Blog

We Have The Date for Surgery

I was sat at our kitchen table this morning, trying to feed a baby porridge that she didn’t really want. Mark had just left for work. And I could feel that part of the table had dried Weetabix on it, which made me frown. I was listening to the noise from the television on the wall. Something about that platypus that Bill likes so much. And I saw my phone flash, so I picked it up absentmindedly. And took a sip of my coffee.

And then I felt myself crying.

Daisy’s clef nurse had messaged me the date for Daisy’s surgery.

And it has been something we had been waiting for, and counting down to for a while. And we knew it was coming. We had been treating it as a positive thing. That last step for our little girl. And then it would be behind us for the most part.

But when I saw the date, I didn’t feel that way at all. I don’t want to take our daughter back to the hospital we left behind. I don’t want to try and be brave. And I don’t want to see her go under, and say goodbye to her and leave her in a white clinical room while people crowd around her. I don’t want to surrender my baby. The last time I did that, I had to sign a consent form to say that, if anything happened, they could put a tube through her neck. And change her future forever.

That was when I clung to her still-warm sleepsuit and cried. When I needed Mark to hold me up. And when I sat in a hospital canteen, staring into space, clutching my phone, and a special buzzer that would go off when she was out.

This is different. And I know that. This is a really good thing. Daisy will be able to suck. She will be able to drink from any old bottle or cup. She could use a straw. She will be able to learn more words. And will finally be able to say ‘Dada’ for her Dada. Which I think would make him happier than she could ever know.

She will be able to go from strength-to-strength. And I can’t stand in the way of that.

But I am already mourning those little cleftie noises she makes. The growls. The Darth Vader noises. The grunts. The way she pushes air through her mouth when she is excited. They will be things of the past. They will stay behind with the days of tubes and specialist feeding bottles. And snorting peas through her nose.

I am scared for her to be in pain. I am scared that someone is going to be in charge of my daughter’s life. I am scared that they will have instruments and tiny knives and equipment. That they will use to put her back together again, when to me, she is not broken. She is perfect. And I just have to wait in that canteen again. I will most likely have to see her with the tube down her nose, the one that used to keep her alive. And I know I will find that hard. I will want to see my little girl’s face when she comes back to me. And instead I will have to gently kiss a taped cheek. And hold her tight.

My sweet girl has been through so much. And I knew that this was going to be hard. It is why I tried my best to start this year with as much positivity and strength that I could muster. But I did not realise quite how quickly the dark clouds of guilt would return. And how it would leave me feeling too.

28 years ago, well, almost 29 now, I was born. And my parents went through this once too. And it didn’t stop with me. I passed it on to my daughter. And I still can’t believe that she was me. I was her. I was little, and small, and I don’t remember much of the pain or the hospital trips. I only really remember a happy childhood. And small parts of my medical history. But mainly I just know what I was told. She and I are cut of the same cloth, but maybe the colours are different, and the way our fabric falls is different. But she is as close as I know to myself, in this world, in many ways.

But to be a parent – it is moments like these that I won’t ever forget.

I am so scared to let go of my baby girl and let this happen. But at the same time I am so excited to know that she will have a future like mine, that is free of all of this, unless perhaps history repeats itself again and she has a baby of her own.

I want her to know that I am so proud of her. I cannot believe how much she takes in her stride.

I know that the anticipation of this happening is most likely going to be worse than the operation itself.

And I know that we will come out of the other side like we always do.

But tonight, I am just scared.

I just want it to be over.

I just want her to know I think she is perfect as she is. And that, when she wakes, and she hurts, and she is scared, I will be there.

And I will do anything to help her feel better. To help her recover. And to help her realise how beautiful, strong and utterly wonderful she is.

But for now, when the 14th February 2017 rolls around, I will wish you love and some time with the one you adore.

But in return, could you send a little bit of luck to her?

You Might Also Like...

2 Comments

  • Reply
    katie
    19th January 2017 at 10:11 pm

    This is so beautifully articulated Charlotte, there is no question you love her just as she is, and it must be such a challenging experience to both want this for her and yet hate the idea of what she will go through at the same time. Wishing you, Daisy, and your family, all the very best xx

  • Reply
    Lisa Dixon
    31st January 2017 at 11:15 pm

    Beautifully composed, Charlotte. There is no doubt that Daisy is loved, unconditionally. Like you, when she grows up, she will remember how much she was loved as a child. She will remember happy times and holidays. When February 14th rolls round, a day known for hearts and flowers. You, Daisy and your family will be in our heart and you will be loved. And there’s a special little flower who won’t leave our thoughts. Daisy Nelle ?? xxxx

  • Leave a Reply