25 Years After My Mom Died

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By SB_FASD

It happens every so often that Mother’s Day in the USA coincides with the anniversary of my own mother’s death – May 12th. That time – I think it’s a quarter century ago now – is a blur to me. The years were traumatic, infused with much pain and suffering. My father and my mother had long-term horrific illnesses that wove throughout my early twenties. I don’t like looking back at those years, though I cherish the love. Life becomes very real when we stand with loved ones at the edge of death. If there’s any good from their early deaths, it’s that I gained some perspective I might not have had for decades.

I am forever grateful my mother was able to drift away on a spring breeze. She took her last breath at home right there in front of my eyes. I was holding her arm. I could feel the moment my heart kept beating when hers stopped. I shared that pulse in her womb and in her death. I have no doubt that it’s my job to carry her heartbeat into the future. Her strength. Her clarity.

I think of my own imperfect motherhood. I think of how we all, even the best mothers out there, are really just getting by without rulebooks, without much more than our love and our faith in brighter days to get us over those hills, out of those valleys. That certainly is true in this house affected by FASD.

My mom came from a big Scottish-American family that lived hard, played hard, loved hard and fell hard. My grandmother had 17 pregnancies – 9 children lived (8 girls, 1 boy). Alcohol and addiction flow through the generations.

I was just lucky, really. I don’t think in my young student and professional days I understood just what fire I was playing with when I was out binge drinking with my buddies.  It took me decades to shake off the habits I had learned about what defines ‘a good time.’ But I did. And I am proud of that.

I wonder what my mom would say knowing now what we know about alcohol, pregnancy and the impact it can have on lives. I wonder what she’d say about my career switch into this whole new issue area.

She and her sisters drank and partied through their pregnancies. Even so, I think she’d get it. She’d recognise those tell-tale behaviours, challenges, outcomes that we now know can arise where and when there are undiagnosed Foetal Alcohol Spectrum Disorders.  In every neighbourhood, every community we all know people who have struggled, spiralled, become addicted, lost jobs, had mental health issues, suicides. It’s heartbreaking and tragic that some of these may be due to FASD that went unrecognised.

One time when my mom was in hospital, I was with her as she rolled her chemo bag to the doctor’s smoking area. Some tired surgeon was there, having a cigarette after a long day. My mom took a long drag, blew out the smoke and then eyed this unsuspecting man directly. “I know what my excuse is,” she said, “but how the hell can you stand there and smoke that with all the education that you have?” I was used to my mother’s frankness, but even for her this was spectacular. I will never forget the truth of that moment. The doctor just locked eyes with her. He threw his cigarette on the ground without a word and went back to his work.

I think she would approach this whole issue of alcohol in pregnancy in the same way.

She’d want us to be straight up. You can’t look into the eyes of someone with FASD and be the same again.

Now that we know, no more excuses. Even if and where it hits close to home.

There is no point sugar-coating the facts:

  • Alcohol in pregnancy risks FASD.
  • FASD is lifelong.
  • No mother wants their child to face the kinds of permanent challenges that can arise when developing brains and bodies get seared by alcohol in the womb.
  • However, if a child has been exposed to alcohol in utero they must get diagnosis and appropriate support to help them grow into their potential.

On this US Mother’s Day, which I believe may be 25 years after my own imperfect but beautiful mother died (I can’t remember exactly), I am contemplating again how complex and yet how simple these issues can be at the same time.

The reasons why people drink during pregnancy, including genetic, social and cultural reasons, are long-standing and can be intergenerational. It’s not easy to break the cycles, to see the problems. Sometimes women need significant scaffolding and supportive programmes to help them – such programmes exist but are not nearly as available as they should be. But for many, they just see this as a ‘personal’ choice, a ‘right’. I know people who still question whether FASD exists.

Many, many of us have undiagnosed FASD in our extended families. Maybe in our own homes. After all, it’s a spectrum that experts believe affects more people than autism. Nobody wants this to be about them or their family or their classroom or their patients. But it is.

Stigma suffocates the discussion, fuels the misdiagnoses.

I am not a perfect mother. I did not have a perfect mother. But like her, I love hard. And I try hard. And I miss her. We all try each in our own way to do the best we can in the absence of a rulebook.

But on this issue the rules are now clear.

  • If you avoid alcohol in pregnancy or when trying to get pregnant, your child will not have FASD.
  • If you are drinking alcohol and having sex, you should use birth control. (You should be using it anyway, my feminist friends, unless you are planning a pregnancy.)

I just keep thinking about that question my mom asked that surgeon smoking a cigarette. “With all your education, what is your excuse?”

You can’t un-know something, though you may put your head in the sand.

We can do more to get the word out. But it’s got to be also an internal acceptance too. This isn’t about those ‘others’. It’s about all of us.

It’s about moving beyond shaming and blaming and accepting that it’s quite possible that we know more people than we think we do who are living with the impact of having been exposed to alcohol in the womb.

The medical guidance in the UK only changed three years ago. It’s not like anyone ever purposefully sets out to endanger a pregnancy. But we have to accept the risks are real. We have to accept that no matter what our income or education level, no matter if we drink pink gin, prosecco or cheap lager all alcohol is at the end of the day a potential poison to a developing embryo or foetus. We have to accept that in our communities thousands upon thousands of people are living with the effects of that exposure, undiagnosed, unsupported and struggling through their own lives. If we opened our eyes to that reality, we could put in place supports that can change their trajectories. It’s the understanding of the condition that can lead to brighter futures.

Unlike that surgeon who was smoking in the face of a woman dying of lung cancer, when a pregnant woman drinks alcohol it’s not just her own health that is at risk. She has to think forward and imagine looking into the eyes of an infant that might be inconsolable, a toddler who is delayed in learning to walk and talk, a student who can’t keep up, a teen who is overwhelmed and unable to cope, an adult struggling to hold a job. She has to understand the power of putting down that glass, to know that it’s always better to stop at whatever point in the pregnancy because the baby’s brain is developing throughout.

Paraphrasing Maya Angelou, when you know better, you do better.

It’s time now for us all to do better. You can’t un-know what you now know.

And that includes every single medical, educational and care professional, including those who resist getting themselves trained up on this issue, those who spread misinformation and deny people the diagnoses, help and support they need because deep down they too play into the stigma.

I’m asking for my mom, “What exactly is your excuse?”

A couple of days ago, there was a game-changer. An announcement from the Department of Health:

Department of Health and Social Care have got confirmation that NICE will be developing a Quality Standard on FASD based on the Scottish SIGN guidelines. NICE, working with key stakeholders will develop a work programme to help them deliver this over the coming months. This is welcome news as a step to help improve diagnostics and the clinical pathway in England on FASD.”

What this means is that the FASD-deniers will no longer will have any excuse. And that my friends, is huge. Change is coming.

2 thoughts on “25 Years After My Mom Died

  1. What a Fantastic read ! Thank You !
    As an Woman in her 50’s , recently diagnosed I so .. enjoyed your perspective on this ! I did not have the loving mother as you did but I I Aspire to be that loving mom and broke the cycle !
    I am determined to do my part in helping with prevention as well as acceptance of mothers that may not have known better .. getting the word out and getting rid of the stigma drives me . Thank you for sharing !
    Flying with Broken Wings is a FB site you might enjoy .. here is my Utube video..

    Like

    1. Thank you SO much for reaching out and for your kind comments. Your video is awesome! Please keep speaking your truth, it’s so important and valued. Also totally agree re Flying With Broken Wings.

      Like

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