I know I am generally a bit of a lazy blogger and we have been busy with enjoying life with no surgeries planned, however, when I realised that this week is the Mental Health Awareness Week I knew I had to set sometime aside and write a piece on this very important topic.

The aim of the Mental Health Awareness Week – like it says on the tin – is to raise awareness of mental health conditions and trying to get people deem mental health conditions as they really are – health conditions. What I want to write about is the effect of living with a chronically ill or disabled child on parental mental health.

When Freya was first diagnosed I read from somewhere that the stress levels experienced by parents who find out that their child has a life limiting or threatening condition is similar to the stress levels of those living through a major natural disaster. The question that I rose in my mind was how can we live our lives in a meaningful – or even just tolerable – way if and when our personal natural disaster could carry on for months, even years? How could we turn the constant turmoil we lived in into “the new normal” and how can we set sign posts for ourselves to get to safety when the storm intensifies?

Are you thriving or surviving?

This is the theme for this year’s  mental health awareness week and when I saw I admit it hit home. Having special needs child is hard – both mentally and physically. You go through a myriad of intense emotions. Fears and anxieties become part of your day-to-day life.  You have very little time for self care or sometimes even sleep. There are no guaranteed Hollywood happy endings and hard work does not automatically mean success – real life is far gloomier, sadder, dirtier. And as a consequence as parents we often feel powerless, tired and even inadequate.

What it has taught me is that whoever said “whatever doesn’t kill you makes you stronger” was, to be honest, a bit of a numpty. There’s loads of stuff that doesn’t kill you and actually makes you weaker.  Few things spring to mind – like heart attacks. Or serious car accidents. Or the experience of having a seriously ill child. Sometimes the experiences life throws at you break you irreversibly and it is not a surprise that, for example, Post Traumatic Stress Disorder is a widely diagnosed condition amongst parents like us.  Few of us can, for example, witness having our children in a resuscitation situation and not feel the effects on our mental wellbeing. Whereas the periods when our children are the most acutely and dangerously unwell often pass in feeling of being in the eye of the storm, the full horror of the situations we faced often follow us around for a long time afterwards. Smells, noises, even symptoms our children exhibit act as triggers and bring back the feeling of hopeless panic. In our hearts we mourn the loss of life we expected to lead and the opportunities stolen from us and our children.

The reason I wanted to write this post was that in the last two years we, as a family, have developed our own coping mechanisms which I thought I ought to share with you in the hope that someone finds them useful.

Plan, plan and plan some more (and be prepared for your plans to regularly fail)

Planning is a key to minimising the stress of living  a medically complex kid. There are regular prescriptions to be filled, various disposable parts to medical equipment we need to arrange supplies for and a lot of professionals (and I use this term loosely ha ha) involved in Freya’s care who need to be regularly chased and pushed for progress.

There are plans how to deal with the “what ifs” of  day-to-day care – little vials of saline scattered around the flat in case Freya tracheostomy tube gets blocked with a particularly big piece of sticky snot and little syringes with taps attached for us to perform emergency tracheostomy changes in an instant if need be. There’s always a back-up suction machine on charge. And a back-up for the back-up. And for a third world war / Armageddon scenario there’s the back-up of back-up’s back-up which does not even require electricity but can be operated with a pedal.

We have boards up with important dates and important numbers. We have folders of information carefully arranged to pass onto hospital staff when we get admitted to give them a specially tailored emergency plan with a to-do list. At first sign of sniffles I start packing up hospital bag (all you might need medical…. and all you might need toddler).

And the effort we have put in all this organisation has paid off.  We have a system that generally works ok. And by creating a routine and various contingency plans we have managed to alleviate  the amount of stress and anxiety we were feeling before bringing a kiddo as complex as Freya home.

Of course, sometimes, even all the best planning fails and we just need to adapt. And mostly, that is ok too. If I need to draw a positive from this it does build confidence to manage through stressful, unforeseen events and it makes us better prepared for the next curveball. It does not make them easy, it definately does not make them fun, but it dealing with emergencies can get easier if you have had a trial run (or several).

Find your thing

I’ve written a lot about how all consuming living with a chronically ill child is. When your baby has a rough start to life and you spend days, weeks – even months- by their bedside it becomes difficult to separate yourself from your child and give yourself a break. When you get home, depending on your local authority and care team involved it can also be practically difficult to have anytime off due to lack of proper support and stupid, non-sensical rules they impose on families (like not being allowed to leave your child alone at home with a fully qualified paediatric nurse).

When the day-to-day life at home is demanding being able to momentarily detach yourself from your role as a parent caregiver not only gives you a much needed opportunity to recharge batteries, but can also stop you dwelling in darker, nastier emotions. The people I have seen dealing best with living with long term sick kids are those who have their own “thing”, something that they can channel their feelings into, something that provides them with kind of a mental respite. For me, it’s cooking (we eat exceptionally well at home), exercising (particularly yoga and even more particularly yin yoga that I practise several times a week), writing and drinking wine with friends (somethings never change).

Many draw strength from religion, others immerse themselves in their hobbies or campaigning. And whatever your “thing” is cherish it, cultivate it. If you do not have one, look for it. It does not need to be your great passion – just something that you enjoy and that gives you a break from the hard work at home. Try colouring, watching a funny film or getting some exercise (those endorphins do wonders to a stagnant bad mood). Whereas I sometimes lack the concentration to read as much I used to I have been enjoying audio book on audible. Relaxation and meditation exercises can do wonders for those living a highly stressed life.

Recognise your own limitations and get help when you need it

No one should have to bear the stress of serious illness or a disability of a loved one alone. Living with the fear of losing your nearest and dearest is a heavy burden to bear. I have found that Freya’s illness has gravitated me towards those who have themselves faced challenges and loss in their lives and made these friendships extra special. We have made some life long friends in hospital wards and parents’ rooms. There are people out there we’ve only met online, but who help and support us through our new normal. Make full use of your family, friends and peers – the ones who walk your journey with you are worth their weight in gold.

Recognise that you might need help at home and educate yourself with what kind of help you and your family are entitled to.  Unfortunately here in the UK services for disabled children are a postcode lottery – underlying legislation is applied very differently by different local authorities and often families are outright failed.  But getting in the right services is worth the fight and getting the right help to care for your disabled child can be the key ingredient in helping your family to thrive, rather than merely survive. There are also many charities (particularly children’s hospices) that provide families with seriously ill children with various services – it is worth to investigate what is available in your area.

Finally, seeking help from a mental health professional can help you to find coping mechanisms to deal with difficult emotions. If you were to hurt your back and were not able to lift your child you would seek medical attention. In same way if you are struggling with depression, anxiety or find coping with your life difficult consider seeking professional help.

Wishing you all good mental health!

P.S. This is a photo of Freya at our local play and stay group. As we are out of the snot season and not waiting for a surgery date we are exploring our surroundings a bit more and the little lady is loving it!

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