family would always remember the twins, though i’m not so sure about my husband’s side. while there aren’t any glowing achievements happening there, they are quite good with a broom and a big rug.

  13. To me, the thing about not getting to enjoy living children if you don’t acknowledge dead ones seems like basic fairness. But I do understand that this wouldn’t be the first time when life has summarily failed me on the fairness front. And that this is highly unrealistic. This is a lot of what my Elul work is about this year. Very unfair, and yet something I have to come to terms with. Although I think we should get to set them straight, and to define terms on which we are willing to go forward. But very definitely to set them straight.

  14. I’ve often been glad that for us there was no question of what to do about Matthew being saved after we learned what the consequences would be of continuing the pregnancy. He might have been one of the children who survive birth but are never able to experience life in any meaningful way, but more likely he would’ve died, and the risk of him being a vegetable just wasn’t worth it.

    Going through that made me a better person because I had to learn all about what it’s really like to care for a severely disabled child, as part of our decision making process and I’ve learned more since. I don’t know if it’s about a limited view if people want a baby to be fine, or perfect.

    I know couples who are in the middle of raising children who are severely disabled, and their lives are very very difficult. Your nephew is one case. If the issue is only walking, then he can live a full life in a chair of course, but what about other issues? Children with brain damage or severe physical problems, or both, who may never ever live independently, or even enjoy life if they are in constant pain and have to endure endless surgeries?

    I mention it only because these are the tough cases that most people don’t talk about, but are not so clear cut as your nephew’s.

    Funny thing, when I use the word fine on a blog comment, I only do it with women like yourself who are actually doing something different in a treatment protocol, like progesterone shots or heparin or something. I actually don’t say it anymore unless I believe it will be fine. I used to, and realized I would be lying, and felt like that would be wrong to hold out false hope. Real hope on the other hand, I will hold out. I can’t know 100%, no one can, but I feel better sometimes when someone has a diagnosis and a treatment, if that makes sense.

  15. Oh absolutely, Aurelia. My nephew’s case isn’t so clear cut either – he has no bowel control, has had to have a few surgeries, and there are a myriad of dangers from life in a chair. He suffers more pain, too, than any child ought to experience, but not on a daily basis and nowhere near enough to make me question why he’s here. We now know families whose children have even greater challenges.

    It’s not so much an issue of the choices that I’m describing. I know, and you know, that you made the right choice for Matthew’s sake. But we acknowledge him as a real person, and his life and death as something to be mourned.

    I’m thinking of people who look at my nephew’s life as tragic, and who would so easily think Matthew’s death was for the best and thus shouldn’t be thought of at all.

    I could easily say that they haven’t had to experience the pain at all, but I know that’s not true. Some of our relatives have been experiencing some part of our suffering because they love us, and because they’ve chosen to acknowledge Natan as their lost family member too. What are the others feeling? Nothing?

    I’m being so dreadfully vague here but it’s hard to capture all my thoughts.

    Thanks for the real hope, by the way. I think if I’m really truly honest, I have some of that too….

  16. Good gravy Beruriah! Although it took me roughly thirty minutes to read your post and all of the comments, it was totally worth it.

    1. I think the “cold” people you are describing are missing out. Not so much because they may miss the “highs”, but because they miss the love they could have invested in Natan. Sure, they also save themselves the pain of the loss, but they miss the love.

    2. I agree with PP and would be very upset if my mother/father or MIL/FIL referred to Critter as our first son instead of Jimmy. They want (as earlier described) to celebrate in the joys of Critter, but save themselves the pain of Jimmy. No, Jimmy is my son too and he will be acknowledged.

    3. Sad to say, I use to be one of those people who had not faced adversity, who thought everything should be perfect. I’m no longer like that. I can clearly remember having a conversation with a friend while pregnant with Jimmy where I said that if he went to ‘x’ college, he’d have to pay for it himself (as opposed to my alma mater, which I would pay for). The thought of Jimmy going to the “wrong” college was devastating. Now I could care less. Critter can go to whatever college he wants or no college at all. Yes, I was superficial.

    4. About those people who say “everything will be fine”. THey aren’t saying it for you, they are saying it for themselves. They need to believe it because they can’t handle things going wrong. By saying “I hope everything is fine” instead of “everything will be fine”, they implicitly acknowledge things can go wrong, and they don’t want think about that.

    5. I’m risk adverse too. Is there any other way to be in a SPAL?

  17. I don’t know at what point I hadn’t faced adversity – seems like I’ve had my share or more in this life. But still, I didn’t think I’d be in this position. I remember wondering what I would ever do if I had a child who wasn’t a high achiever, who didn’t want to do his or her homework or had behavior problems. I didn’t expect it wasn’t possible, I just wondered if I could handle it. Somewhere, somehow, that concern went away. I think probably after my sister’s first miscarriage and then her pregnancy with my nephew, which was complicated not only by the spina bifida, but she had placenta previa that never resolved itself. Now, that doesn’t seem so difficult but at the time I was freaked out. Then, a family friend’s wife died during labor and their son was left with severe CP. That couple had the perfect life – he was a successful fashion-photographer in a major world city, they were unfairly gorgeous and happy and normal and in love. Suddenly, I felt the fragility of life and how silly my concerns over whether I’d have a straight-A student seemed. But still, I didn’t expect to be here. In fact, it kinda seemed like maybe our friends and family had been through so much, how could yet another new terrible thing happen to one of us?

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