When you were born, and I pulled you up onto my chest, my eyes were hungry to feast upon your face. I needed to see the face of the child that I had been dreaming of for so long. I wanted to drink in the curves of your cheeks. The arch of your brows. The lashes. The rosebud lips.
And I did. You were swollen from birth. But all babies are. And I was too busy finding similarities to your dad and your brother. But something at the back of my mind was telling me that, actually, you looked an awful like me. Your mother.
And really, given my syndrome, I knew deep down that any child of mine probably wouldn’t look too much like me unless I had passed on what I had. Those typical features. Those tell tale signs. Huge eyes. A little nose. High cheek bones. A small chin.
And hours later, my quiet thoughts were right. You looked like me, because you were just like me. The same syndrome. The big eyes. The small nose – though yours is a small version of your dads. Mine is like a piggy button. Yours is much lovelier. Your mouth, like mine. Inside, a cleft, like mine. A small chin.
All things we secretly delight in when someone says: “They are the double of you.” Actually. Please don’t say that. I wanted better for my baby girl than to go through things like this. I don’t take any pride in this. I just feel horribly guilty.
That first face was the face I fell in love with first. The face that, when I eventually fell asleep at night, I would see. Alongside your brother’s. My two children. Perfect as could be.
But when your breathing suffered, you were taken from my arms, to safer surroundings. One tube was added, to feed you. And then before I knew it, another was added. To help you to breathe. You left me pink, and soft, gentle curves, delicate features. And you were handed back to me – I say handed, I was finally able to gaze at you through a plastic baby greenhouse – and the face staring back at me was not my baby’s.
You now came with plastic wires. Thick and harsh against your beautiful new skin. Your small nose pushed upwards and flatter against your face, with the tape to secure them down. They stole such a big part of you. It was like your face was split in two. I couldn’t take it in anymore in the same way. The only thing that made me certain it was you were those eyes. The eyes that I began to recognise not just as my own, but your brother’s too. One similarity we all share and one that I began to celebrate. And the one thing everyone would say. Those eyes.
I would go home at night and I would sometimes plug in headphones and lie back on my bed and cry. I’d listen to this song
. It reminded me of you so much. It captured how I felt every time I had to leave you. And reminded me that, when people say that the eyes are the window to the soul, they were not lying. Those eyes would follow me everywhere. They would cry tears when you needed me. They would tell of a smile before your lips even knew they were smiling. And they have stayed the same. Always.
Eventually, the tubes became part of you. Almost like a tattoo. When I saw my daughter she would be the baby with the big eyes. The wide smile. And the tubes. I was immune. I did not recoil or feel shock like so many others did. Once you were home, I would walk down the street in a happy bubble, pushing you in the sunshine, and holding your brother’s clammy hand. And my happy bubble would burst when someone would try and hide their shock. Or ask me “what is wrong with her?” How I would try and answer with some dignity, and respect for an innocent question. But often I wanted to run. Don’t ask me that again. There is nothing wrong. She is perfect.
These days. You have just one tube. The thick transparent tube, with the blue strip and the black numbers. It is long gone. Your breathing tube. How happy I was that you could breathe unaided that I didn’t even consider that, upon removal, you would be different all over again. We changed it twice a week. A precious task, not taking much time to stop and look at you. We would have the next tube lined up with duoderm tape to secure it, pre-cut to the size of your tiny cheek, and lubricant to make the whole procedure less painful for you. It was never a moment to gaze at your face. For all we knew, we were keeping you breathing. It was fast. Furious. Old one out, new one in. And then we’d breathe a sigh of relief and try not to join you, as tears brimmed at the very bottom of those blue eyes and you looked at us as is to ask: “Why?”
When it was removed for good. I remember looking at you and seeing the similarities to that newborn baby of mine. But what I hadn’t appreciated was that your recessed, tiny, little chin would be moving forward all the time. It used to be sunken. And your face would be, as my parents used to call me, much more like ET. Affectionately you understand. They would call me ET as I had huge eyes, and not very much more than that initially. But here you were, such a delicate feminine little face. The widest froggy smile in the world. A nose that was dinky and cute and no longer squished uncomfortably against itself. Nostrils flaring.
Daisy, I had always thought you beautiful, but I was not prepared for how much. You took my breath away. It’s almost as if you were a butterfly growing slowly under your cocoon. Ready to show us your true colours when you were ready.
And so, in the past few weeks, you have had just the one tube. To feed you, to help you grow. And thrive. And seeing your face, aside from a small strip on one side has been wonderful. My mind, you might suppose, can imagine away that one strip and I shouldn’t expect that you will look much different without it, when the time comes.
But today, today you were due a tube change. Just a routine thing. Just to make sure your tube is shiny and new and functioning properly. And I fed you, and decided to call the community team and ask, if it was okay, could I take it out now until they got here, because, well, it’s just, I haven’t seen your face like this for such a long time.
I left a message. There was no one there. And I didn’t know if it was the right thing to do. So I left it. But a couple of hours before the team were due to arrive, they called back. The ‘No Caller’ on my screen was a dead giveaway. I babbled away, apologetically. It’s fine if it’s not allowed. But they stopped me: “Charlotte, she’s your daughter. Of course you can take it out.”
So I did.
And I spent the last couple of hours gazing at your face. I know, to some, the change might be minor. But to me it was huge. Just to see you. I felt shy.
I sent photographs to your dad first, and then family. Your dad said: “You wouldn’t think she would look much different but she really does.” You do. You looked so happy and peaceful and free. I kept seeing more of your father in you. He loves you, you know. He comes home every day from work and scoops you up and kisses her. And he looks at me and goes, as if to speak, and shakes his head and just air comes out. “What?” I say, curious.
“I just love her so much,” he says. “I could cry.”
Your brother. “Oh Mama! Look at her! Her tube is out. Will it be out forever Mama. She says she wants it out forever.”
I don’t know the answer. “I hope so baby,” I reply. “Soon, maybe. When she’s ready. She just has to drink more milk.”
“Okay baby girl,” he scolds you. “You do what Mama says and drink all your milk up like a good girl, okay?”
Okay. In your time though baby girl. We want what’s best for you. Not us.
That tube, for now, has gone back in. The other nostril this time, to give your delicate cheek a rest.
And even that change is enough to confuse my mind. Searching your face for something I recognise and again, settling on your eyes.
You weren’t happy to have it back in. It’s not nice. I hate watching it play out. Even though it’s minor compared to the breathing tube we used to have to insert ourselves. We switched nostrils today. Your cheek was a little sore. And we thought it might be nice for you. But oh how you sobbed. We wondered if it might be a flashback to the time where we would change your breathing tube. That was always the nostril we would use. And you were so sad to feel that sensation there again.
Now, baby girl, you have a tube on the right side, as I look at you. And the left side is losing the dent, and the skin is looking better and calmer already.
A slight adjustment. But one I notice all the same.
One day, that will be the face I know forever. And the changes will be natural and gentle changes that come with time. Longer hair, defined brows and lashes, chubbier features, that soon give way into the slender form of a child. And her chin, the one thing that caused most of the trouble to begin with, while still smaller than most now, will be no different from yours or mine. Well, certainly not mine.
But know Daisy, know that no one will ever love that face, more than I do. I commit every feature to memory. I love all of you. I have tried to kiss all of you. Capture all of you in my mind, and on camera.
There are three faces in this world that take me right back home. If the three of you were in a crowd. Busy, hectic, bustling. I would find you in an instant.
I know you. You’re my daughter.