Blog Daisy Nelle

Happy Half Birthday Daisy

I set this to publish at 04:46. The exact minute she was born, six months ago.
I remember when my tiny girl was first born and she was placed on my chest and she was squinting and adjusting to the light of being in my world. 
And those first couple of hours were beautiful. Just mother and father meeting a little person who they had dreamed of for many months.

I found my head running away with itself and trying to work out who she looked like, despite being puffy and pink from birth. And I was already in a dream land of having two children and my future was being paved before me, by my mind, a yellow brick road of love and opportunity.

When she was diagnosed with a cleft palate, and later my syndrome, that yellow brick road started to grow dirty, and soon it fell away, brick, by brick, and I was left wondering what our path was now. Where would we end up? Where do I go from here? This isn’t where I expected to be. 
I used to sit by her incubator, and I would feel empty, aside from a stinging, searing pain that manifested itself in heartache and tears that I worked very hard to stop from falling. She was so tiny and her chest would rise up and down sharply. She was struggling. And so was I.
So I would start to allow myself to imagine a better day. I would wonder about next week at first, but those better days came very slowly. And the change was small. So then it became next month. And then soon, it was the month after. Eventually, I found myself thinking ahead to Autumn because, by then, it was the only time I could realistically hope that things would be better.
Don’t get me wrong. The Summer of 2016 was a beautiful one. Our daughter came home. We had six weeks of Bill before he went from babyhood to boyhood, and started school. And Daisy started fast proving us all wrong. Hitting milestones early and getting rid of her tubes, one by one, far earlier than expected. 
And as the Summer drew to a close, our little girl grew stronger, and those better days became more frequent. 
The weather started to turn. A cool breeze at first, a few fallen leaves, conkers, petals gone, green being joined by yellows, oranges, reds, woolly things, hats, coats, scarfs, high sun, darker evenings enveloping around you as your houses glow on a dusky street. 
And they call it Fall. And it doesn’t sound like a nice season. To fall. But I have fallen. The Summer was where my Spring Daisy grew, and flowered. And the Autumn is where the problems are falling away and I am falling more in love with my daughter each and every single day. 
She is now six months old. 
Halfway to returning back to the day she was born. Although I know that, when 21st April 2017 rolls around, she’ll be entirely different to how she was the year before. 
Daisy is the most fascinatingly wonderful creature. I know she is mine, but there is something about her and I think there always will be. From what she has endured she is a very tolerant little thing. She isn’t bothered by much at all, unless she isn’t part of what’s going on – and then you will know about it. 
She has slotted in perfectly. She makes life busier for us, but she is very good at adapting to our pace of life. She doesn’t ask for much, except that you might hold her and talk to her and let her see everything that you do. 
Despite her easy nature, she is feisty at times. But it’s easy to tell when it’s all for show. She’s brilliant at crocodile tears, and the minute she is with you her face turns the right way again and smiles burst through. 
Her eyes are possibly the most beautiful ones I have ever seen. They are identical to mine, but somehow brighter. Better. And blue like her father, to my green. Both of my babies seem to have blue eyes, and I wonder if I will always remain the odd one out. 
People say eyes are the window to the soul and there is so much soul in Daisy’s. They crease when she smiles and they sparkle and dance with the light. 
She has her father’s brow line and forehead, and her thinking wrinkles are the cutest. Particularly when they are together and both deep in thought. They are so similar it makes me heart hurt. 
Her nose is a miniature of her dad’s too. But with the telltale signs of our syndrome and sequence – a little button-like for now like mine was, but it soon grows and catches up like mine did. 
She has my mouth and smile and we both have that sort of wide-mouthed frog, Wallace smile that I hate on me but adore on her. 
She has our colouring – darker, with skin that you can tell will like the sunshine as she grows older. Her hair is like mine, mousey, and will grow lighter for a while, and then darker, settling on what I expect will be a warm, conker brown.
She has no teeth as of yet, but it hasn’t stopped her from enjoying her food. We have started baby-led weaning this past week, as she has been on puree for a while (as medically advised by her team to get her nasogastric feeding tube removed). She has been brilliant at food from the get-go, which soothed my worries about it being earlier than normal. She has three meals a day and has started snacking and takes more milk than ever.
Both of my children are long and slim. I was once upon a time, believe it or not. She isn’t the chubbiest, but sits just above the 50th percentile line, and weighs over 16lbs now. She moved into 6-9 month clothing around the five month mark as she needed the length, and now she is starting to fill them out width-wise too. 
She can roll from bath to front with ease, and seems to travel the floor quite quickly given the chance. She can’t yet crawl but has been pushing onto her knees now and again, but usually in anger – we are still in the floor-swimming face-planting stage for now. 
She is almost sitting – in fact, she can most definitely sit, but needs to work on her strength so it lasts a bit longer. It’s been nice seeing her doing something new and enjoy a new point of view. In fact, Bill asked the other day if Daisy had finished her tea so she could come and play, and while they are a while off playing together, it made me well up as I watched them together, absentmindedly eating spaghetti. 
Her physical, mental and social development is right on track, which is a great relief when our syndrome presents some difficulties with sight, hearing and muscle development (and subsequently mobility). 
I didn’t have any problems that have lasted into adulthood, so I’m quietly confident she will be the same. We now know that we both have Non-Ocular Stickler Syndrome (once known as Marshall Stickler Syndrome), which we have characteristics but our sight isn’t affected. She has also passed her hearing tests thus far, but that could change as having a cleft can cause the build-up of fluid in the ear (which is rectified after cleft repair usually). 
She won’t have surgery until next year. We’ve been told February, so we’re putting that to the back of our minds now and we’re hoping to enjoy the next few months as we always hoped to – stress and worry free, aside from the every day struggles and ups and downs of life. 
Daisy’s favourite things are to try and swipe any electronic device. Phones, iPads, controllers. You name it – she wants it. She loves to be spoken to and will smile at anyone who gives her a moment of their time. She chews a lot – muslins, toys, your hands, her hands, clothes, fabric, spoons. Anything she can get her hands on. I am sure those teeth will appear soon. Bill got his first when he turned exactly seven months old. 
She loves to be sang to and to copy your facial expressions. She loves the bath. To get out and about. To be cuddled. To stand on your lap. And to pull my hair or stroke her own hair absentmindedly. She loves her brother and finds him fascinating. Her face lights up when her father gets home from work. Mark is so loved by her, and he is more smitten that I can explain. 
One of my favourite parts of the day is when she wakes. Early morning – it could be earlier, or later, I don’t much mind – and I get to open the door to her smile and relief when she spots me. I set her free of her sleeping back and bring her too me, as she flaps her arms and kicks her legs excitedly. In my arms, I hold her close, and I can feel her tiny warm body as she nuzzles into my hair. She smells like home. Warm, sweet, soft. That strange sort of intoxicating perfume, the faint smell of wet nappy and bananas from the night before. A slight reminder of her brother, and her father. And the washing powder and fabric softener I always use. And when she snuggles in bed bedside me, just to doze, and turns into me and clings to me, I feel luckier than I thought I ever could. Her dad sleeps next to us, and we are next woken by my Bill and then it’s all of us in there together. Absolute perfection in cotton sheets. 
She has been our great joy. She has taught us our own strength, and the power that you have when you have love. 
We adore her in every way. And I am so blessed that I get to watch her grow.
Daisy – you changed my life. And I will be by your side for as long as you’ll let me. I will be your friend, your fighter, your voice while you are small. And you will never know a day without love, because we couldn’t love you anymore if we tried. 
Happy half birthday little flower. 


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No Comments

  • Reply
    Trudie Parkinson
    21st October 2016 at 6:31 am

    Beautiful words for a beautiful girl xx

  • Reply
    lucy at dear beautiful
    21st October 2016 at 7:30 am

    Such beautiful words, and even more beautiful pictures of your little flower. She looks such a mixture of you and Mark in these photos, it's like in one shot she's your double and then in the next she is his. She's just adorable. Happy half birthday Daisy Nelle!!! x

  • Reply
    Lisa Santos
    21st October 2016 at 8:42 pm

    Loved it x

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