Fight or flight – coping with illness as a bereaved family

My personal anxiety is much better these days although I’m still on a minute dose of anti-anxiety drugs just to help me through the first months of having a newborn should it suddenly increase with my hormone surges. It seemed sensible to do this, keeping any risks to baby to a minimum but allowing me the scope to get a bit of extra support if I need it.

Pregnancy and the birth of a new baby are always exciting and a reason to celebrate. A rainbow baby is an absolute blessing, there’s no question about that. The rainbow baby is treasured in a way deeper than another child. Not loved more I should add, but the joy of that child’s life is remembered by the parents and family as it reminds them of joy and hope after the most painful loss, or losses, imaginable.

But the joy is a double-edged sword as post-traumatic anxiety always threatens to spoil the fun!

The very fact I have already lost a much-loved child and much-wanted pregnancies puts me in an anxious state of mind, fearing having to go through that kind of loss again. Not fearing about them breaking a leg, or falling over, but fearing they will simply not be here anymore.

It’s an odd and unsettling feeling. It’s not the same as general parental anxiety. It’s not the same as an overprotective mother who might stop her child from climbing a tree or going out to play for fear they might get hurt, it’s not saying ‘be careful’ for the umpteenth time that day, it’s a deep unnerving knowing that at any time they could be gone. Forever.

We try hard not to overly protect our other children. We let them play out, we encourage some independence, we encourage bravery and trying new experiences even when they feel anxious themselves (and all we want to do is wrap them up, close the curtains to the ‘nasty’ world and stay home). We know we have to do this, to enable them to live as full lives as possible.

When worrying turns into anxiety
Anxiety is always there for us. The anxiety switch is ready to turn on at any moment. We can go from normality to are they/we really OK in an instant. Will this common illness turn into something traumatic? Will they wake up this morning? The anxiety surrounds sudden loss, which is understandable considering Abi’s sudden death from a brain haemorrhage. The anxiety is the fear of life changing in the blink of an eye.

The ‘fight or flight’ reaction, commonly known as something we have inherited from our ancestors to save us from harm, is still very real for the anxious grieving parent. At times of pressure, I found I have conflicting thoughts – one part of me says ‘Ignore it’ or even ‘Run! You’d be better off alone than worrying about this’, another part says ‘Don’t mess about, get them to a doctor’ and ‘Let’s fret about everything bad that can go wrong’. It can be very hard to think clearly.

We’ve had some nasty seasonal illnesses (which added to the worries of my son’s illness earlier in the year). Things I could handle pretty well in the past, but now I have to work overtime just to keep myself from going over the edge with worry, especially knowing with children how hard it is to read the signs sometimes, how one illness can mask another. It’s more exhausting than ever to know what to do for the best. With our NHS system on overload, we are conscious not to clog up busy waiting rooms with things that we can treat at home, yet invariably we’ll find ourselves taking them down, just in case (I try to avoid using Google to diagnose us seeing as every symptom seems to relate to something terminal or life-threatening!).

What are the chances…?
Life has become a game of chance. Abi’s illness was one of those ‘million to one’ scenarios, so it’s hard to say now ‘the changes are slim’ when we’ve been one of those million.

The other night, my son sat in the car and simply said, from seemingly nowhere, with tears in his eyes, “When did I last see Abi alive?” He has been talking about her a lot lately. I said it would have been the day she had her brain haemorrhage.

“Brain haemorrhages are really rare aren’t they, Mum? So why did Abi have to get it?”

I admitted I didn’t know why and that I often think the same. Why her? She was our daughter, their sister! Like us, he misses her. He knows it is very unlikely he’d get it too, he knows it was Abi’s ‘thing’, but being exposed to death at such close range so young makes the fear of death very real for us all. We think about death more often than most. And, after the viruses have passed, the post-illness anxiety lingers much longer.

 

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“I still miss her.”

Our children are most vulnerable to anxiety as their perception of the world changes, we already have their fears to ease, let alone the fear that death may come to them again at any time. Of course it will, because, like it or not, death is the most certain thing in life, but I am sad for them already knowing we will have to face loss again some day.

Faith in God has been vital to our comfort and it’s not to be underestimated. My children are always asking about heaven, Jesus and how it all fits together. Yet we also have to do what Jesus said, live life like a believing child, not a cynical, bitter adult. Be honest about our feelings, when we feel sad in grief, happy, adventurous, scared…

For example, literally minutes after having an emotional but straight forward chat about missing Abi, my son was building a pretend toilet out of his two-year-old brother’s bricks and laughing at his idea. It’s not to say his feelings about Abi were insignificant or made him feel uncomfortable, far from it. He said what was on his mind, it moved him, he processed it and then moved on to the next thing.

I admit that I struggle to be the same. As I watched him play with the bricks for a while my mind was still deep in our conversation. I wanted to hear more. I wanted to help him talk it through… but he’s done that, for now it was enough for him. He didn’t need to wallow or grieve. He didn’t need to be clung tight and watched. He just needed to express his fears and emotions.

He worries about death a lot, which is normal for his age, and I’m more ready than ever to answer his questions. I also admit that I don’t have all the answers, but one thing I do try to tell him is that worrying about death will not change the fact that we will die, and that even though everybody worries a bit about dying, we need to work hard to try to enjoy the days that we have and make the most of our lives rather than allowing the worries to control us. It’s harder than it seems when you’ve seen death like we have.

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The siblings as they were. Abi united them.

As I reach the last few weeks of my pregnancy, when I hope to welcome another daughter into the world, my mind is filled with excitement, fear and worry. Aside from the usual worries that most mothers have about the birth and if baby will be okay, I am thinking about the long-term pressure of life. This will be another person we, essentially, have to keep alive, another person to worry about, another person who relies solely on us to keep her safe and well. At times, it seems such a huge responsibility! A lifetime of worry!

Despite all this, I feel, as a family, we are doing pretty well. We are laughing and living as best we can, and there isn’t much to be done about these anxieties, they are part of our grief now, and I hope that it reduces as time passes. But I really wanted to record the mixed emotions that arise every time the ‘panic button’ is pushed. I’m sure I’m not alone!

Here’s to, hopefully, a healthier spring and summer!

 

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6 thoughts on “Fight or flight – coping with illness as a bereaved family

  1. ‘Laughing and living’ is great to hear. The anxieties will fade as time goes on. That’s the thing about time, it really does heal but mindfulness can help as it keeps the mind on the present instead of the past or the future if only for a brief time at first.
    Sending you love and calm X

  2. As always I can identify with almost all of what you say, except that I haven’t had a rainbow baby.
    For many years I was very nonchalant when my children were ill and behaved as if Calpol cured everything, with the occasional antibiotic thrown in for good measure. Then in 2014 Leah died from a rare side effect caused by the treatment for her very rare condition which was caused by an extremely rare genetic mutation and suddenly everything changed.
    Now I feel as if every one of my children’s aches and pains needs medical attention. My local GP surgery is very good and when I’m really worried the kids get a same day appointment.
    However I’m also aware that the emotional process of grief can manifest itself in physical ways too. Also, as our children mature and get older, they will continue to process their grief and loss and come to understand it in new ways according to their age and stage of development. This presents ongoing challenges to us as parents as you have described so eloquently in this blog post – children do grieve differently (not less) than adults.
    For me, the hardest part is seeing pain etched into my child’s face and feeling powerless to make it better – the cuts and scrapes of early childhood are so much easier remedied.
    Looking forward to hearing good news of the safe arrival of your new little one, thank you for your openness and transparency at this time. ❤️

    1. Thank you so much Victoria. Your reply was spot on with how it is to worry about something – anything – underlying. It takes a lot of mental strength to keep perspective and also to know when to act. I feel we all carry our grief physically and my husband’s ongoing back problem (which has proven to be nothing serious – because of course we had to get it checked) is his grief, as he has not addressed his grief in as open a way as I have. It’s very hard to see our loved ones in pain, my toddler’s recent illness had me almost in tears on the way to hospital as I felt helpless to his cries. I’m looking forward though to the joy that a new baby brings, and just need to keep control of my paranoia! Much love to you x

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