Do you ever pause to think about the emotional toll that comes as a mum who frequently takes their child to appointments?
Caleb has had so many doctor visits recently- blood tests, in-hospital oral food challenges, specialist appointments, skin prick tests, his 4yr old vaccinations, and then today an admission to hospital for a gastroscopy.
There are times I question whether this is all necessary or whether I have some crazed Munchausen-by-proxy thing going on.
It feels like too much for a little man to take.
Hearing his cries this morning, his screaming for ‘mummy’, the look of absolute disbelief that I wasn’t fighting everyone off and rescuing him from this just cut me right through.
Of course, I prepared him for everything- he knew he was going to wake up this am and not be able to have breakfast. He knew we were going to the hospital and he was going to have some medicine to make him sleep so he could have an operation. He knew that operation was to look in his tummy to see if we could work out why it was hurting these days. He had a brand new cuddly toy- ‘Spotty the leopard’ who came along as Caleb’s support buddy and was with him the whole time.
But that is all so abstract for such a wee man.
The reality for him was quite different.
And even though he is now back home riding his bike in the backyard, I am so sad.
I am so sad that when I tell him we’re going to the doctor, he tells me ‘I hate doctors’. When I say we have an appointment, he asks if needles are involved. I hate that it feels like I’m taking his agency and voice away when yet again, I hold him and tell it’s all ok while someone does something to him that he really doesn’t want them to.
I am so aware that compared to other families, other children, we have it so lucky. That we are blessed.
I know that we have excellent doctors, I trust them and the advice that they give us and I agree that everything we have done has been necessary. I just really wish it wasn’t.
The literature shows that we are growing and developing resilience, empathy, (so much bloody empathy!), assertiveness- all really great things.
But on days like today, I don’t feel so strong. I just want to hunker down under a blanket with Caleb and hold him tight.
It’s interesting that when I did a literature search, I couldn’t really find anything talking about this acute stress feeling and how to lessen it. Similarly, google gave me lots of articles about how to help your child to prepare for procedures etc, but not anything about parents.
I don’t think it’s just me that struggles with this.
As a doctor, I have put drips in babies, taken blood from toddlers, even done lumbar punctures in kids suspected of having meningitis.
I have seen some parents not be able to stay in the room because they are so upset about the idea of their child experiencing pain.
Others stay, hold their child, sing, tell stories, cloak that child with the force of their love, almost willing the pain onto themselves rather than their child.
I’ve not seen a parent walk away unaffected.
I’m not trying to catastrophise here and compare skin prick tests with a lumbar puncture or debate hierarchy of medical procedures and who did what better and who has it worse/harder.
But I do wonder if this is yet another piece of the puzzle that makes up life as a parent to a child with a chronic medical condition, that chips away at our mental wellbeing and causes that ‘acute on chronic’ stress.
I think this is in part what we ‘train’ for.
Yes, the mindfulness, the meditation, the exercise, eating well, prioritising sleep, strength-based work all helps the day to day stress of being an allergy parent, and balances that hyper-arousal we often feel from the constant need to be vigilant.
But learning those tools and practicing them day to day means they are there for us to reach for in situations like this when it feels as though we might otherwise go under.
The meditation practice to help us find the breath and stay centred. Mindfulness to help slow those anxious thoughts and keep coming back to what is needed of us now in THIS moment. The habit of self-compassion, and deep self-care that allows things to tick over quietly in the background without demanding too much of us in the moments we are struggling.
Even just writing this out has helped me- it’s slowed me down, given perspective, taken a little of the sting out of the day. And I guess that is what self-compassion is really isn’t it. Being aware and mindful of how we are feeling in a given moment, recognising it as part of the human condition and then giving ourselves what we need in a kind/loving manner.
So if you are finding the journey of being an allergy parent hard, are in the midst of a particularly difficult time, prioritise finding, learning and using the tools that can bring you back to yourself and give you the strength to keep going.