“Now life is very different and burnout is always looming.” #NeonatalFeelings

Through these stories, we aim to shed light on the emotional toll that a NICU experience have on parents, as they balance the demands of daily life, the anxiety of medical uncertainty, and the exhaustion that accompanies the care of a sick or premature baby as they get older.

Ei SMART is a registered charity dedicated to transforming early neurodevelopmental intervention for infants at risk due to prematurity or birth trauma. The Ei SMART framework, developed with parents and based on current research, supports infants from birth through neonatal care and beyond by focusing on Sensory, Motor, Attention & Regulation, and Relationships. It emphasizes the importance of multidisciplinary teams working together with families for successful early intervention.

The notion of ‘selfcare’ isn’t something that can just be given as an instruction or good idea; some sort of suggestion on the end of a sentence about how to implement a therapeutic approach for you child or execute a behavioural outburst repair. Therapists or doctors would look me in the eyes and say ‘you must take some time for yourself’ with kind smiles. How, I wondered, on earth can I remove my head from this relentless swirl of heavy load, release my grip from controlling all the threads, managing the fear, to think about myself? Another task, I thought, another thing to do, another box to tick. No thanks. I’m already exhausted.

My eldest now approaches teenage hood and I am navigating a parenting journey that has been full of procedures, check-ups, diagnoses, interventions, school meetings, paperwork, specialists, therapies, pain, trauma, shame; all whilst never missing a calming tea/bath/bed time routine (prioritising sleep hygiene, naturally). But recently the role of self-care has finally come to the forefront of my mind. A concept that once seemed so ravishingly outrageous now feels desperately urgent. Where to start? I felt completely overwhelmed with the concept of taking time for myself, taking time off; what would I actually do? How would I even find the time? I had no idea.

Fighting all the thoughts that this would be a crippling selfish indulgence, I pushed on. Why did I even deserve time off? Time to myself? Time to recover? I mean, it’s not as if anyone has ever said to me that my journey might look to be a challenge, may have been tough, may have been out of the ordinary. Is it? I haven’t had time to lift my head up and look around too much. It invited too much loneliness.

Self-care? That will make me feel better. Ok great. Brilliant plan. Challenge accepted. Except I have no capacity for challenge left. That’s all been leeched dry. So, I’ll start slow with some wall staring…

It’s taken a while to know how to start to fill all of those empty vessels. For me, self-care hasn’t come in the form of days off, indulgent spa days (although that does sound fun) and amazing holidays, I was too burned out to enjoy any of that. The very thought just made me feel more stressed. Rather it started with an inner compassion for myself and recognition of what I have lived through. I know my story, I know the strength I harnessed to have my family, to hold all their needs, it was tough. It is tough. Superhuman. It would be ok to recognise that, it’s not self-pitying but just true.

My self-care started with small snippets of time away from the overwhelming load, even if sometimes all I could manage was a few breaths of air before the feelings found me. It’s been learning to share the load with others and finding friends who carry their own weights and understand the toll. It’s indulging moments of spontaneous joy, prioritising the relationships with my children even if those intimate moments are brief and the hard work is long.

I have a horrible dread that this new journey path is long and still feel afraid that it won’t be enough, that it’s happening too slowly, that I might one day actually fall to dust when I have given it all and my insides cave in. More wall staring and reset. I think of that young girl who sat in the NICU all those years ago, on the cusp of a journey that is far longer and heavier than she knows, that I will be brave enough to say to her:

“This is terrifying. This feels lonely. You are amazing. Be kind to yourself”.

The path from NICU to the ‘new normal’ is isolating – the feeling of being on one track with all your friends and colleagues, and then suddenly being thrown onto an entirely new path – alone. You have to re-build your identity, your knowledge base, your support network, your expectations, your dreams. And whilst you're trying to bridge the ‘old you’ and ‘new you’, along with your ‘old reality’ and ‘new reality’, you're entirely consumed with keeping your child alive. So you are in this physically exhausting cycle with your child, and whirring away internally is a frantic, chaotic, guilt-laden emotional process. ‘Permission for self-care’ was never really about meeting the physical need for sleep or rest. For me, it meant ‘permission to think, permission to create headspace and permission to indulge my emotions’.

As an immigrant parent, with no family around, who had twins in NICU and another child at home at the same time, for me self-care meant respite care.

After discharge from hospital, it was impossible for us to find someone to help us with our sick babies, who were tube fed and with oxygen. At some point, we tried to get help from an organization that offers respite care, but only to families who have babies in palliative care, which was not our case. Therefore, I was always functioning with 'low batteries' and having a few minutes shower felt like a luxury.

When I had a bit of time, it was very easy to recharge myself: walk in nature, hot bath, meal outside, reading for pleasure, seeing and talking to a friend, praying etc. Now life is very different and burnout is always looming.

As a parent, it can feel like you have nowhere to turn to for support whilst you deal with a child that has complex needs. You are on a waiting list for to get support for but in the meantime juggle all you have to ensure your child's needs are met to the best of your ability as a human just trying to keep another human happy. You are in the waiting list line, you don’t know what you are dealing with, what label your child has, just that they are different to the norm.

For me currently with my child being three years old and having a severe speech disorder and so full of energy, am I looking at mainstream schools or special schools? Will something just click and he starts speaking and all of the troubles are behind us? We feel we are raising him and supporting him the best that we can but are we?

When he has a bad episode it puts pressure on us as his parents to help calm him down whilst we too, on the inside, are feeling incredibly stressed.

We hear many contradictory themes in NICU — we are told to take care of ourselves as parents, to take some rest. At the same time, we can feel a lot of pressure when they ask us why we have to step out for one hour, that we should do this and that etc.

Life in the NICU is just the beginning of the journey. Life after discharge can be as or more challenging and draining for parents, especially during a pandemic.

So support and understanding need to start early as every additional month may deplete parents even more. It is not a marathon but an iron man we are talking about!