As a parent we will all at some time have to deal with the coughs, colds, vomiting bugs and the many cuts and bruises that our children will entail as they grow up. We will have to deal with our crying child as they get their first vaccinations – retracting with a pain in our own tummies as we hate to see them in pain.
Even the smallest illness will stress a parent out to no end – never mind the sleepless nights, and GP visits – it is just horrible when our children are unwell.
But when a child is diagnosed with a chronic or rare condition, this is when the “normal” role of a parent changes significantly.
I will never forget the first day I had to tube feed my five week old daughter. Drawing back fluid from the tube to ensure it was not in her lungs, but in her tummy. The fear that I would get it wrong, never left me. Terrified of drowning her with her own feed.
Recalling the day I asked the consultant would she survive her surgery – and him telling us that she may not and we would have to prepare for this. Having her baptised in the hospital.
Waiting on the news that she survived her heart surgery. Seeing her in ICU. Fiery by nature at her young age she needed soft baby “handcuffs” to stop her pulling out her breathing tubes.
So helpless, so vulnerable – both of us.
Taking her home, I recall the panic of giving her medications – one of which had to be given exactly twelve hours a part to keep her heart rhythms in order. Changing her bandages after heart surgery. So afraid to hurt her frail little body, afraid she would get an infection.
Having to tell family and friends they couldn’t call to see her as she was too high risk of catching bugs. Some ignoring me, and her ending up with bronchilitis – leading to a two and a half hour ambulance journey to Crumlin from Mayo, which normally should have taken four hours.
Seeing her travel with oxygen levels dropping rapidly and being suctioned to clear her little lungs.
Being sent home again for me to care for her.
Weighing her daily to make sure she was putting on weight, but not so much weight that fluid could be accumulating in her lungs.
Listening for the alarm on her apnoea monitor when she was sleeping, just in case she stopped breathing.
Feeling isolated, scared and alone. Feeling incapable. Wondering if I was strong enough to do this – to care for a sick child and get her to full health again. She went through a tough first few years of her life – asthma and hypermobility following soon after.
But with her fighting spirit and my will to get her to full health, we did it, with the help of many health professionals, friends and family.
Then the swine flu struck our home in 2009.
Myself and our three daughters went down like a ton of bricks. I have never felt as ill in my whole life, eventually leading to me ending up in hospital, but I had to keep going to make sure they were cared for. I allowed no-one near our home in those two weeks for fear it would spread further to others. We informed the school, they closed it down on the advice from the Dept. of Health.
Following this flu, it triggered complicated symptoms and chronic conditions in my other two daughters.
Leading to me, three years later, having to inject a chemotherapy drug into my twelve year old’s tummy to treat juvenile arthritis.
The fear of how she might react to this toxic drug terrified me, as did the fear of causing her pain. It is one thing when a doctor sticks a needle into your child’s arm – this is brought to a completely different level when you have to do this to your child yourself.
And then came the day when I got a call about our eldest daughter, telling me to go straight to Crumlin as they felt she had tumors in her adrenal glands.
I stood, phone in hand, in my local hairdressers, in shock, and just burst into tears. Overwhelmed, scared, angry.
And yet, through all of this, I did it. I did not know my own capabilities or my own strengths. I had to take everything day by day.
But, I was lonely.
I knew I didn’t fit in with other parents.
I was scared that my children, each with autoimmune disorders, could catch bugs which could be detrimental to them. I was constantly on edge.
Other parents just didn’t understand this.
My life was a world from theirs – constantly in and out of hospitals, and sleepless nights. I felt I couldn’t hold normal conversations with people as I was consumed by health issues. I didn’t go out or socialise. I didn’t work. What could I talk about to people that they would be interested in?
I realised that being a parent of a healthy child, and a parent of a child with a chronic condition were two very different things – we suddenly are carers – often performing medical tasks that health professionals are trained to do.
I had become a “carent”. A parent and a carer combined.
It took me a long time to admit this to myself, as I wanted to be “normal”. I wanted to scream to the world that I was like any other mom or dad. But I also needed to realise that our lives were different. And that the best way for me to get through it was by talking to others in the same situation.
I learned that I was not alone when it came to the constant worry, especially when my gut instinct kicked in.
That I was not alone when it came to feeling like a “neurotic” parent when trying to advocate for a child who could not speak.
That I was not alone when it came to feeling liking a failure when my children caught bugs, again and again.
That I was not alone in hearing parents of healthy children tell us that our kids “look great” when their bodies were so sick on the inside.
That I was not alone hearing family members tell us that if we” changed their diet” they could be cured.
That I was not alone when people said it could be “psychological”.
That I was not alone when it impacted on all our children when one got sick.
That I was not alone when it impacted on my relationship with my husband.
That I was not alone when it impacted on our finances.
I learned that it was not just me.
All “Carents” go through very similar experiences, at different times in their child’s life.
I simply learned that life happens. And it’s how we deal with it that matters. With the support from others.
Reach out to your spouse or partner – talk to them – often they are simply coping in a different way. If you are a single parent reach out to your friends, siblings, family – they too cope in different ways. Reach within yourself and recognise that you have the strength to do it. Take it day by day.
For all the parents and guardians out there who are caring for sick children, I want you to know that it is not only okay to be different, but it is imperative that we relish in this differentiation.
Our children will grow up already knowing they are different to other kids, and the best way for them to strive and not feel isolated is through learning by example, from us, their parents.
Reach out to others who have walked similar journeys – ignore the ignorant comments made by others.
Realise that they have not walked in your shoes – thankfully – nobody wants a sick child – ever.
But when it does happen, realise that you as a parent, as a guardian or as a simple human being, can do this.
And it doesn’t have to be alone.