It Wasn't Supposed To Be Like This

Written By: Louise from 


She stands beside the incubator, her eyes fixed on her tiny little boy.


I’ve offered her a chair but she knows that if she sits down she won’t be able to keep her eyes open, so exhausted is she from her almost constant vigil at her baby’s side. The only time she’s left the room is to go and express breast milk, clinging to the hope that one day her baby will be strong enough and well enough to drink it.


Despite her exhaustion she doesn’t want to sleep because she knows that this could be the last day, these the last hours and minutes and even seconds that she has to commit each and every detail of him to her memory.

She doesn’t have those lazy mornings and those soft, sleepy hours in the middle of the night when there is just you and your baby and you have all the time in the world to get to know each other.


The times when you lie so close together that you’re breathing the same air and you realise that you would give up anything for this tiny, helpless person who has rushed into your life and stolen your heart and you don’t even care because the love you have for them is so powerful, so all encompassing that you can’t imagine how you ever lived before they became part of your world.


It’s oddly impersonal in the intensive care nursery, seeming somehow the completely wrong environment to witness a struggle so intense that we can’t even tell this mother whether her baby will be alive at the end of the day.


Besides that one small corner where an already grieving mother sits beside her desperately sick baby the rest of the room has to carry on as usual. We speak in softer voices and try not to chat too much but there are still things we have to do and, cruel as it sounds, for all the other babies and families, life goes on.


The doctors make their rounds, the phone on the wall keeps ringing and other parents come to visit their babies. They ask whether their little ones have gained weight, stopped one of their many medications or managed to tolerate just a little bit more milk. They grab hold of each gram, each drop of milk, each tiny victory that moves them just that little bit further away from the thing that they fear the most.

They steal glances, these parents who have hope, quickly looking over into the corner of the room where the mother bereft of even the tiniest of victories sits, still watching her little boy. She doesn’t seem to notice them, so focused is she on her baby, as though the sheer power of her gaze and the force of her longing has the power to heal him.





Waiting for even the smallest, briefest, seemingly most insignificant sign that will prove to her that he’s not ready to give up the fight just yet.


I feel like an intruder, barging in on time that is so precious so that I can administer medication, or take blood or do one of the seemingly endless tasks that make up my day of trying to keep this little boy alive.

I quietly open one of the incubator doors, softly telling not to worry, that it’s only me, reassuring him that I’m not going to do anything that will hurt him.


Mum looks surprised to see me, almost as if she’d forgotten that there was anything in the room or even the world apart from her and her baby. She looks as though she wants to say something so I finish what I’m doing, gently close the incubator door and walk round to stand next to her.


For few moments we both stand quietly, looking at the little boy who seems so tiny and lost in amongst the multitude of wires and tubes and medical equipment.


So small


So incredibly fragile


Clinging to life by the thinnest and most delicate of threads


Mum looks away from the incubator, looks at me with an intensity that borders on desperation and asks me if she’s doing the right thing by letting her little boy fight on.


She searches my face, looking for something in my expression to tell her what to do. I want to speak, to try and offer support or comfort but the words stick in my throat because how can I possibly tell her which choice is wrong and which is right?


Something as simple as right or wrong has no place here.


In their greatest hour of need parents look to us help them make the most difficult decision of their lives and we have no more answers than anyone else. We can talk about statistics and survival rates, explain procedures and treatment options and the likelihood of them making any difference but we can’t tell them what to do.

She looks back at her tiny boy.


“Oh Sweetheart” she says “It wasn’t supposed to be like this.”


I have to bite my tongue to keep in control of the tears that have suddenly blurred my vision because this is one occasion when it isn’t ok for me to cry.


As heartsick as this mother is right now, she does not have any tears to cry and she certainly doesn’t need mine.


Right now this mother needs me to be strong, someone to lean on when she is so wrung out and confused and utterly broken that she isn’t sure how to put one foot in front of the other and take the next step down the path she has chosen because she hopes it is the right one.


As desperate as she is to keep him here, for him to keep fighting and to stay with her, in her heart she knows that there may come a time when he is no longer fighting for himself and despite every nerve and instinct, every fibre of her being screaming at her to do something, anything to save her child, she may have to find the strength inside herself that allows her to let him go.


My tears may have a place later; if the time comes and the worst happens and my red eyes and tear-stained face show that I share even the smallest part of the grief that no parent should ever have to feel.


But that place is not here and that time in not now.


Not yet.



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Made For A Miracle 

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Made For A Miracle is a 501(c)(3) tax-exempt non-profit organization. We were created to assist NICU, PICU and Special Needs families with prayers, support, information and resources. We are a volunteer support group. We do not provide medical advice. Views reflected are our own and not of any facility we serve.