Share your fear

Lorelle on WordPress set a blogging exercise yesterday: Share your fear.

It later dawned on me that I had written about my fear a few years ago. I’ve updated the article and sharing it here with you.

When my son Ben was a very poorly child before he turned 1 year old, I took him to his doctors many times. Various doctors told me he had a cold, a virus infection, a winter bug. Nothing serious.

His GPs must have thought I was an irritating new mother. I speak English with an accent, and I couldn’t form sentences properly when I’m nervous. My English wasn’t as fluent 10 years ago. I told the doctor – “Look, he is losing weight; he stops crawling; he is losing interest. There must be something very wrong about this baby.”

One day Ben’s left eye was suddenly swollen. I took him to his GP again. This old, experienced doctor cast a glance, and told me confidently that the bulging eye was an ‘oriental eye feature’.

Two weeks after this ‘oriental eye feature’ statement, Ben was rushed into a children cancer ward called Piam Brown ward in Southampton, and they found a tumour sitting just behind his eye pressing on his nerve.

I lived with years of fear of Ben losing his sight. We were warned his vision would be ‘compromised’.

One day, I asked the consultant blatantly, “Tell me in plain English please. Does ‘compromised’ mean, blind?” She paused and explained in medical terms, ‘Yes, he COULD be…’. She found it hard to utter the word ‘blind’. She preferred a more evasive and elegant term, ‘compromised’.

Luckily Ben escaped any significant impairment, thanks to a year of chemotherapy treatment.

When Ben was receiving treatment, a lot of people were also adding their comments on my list of fear.

A concerned friend said, “It’s very bad to pump so much toxin into a baby. It’s not good for his long-term health.” Another worried relative asked, “Would chemotherapy affect his fertility?” We’re talking about a 13 month-old baby here.

Years later, Ben developed a habit of squint, and he would perform cross eyes to entertain people. I took him to his ophthalmologist with worry. I asked for Ben’s ‘cross eyes’ corrected.

The ophthalmologist joked with Ben. “Wow, cross eyes! That’s a gift! Not everybody can do that!”

The specialist later reassured me that there was nothing wrong with Ben’s eyes. Ben was merely exploring his body. Performing cross-eyes was the kind of thing that some kids do.

He was indeed right. Ben was fed up with playing cross-eyes after a while. From then on, I see Ben as a gifted child.

You can find more Blog Exercises on . This is a year-long challenge to help you flex your blogging muscles.

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32 thoughts on “Share your fear

  1. Lorelle VanFossen

    The fear of harm to a child is one of the deepest fears indeed. I honestly don’t know how parents do it, day after day, minute after minute, not knowing what will happen to their child and learning to live with that fear as well as the potential loss. That’s what you are really doing. You are preparing yourself for loss. I suppose this is healthy as it is nature’s way of preparing you to release your child into the wild at the various stages of his or her life, babysitters, school, work, marriage, etc.

    The last medical professional you mention was brilliant. I hope you sued or punished the first bigot. That’s unacceptable treatment. Isn’t it a relief when you find out there is a new normal and it is normal for your child! LOL!

    The fear of loss is one that can be crippling. It’s beautiful that you have shared this, and I’d like to know more about how you cope with that fear day in and day out. I know you are stronger because of it.

    That’s the true purpose of my blog exercise on fear. It isn’t about naming the fear specifically. It is about digging deeper to find the source of strength in facing that fear. How about that part of the story? You are such a brilliant storyteller and writer, I’d love the rest of the story. 😀

    Reply
    1. Janet Williams Post author

      Dear Lorelle,

      I’m sure you understand the sense of loss well, vividly expressed in your Hurricane Katrina post. Hurricane Katrina hit the Gulf Coast of the United States on August 29, 2005 and I still remembered vividly the horrific images I saw on the television. Your website was actually born during a hurricane. It reminds me of a Chinese saying, a rebirth is like a phoenix rising from the ashes.

      Everyone has fear and suffering. I like to think that we gain the strength somehow to rise above adversities. Writing about fear is not easy, however, writing is an outlet which allows a deeper examination of our thoughts. Over the years, I’ve met people who have been crushed and paralysed by unfortunate experiences in their lives. They become fearful of the future; they’ve lost strength in life. They’ve imprisoned themselves. That’s terribly sad. I wish to rise above challenges in my life.

      Thank you for your constant stimulation in your blog exercises and your honesty in your blog.

      Reply
  2. Helen Williams

    Hi Janet, that’s a really moving post. Thank you for sharing it. One of my big fears is similar – as you know, Adam was born with a virus that causes severe disabilities or death in 80% of babies. Thankfully he was one if the 20% and was born asymptamatic.

    He had monthly brain scans for the first year of his life and at each scan I had the fear that they would find something. Now he is two, perfectly healthy and developing beautifully, the only fear I have to deal with is the possibility that he may lose his hearing. If he can get to five with no hearing loss, we’re all clear.

    But having dealt with the constant fear during my pregnancy and the fear at each of those hospital check-ups, I find that I don’t worry too much about the hearing. If he does lose his hearing, then that is so much better than all the awful things that could have happened.

    I agree completely with Lorelle – your fear for your child is constant and, at times crippling. Fraser was born perfectly healthy but I still have just as much fear about him…will he get sick, will he hurt himself, will he have friends, will he be happy…? But overcoming that fear to allow him to climb to the top of the biggest climbing frame, to go off to Kindergarten, to make his own choices, is what actually makes him happy.

    I remember when Ben was sick. I don’t know how you and Hugh coped. But you were so strong. That’s amazing. And you now have a wonderful teenage son who is truly gifted.

    Xx

    Reply
    1. Janet Williams Post author

      Dear Helen,

      Thank you for your lovely message and sharing your own fear on this post. I’m sorry it has taken me a while to get back to you. I had thought of writing a longer reply, instead of a brief ‘thank you’ note, so causing the delay.

      I think in our lives, there’s always a ‘before and after’ moment, some defining moment — the first kiss, graduation, wedding, childbirth……The experience of having the possibility of losing a child is terrible, and you also had the same painful experience, and I think living with uncertainties is the worst scenario in life.

      I remembered the worst moment was not knowing what actually happened to this fragile child — many trips to the local GPs were a waste of time and they gave us wrong information. They belittled me as a new parent. The enlightenment came when Ben was in the hand of one of the best oncologists in the country. Once the diagnosis was revealed to us that Ben suffered from Langerhans Cells Histiocytosis and his multiple organs were attacked, and the oncologist had a solid treatment plan, including steroid and chemotherapy treatment, everything became more manageable. Life became more ‘normal’ again.

      When we were living in the hospital for those months, we were in a completely different community — very poorly small children with their families. Some small children didn’t make it. Spending most of our time in the hospital was a very unusual existence and the routine of our life was very different from other normal families with healthy kids.

      I’m not sure the experience made us ‘stronger’, but it certainly has made me think about life a bit deeper. I got a bit more ‘philosophical’ or even ‘morbid’ (my husband thinks my thinking is on the morbid side) about life sometimes.

      I became more aware of suffering on different levels. Some friends tried to encourage me with the famous saying from Mencius: “When Heaven is going to place a huge responsibility on a man, it would first frustrate his spirit and will, crush his muscles and bones, starve him, trouble his mind……” But I would reply: “Thank you very much. I don’t want to be a great man.” I also recalled the story of Job in the Bible.

      Helen, thank you for sharing your own stories here, and your constant encouragement is always appreciated. I’m so pleased that both Fraser and Adam have improved so much, and they’re such a gift. Perhaps one day you would create your own blog too? You’re a talented writer and I look forward to reading more of your stories.

      Reply
  3. sharechair

    Oh my …. what a terrifying time that had to be for you all. I can’t imagine coping with a significant illness in a child. Nothing worse, I think.
    p.s…. thought about you recently as I sat on a train from London to Southampton and we stopped in Winchester. I thought, “I know someone who lives here!”

    Reply
    1. Janet Williams Post author

      Next time, let me know you’re coming this way. It would be very nice to meet you.

      I was in Winchester today again. Isn’t it a beautiful place?

      Ben is fine and well. It was a decade ago, but it still feels like it’s just happened. Hopefully he’ll be fully discharged soon after 10 years’ follow-up.

      Thank you very much.

      Reply
  4. ShimonZ

    I too find it very difficult to speak with people who use euphemisms all the time. In our culture this is not prevalent, though there are some people who try and copy the west.

    Reply
    1. Janet Williams Post author

      The use of euphemism is very common in this country. It has taken me many years to learn to understand what people really mean. Sometimes I really need to think hard to understand if a message means positive or negative. For example, if a teacher writes, “He makes great effort.” Is this positive or negative? A Chinese teacher would have said, “He didn’t work hard enough. He is a lazy child and he has failed the test.”

      The Economist had an interesting article Euphemistically Speaking . You may find the examples in the article interesting.

      Reply
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  16. fisefton

    I’m so glad your son came through his treatment and is now heading towards his 10 year check. We don’t have a diagnosis for my son and at the age of 18 I’m definitely not chasing one now. He is a SWAN (Syndrome Without a Name) and that is OK.

    We never stop worrying about our children and I think for a lot of us our greatest fear is that something will happen to them that we can’t do anything about.

    Reply
    1. Janet Williams Post author

      Very well said. You wrote so beautifully about SWAN in your post and there are so much more you can share with us, and teach us about how you find strength, and joy, and how Disney trips are not just normal holiday trips. They’re expressions of your love to each other.

      Reply
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