Blog Daisy Nelle Motherhood

The New ‘Normal’?

Daisy is two months old today. And she has been home for over two weeks now. Actually, she’s been home for two weeks and four days. I know that. I wonder how long it will take for me to stop counting?

I am feeling…strange?

I am so happy. Compared to my emotional state when she turned a month, where my heart was raw, broken and stinging with pain, I feel at peace. I know that things could be much worse. Because I have experienced ‘much worse’. And worser still exists.


But I am finding things hard too.

I don’t for a second think that I am suffering from any sort of depression. I can say that with a firm assurance. But I do wonder if I am starting to deal with the experience I had, now I have the time to process what happened to us as a family?

It almost seems as though it’s like post-traumatic stress? The main reason I think this is that I am having night terrors, quite a lot in fact. Every night. And Mark is the same.

I sleep with my daughter by my bed, in her crib, and her stats monitor glows red and green in the darkness. With her oxygen levels and heart rate. I spend a good half hour every night trying to fall asleep. But my eyes snap open every minute or so, to check the numbers on the screen. Her oxygen levels mainly. Anything from 94 to 100 is spot-on. But if she kicks her feet, she can send her monitor doolally and the beeping will start. And if the number is 94, I can’t close my eyes again until it goes up. I panic.

And I know why. Daisy only spent a couple of nights on the ward with me in hospital. With the same type of machine. And this was before she had her NPA, which stabilises her airway. And that monitor would sound every few minutes. I would panic. I would panic when visitors came. As you could only hold her on her side. Not in that cradle hold that a mother’s arms naturally form. No. She had to be flat on her side. And it was hard to hand her over. I worried every time. If the alarm went off, and repositioning her didn’t help, I would feel the sweat prickle on my skin. I would flush red and feel so unbearably hot with rising panic. And I’d press the red button for help. I forget how many times I pushed that button.

But I slept for about three hours during the first three days of her life. I was exhausted, lonely, broken-hearted, recovering from birth, and trying to blur out the cries of other mothers and babies on the other side of the curtain.

I was in hell. And I don’t think I will ever forget the beep of these monitors. For as long as I live. I remember when we drove home from hospital once. And I was in a sleepy and sad daze. And I jumped, startled, because I heard that beeping. Only to realise, in shame, that it was the beep of the traffic lights, letting pedestrians cross.

And now, in the middle of the night, I wake to the beeps. Always a malfunction. Never a threat. Or I wake from a terror. She isn’t breathing. She isn’t there. I can’t save her. I feel in the dark for my daughter and disturb her. Just to know that she is there. She is breathing. She is there. She is safe with me.

Despite this, mow we are home, I am finding my feet. I know my daughter instinctively. You can’t break that bond between mother and baby, no matter how many wires, tubes, or plastic cages you put in front of them. I know how to soothe her. I know what her cries mean. And for that I am thankful. Because I was once terrified that I would just be another woman in her life. Like all of the other women who have cared for her, while I was caring for her brother.

But I am loving being home. I am in my element. I am able to run my ship. Perhaps not as tightly as before. But enough that it is ship-shape if you like. And yes, there is crumbs trodden into my carpet, by my son who seems to generate them just by breathing. And I have piles of laundry everywhere. I simply pluck from the top of the pile these days. But who cares? I am a product of survival. I made it. We made it. And I honestly don’t know how to distinguish between having two children, and all that comes with it, and having two children, one of which has special needs at the moment. And maybe it is similar in many ways. I don’t know any different.

The only thing that drags me down are the reminders of what was and what is to come. And it all comes back in the ring of a doorbell. Or a car pulling up outside. Or my phone flashing with a number – of which there are several – that I know too well.

Community care. The nutritionist. Our cleft nurse. Ophthalmology appointments. Genetics.

And then the ‘normal’ stuff.

Health visitors. Jabs. The six to eight week check-up that won’t be happening until we are ten weeks gone, as we are that behind.

I just wish it would fade a little. I have a diary that is packed full of things to remember. Visits. Appointments. And I seem to lose three days of my week to them. When I already devote a lot of time to being my daughter’s carer, as well as her mother. And I sometimes wonder which role of those two she needs the most? I hope it is the latter, but ‘Mama’ seems to get pushed to the back when time flows as fast as it does.

And my there’s my son’s life too.

Nursery runs. Trips to the park. Swimming lessons. Little visits to ‘big school’. Preparing him. Loving him. Encouraging him.

And yet it’s our first week, just us three, now Mark is at work. My parents and grandparents just so happen to be on holiday too. So instead of being my baby boy, he is also, in ways, my helper. A second carer. Dummy holder-inner. Nappy fetcher. Cry alerter. Smile maker.

Why can’t he just ‘be’?

Why can’t I just ‘be’?

Why can’t Daisy just ‘be’? And we all just ‘be’?

Instead of the rigid schedule. The approaches from strangers, and then the reproach and strained smile when what they see inside the pram is not what they were expecting? Of course it is absolutely not their fault. You don’t often see babies with tubes on their faces and down their tiny nostrils. Or a monitor or suction machine in tow, along with a changing bag packed full with more than the odd nappy and change of clothes.

I am so grateful for this. But I do wonder when it will all slow down a bit and I can be myself again.

If this is our new ‘normal’, even if just for now, I am finding it hard. I am absolutely coping. I have absolutely got this. I am absolutely grateful. If you could feel the relief, love and joy in my heart then you would know that.

But it’s hard.

But then I wouldn’t change it. For to do that would be to change my beautiful daughter. And I would not have her any other way.

My acorn didn’t fall far from her tree.

And I owe her my life and my absolute best to help her grow. Just like I did.

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5 Comments

  • Reply
    Unknown
    21st June 2016 at 1:51 pm

    I think that you all are amazing ??what a super special little family you are X X x X

  • Reply
    Trying at life
    21st June 2016 at 6:31 pm

    Can't imagine how you are coping with all of this, on auto pilot I'm sure, but I do know in years to come you will all be saying "remember when…" And I hope you will be amazed at how well you have done, and will continue to do. Being a mum is hard, this is even harder. You're all amazing. And William and Daisy are gorgeous xx

  • Reply
    There's always time for tea
    22nd June 2016 at 10:31 am

    I remember at the beginning with Anest everything was so up in the air there was just constant appointment after appointment. It is hard. But you are strong and you will cope just fine. We are four years later now, everything is much calmer, appointments are every 6 months or so and we look back and think how on earth did we manage to do all that? But we did, as hard as it is to imagine now!

    I felt like you are describing, like you don't have depression but something is going on. I remember someone saying to me that even though we didn't lose our baby we are going through a stage of grief in the way that someone who miscarried or their baby died in childbirth would because even though that didn't happen to us, we still have got to mourn for the child that we expected to have. I'm not explaining it very well, but it did make a lot of sense to me at the time.
    By the way, I hope you didn't mind me messaging you on FB before, I just wanted to let you know that our daughter had a trache and as bad as it seems, it wasn't the end of the world 🙂 and that someone had done it before. When we had the trache I felt like I was the only parent in the world going through it xx

  • Reply
    Elisabeth
    22nd June 2016 at 8:18 pm

    Oh she is utterly utterly gorgeous!

    About post-traumatic stress – yes that probably is a reasonable label for what you are both experiencing. If it helps, feel free to acknowledge that your jumps and starts and flashbacks are an unsurprising response both to what you've been through in the last few weeks, and the ongoing worries that only time and growth will reduce. And then at least don't "worry about worrying" but keep on keeping on and hang in there with your beautiful children, till the day comes when you can look back and go, how amazing that we have come through all that.

  • Reply
    Laura
    31st October 2017 at 11:49 pm

    Man alive you look knackered in that photo 😂

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