When people say “I don’t know how you do it”

It’s a phrase that parents of disabled children hear frequently, along with “I think you’re amazing”, “What a wonderful family you are”, and words to that effect.

Despite being a regular recipient of such compliments, I still find I am at a loss to know how to react or what to say back.

I politely respond, “Thank you, but no I’m really not!”, when really I want to say “You’d do exactly the same if you were me”. I find myself wanting to grill them on what they think I am doing that warrants such kudos.

Fundamentally, what am I doing that is so amazing, other than bringing up a child that I love? I am doing everything in my ability to ensure he is safe, well, and cared for, which is the same as what every other parent I know is doing too, right?

I guess the difference is that I am having to put a whole heap of extra work into this journey, and the path is fraught with obstacles

Perhaps they see the exhaustion on my face, or witness me repeatedly declining invitations to social occasions. It is nice to hear compliments from people that recognise and observe the struggles that I go through, but it frustrates and saddens me that maybe they are drawn to the obstacles I face and not the joy of the journey.

And so here I am asking myself why I find it so difficult and awkward to be complimented on my parenting. I think this is partly down to the unrelenting, perpetual guilt that I experience, that makes me feel undeserving of any parenting plaudits.

For me, the focus remains on all the things that I haven’t done as a primary carer; all the things that I should be doing more of; all the things that I feel I have failed at.

It’s the time I spend alone with my other child because he needs me to show him I have the same amount of love for him too. It’s the therapies or extra care that he misses out on because I’ve run out of time or energy. It’s leaving him on his iPad for longer than I should so that I can get tasks and chores done.

It’s a daily battle with feelings of ‘I-could-do-better-for-him’, and ‘what-if-I’d-done-this-differently’.

When someone praises me on how magnificent I am for what I am doing for my son, this also seems to unhelpfully focus my mind on the differences he has and the reality of the situation. It serves as a reminder that I have a seriously different life to other people, and it reminds me of the gravity of my situation and the severity of my child’s condition.

I previously felt purposeful in my professional life, but I relinquished my career not long after my son was born. I now need to feel I make a difference and serve a purpose elsewhere, and so by focusing on making a change and having a positive impact gives me this life narrative.

For me, I have ended up in the spotlight, advocating for families like mine, representing parents who cannot represent themselves, and crafting new services to counter the existing under-provision. This is not for everyone, and I do not seek praise for this; it is a personal and somewhat selfish act that helps me unravel my own demons.

I am truly grateful for the accolades that are bestowed upon me, but please know, I am just another parent doing another difficult job, and yes, you would do exactly the same, and like me, you would do it through unconditional devotion and love.