Monday, April 07, 2008

New piece in the New York Times

Here's the linky. Enjoy. And let me know what you think.

25 comments:

Lindsay said...

Good article.

My mother-in-law and i have had conversations about this very thing. My husband (her eldest son) was born dead. They worked on him for several minutes, to no avail. Just after they'd finished writing out his death certificate, he started moving on his own. She definitely feels that the events of his birth had a profound impact on how she's related to him (and reacted to situations involving him) for the majority of his life.

Piffle said...

Absolutely true article. My daughter needed open-heart surgery shortly after birth; and took months to recover properly. Between that and the earlier miscarriages I had, I react intensely to the fragility of life. She's seven now, and perfectly healthy.

And you are correct about survival mode too; you just deal with the moment. My husband was very ill the last two years, and my mother made a comment about how she would just have collapsed. I know my mother well enough to know that wasn't true, but she hasn't been through it and doesn't know her own resources. You simply focus on what needs to be done now. Personally, I also cope by obsessively collecting information via the net on whatever the problem is. Knowledge is power. Knowledge is (the illusion of) control. Sometimes illusions are necessary.

Anonymous said...

Harriet--this is exactly how I feel (only written much more beautifully than I could ever hope to) My husband wonders why I can't "get over it" and yet I wonder how to do something productive with the anguished energy this illness caused for my daughter, for my whole family and me. And mostly I hope to keep others from suffering the way my daughter (and our whole family) did. You are a great writer--thank you

ps what CAN we do about the awful links the NY times puts in their articles about anorexia--no mention of biological/genetic roots--still all about soical and family issues?

sc

hotsauce said...

i got shivers reading that. you write so beautifully.

my husband and i don't live in the u.s., and parents here are *so* lax with safety. example A, there are these little two-wheeled wooden bikes that are popular for toddlers. they have no pedals and no brakes -- the kids just scoot along with their feet and then coast when they get up enough speed. i've never seen training wheels here, just those little wooden death machines. they're supposed to be better for teaching balance. and fine, if you're just scooting along on flat ground, okay, but i regularly see kids flying down long, steep hills with the parents walking casually behind them. it's unbelievable. i already foresee myself being the one neurotic mother in the playgroup in a few years, whenever we have kids.

Anonymous said...

Thank you.

mary said...

This really hit home with me Harriet and I know with many others. Really touched us where we live. thank you

Maureen said...

my son, now 24, was diagnosed with Kawasaki's when he was 18 months old. In the end, he had 4 coronary aneurysms. I was 29 at the time and quite overwhelmed by the severity of the illness in my previously sturdy and delightful baby, and by all the doctors, who disagreed with each other about whether to operate. In the end we didn't, and he's fine, but it was long slog; the last appointment with the cardiologist was the day my son registered for high school. I became clinically depressed during this time, and how well I remember those post-tramatic episodes, when the acute phase was over and everything seemed to be fine, and I'd wake up in the middle of the night, weeping. I lost a lot of weight; my marriage broke up. Really wish I'd seen this article back then. My son is extremely healthy now, an athlete. I know he never thinks about Kawasaki's -- but I do. What a nightmare. Good luck with your girls. Thanks for the article.

Jane said...

Thanks for writing this Harriet.

Karen said...

I had always wondered what a "normal" reaction to seeing your child close to death was; my parents reacted to my suicidal depression with denial and blamed me for being selfish and demanding too much attention.

I really needed to know that most parents will actually face it when they look their child's death in the face. Thank you.

wellroundedtype2 said...

Beautiful article.
I think it's healthy to process the fear, guilt, anger and worry after the fact. Just because everyone is okay at the moment, doesn't mean you FEEL okay.
I think that during those intensely difficult times, thoughts and feelings get mired in the stress-hormone soup we have coursing through our bodies, and sometimes little things re-trigger those thoughts/feelings (I guess that's PTSD) -- it's entirely understandable that you couldn't go back to the way things were before, emotionally speaking.
Thank you for this blog, and for the link, and for sharing your life with the world.

Tracy said...

Thank you, Harriet. That we seek each other out, even without discussing what brought us to where we are now, is the thing that sticks with me in my life-beyond-near-death-of-a-child. Yet again, I hear that I am not alone; always a nice thing to hear.

Harriet said...

sc,
I wish I knew what to do about the Times' links. They stink, I agree. There is nothing I can say about it, alas.

hotsauce, It's a funny thing about being the neurotic mother. I was that before either kid got sick. I remember one dad who used to ride his 8 year old on his handlebars every morning to the camp bus stop (sans helmet, needless to say). One day she fell off, hit her head, and was knocked unconscious. It was all I could not to say "I told you so!" (I did restrain myself, fortunately.) Mostly though I envy those non-neurotic parents, because mostly things do not go wrong, and it's much more fun to lighten up about such worries.

Maureen, thanks for sharing about the kawasaki. I know virtually no one else whose child had this disease. It's so good to hear that despite the aneurysms your son is fine now. My daughter gets sick so much more easily now than she did before, 4 years post KD, and I worry about what means down the line.

Thank you to all of you for writing and sharing your feelings and experiences. I write so as not to feel alone, and so that others don't have to feel alone. It's good when that feeling of community happens.

Nancy said...

Wow----your article in the NYT made me cry because it validates my own experience to a tee. When you’ve been at the very edge with your child, life is never quite the same. After the sudden and unexpected loss of my 46 yr old husband, our fragile 14 year old daughter, even with immediate help and counseling, went into a downward spiral of self-destruction. She made serious attempts at killing herself several times, including throwing herself out of the car when I was driving.After several hospitalizations, she was diagnosed with bipolar disorder.

The next decade was another terrifying rollercoaster ride of different medications, relapses, non-compliance, etc. She turned 25 this past January and is doing well and working full time for a wonderful organization. That she is alive today is still a miracle of sorts. I'm proud of her courage, perseverance and strength in the face of so much loss.

I've been dealing with similar PTSD sx for several years and have worked with a wonderful therapist. I've come a long way, too, but before I ran across your article, I had sent a long email to my sister about my endless worrying---and gosh, why would I be like this when my daughter has recently had many successes???! Well, your poignant words and personal experience gave me an answer. “Stop worrying and enjoy!” is still very often hard to embrace, especially when the illness is chronic. That illusion of safety and control was indeed lost forever.Thank you for your comforting words of validation. I don't feel so weird now! I wish I could give you a hug in person---but I can't so please consider yourself hugged by a very grateful mother. ~~Nancy

Shari said...

Thank you so much for this article. My daughter nearly died at 2 weeks choking on spit up while sleeping on her back, but thanks to that wonderful blue syringe thing they give you to suck mucous out of an infants mouth/nose and some great paramedics we were able to save her. She wore a monitor until she was 9 months old so we could see if her breathing would stop or another problem would develop which was nerve wracking in itself. Today she is a happy 6 year old with asthma and doing fine, however, I still need to be able to hear her breathe at night and find myself sleeping in her room to make sure she is really okay. I hope to grow out of this someday, but I still get panic attacks and when she is having an asthma attack it brings it all back. It's nice to know I'm not alone because people do thing I should just forget about it, but I guess they weren't there when I was holding that almost lifeless little bundle in my arms and hoping that I was doing the right thing to try and get her breathing again. Anyway, I just wanted to say thanks for a great article.

Harriet said...

Wow--thank you both for sharing your stories.

You wouldn't believe the stories I've heard today. If I didn't already have PTSD I might be developing it now, because there are so many ways for things to go wrong with our children. . . .

But it's always good to know that other people feel the same way.

Mrs. B said...

Harriet;

You are an amazing writer. I read your article and had all day to think about it. We lost our first daughter, had 2 miscarriages and have a daughter dealing with anorexia now. I remember when Ashley died just going through the motions for a while(6 weeks or more). Then having two miscarriages in a year. When we finially brought our oldest home-- I wa severy fearful and over protective. Then came number two--17 months later. I got over that ok. Now you just want to go back to to the overprotective stage again. Thanks for putiing into words exactly how I felt.

Beth said...

I was on the Metro North (Chappaqua to NYC) returning from work, reading your piece in the Times and time stopped. And I stopped reading to stare out the window at the bare, but budding landscape. My heart went out to you -- and was also flooded with the memory of my daughter, at six years old, almost 20 years ago, who stopped eating and was hospitalized for 6 weeks. I haven't slept normally since. I, too, felt what I came to call post-traumatic stress disorder. No, you don't get over it. But you do, eventually move on and find a way to be happy again -- even if sleep is still elusive.

Erin said...

Thank you - finally, I have found someone who understands. Still - I am actually not a parent who almost lost a child, I am a 25 year old women who almost lost her mother. During the ordeal (stage 3 cancer), I was pretty strong - but when it was finally all over, every last bit of chemo and radiation, I began to have the same symptoms that you describe. We never expect to have something like this happen to your children (or in my case, my rather young mother), but what I never expected was what happened afterwords. Your article is exceptional in capturing this issue.

Harriet said...

I'm so honored in having you offer your stories so eloquently. Thank *you.*

Beth said...

For me your article was such an eye opener. My son was 9 months when he was diagnosed and treated for KD.. it was his first illness, first fever, and it rocked my world. They diagnosed me with Postpartum depression when I apparently had a harder time recovering than he did. When my 2nd child was born, at 39 weeks, weighing just under 5 lbs, I immediately went straight back to that dark place. Once again diagnosed with PPD I have been struggling with these feelings that I call "the bottom is about to DROP OUT" now for about 5 months. Your article opened my eyes and made me really see why I feel this way. I can't thank you enough.
:)

Maryanne Stroud Gabbani said...

Thank you for giving me the words to understand how I was living for the five years after my husband's death. I found myself the sole support of my minor children (19 and 16 years old) and the executor of his complex estate of companies but without a penny to support us in a country that puts people into prison for debt, Egypt. It all worked out in the end, thank heaven, but it was five years in hell that I survived in that "extended present tense." I only now am starting to feel again and it is with the utmost of caution.

Amazing how the words help to frame our experience and to give us a handle with which to deal with our reality. Thank you again.

Anonymous said...

Harriet,
We nearly lost our college age son from a severe bout of Crohn's disease leaving him in the surgical ICU for nearly 3 months. His recuperation included weaning off a trach and learning how to walk and talk again. Thankfully he was able to return to university, graduate and be working in his chosen field. I count our blessings every minute, realizing how fragile life is. Thank you for writing such a poignant piece. To this day ( seven years later) I remain forever grateful to a little good medicine along with lots of prayers and hope. Thanks for telling your story and for allowing me not to feel alone.

Elyse

Harriet said...

Elyse,
Thank *you* for sharing your story. I'm so glad your son is doing well now.

Anonymous said...

My 19 year old daughter was paralyzed in a skiing accident. When I see girls her age walk down the street hand in hand with their boyfriends or tossing a frisby, a profound wave of sadness sometimes passes over me. I cannot freely enjoy activities I used to, because I remember that she cannot. And, close as we are, I cannot let her know how I am affected, because that would cause HER pain. I feel like I live in a terrible, secret world. Although I laugh, love and enjoy life, I know that I will never be the same.

Harriet said...

oh anonymous, I can imagine only too well. I am so so sorry. You're right--you won't be the same. But I do believe things will get better. Have you ever seen the show Joan of Arcadia? You might be interested. One of the characters is an 18 year old boy who's paralyzed in a car accident. There are several episodes focusing on how the family copes. I wonder what you'd think of them.