Tuesday, April 13, 2010

Have you ever blamed yourself for what happened to your child?



I recently finished a book that's taken me months to read, This Lovely Life. A writer friend of mine knows the author, Vicki Forman, and recommended it to me. It's taken me a while to read because I sobbed every single time I read it. Literally sobbed over a book like I've never sobbed before. The author had twins, Evan and Ellie, born at twenty three weeks gestation who each weighed a pound; this is her memoir.

I have to admit, I don't typically want to read books about ailing or disabled children. I've got a few of these books on my shelf that I keep meaning to get to, but then I never feel like it. There are plenty of real-life moments where I get distressed about Max; I don't need that pain in my reading material. But I was sucked into Vicki's book, and then I had to keep going. It is so honestly and powerfully and beautifully told, its emotions all too familiar—the anger, the grief, the disbelief, the resolve, the heartbreak. It is a book worth the pain it may unearth.

One passage in particular choked me up, the part where Vicki is waiting to hear from doctors about her newborn twins and she's thinking about what she could have done differently:

I shut my eyes to the memories and began a ritual then, in my vigilance, that would accompany me during the next days and weeks and even years, one where I rewound the clock to the moments prior to my walking through the hospital's sliding glass doors that afternoon, as if by staying awake and rewinding the clock I could also change it all, have the story turn out differently. The moment I felt those dull pains, earlier that morning. I call the hospital before noon, I don't wait until I am bleeding. Or earlier. Saturday night. We'd been out to dinner and I'd been almost unable to climb the steps to the restaurant. Why didn't I turn to my husband then and say, I think I need to go to the hospital? Why didn't I recognize my pain as signs of labor?

This passage took me to a painful place, one I hardly ever go to. The place where I wonder if anything I did caused Max's stroke. Factually, what caused it was a loss of oxygen during birth. But that hasn't stopped me from thinking the worst. One thing in particular stands out.

In my seventh or eighth month, I spray-painted the medicine chest in our bathroom. The label said you shouldn't do it if you were pregnant. But I was in extreme nesting mode, determined to have the house "done" before Max came along (we moved in here in August, he was born in December). I was super-prego, full of energy and enthusiasm and excitement. I was in glowing good health. And so I repressed my better judgment, put on a face mask, opened the window and I spray-painted that chest. It took maybe five minutes. As soon as I was done, I regretted it. If anything happens to the baby, I thought, I'll know it was this. Yes, I thought that. But I didn't really think anything would happen. Certainly not anything as insane as a baby having a stroke, a bilateral stroke that's the cause of Max's cerebral palsy.

A doctor I once met with told me the only other moms he'd met whose babies had strokes were moms who'd smoked crack during pregnancy. And I thought, Well, that pretty much absolves me of any responsibility. I also thought, Go to hell for telling me that.

I know the five minutes of spray-painting did not cause Max's stroke. I told our neurologist about it years ago, and he basically said it was crazy talk. It is not something I regularly ponder or feel guilty about. But it is the one black speck of doubt in my mind and it will always be there, no matter what the facts are.

I hope, I really hope, none of you blame yourselves for your children's issues.

Photo by leonrw

49 comments:

  1. Ellen.. I would love to read that book.

    Each night I go to bed taking an Ambien so that my head stops thinking back to the million and one things that I did to cause my child pain and suffering. What I did to make him come early. What I did to make him have CP.

    One person calls it PTSD... I call it mommyhood. I am not sure I will ever NOT feel guility.

    LOVE YOU!

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  2. After my daughter was born and we discovered her cleft palate, I immediately blamed myself. I didn't share this with anyone until nearly three years later during labor with our son.

    I didn't take my prenatal vitamins. I couldn't. They made me sick the first trimester which is when a cleft occurs (between weeks 4 & 6) during development. She had no palate - it was complete cleft of both hard and soft palate.

    Everyone told me there was no cause but I beat myself up pretty badly over not taking my vitamins. I even thought at one point what a neat experiment it would be not to take them and see what happened. Looking back, I was clearly depressed and not thinking straight at all.

    I do know now though that there was absolutely nothing I could have done to have prevented her cleft. That even mommies who faithfully take their vitamins and do everything right have babies with clefts. I simply cannot linger with blame any longer. I need to move forward so the both of us can enjoy life to the fullest.

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  3. My neighbor's child had a stroke. During the pregnancy, she didn't paint or smoke crack or do anything except take care of herself and her baby. Your doctor was right to call it crazy talk. Let go of the doubts. You didn't do anything wrong.
    Hugs,
    JEB

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  4. Thank you. I felt very guilty after my daughter was first diagnosed with her stroke too. Was it that one hot bath I took? I swear it wasn't that hot.

    Ugh and that crack comment. What doctor says that! My neuro and ped both told us that we would never know what happened and I'm just coming to terms with that but its ok and I'm ok with that.

    Thanks for your blog. Its really helped me these last few months.

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  5. This sounds like a good book.

    I think every parent wonders what they have done wrong for something your child went through/is going through.

    When my daughter was born at 31 weeks and was seriously ill, I wondered and asked the doctors constantly if it was something I did, especially when she passed away at 2 months old. This went on for a long time even though the doctors had told me it wasn't anything I had done.

    I even wanted genetics testing performed on myself but, my husband forbid it. He was worried that if there was a chance that a small possibility would have shown that I had any genetics related to her problems, I would beat myself up for the rest of my life. On the otherhand, he was also concerned that if it was his genetics he would do the same or that we would drift apart.

    Even with my living children getting injured, I'll play it over and over in my mind wondering if there was something I could have done to prevent that injury.

    I believe it's a parenting instinct to want to protect their children from any illness or injury.

    I'm sorry for rambling and I hope I made sense. Please know that you and every parent who has a child going through any illness, injury, etc. will always be in my thoughts.

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  6. I do blame myself, but I only take it out now and then and do it. When I got pregnant with my first child, I was smoking a little, turthfully like 3 a day but I never expected to get pregnant the first month I charted my temperatures. Hell, I'd been on the pill for years, just barely stopped it and we weren't even married yet, but my husband was a major smoker and it stinks to high heaven if you don't smoke, so I did a little, and planned to stop. Of course I quit but when my placenta just pooped out and my baby was 3 pounds 2 oz. at 35 weeks I definitely blamed myself, despite my doctor telling me they expect that to be a cause only for multi pack a day smokers or people exposed to toxins, but not for nonsmoker me with my office job. They say placenta poopout is random, maybe higher with older moms (yes, me). Then I was so careful in pregnancy #2 but my baby's metabolic disorder is based on both parents having the same defective gene, or you can't make an MCADD baby. If she hadn't had MCADD she wouldn't have had an anoxic brain injury when she wasn't a strong nurser right away. I blame the nurses too, for not treating her more quickly, but I do blame me, for giving her a crappy start. I don't dwell on it, but I smack myself around some now and then. How can I not??

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  7. Blame? Well, of course. Anyone who claims to never have such thoughts is not being truthful with themselves.

    When you're too old to expect to get pregnant and you go out drinking and dancing every Friday at the bar down the road, it's natural to think "Well, if only I'd not had such a damn good time those two or three times that might have affected me when I didn't even know and thought I had the flu...."

    But what can you do? No one sets out to screw up their kid. Well, most people don't. To put it bluntly, shit just sometimes happens.

    Some people are just .... unlucky. Or their "luck" is deferred--and later, their "misfortune" turns into a kind of good luck, once they shift their paradigms....if you know what I mean. Most people become better people as a consequence of their "bad luck." They gain empathy, compassion, patience, understanding. Stuff they wouldn't have realized had they produced the Perfect Healthy Infant. And some of us--me, certainly--needed an "attitude adjustment." Pity it had to happen the way it did, but again, what can you do?

    There's no time machine where you can go back and "undo" what is done. All you can do is go forward. There's no reverse gear on this particular ride of life! Put the pedal to the metal and roll on through!

    There's really no alternative to pressing ahead smartly, unless you get a kick out of beating yourself up and being miserable about something you can't change. And if that's the case, it's an issue for the mental health professionals to help one wrangle. Life ain't for wimps. It helps to have a support system, that's for sure.

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  8. Being rational about it I know it is not my fault, I do know that. But the thoughts are there, and like you, I have one incident in particular that I suspect to be the cause. Sometimes it consumes me but 6 months after diagnosis I still find it hard to verbalise, mostly in case someone confirms that it is in fact the cause!

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  9. Of course its my fault, but does that make it about me? I did choose the wrong OBGYN what an idiot. I trusted me and my son with an idiot. I only have 5 minutes a day if that to feel sorry for myself then its back to reality. I would love this kid no matter what, but what would he be like if he only had enought oxygen.

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  10. Ellen---

    My son was born at 27 weeks to a cocaine addicted mother. So many people blame "bad" mothers on bad outcomes...and it's true to a point. I personally think God knows what He's doing...and he handpicks US as parents, to take care of his special children.

    We must be doing something right! ;)

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  11. I don't think there is a parent/mom out there with a special child who has not blamed themselves, at some point. And how many people out there are in PERFECT health and do everything PERFECTLY during there pregnancy. NONE...so, it doesn't matter what happens there is always a little place we can go to blame ourselves. Even if it is ridiculous! I am a juvenile diabetic, so of course I have lots of blame room! I obsessed during my pregnancy, my blood sugars were better than my diabetes dr, when I was pregnant. But it didn't matter, she developed a blood clot and the blood clot caused her to have apneac seizures. And a string of bad decisions were made by a string of dr's and nurses and health care workers b/c they had never seen it before at our local community hospital. I also have blamed myself for not INSISTING that they move me to a hospital with a NICU...I asked, I just didn't insist. I think we just have to learn to live with all the "what if's" or absolve ourselves of the guilt. Besides I think Faith was meant to be who she is. It's not easy to say but it is true. GOOD POST, ELLEN! Very raw and thought provoking....

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  12. Yep, yep, yep! I get you. I used to wonder if it was going on the Aerosmith roller coaster or that Psycho ride at DisneyWorld right after I found out I was pregnant. (I guess I sometimes still do...) One more way we torture ourselves...

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  13. Hi Ellen,

    I read Vicki Forman's book as well. It was a very tough read for me-one because it was while my son was just recovering at home from a 75 day stint in the NICU. I could relate to all the emotional roller coaster she wrote about it. But it also gave me such encouragement and illustrated so beautifully the strength that we have as mothers.

    For me, the single thing I have blamed myself is for trying a VBAC. I researched and deliberated but in the end never thought I could be that 10% of women who have major complications. So ever since the day I delivered LJ I have guilt that it is all my fault.

    I do know that at THAT time, this was the right decision for me and my family. I am a work in progress most of the time...and a piece of work the rest:)

    Hugs

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  14. But, oh, I did. Not so much now, but I used to. It's a heavy guilt to carry for the rest of your life.

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  15. I often blame myself. Maybe my smoking around Jennifer a few times caused some issues, maybe some of the stuff I used around the house were toxic...stuff like that. I think it's normal to feel that way, and I know she has often felt that way about things she has done.

    Hell, I blame myself NOW for holding him back because of my own issues. And I blame myself because of how Carter, my so-called 'normal' son, will turn out because of the issues I have with my two fathers.

    But not all the time. Sometimes, I remember that 'S' happens, too. Stuff beyond one's control.

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  16. I didn't know that I was pregnant with Emmett until I was 10 weeks along. I know that I had some wine during that time, and I think I took OTC cold medicine. So yeah, I do blame myself.

    But that doctor who made the crack comment? What a JACKASS.

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  17. Oh how my list of blame is long...If I had not required antidepressants during pregnancy, if I had chosen a different doctor, if I had been willing to drive further for better care, if I had not gotten out of bed when I was on bedrest... I try to keep these things tucked away and I rarely let them surface because when I do I am afraid I will loose it. I just try to remind myself that in the end there is a lot of blame to share and a long string of things that went wrong and that it doesn't really matter because what is done is done and there is no going back as bad as I wish there was. All I can do is move forward with what is. Somedays are easier than others. Thank you for helping me to know I'm not the only one who feels this.

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  18. Gabe has spina bifida-90% of cases can be prevented by taking adequate folic acid. NOW I did take my vitamins and was taking them before conceiving so the folic acid wasn't an issue...except that every gd specialist we saw insisted this was MY fault and I could have prevented this awful disability if I would have been a good enough mother to take my vitamins. Finally after months of depression and guilt and having to hear these a-holes tell me it was my fault, I stood up in one of their offices and literally SCREAMED that I had been taking my vitamins and that I was sick of them spending more time trying to figure out how to blame someone for this than take action and help my son. That was the day I let go of my guilt-sure I have twinges here and there but I don't ever beat myself up over-I spent too much time dwelling on it and it got me nowhere.

    I have a friend who has a child who had a stroke in utero-she was not on crack and did nothing to "cause it" much like my ob told me the day I found out Gabe had SB, "sometimes it just happens despite trying to make sure everything goes perfectly"
    *hugs to you Ellen*

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  19. Yes, I blame myself for AJ's accident. Every single day. I picked the daycare where he got the peanut that ultimately choked him. I remember having reservations, but hey! They were licensed! So, I shoved my concerns down... as a mommy, how did I not know better than to leave my babies there? And look... my concerns were valid.

    *sigh*

    Being a mommy is hard. Being a mommy with profound guilt is a million times harder.

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  20. Ah, the guilt. How do you create a child with a wacko DNA mutation and NOT feel guilty? Yes, I know that "genetic" does not mean "hereditary" and that a de novo mutation is just that, but still. I grew him in my body, and I grew him... wrong. I also know what you mean about not reading books about disabilities and other fun things. I gave up watching ER after the NICU -- I tell people that I need my entertainment to be entertaining.

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  21. My son (youngest of 6) has severe verbal apraxia. I know I drank a lot of Diet Coke and ate tuna when I was pregnant with him - but I did the same with my other 5 kids and none of them have apraxia. So no, I don't blame myself at all. But if I didn't have the other 5 to compare to, I would probably blame myself big time.

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  22. Whne I was pregnany with E., my go-to food was canned tuna. The light stuff, not white. This was just before they started saying not to eat it because the mercury could cause neurological damage, and I ate it daily.

    With my last pregnancy, my doctor was telling me not to eat tuna or salmon just in case and I started crying right in his office, asking how I was going to get my omegas without causing my kid neurological damage. Then I went home and cried over all the tuna I ate with E.

    Oh, and the videos I let him watch when along with his older siblings when he was a baby because they actually kept him quiet without me having to hold him. Because they say that TV before age 18 months can change your kid's brain waves and attention span.

    Hence the autism, of course.

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  23. The comment about us all being a "work in progress" strikes me as so important to remember, because as mothers we will blame ourselves, and feel guilty, for everything that happens to our children (typically developing and disabled). I have learned how to forgive myself, every day, and hope you forgive yourself too. Thank you for opening up such a valuable and necessary discussion.

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  24. at 35 weeks, I became very ill at home with severe aches and pains...at that point I had been on horizontal bedrest for 7 weeks (twins and no cervical length at 28 weeks). My husband had to go to court that day and I felt that I couldn't be left home alone so I just told him to drop me off at the hospital. I didn't have a temp but my blood pressure was a little low so they gave me fluids and then said my husband could pick me up in a few hours. I ended up going into labor in the next hour or so. The twins were born well. After birth, I asked a nurse if I should not go see the babies b/c I had come into the hospital sick. She said it was probably labor pains and dehydration (I had no fever) and it was alright to visit them in the NICU. Then, at 5 days of life, one of the boys spiked a fever and began seizing. Thereafter, he slipped into a semi-comatose state for several weeks. MRI at 8 days of life showed extensive damage to his white matter. The timing of the MRI indicated that the damage occurred after birth.

    The millions of tests for different viruses, metabolic disorders, etc. all came back negative. In the end, the neurologist suspects that I had swine flu and passed it on to my son.

    So, yes, I blame myself occasionally but I don't torture myself about it.

    Julie Lewin

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  25. It's hard to logically blame myself. I mean, I did all the right stuff: prenatal vitamins, cut out soda, coffee, etc. Not even a bite of unpasteurized cheese- even when that brie cheese looked like freaking nectar from the gods!!
    Maybe if my kid could get a solid diagnosis, it would be easier to place blame, but it's not.
    So, while I don't really blame myself per se, I have said to myself (and out loud) that I'm done. No more babies for me because "maybe I just don't make good babies".

    I hate hearing that I was chosen to raise my daughter, but I do agree that loads of the other wilting flower, wimpy moms couldn't handle a quarter of my daily life. I do know she's lucky to have ME.

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  26. I am so moved by your comments. It's unbelievable how we all KNOW what happened to our kids wasn't our faults, and yet, we can't help but think about it.

    Oh, and about the tuna thing: I've written before about how one eccentric coworker I had looked at me one day when we were discussing Max and said, "It was because you ate too much tuna, right?" One word: OMG. More crazy talk.

    In the what-if category, I've had magical thinking about what if someone had never referred me to the practice I went to. What if there was a different, more experienced doctor on call the night Max was born. Again, I don't obsess. The guilt and what-ifs have dwindled as the years have passed, and I'm sure it will be the same for many of you.

    And, yes, our kids are lucky to have us.

    GROUP HUG!

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  27. I know Vicki and had the great privelage of having her come speak at our NICU when she was in town. This book is incredibly powerful.

    My son has a severe language delay of unknown origin, and some motor planning problems. ASD or no, we don't know. About 2 months ago I learned about a potential connection between preterm labor, use of terbualine to stop labor, and links to autism. When I heard this, my heart stopped. Preterm labor at 24 wks. 3 doses of terb. Overload of guilt.

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  28. I also really liked that book as well. I don't blame myself anymore, because Cici's accident should NOT have happened at all. Her accident was pure massive unluckiness. Her twin was in the high chair next to her, eating the same food, and didn't choke at all. Ever. We just got really, really unlucky. But, I still get the comments from people about "choking hazards" and stuff, yet I see people feeding their babies cheetos. honestly.

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  29. Group hug indeed. I have blamed myself more times than I can count. I may have to read this book if I can handle it.

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  30. I think about this every now and then and when it almost brings me to tears..I stop.

    I totally blame myself. I put my son in one of those bouncy seats when he was only 2 days old and I'm convinced that's what caused the oxygen loss. No matter how many people tell me that's not what caused it, I'll never stop thinking that it's my fault. ALL my FAULT.

    Ellen, Thank you for this posting and letting me send this out to the world.

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  31. I blame myself all the time for my daughters CP. I have a double whammy incompetant cervix and tendency to go into premature labor. I lost a baby boy at 24 weeks before my daughter was born at 28 weeks and eventually diagnosed with cp. There is definitely a part of me that says if I had done things differently this would not have happened. It haunts me.

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  32. Doesn't everyone blame themselves? Even just a little? Even when we know there was NOTHING we could have done differently to avoid what happened to our kids?
    I got CMV. I got it in my second trimester, and I had no symptoms. I had never heard of it, as most of us haven't, until my baby was diagnosed with the congenital form. I passed this on to my child. My body failed me, and failed her. But all I did was take care of my older toddler while I was pregnant. I can't think of anything I would have done differently to avoid this, even if I had known what it was. It makes me sad that we are not warned about it, and that there were things I could have done to avoid getting it.

    And so I blame myself. But I do try not to focus on it, and instead focus on what I can do to help my child, now that she has all of these disabilities. it's hard not to feel guilty, and hard to accept it all. But I try.

    And my cousin's baby had a stroke at birth a year ago. She took care of herself so well during that pregnancy, and did everything by the book. He still had a stroke. It's not her fault, and it wasn't yours either. Isn't it hard to accept, even when we know it's true!

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  33. I took a few sips of Champagne late in my second trimester and boy do I feel guilty about that.
    I also chose to wait it out an extra week instead of being induced at 40.
    There was a lull in movement the day before I went in, but I never REALLY counted kicks so I just thought it was in my head.
    I also moved a few times during my pregnancy.

    I try not to beat myself up. It doesn't help, although I went through a period where I did nothing but blame myself.

    And because I was honest about my party PAST (I emphasize past) the nurses (never saw a Doc for my son at my birthing hospital) jumped down my throat asking me what drugs I was on and oh, they didn't believe me that I wasn't doing anything so they did a UA on him anyway. whatever. I know they were trying to figure out what was wrong but they didn't help me one bit.
    funny enough (not really) my history is now INCORRECTLY placed in medical files that can probably never be corrected since they were transferred from one place to another. grr. however, when most professionals here what I do for my son, they know I do everything I can for him

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  34. Well, since Addison's genetic issue is totally inherited from me, yes, I feel tremendous guilt. I have a balanced translocation, just like 1 in 500 people walking around who have no clue until something happens. Addison was unlucky enough to get unbalanced, so she has extra chromosome 9 hooked on to her 16. I used to think about it all the time until about a year ago when I read The Shack. Something in that book spoke to me about forgiveness. I'm not usually the kind of person who has life changing experiences through books, but I finally let it all go. I have been destined to be her mom since I was even created, and accepting that has given me peace. Do I wish she wasn't challenged? Of course. But I also know what a blessing she is and realize how much she has changed my life for the better. So I try really hard not to feel the guilt anymore. It was very unhealthy and still makes me cry and feel all panicky if I think about it too much.

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  35. Oh, Ellen, how can I post this in a coherent way? My situation is different from the other families responding in that I passed the hemophilia gene on to my son. I have 2 nephews with hemophilia, and at the time I had carrier testing done, the results were borderline/inconclusive. My husband and I decided that we'd rather have a child with hemophilia than no children at all. So we proceeded with building a family, deceiving ourselves into thinking that there was no chance it could happen to us. Little did we know what heartache and physical pain our son would experience. Despite knowing cognitively that it's irrational, there have been times when I have felt tremendous guilt. And I grieved every bit as much when my daughters were both diagnosed as carriers as when my son was diagnosed with the disorder. Having in-laws heap blame on me certainly hasn't been helpful either.

    All that being said, over the past decade, these feelings of guilt have been the exception more than the rule. I see that our precious boy is "fearfully and wonderfully made". And we wouldn't trade him for the world!

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  36. You know, one ignorant jerk of a neurologist asked me after Monkey was diagnosed if I used drugs while pregnant as well. When I told him that I most certainly did not (heck, I have never been a druggie and I didn't even drink coffee while pregnant!), he said something along the lines of, "Oh, well that's only one cause of stroke, I was just wondering." It just goes to show that even the most educated people can be insensitive morons. Also, anyone who knows anything about childhood stroke knows that a great percentage of young survivors have one for no known reason.
    Anyway, I did blame myself for Monkey's stroke for a very long time. Yes, there was the time when I may have inhaled bleach for a second or two by accident. There was the time I mistakenly took a sip of Diet Coke. There was that time I had to hit the brakes really hard while trying. I racked my brain for every irrational explanation for why such a thing had happened to my baby. The bottom line was that I, the person who was supposed to protect him from all else, was unable to protect him from his stroke. As a result, I went into a deep depression for about a year.

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  37. that guilt doesn't seem to go away. I know I didn't do anything to cause her disabilities at birth, but later on, as she's grown, did I do enough to help her stay strong? She's losing ground. Her cerebellum keeps shrinking and no one knows why and I keep thinking maybe I don't feed her enough healthy food, or force vitamins on her. And maybe I should force her to keep going to doctors for more tests, even though she's so traumatized now she cries in the car on the way to the appointment. Do I work hard enough, give enough, love her enough, to help her stay strong? I don't know. I just do the best I can and love her with all my heart and try very, very hard not to think about What-if.

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  38. It's clear, we need to ease up on ourselves. Maybe seeing all of these comments will help some of us better rationalize what we know in our heads but still persist in feeling in our hearts: that we are not the causes of what happened to our kids.

    Terena, I do not know you all that well, but I KNOW: you are a good mother. You do the best you can. You give the best love you can. Please know that.

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  39. Wow Ellen. Sometimes I think there is some kind of psychic line between your home and mine. I was just today thinking about this very topic - and it's a topic I haven't thought about for a very, very long time.

    I can't even remember why I was thinking about it today, but it still made me well with tears.

    Here's what I was remembering:
    S's CP was caused by lack of oxygen at birth too. In those last few minutes of labour, the midwife was screaming at me to push harder. I tried, I really did, but I didn't have much more to give (I had been in labour for 36 hours). I was so tired.

    For the next few days, as he lay fighting for life in hospital I blamed myself every single minute. If ONLY I had pushed harder. I didn't tell this to anyone. I was too filled with guilt and shame that I was 'too tired' to bring my son safely into the world.

    On day 3, I cracked and spoke to a very caring midwife in the hospital and told her it was my fault. She was horrified. Not at what I'd done, but at what I thought. She couldn't believe that no-one had explained to me in more detail what had happened.

    She said I could have pushed til the cows came home but it wouldn't have made any difference. His shoulder was STUCK. Wedged tight. Pushing was futile.

    I was so relieved, so incredibly relieved and I felt the guilt slip from my shoulders.

    But I still carry with me the memories of how devastating that guilt was. My heart goes out to anyone who feels such guilt. A terrible burden for any parent to have to deal with.

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  40. Was reading this and wanted to respond to Barb.

    Barb, my husband has severe hemophilia and makes me happier than anyone/anything else in the world could. And he's happy, too. I know all of you recognize the gifts that your children are to the world and that knowing that gets you through the bad times.

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  41. I'm out busy one day, and look what happens!

    How you develop these topics, and create the atmosphere where we feel safe enough to share, is something I'm in awe of.

    Yeah, I do blame someone.

    It's my husband, for ignoring me trying to convince of my labor, 4 1/2 wks early.

    He didnt' listen.

    What can you do. It's done.

    He was born early. He had a brain bleed. And then a seizure.

    and that's how it goes.

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  42. I blamed myself for doing things "wrong" - ate tuna while pregnant, got a flu shot, gave her a flu shot when she was 6mo.

    Then I had another child and did everything "right" this time. And we still got another autism diagnosis.

    As awful as it was, it completely absolved me of any guilt whatsoever. I considered it my own little experiment group. After that I started reading Simon Baron-Cohen and I really left the question behind. Having it happen a second time is something I wouldn't wish on a dog, but at least it showed me that it was nothing but genetics. Two girls on the spectrum: those are some damn strong genes!

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  43. Great post and important topic. I am not a mother of a child with special needs, but I am a mother. When I was pregnant with my daughter I was gripped by terror. If something went wrong I knew it would be my fault - b/c I ate fish or coffee or chocolate or soft cheese (b/c I didn't know which ones were considered soft & which ones were hard) or a sandwich (they have sulfites), or breathed in polluted air while walking along the city streets to my job.

    So I tried not to breath or eat and I vowed never to carry a child again. And I didn't. My second child is adopted. He has some learning issues due to his 1st 4 yrs. of life in a Russian orphanage, but at least they are not my fault.

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  44. I don't blame myself. I do wonder, curious like, if things I did to my body, not nice things, things one does in college... maybe some of those things may have contributed to Graham's birth defect.

    I wonder. That is all. I don't beat myself up. I don't blame myself.

    I just wonder.

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  45. I blame myself daily...my body delivered Abby and Caitlin early at 29 weeks 2 days...My girls are going to turn 7 in one month and the blame is still there. Although, weaker than it was when they were born. I just keep reminding myself that Abby wouldn't be who she is today, but I also wonder who she would have been with out CP. I watch her twin run around and do "normal" kid stuff and it makes me ache for Abby and what she "could" have done. Sometimes I lose sight of who she is because I am too focused on what I perceive she has lost. It still hurts...

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  46. Thanks so much for this thread. My son was born at 32 weeks barely alive, and it took 6 months to figure out what caused his low muscle tone, grades 2 and 3 brain bleed, inability to swallow or breath unassisted... During that whole time I kept thinking about my pregnancy -- I felt so good and so strong while I was pregnant that I sometimes acted like I wasn't pregnant, and usually felt proud about that. But there was one time in the first trimester when I really did forget about being cautious and I sat in very hot hot springs for a few minutes before jumping out, worried. I had forgotten all about the hot springs incident until Lucas was born and doctors kept asking me about my pregnancy. When I finally summoned up the courage to remind my partner about the hot springs, and he asked the doctors for me, they assured us that I didn't cause the harm. But I thought that maybe they were just saying that to make me feel better.

    Ironically, when we learned that Lucas has a rare, x-linked genetic disease (meaning he got the funky DNA from me), I felt not guilt but a wave of relief. It was relieving to know what was causing his troubles, even though the diagnosis took away much hope for his long-term recovery. And selfishly I was also relieved to know the choices I made probably hadn't led to his health problems, even if he inherited his disease from me.

    I am struck by how relieving it is to share this story and to hear other moms' stories of guilt -- I hope it helps us all to let go of the guilt and feel proud of all the incredible love we share with our kids, families and communities.

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  47. This is such an important discussion, and I am so happy to have come upon it. Vicki's book opened a lot of doors for me as well, in terms of seeing through her struggle how we blame ourselves and fight our own healing every step of the way when something goes awry with our kids. Thanks for keeping the conversation going, and (as always) for sharing Max's beautiful smile.

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  48. I am new to your blog...but I can't stop reading posts!! I have a 3 1/2 year old with mild cp, severe dysphasia, and apraxia as well as several other smaller diagnoses.

    I feel guilty at times because I got pregnant immediately following a miscarriage. There was not even one cycle to prepare my body to carry a pregnancy to term, yet miraculously, my daughter survived! Unfortunately, she faced challenging odds from conception.

    I was put on bedrest at 36 weeks due to low fluid levels but refused to allow them to induce. Then at 39 weeks,after weekly ultrasounds and non-stress tests, they realized that the umbilical cord had stopped working and she had only gained 3 oz in the last 3 weeks!! My stubbornness of not wanting my daughter to be born until I was ready, just made things more difficult for her.

    I was immediately induced and she was born in distress with her cord rapped around her neck. She didn't breathe for almost 4 minutes. Although small, she seemed okay and we took her home. At 2 1/2 days old, she stopped breathing when nursing and when I realized that she wasn't sucking anymore and I looked down, she was turning blue.

    After 4 days back in the hospital and numerous tests, they were unable to determine what was wrong. She was put on a monitor for 4 months and we saw no complications.

    She was a quiet and content baby and with a 12 year old and 2 year old sons, I needed an easy child! Everything seemed okay until her 9 month well-baby visit when she was diagnosed with failure to thrive because she stopped growing and showed signs of developmental delay.

    That started our journey into finding all of the things that made Jordan special. 3 years later, I know we still have a long way to go to fully understanding the intricacies of it all.

    I do still feel some guilt, but I also know that I treasure how she has made me into a better mom!

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Thanks for sharing!