Following behind with a defibrillator


The auburn curls.

Everyone believes their spouse to be exceptional; as a lover, perhaps, or a parent. Or a bore.

My husband was exceptional in many ways, right down to the exceptional nature of the genetic affliction which eventually saw Him crashing out of life in an exceptional manner one unexceptional Saturday in February.

Genetic science has not evolved enough yet to understand why Mark’s aortic dissection happened in the first place. They’re saving His remaining DNA for a point in the future when somebody in a lab coat and big glasses is able to work it out. (The geneticist did explain it all to me, but my brain reacted as it always does when confronted with science – implement the shut-off valve and begin thinking about wine.)

The fear now is whether my daughter may have inherited whatever rogue element was to blame for her daddy’s death.

Most of the time, I am able keep my fears in check. I watch her running full pelt down the road and manage to stop myself from following behind with a defibrillator, ‘just in case’.

Yesterday though I had a moment of tear-filled panic. I was brushing her hair and noticed a couple of depigmented strands in amongst the auburn curls. Three or four white hairs, like lengths of cotton. I admit that I am apt to overact, but hear me out on this.

Mark too suffered from hair depigmentation – it ran in a line, starting in the hair on His head, down through an eyebrow, the wiry hairs of one nostril, on through His beard and into His chest hair. Use your imagination for the rest.

After His aortic dissection, the geneticist suggested this depigmentation might be significant in why it happened. A tenuous connection to the Neural Crest Mosaic, which links the cells responsible for the development of pigmentation and the aorta in a growing foetus. Or something equally baffling to a simpleton like me. It sounded convincing at the time though.

So yesterday, I found myself plucking the offending strands from my daughter’s head, examining them in the sunlight, placing them against my black jeans, mentally preparing a frenzied email to Mark’s geneticist.

My daughter is exceptional – to me, at least – but I hope to Christ this is one area she remains run-of-the-mill.

20 thoughts on “Following behind with a defibrillator

  1. Hi Hun, get it checked, I also have been to see a specialist regarding berry aneurysm’s as this is what Steve died from. They can “cluster” in families, but I was assured that it is VERY rare in children and develops in adulthood, he knew of only one 6 year old with it !!!! So I’m hoping that she will be fine as a child and when she is 18 I’ll decide what the next step is….. So scary we lose one person to something random which might or might not be an inherited trait. xxxx

      • Sending a big sister hug, CJ xxxx
        Try not to fret over that which you truly haven’t any control over. Look at me, yeah! Telling you. I have the same problem. But we really do not have as much control as we feel we do. We cannot stifle our lives in worry and burdensome angst. That cardio doc failed to also postulate that what your hubby had may have been a genetic issue, BUT likely more often one that affects men. That is very often the way those hereditary things go.

  2. Can totally understand your reaction. Get it checked out and hopefully it’ll be nothing and you’ll then have peace of mind. Love & hugs xxx

    • Thanks lovely. I’ve emailed the specialist today and am hovering over my inbox waiting for his reply. I’m probably (hopefully) overreacting, but you know how it is…thanks for your lovely words though. They are, as always, very much appreciated, xxx

      Sent from my iPad


  3. Oh shit Lucie :,-( I dont think there’s much point telling you not to worry. Since my husband’s cancer I’m a wreck over every little bump that he or the kids find, so I can totally understand where your head must be. I hope it’s just some strange quirk with absolutely no connection what so ever. Lots of love to you! And I shall becsending stern words to the universe – as if you need any more piled on your shoulders! xx

    • Thanks so much. From what you’re saying, it must be pretty normal after what we’ve been through to scrutinise every last thing. It’s true that I wouldn’t even have noticed it had I not been picking over her like a chimp with its baby! Fingers crossed that it is, as you say, a little quirk. Or her hair turning blonde…or something equally innocuous…bah! Sending love. X

      Sent from my iPad


  4. My mother worried for a long time that I might have inherited whatever ‘fault’ my father died from. However, as I sit here nearly 20 years older than the age he died at it clearly didn’t happen. All his brothers and sisters (he was one of seven!) lived to ripe old ages, so in his case it was just random.

    Since medical science has advanced a lot since then I agree with everyone else that you should be able to get it checked out definitively now. Also that anything like this would’nt manifest in a child still growing. I’m sure everything will be fine.

  5. dear lucie,

    how could you possibly not be worried??!! and if you weren’t now, most likely at some point you would be, right? sudden death does a number on us, and this is your child. so don’t beat yourself up – it’s good you made the connection with the unpigmented hair – and now you can get some answers. hope by this time the NHS guy will have called you back. keeping all digits crossed all will be well.

    much love and light,

    Karen xoxo

    • Worry is part and parcel of this damn journey we find ourselves on.
      My hubby and I never had time to have children but I would be suitably worried about then if we had. Especially as just 4mnths after N died his father died of a different strain of the same awful disease! N’s siblings are worried and had themselves checked despite being told there is no genetic or hereditary link between the two leukaemia strains!

      Get your daughter checked even if all it does is ease your mind “for now”

      Hugs x

      • Hi Donna, I guess it must be the same for anyone in a family which is afflicted by disease. The fear must always be there, no matter how much reassurance the medical profession are able to give. Still awaiting reply, but feeling a bit calmer now. Even I am unable to stay in a state of high anxiety for an indefinite amount of time! Love…and thanks.

  6. Hey Cuz, I read your blog often, mostly late at night with a glass of wine in hand and ready access to a box of tissues. The distance doesn’t seem to help, even over here in Australia, your words make it hard to breath at times. This post stopped my breathing altogether…. Rach x

  7. How can I access the blog Wife after Death. I recently lost my husband and a friend advised me to read this blog as it helped her. Thank you.

    • Hi there Janice, you can start by scrolling right down to the first entry last year and reading chronologically, or you can just read as stand alone entries – so glad that someone thought it might help, hope you are doing OK. XX

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