It seems so impossible to want something gone for so long and then when it actually might be truly going suddenly feeling so incredibly sad about it. 
Oliver is 18 months old and has been fed by nasogastric tube for his entire life. Tomorrow we take it out, as part of our attempt to wean him from the tube. He’s not drinking milk, he’s not eating much, but the idea is that he will become so incredibly hungry that he will start to eat and drink. It’s a form of torture really. But it’s the way that science tells us is most effective. 

I primed the new feed line tonight for the last time. I opened the purple pack and threw out the pieces we don’t use and I screwed it into the bottle and primed the line with milk. 

And I cried. 

I don’t want to have to prime a line to feed my child but it’s all I know. 

I cried because we are going into the unknown, a place of fear and hunger and dehydration. I cried because I’m a woman of routine and this is what I do every single night, how do I make a new routine? I cried because I was sad, because although it wasn’t what I wanted, it has become our normal, our way, and I will miss it.

And I cried because I feel like I’m taking part of my son away from him. 

He is chatty and he smiles all the time, he’s not a big crier and he’s in love with cars and oven doors and balls, and he’s a tubie. It’s part of him. The tube, the tape, the pump and line, the adapters and syringes; they are Oliver. 

His face is a blocked nostril and some duoderm and hypafix, a bridge, a loop and an anchor. I’ve never spent more than an hour looking at both of his empty cheeks in the last year. 

I don’t even know what he truly looks like. 

He crawls along and throws the tube over his shoulder when it dangles in the way. He nibbles the end sometimes and he swings the feed line against the side of his cot when he wakes up in the morning. He lies still while we change his tape and he lets us because it’s just part of his day. 

It shouldn’t be part of his identity but it is. And we are taking it away. 

In the dark of the night I can make him hate me for this, even though I know that’s ridiculous. But I can imagine him wondering why his cheek feels cold, and struggling to fall asleep because his tummy isn’t being filled up with milk while we rock. I can see him become more tired and dehydrated as the time since his last tube feed goes by, see him wonder why he feels so funny in his tummy and why things aren’t happening the way they used to. 

And I hope he will forgive us for the misery and discomfort we are putting him through. I hope he can understand in a years time when he’s eating macaroni cheese that we challenged him and were hard on him and his body so that he could enjoy his dinner without having to hook up to a pump and sit still while his tummy fills. 

And who knows, maybe we will only get a day to look at those little cheeks, but maybe we will get a lifetime. So tonight I’m trying to commit to memory who Oliver is as a tubie, and to enjoy the last few feeds that I hated for so long, because they are part of our history and they deserve to be remembered. They tell a story of how hard we worked to help him grow so that he could be brave and strong and here. 

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A thought or two on World Prematurity Awareness Day.

World Prematurity Awareness Day.
So today is World Prematurity Awareness Day and as I sat down to write something about it I started thinking about what ‘awareness’ actually means.

Does it mean being aware that prematurity happens?

Or being aware of the affect it has on families?

Or is it about taking a moment to stop and think that sometimes something as ‘natural’ as having a baby, which millions of woman do, can go so completely crazily wrong for so many?

All of the above?

I’m only one person. One mum. But this is what this day means to me.

I knew the word prematurity before this. I’d worked in the NICU, I’d seen the tiny babies and watched them struggle. I’d seen the faces of the parents and felt for them, I’d watched the tiredness saturate them. But it wasn’t mine. Prematurity and I were colleagues, not family. Part of my life, but not my life.

Now the word prematurity is carved into my bones. It’s in the lines on my face, and the paleness of my skin. I taste it when I lick my lips and I can smell it in the air. I see it when I first open my eyes in the morning and it wraps itself around me when I get into bed at night. We are married now, prematurity and I.

It hits you like a truck and drags you along the concrete until your hands are bleeding and your skin is raw. It drains the fluid from your body like that inescapable summer heat, when it doesn’t matter how much you drink, your mouth is still dry. It takes the air from the room and leaves you gasping for breath. It holds on tight and it doesn’t let go.

But as much as it tugs my eyes to the ground and makes me so weary I want to drown, it also makes me push my shoulders back and hold my head up high. It gives me ground to stand on when the waves get heavy and it pulls me up out of bed in the morning. It gives me rainbows after rain and sunshine through the clouds and now that it is a part of me, I know I couldn’t live without it.

It is so entwined through me and my children, like a stream of purple flowing through our veins.

Prematurity meant I watched my children grow when I shouldn’t have been able to. It meant I had to lose a dream, to let go of my child and spend a life without him. It meant I had to watch his brother struggle and fight, succeed and conquer. It meant I had to grieve, everyday, for so many different things. And it meant I had something to fight for, ferociously, forever.

This is what I will do.

We don’t live in America. We have family and friends that do but that’s not why I’m writing. I’m writing because this isn’t just about America, it isn’t just America’s responsibly to figure out how to survive this. It’s about human rights and equity and feeling safe in your home and we should all strive to help others feel this way. 

I would offer my home to anyone who needed a hot meal and a bed. But that also won’t fix this. Hiding and being afraid cannot be the answer. The answer has to be in action. But the action first has to come from the people in the privileged place to begin the action, only once they start can those that live in fear come forth and join. 

I live with white privilege, and many around me live with white male privilege. That is where it should start. It shouldn’t be there in the first place, but since it is we have a right to use it to help. 

The biggest influence that I have is as a mother. And this is where I will start, and where so many of you can start. 

“Tell [the children] that you will honor the outcome of the election, but that you will fight bigotry. Tell them bigotry is not a democratic value, and that it will not be tolerated at your school. Tell them you stand by your Muslim families. Your same-sex parent families. Your gay students. Your Black families. Your female students. Your Mexican families. Your disabled students. Your immigrant families. Your trans students. Your Native students. Tell them you won’t let anyone hurt them or deport them or threaten them without having to contend with you first. Say that you will stand united as a school community, and that you will protect one another. Say that silence is dangerous, and teach them how to speak up when something is wrong. Then teach them how to speak up, how to love one another, how to understand each other, how to solve conflicts, how to live with diverse and sometimes conflicting ideologies, and give them the skills to enter a world that doesn’t know how to do this.” 

From HuffPost, What Do We Tell the Children?

This is what I will do. What will you do?