Why ‘Good Enough’ is Enough; Letting Go of Mum Guilt as a Parent to a Child with Complex Needs  

By Rhiannon Louden (She/her), Rare mum chronicles 

Let’s stop putting pressure on ourselves to be perfect, and get back to what’s really important: finding joy.

I have been a mother for (almost) eight years now, and of all the complicated emotions that come along with motherhood, I think mum guilt is the hardest to manage. It is a particularly nasty genre of the big G- one that is completely unfounded and yet also completely inescapable.

Mum guilt spares no one. I have had more conversations than I can count about mum guilt- with women of all ages from all walks of life.

Conversations had over and over again, at every age and stage of child rearing: hushed words spoken honestly with newly made mum friends at the play park. Standing side by side, exhausted and overwhelmed, pushing our babies on the swings as we relayed all the ways we had failed them that day. Deep into toddlerhood, texting about our messy homes and missed appointments to stave off the loneliness of late nights or early mornings (sometimes both). Occasional meet ups over wine, always ending in teary admittances of all the ways we were “bad” at motherhood.

Mum guilt is real. And mum guilt when you are parenting a child with complex needs?

A whole new level of mum guilt

Along with the universal guilty thoughts of:

“I’m working too much” and “I wasn’t present enough in the moment today” and “I have ruined my child for life because I raised my voice after asking them to pick up their lego for the tenth time” there are also thoughts like “we should have left our picnic earlier to fit in our physio exercises” or “we only managed five minutes on the eye gaze today, we were meant to do 20!” or “I still haven’t finished filling out that 12 page application for that specialty trike”.

Which all translate to: I haven’t done enough, I’m failing my child, and if they have a regression or don’t develop that new skill or are delayed in getting that equipment they need it’s ALL MY FAULT.

There’s guilt of not being a “good enough” parent, and then you top that off with the perceived thoughts of holding your child back from developing to their full potential. Or worse- causing them to regress. Like I said… another level.

When your child isn’t “typically developing”, there is SO much pressure to try to find and access to everything out there that could possibly help them. You want them to learn and develop in all the ways other children do. You want their life to be as full as possible. You’ll never be able to live with yourself if you don’t give them the best chance at all of those things.

Lack of control = pressure to do more

I don’t think any of those thoughts are irrational. By nature, our priority as parents is to help our children develop and grow. But I think that the pressure we put on ourselves to do more, to do EVERYTHING, is born from a desperation to claw back a bit of control in an uncontrollable situation.

And what I’m learning, about 18 months into this rare parenting journey, is that no matter how much I do- there will always be more out there I don’t have the time, energy, or resources to access.

And even if I did? There is only so much that therapies, and equipment, and new approaches can do.

At the end of the day, as hard as it is to admit, my daughter’s health and development is largely out of my control. It’s out of anyone’s control, no matter how qualified or well read or experienced they are. She is at the mercy of a rare genetic condition that affects every single girl differently. We have no way of knowing how it will progress in our three year old- what skills she might gain, and which ones she may lose. How severe her health issues become, or hardest of all, how long she will live.

So what does this all mean?

It means that we, as parents, needs to stop putting pressure on ourselves to do it all- and do it all perfectly.

That it’s okay to pick and choose between which therapies suit our children and our families best, and which ones we can put on the back burner.

That we shouldn’t feel bad for skipping our exercises and staying at the park when our child is having a blast and we’re making new memories together. That is important too. Perhaps more important, in the grand scheme of things.

And it means knowing that whatever you are doing: It is good enough. You can’t do ALL the therapies or have ALL the equipment or try ALL the new things. You only have so many hours in a day, and you don’t want to spend all of those precious hours together on therapy.

Taking it back to what’s most important

Earlier this week I was at a toddler swimming class with my daughter. She has always loved the water, and it’s the one class I can take her to where I can sometimes forget for a moment how different her path is. Some days, she gets frustrated with her body not cooperating or she’s too tired to follow along and we leave the class early. But this week she was in her element. I’ve never seen her so engaged, so excited to participate, so proud of herself as she found a way to join in each and every exercise. The beaming grin, the sparkling eyes, the excited flapping of her arms. The class ended and she told me, with her gaze, that she wanted to stay in the pool.

I paused for a moment, looking up at the clock, thinking about all he things I had to do when I got home. Everything I was behind on. And then I looked down at the tiny, amazing person in my arms who just wanted more time in the water to play with her mum.

It was an easy choice.

We spent another twenty minutes in the pool, laughing and splashing and just enjoying each other’s company. It’s the best day I’ve had with her in weeks.

We didn’t get any of our therapy exercises done that day. We didn’t work on eye gaze, or formal communication. But we did spend uninterrupted time together: in the moment, bonding, making the most of a day where everything was in alignment.

I want more of those days.

I want to enjoy this time with my girl. I want to make memories. I want to relish in the joy when it’s present- because some days it is hard to find. I want to forget about all the things I “should” be doing and all the things that are different about my daughter and just enjoy her in the moment- enjoy her for who she is and what she can do instead of focusing on all the things she can’t.

And that’s not selfish. Finding and celebrating and prolonging moments of joy with our child benefits them, too. I was reminded this week, as I watched my beautiful daughter revel in the fun of moving through the water, that what I want most for her isn’t for her to develop certain skills or “catch up” to the children around her.

I want her to be happy. To fill her life with as much joy and wonder and love and laughter as I can, for as long as I can. THAT is truly my most important job as her mum.

So never mind prioritising the therapies and forms and research. If we found a way to help our child experience a little bit of joy today? That is more than good enough.

It is everything.

Read more on Rhiannon’s Blog, ‘The Rare Mum Chronicles’ here