The Heart is a Muscle, Redux

April 4, 2007

It was just over two and a half years ago that we learned that my nephew, Tanner, has Duchenne’s Muscular Dystrophy, and that he will die from it. He was not quite five years old at the time. We were devastated. Wrecked. Heartbroken.

What very nearly got lost in the distress of those days and weeks and months was this: the decision that my husband and I had made, just weeks before learning of Tanner’s diagnosis, to start a family of our own. I say very nearly, because that decision wasn’t forgotten about entirely: it was pushed to the sidelines, too troubling a project to continue to consider openly. Too troubling, because with Tanner’s diagnosis came provisional diagnoses for both my sister and I: we were likely carriers of the gene that causes DMD, and as carriers, any male children that we might bear had a one-in-two chance of inheriting the fatal condition.

My husband and I immediately ceased all talks concerning a family of our own. We needed to come to terms with Tanner, first. And we needed to learn more about what it might mean if I carried the gene. I underwent genetic testing, and genetic counselling. Months of it. I learned more about what I already knew: that if I did carry the gene, as was likely, I would likely pass it on to any son that I might bear, and that he would die from DMD. I also learned that as a carrier, I would have diminished muscular capacity myself. Weaker lungs. Weaker heart. That I had a history of respiratory weakness that worsened with illness was regarded by my geneticist as a very bad sign.

At the time, the physical weakness that I might suffer due to such a condition seemed unimportant. I was concerned for Tanner, and for any future children I might have. When a close friend expressed horror at my announcement that Husband and I had begun reconsidering starting a family – her argument, that I was irresponsible to consider bringing such a child into the world, and that I would no doubt be compromising my own health to do so – I was unmoved. I would love any child that I might bear, no matter how brief or limited his life. And I would risk my life to have that child. I would give my life for that child. I knew this, in my soul and in my heart.

My tests came back more or less negative, in a complicated odds-on-odds-off genetic calculation that was at once reassuring and confusing. And we went on to have WonderBaby, and have been celebrating life ever since. But I’ve never forgotten my commitment to do anything and everything for my children, including risk my life. And I’ve never forgotten the fear that attended the making of that commitment. But fear, now, is entirely bound up in love, and so much more complicated.

And so when it felt that my heart was giving out earlier this week, the fear came rushing back in a torrent muddied by love and desperation. I was terrified. I had overtaxed my muscles, I thought; the geneticists had erred or misinterpreted (as they did with my sister), the muscle that is my heart was failing, I would die, and for all of my commitment to giving everything, everything, to the care and love of my baby, I would, in the end, lose her by losing myself. The hours between the first moments of the attack and the moment when the ER doctor said your heart looks fine were as terrifying (more than? a calculation that I cannot make) as the darkest moments of my troubled pregnancy.

It seems that I have nothing immediate to worry about, for now. Whatever happened, it did not damage my heart, it did not weaken my heart, it did not hurt my heart in any manner other than figurative. My heart, they tell me, is strong. The attack was not heartburn, nor was it anxiety (which I knew before I even hit the ER – I have extensive experience with both these plagues), but neither was it cardiac arrest and that, my friends, is tremendously reassuring. There is still, however, enough unknownness to leave me discomfited, to keep me gripped, however loosely, in the bonds of anxiety. I hope that it turns out, after more poking and prodding, to have been a muscle cramp, one that has nothing whatsoever to do with dystrophies or other muscular degenerations. I hope that it’s nothing, nothing at all. I hope that all of this hand-wringing is just that – the hand-wringing of a pathological hand-wringer.

Because although my heart remains undamaged, it was weakened, just a little, by that frenzied little dance with fear. I would give my life, in a heartbeat, for WonderBaby – my own life is, in so many ways, much less precious to me than is hers. But to be pulled away from her precious life seems unbearable, in a way that I hadn’t quite fully appreciated until that tremor of a heartbeat rattled my soul. That other parents face or have faced that rattling to the full - feel that pull to its end – and live on with their broken hearts still beating astounds me and humbles me.

Gots to be gentle with my ma. I needs her heart.

I just need some rest now. Will resume normal blogging activities soonest.

Also, I am so sorry for scaring anybody the other day with my ohmygodamidyingiamsoscared post of the other day. But it was so necessary to vent my anxiety, to put trembling hands to keyboard to make the minutes fly by more quickly and to slow the pounding of my troubled heart. That you were all there, listening and – so immediately – whispering soothing words of comfort, was so, so wonderful.

Such a community. Whatever else we might say about it – and we said so, so many things this past weekend, the little group of us in Kentucky – it is this: it is intimate, and warm, in the most wonderful and unlikely ways. I’ll have more to say about this when I’m back on my fingers.

Until then, just this: thank you.

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    { 81 comments }

    PunditMom April 4, 2007 at 12:48 pm

    I’m so sorry I am just reading the posts today about what you went through and that it was so terrifying. I’m glad to hear that they think things are OK, but still not knowing exactly what was going on is a scary thing to deal with, especially as a mother.

    My thoughts are with you and your family and I hope you are feeling better, both physically and mentally, soon.

    oooo

    Mimi April 4, 2007 at 12:58 pm

    Yay! I’m so glad you’re ok. And what a heartbreaker of a picture of Wonder Baby.

    Life’s complications trip us up, but they become us, too, and you’re handling yourself with much grace and thoughtfulness.

    Anonymous April 4, 2007 at 1:06 pm

    I never feared death until my babies were born. Now I am terrified of dying, because it means that my babies would lose their mother. But even more than fearing my own death, I am gripped with fear that my husband and I should die at the same time. We travel on seperate flights – no joke.

    I’m not worried about you, your heart is big and your heart is strong – I know this from reading your blog. xoxo

    merseydotes April 4, 2007 at 1:13 pm

    So glad it wasn’t anything serious, though I’m sure the lack of diagnosis isn’t 100% comforting.

    Don’t underestimate the power of fighting to stay alive for your children. I know two very close family friends who beat their diagnoses by long shots – more than doubling their time to live in the face of stage four colon cancer and pancreatic cancer. Wanting to stay with your children, wanting to meet your grandchildren…it can be a powerful force.

    gingajoy April 4, 2007 at 1:14 pm

    What a time… Nothing like looking into the face of our own mortality to give you some perspective on life.

    But you’ll be blogging through the menopause and beyond, m’lady. I count on you to read my scathing posts about adult diapers in 50+ years from now. And this is all about me, as you know.

    (loveyoumeanit)

    crazymumma April 4, 2007 at 1:17 pm

    The words of our greatest fear….to not be able to be there.

    shit.

    rest that great big muscle.

    Redneck Mommy April 4, 2007 at 1:26 pm

    Big hearty hugs.

    And squeeze the Wonderbaby for me.

    Hugs from your babe can cure almost anything.

    Speaking from experience, you know.

    xo

    Mama Sarita April 4, 2007 at 1:31 pm

    what a rotten few days you have had. I hope you can get some rest and experience some peace as you process it all.

    Another commenter said what came rushing to me as I read this….I too never really was afraid of my mortality until I handed over my heart to my two children. My heart leaps into my throat at the thought…

    I hope some tea and some lovies from wonderbaby will help.

    sweetsalty kate April 4, 2007 at 1:34 pm

    (sigh) Oh my goodness. I am so glad to hear you’re alright.

    Motherhood takes us to dark places, doesn’t it? The very brightest and the very darkest. It’s made me feel simultaneously like the strongest, most capable person in the world – and the most frightened, most vulnerable person in the world.

    But to the point, you’re okay. Thank goodness. :)

    Kyla April 4, 2007 at 1:35 pm

    So glad things seem to be well.

    But that fear…it is too much, isn’t it? How mother or child could exist without the other? I’ve thought about it too often in the past 8 months or so. It is just too much.

    Janet a.k.a. "Wonder Mom" April 4, 2007 at 1:41 pm

    I send you love…straight from my heart…to yours…

    hugs.

    phogrrl April 4, 2007 at 1:45 pm

    once again in tears while reading. This time just wanted to comment on how fabulous your writing is, and how beautiful your family is. You capture motherhood so well with your words. Thoughts and prayers are with you.

    Lawyer Mama April 4, 2007 at 1:55 pm

    The love and the fear are so overwhelming at times, aren’t they? Hold Wonderbaby close.

    metro mama April 4, 2007 at 1:59 pm

    I spent a night, about six weeks after Cakes was born, thinking I was dying. It was unbelievably saddening. If that happened today, I think it would be ten times worse now that I’ve spent almost two years with her.

    (((big hug)))

    JudesMommy April 4, 2007 at 2:14 pm

    I’m so relieved you’re OK…albeit confused and still in the aftermath of a huge scare. Sending you warm energy. Rest, take good care. We will wait for you to come back to us.

    Mrs. Chicky April 4, 2007 at 2:21 pm

    Very (very very very) glad you’re well. There’s no ointment for a pained heart muscle. Get some rest.

    chichimama April 4, 2007 at 2:22 pm

    Very glad to hear you are physically OK for the moment. Having had a similar incident, if you need some long distance hand holding, email me as I’ve been through the heart wringer and ER trip and follow up visits and “We don’t know what is wrong” nightmare, hysteria and fear. And the fear of leaving my kids was the strongest fear I have ever ever felt in my life.

    Take care, rest up.

    NotSoSage April 4, 2007 at 2:31 pm

    Oh, I’m so glad that you’re better. I came late to your last post and thought I’d wait it out to see what happened.

    And, yes, I’ve faced the genetic counselling and the questions that people pose (outwardly or not) about your motives for having children when you have a genetic condition. And, yes, I would give my life for her but I worry that, in doing so, I would hurt her so much that she might never recover.

    And, yes, we are here for you, in whatever way that happens on this strange frontier.

    MotherBumper April 4, 2007 at 2:32 pm

    :)

    rest up

    and this is from B ((((x))))

    mothergoosemouse April 4, 2007 at 2:34 pm

    Dude. A title like that one is no way to ease my mind when I see it come up on my Bloglines.

    I’m glad you’re okay. The unknownness is still disconcerting, but it seems to be an inescapable part of the complexity of our physical selves.

    kittenpie April 4, 2007 at 2:46 pm

    So glad all is well, honey. So terrifying, isn’t it, to even contemplate leaving your child with that hole in their life?

    kristen April 4, 2007 at 2:55 pm

    My anxiety, for obvious reasons, has been taking over these past few days.

    I’m trying to take one ridiculously scary and crazy thing at a time.

    I’m not sure how I would do with 14 all at once — which seems to be what has been coming at you.

    Rest, friend. REST.

    JayJenny April 4, 2007 at 3:08 pm

    Thank goodness you’re okay. I was touched to read about your committment to begin a family, as my husband and I are dealing with timing and the fears of starting our own. I often wonder about the what-ifs concerned with having a baby and those things that we cannot control. It’s scary, but also comforting to know that everyone has these and that the reward outweighs the fear ten-fold once you have your own WonderBaby. Thanks for sharing and making this decision a little less scary. Wishing you rest…

    Beck April 4, 2007 at 3:14 pm

    Something I did not say the other day when you were so heartrendingly frightened was that I had an infection a year ago that spread to my heart and I nearly died and even with that I am okay now. Bad things can happen. I am very glad and relieved to hear that you are okay, and I hope that you can rest up now and feel better and safe again.

    Dana April 4, 2007 at 3:16 pm

    Please be well! We need your heart, too!

    -hugs from afar-

    Dana

    Julie Pippert April 4, 2007 at 4:13 pm

    Of course. Of course.

    Take care.

    Mel April 4, 2007 at 4:28 pm

    SO glad it appears to have been nothing.
    SO glad.

    Heather April 4, 2007 at 5:03 pm

    Glad to hear all’s well.

    Jennifer April 4, 2007 at 5:21 pm

    Thanks for this update. Glad to hear it was a muscle cramp and not one to the aforementioned heart ailments. Feel better soon!

    slouching mom April 4, 2007 at 5:31 pm

    You’re right about the incredible community here. The WAY I’ve worried about you, thought about you, during these last few days has astonished me: I’ve never even met you! But I somehow I feel I know you well.

    How is that, anyway?

    Rest up. So glad you’re OK.

    kate April 4, 2007 at 5:43 pm

    I’m so sorry. I’ll be thinking of you.

    Fairly Odd Mother April 4, 2007 at 6:21 pm

    Mortality is some scary stuff to think about, esp. with such a sweet little one counting on you to be there. My own mom lost her mom to TB when she was just 5; her mom was 40–the year I will turn this summer.

    Take care of your heart. Take time off and just enjoy Wonderbaby. We’ll be here when you return.

    Rock the Cradle April 4, 2007 at 6:57 pm

    Big hugs to all of you.

    The husband and I have both talked about how with the Impling came a fear of mortality we never had before.

    Hope you can take it one moment at a time.

    FishyGirl April 4, 2007 at 7:31 pm

    Rest and feel better. As someone whose mother died when she was 15, and mom was 37, the fear of leaving my children motherless is sometimes incapacitating, and particularly so since I do have a minor heart condition. Be well and love WonderBaby – hugging my fishies always makes everything better.

    Velma April 4, 2007 at 8:14 pm

    So glad you are better. The scariest thing in the world for me these days is the idea that my babies might grow up without me.

    Lisa b April 4, 2007 at 8:22 pm

    What a terrible scare, especially with the DMD fears hanging over you. I hope all the other tests come back reassuring.
    Wonderbaby needs her mama.
    hugs to you.

    anna April 4, 2007 at 8:34 pm

    Posts like this are the reason I slog through 100+blogs on my trusty Google reader. Tolerating the great big mountain of uncertainty in the center of life is tough indeed. But from the sounds of it, your heart is working perfectly where it counts the most.

    Bon April 4, 2007 at 8:46 pm

    jaysus…what a ride you’ve been on. fragile, precious thing…this life.

    i was moved by what you said about loving any child you might have, no matter how brief or limited his life. i only had Finn for hours, but he brought joy i couldn’t have imagined possible in that situation. just so you know. just in case. should the complicated tests not have told you everything, and should the much anticipated (here, i mean) if not fully decided on #2 be a boy and there be problems…oh my heart will ache for you, but i assure you, it will still be worth it.

    in the meantime, take good care getting back on those fingers.

    Damselfly April 4, 2007 at 8:56 pm

    You get me every time with what you have to say and how you say it. Sometimes a scare like that makes us feel alive, no? Rest up … blessings on you….

    Mom101 April 4, 2007 at 9:09 pm

    Exhaling hugely. Deeply. Profoundly.

    Dani April 4, 2007 at 9:26 pm

    So relieved that everything is okay with you.
    I understand the terror of our own mortality. I can’t imagine leaving our boy. I think it’s intensified by the fact that my husband lost his mother when he was only 6. Unfortunately he knows all too well what it’s like to be without a parent.

    As far as scaring us all with the last post. yeah, you did. But that’s what we’re here for.

    Mad Hatter April 4, 2007 at 10:23 pm

    Take good care of the heart and I’m not talking about the muscle part.

    Amanda April 4, 2007 at 10:28 pm

    Just this: We’ll be here.

    Heidi April 4, 2007 at 10:47 pm

    So glad everything is ok.

    I admire you for doing the genetic testing. I’m not sure I would want to know.

    And Wonderbaby is gorgeous.

    Annie, The Evil Queen April 4, 2007 at 11:49 pm

    I’m glad to hear you are okay and I hope they can figure out what cause your problem to begin with. I can relate to your feelings as I’m currently awaiting some test results and am pretending I’m not concerned about them. Give Wonderbaby an extra squeeze.

    ewe are here April 4, 2007 at 11:53 pm

    What terrifies me most IS the thought of not being there for my boys.

    My boys need me here.

    I’m so glad your health scare was just that, a scare, and that you’re okay. Take care of yourself.

    Lady M April 5, 2007 at 12:49 am

    WonderBaby will help take care of your heart.

    Yesterday, I wrote about valuing each day (in relation to cancer, which has hit many close to me), and just today, I was already harried and worried about nonsense at the office. Deep breath to remember that getting to be with our children is priceless.

    Anonymous April 5, 2007 at 1:33 am

    I missed this when it was all happening (which is probably best as I would have likely had a panic attack myself worrying about you…) So I’m deeply relieved that all is generally OK. Get some much needed REST.
    Pascale

    jchevais April 5, 2007 at 5:52 am

    I’m glad to know that you are fine and are recuperating.

    FYI: I haven’t forgotten. In fact i’ve nearly finished the study (I’m working out kinks) and will start the real deal shortly.

    Take care.

    Ruth Dynamite April 5, 2007 at 8:13 am

    So glad you’re OK.

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