Additional Needs

Wrestling with Mum Guilt

Posted by Stephanie Swann on 10th September 2020 Additional Needs, Advice & Support, Disabilities

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Every mum I know has at some point experienced Mum guilt. Whether you’re the type that is plagued with it daily or whether it creeps in fleetingly from time to time. We have all experienced it, and can probably all agree that it absolutely sucks and is an unwelcome visitor in our already busy Mum minds. Get Frank Skinner on the phone and stick that in room 101. (Is that even still on?!).

It seems almost as though this mum guilt somehow just suddenly appears during pregnancy, though I couldn’t tell you when and I certainly don’t remember reading about that on my bounty app!

Since having Joseph I have met quite a few other SEN Mums and I think it’s fair to say that we naturally feel the mum guilt somewhat more than most. Our kids come with a whole bucket load of extra things to do and worry about, and unless you’re fortunate enough to have your own PA to take on some of the load for you (a girl can dream) then chances are, as one single human being, you cannot do it all at once, flat out 24-7. This in turn leads to those berating thoughts and “should haves” or “shouldn’t haves” that all too often leave us feeling like we’re failing.

Well I’m here to tell you mama, that you’re not failing, in fact you’re doing great! Chances are if you’re frantically worrying if you’re doing a good enough job, you are already an amazing Mum.

Yes, I’m talking to you. The mama that cried in the bathroom away from everyone when it all felt a bit much, so you didn’t freak anybody out. I see you, you’re doing amazing and you are enough.

I’m talking to you. The mama that felt guilty for wishing her kids could go back to school already. You don’t love them any less. I see you, you’re doing amazing and you are enough.

I’m talking to you. The mama that puts on a brave face for other people every day even though you’re facing you’re own internal battles. I see you, you’re doing amazing and you are enough.

I’m talking to every single one of you Queens out there that put everything and everyone before yourself day in, day out. Those of you that feel guilty if you spend your free time sitting in front of loose women, gorging on chocolate digestives instead of doing the hoovering up.

I see you. I am you. We are all enough.

As humans, we feed off the energy around us. Speaking from my own experience, I have a tendency to absorb whatever Joseph’s mood is. I know this is the case for many of my friends, especially those that have children with complex needs. I think this is natural as a parent. You share in their joy and their misery in equal measure. It is difficult to remain calm and positive when your child is clearly unhappy - particularly when there are no obvious solutions for helping them.

Recently we had a bad day following a night with no carer. My partner works away during the week and though we do have respite to help a few nights, some days the exhaustion still manages to sneak up on me and it feels like no amount of sleep would ever cure me. It is that bone deep, soul aching exhaustion that gnaws at your edges and penetrates every pore.

This particular day I had not slept very well the previous night and the sleep I had managed was broken by needing to suction, turn, tend to an incessantly beeping feeding pump, change feeds over, administer meds, administer nebs and oxygen, change nappies, pyjamas and bedding, stroke, soothe and settle. Following this we were both awake and up early. All of the tea in China couldn’t breathe the life back into me.

Joseph was noticeably out of sorts. I dutifully carried out all of the obvious checks; sats, heart rate, respiration rate, temperature, venting his feeding tube and so on. Nothing was jumping out as the clear cause of his unhappiness. I put it down to possibly teething and reflux. A large proportion of the time with complex needs it is guess work. Acting as a medical detective to go through a list and eliminating the many possibilities until we reach the culprit. Unfortunately, though not all mysteries are solvable, and we have to accept that we might not find out exactly what the problem is.

It is especially difficult with nonverbal children that are unable to tell us how they are feeling. We have to rely on their subtle tells in their body language and facial expressions.

This was one of those days. Joseph was clingy. Which is out of character. When he is on form he is a fiercely independent boy and usually only seeks out so much affection if he is feeling under the weather. His evident upset was rubbing off on me because I couldn’t fix it for him.

Aside from Joseph’s rigid bath and bedtime routine, we don’t have specific timetable of events during the day in our house. I am fairly relaxed in that sense but I do always like to make sure that he is doing plenty of physio worked in alongside his play, visual stimulation activities and other adult led engaging play throughout the course of the day.

Joseph was having none of this and was only happy either cuddling me or watching the television. Well, as someone who worked in childcare for years, I always feel like I should be doing something educational even if it’s simple learning as we play. Whenever we have days like this that revolve around the television I feel that familiar guilt tapping me on the shoulder. The flood gates opened and in came the nagging “we should be doing something fun and engaging”, “I shouldn’t have let him have this much television”, “He should have spent more time in his chair” etc etc and so on until I had to just sit back and stop.

I had to try and remind myself that it is ok to have a day off. There is so much expected of Joseph and of myself on a daily basis. Sometimes it’s ok for him to have a lazy day with mummy where we worry a bit less about all the extra therapies, where I worry a bit less about the demands of housework and my enormous and endless pile of paperwork. It is ok if I take a day off from phone calls to various medical professionals, charities and services. They will all still be there tomorrow. It is ok if we don’t get dressed until noon. It is ok to have time to breathe, to process and just be.

I have to remind myself of something often and I’d like to share the same sentiment with all of you.

A bad day does not mean a bad life.

Read that line again and just let it sink in for a second. A bad day, or 10 bad days even, does not equate to a bad life. When you do have one of these days, try to remember everything that you do with and for your kids on a daily basis and give yourself a break. This difficult day will pass and there will be good days that follow. Congratulate yourself on what a fantastic job you are doing.

A day of hanging out together in front of the television is not a day wasted, but a day well spent recharging our batteries so that we can be on top form for the next curveball life throws our way.