Have a read!!

Trial and Error

“The preliminary results of the study which Charlie and Oliver were enrolled in at birth are now being published”.
This sort of seems like an exciting statement, as we may have some new information that can help the future kids who are born too soon. But when I read it, and related it to the study it was referring too I felt less excited, and more scared. 

When you go into labour at term you aim to follow your birth plan, and you change it as the situation changes and people come and go, but no one really puts you on the spot to make decisions that could influence your child’s entire life, and you’re expected to answer in a matter of minutes, because that’s literally all the time you have (generally speaking of course, I am completely aware of how many people this is also not the case for). When you go into preterm labour there are suddenly a great number of ‘studies’ being thrown at you. This is amazing, as it illustrates just how much we are still trying to learn about these wee babies, and it feels incredibly important to be part of research that will hopefully result in better care and better outcomes for children. 

Charlie and Oliver were part of several studies during their hospital stay, some of which still continue for Oliver to this day; looking at what effect added omega-3 has on brain development, and at the developmental effects of protein intravenous nutrition in low birth weight infants.

The one that seemed easy at the time and now seems so incredibly hard is the cord clamping trial, and this is the letter that just arrived in the mail.

At the time I remember thinking (as much as anyone can think when their children are pushing their way into this world four months too early and are in a real hurry to do it) that any study we can be a part of is a good thing, that any way we can help develop the research will be beneficial. I think this comes partly from my medical background and partly from my constant need to do good and be generous??

 We signed up. To be honest, thinking back I don’t even know if William and I even talked about it, it’s a total blur. But we signed up.

It is a good study, fully randomised so both Charlie and Oliver had equal chance of having immediate or delayed cord clamping. I was “lucky”, in so much as you can be lucky when you’re entire world is falling apart, that I did not require a C-section and out they came (that is a story for another day). Charlie; immediately clamped and rushed to resus and intubated. Oliver; 60 second delayed clamping, where he lay, curled up in his little sac on the bed, as everyone hovered around him ready to rush in when that timer went off. Which they did.

And I didn’t think about it again (okay, that’s a lie, but it definitely got pushed away every time thoughts came through, pushed far, far away).

Today I read the letter. 

The preliminary results say that there was no difference between immediate and delayed clamping on the number of babies who survived without major issues to 36 weeks gestation. However, it also said that the study found that delayed clamping might have an impact on the number of babies who do not survive to 36 weeks.

And that is the sentence that throws us right back into it all again.

I know how research works. I know that might means that it just as easily might not. But I have also spent a lot of time thinking about how things might have been different. I know that we will never know the exact reason that Charlie’s brain had such a significant bleed. I know that we were helping future kids. I know that they had an equal chance of both being delayed, or both being clamped. I know all of this. 

But when it’s dark in your heart and the guilt and feelings of failure that you’ve managed to push deep down over time read that sentence they wonder, maybe if he had had delayed clamping, maybe it would have been different.

Maybe Oliver would have someone to play on the see-saw with him, and someone to ride around the block with.
Not a day goes by without one of us thinking we failed our kids, we couldn’t protect them, that it’s our fault.
I know it’s not. Well, I know that it’s not okay to sit and dwell on these thoughts. Maybe something was my fault. But if I let that thought move in I would never open my eyes again, I would bury myself under the house and let the earth swallow me whole. So I know to tell myself it’s not our fault.
I know that the study could have absolutely no evidence of relationship between clamping and IVH. All I’ve read is the letter. I could search for and find the published articles and delve deeply into it, but I’m not going to.
Because when you live every day with a heavy, grey cloud of sadness hanging over you, you try really hard not to look for ways to make it heavier, and greyer and cloudier.
Now I’m sitting here wondering why I even felt the need to tell this story. I guess because other parents will have got the letter this week and I want them to know we get it, we feel it and if this week feels harder than last week, just know you’re not the only one. And maybe so that I can say, even after all of this, all the worry and wonder and heartbreak; I will still sign up to studies. And I hope some of you will too.
Because although Charlie didn’t leave a physical footprint on this earth, he helped some future kids, and that is a legacy in itself. 


Anniversary means cake right??

Tonight I did what we often do, I tucked Mr O into bed and said goodnight and then hastened to clean him up after he threw up all of his dinner all through his bed. I changed his sheets and his pajamas, and then I basically force fed him, so that he would have something in his tummy again, and would be able to sleep without waking hungry. He cried a little after he threw up, then he sat on my lap and took all the food I gave him, without a sound, just swallowed it all and then got into bed again. I sat beside him until he fell asleep and then I rinsed all the linen and clothes and put the washing on. Then I stood in the kitchen and cried for a while. Because cleaning up vomit is misery, and force feeding your kid is awful and because its exhausting when it’s your normal. 
But then I thought about the fact that it’s November and in a couple of weeks it will have been one full entire YEAR since we took out his nasogastric tube. We used to change his linen 4-6x and put through 3 loads of washing every single day. Taking out that tube reduced his vomit significantly the minute we took it out. Things are so, so, so very much better than they were. 

He used to refuse anything and everything orally, he wouldn’t drink milk or water, and we would celebrate the tiniest mouthful. He started with yoghurt, custard and chocolate milk, and we counted the mls and the grams and we eased him slowly onto food he had to chew. He choked and gagged, threw up, refused, and then he chewed and swallowed and asked for food. I vividly remember the day he yelled for water and gulped from a sippy cup (yes, I probably cried). Tonight (pre vomit that is) he ate rice, smoked salmon, cucumber, and tortilla. He sits at the table with us for dinner and he scoops up curry with a spoon, stabs at pasta with a fork and he loves trying to eat corn. True, the majority of his ‘filling’ intake still comes from yoghurt, and true, he’s only just got over 10kg, but he eats on his own and he loves it. That is phenomenal progress. 

I haven’t written anything for a long time because the days this year are just flying by, but I’ve done a lot of reflecting this last week and as we come around to another Christmas (how, how is it November???) I want to tell anyone who is in the middle of misery that there will be improvement. It may not be until next November that you’ll be able to see it. But it will come. 

There will still be more spew in our house and I know we will still worry about food and growth and development. 

It’s just life now. 

But life now is also Mr O yelling “we love it” as he fills his mouth with Greek yoghurt, and me warning him it’ll be quite spicy if he decides to bite into the entire spring onion, and sitting next to him in the sun with a plate full of strawberries knowing he won’t choke on them anymore. 

I want to make him a Tube Wean anniversary cake, any ideas? 

The nightly choice of sleep, or recharge? 

There’s this time at the end of the day. You know the one, where you’ve finally got your kid(s) to bed and you’re so unbelievably bloody tired. You’ve just left their room after rocking/shushing/head stroking/cuddling/reading/whispering to them for the last hour trying to get them to go the hell to sleep. You’ve been awake since 0430 because, you know, that’s ‘morning’ to them for some bizarre reason, even though, being winter it’s darkness is fairly blatantly saying it’s still the middle of the night. You’re done with dinner because these days you basically eat it at afternoon tea time because that’s when the tiny dictator in the house is most hangry. There’s a million things you probably should be doing but in reality you know you won’t so you’ve really just got two options; 1. Go to bed. You know, because sleep. And 2. Don’t go to bed, put the kettle on, make a cup of tea and watch some tv with your significant other/on your own and take one hour to just be free. One of those cups of tea that you can wrap your fingers around and feel the heat, that scalds your throat on the way down because you’re used to cold tea and you gulp it forgetting that it’s just been boiled and you’ve got the time to stop and enjoy it. To watch something mindless on TV without interruption, no one talking at you or hanging onto your leg, or throwing food at you. You’ve spent the last 16 hours playing, feeding, cleaning, and watching your little miracle discover the world and it has been moments of bliss mixed with moments of immense frustration, and it’s finally time to decide. 

Do you catch up on sleep because you know in all reality they will be waking in approximately 2 hours and 37 mins, or do you stay awake and have an hour of your own time. Your own time to recharge before the next 16 hour day of play, and food, of little hands and high pitched squeaky-mostly-cute little voices, of books and parks and counting and head stroking and saying yes and no and no and yes until you’re blue in the face. Your own time, because you know that as soon as you close your eyes you will be opening them again to a little person who consumes your whole being, every breath is for them, and sleep doesn’t feel like a break because it passes at speed without you even knowing. 
I probably should take option 1 more often and catch up on some sleep, I’m sure I’d feel better for it. But I never do. Every night it’s the same, I say “we should go to bed” and then I put the kettle on and take the me time because I know that if I don’t, when the little voice starts again my patience starts off already being depleted from the day before. That hour is my recharge time and I hope I’m a better mum for it. 

What about you, sleep or recharge? 

(They sound like they should be the same thing, but it definitely doesn’t feel like it…).

Mr O does America. (Part 3). 

I’m lying in a van, my two year old asleep next to me, the door open, looking up at the darkening sky in the middle of the magnificent canyons of Utah, USA. 
The trees are dark silhouettes and the sky is an ever changing ombré as the daylight disappears. There are lights shining in the camper across from us, the smell of campfires drifts past and the air is crisp and cool. Everyone is settling in for the night before another day in the heat and dust begins tomorrow.  

It’s hard to describe the heat, or even imagine it now that the air is cool. But it’s hot here. It’s so hot that water doesn’t quench your thirst, and the dust permeates everything, by the end of the day your eyes are red and raw and your skin is coated. But it wouldn’t be as magnificent if it wasn’t so intense. 

We have stared in awe at the shapes and colours that make up Bryce Canyon, descended into the depths of it and zig-zagged our way back out again. We have caught our breath at the absolute scale of Zion National Park, we are nothing when we stand in those canyons, and we are on top of the world when we climb to the top. We have sweated and sweated and sweated. And each night we have driven our little home back to the campsite and cooked a simple dinner and settled in for the night. 

With a toddler. 

Honestly, I lie here now and I can’t even believe we are here, that we have actually been able to do this. 

But we are, we have been free and I am trying to use it to heal. To enter the next year a little less afraid, and a little bit happier.  

Mr O has made us so incredibly proud, he has adapted to daily change like an absolute super star and he has trusted us that everything will be okay. He has slept in so many different beds, and woken up in so many new places, surrounded by strange faces and voices, and he has taken our hands and walked into it with us. I won’t lie, there have been tantrums and meltdowns and screaming, but we understand it. We don’t feel comfortable all the time either, so his world must feel upside down right now (like seriously, we are on the other side of the world?!?). 

Tonight, as we ready ourselves for the final few days of our trip I want to stop and remember this moment. So that next year I can stay home. And be in our home during the hardest month of the year. We have been free, we can be, but I know that it’s for me, and not for him. 

Two birthdays, two completely contrasting towering mountainous terrains. 

Here’s to his third birthday party being at home (someone remind me next year when I start trying to run away again please…). 

Mr O does America (Part 2). 

It’s crazy how a little person can have such an effect on so many big people. We are adults, grown ups, mature and seasoned, yet a little one says your name or reaches out to touch your face and you melt into a million pieces in front of them.  
This is what I have seen over and over as I watch Oliver with all of the friends and family that he has met during this trip. 

He’s always been a watcher, he takes it all in and slowly he warms up and eases himself into a situation. And it’s the same with people. He sits and watches them, listens to them talk and follows the way they move, and over time he edges closer to them, answers a question, or reaches out a hand. And then they are hooked. 

He is who people gravitate towards when they enter the room, he’s the centre even if he’s still and silent. And that’s the amazing thing about children, they bring adults together. They make us stop; to listen, to feel, to appreciate the small things. 

Everyone who has met him this trip now understands the importance of a good stick and a patch of dirt to dig. They see the paint on the road and the lights that are shaped like balloons. Sounds are louder than they ever were and there’s a digger everywhere if you’d only open your eyes and look. 

The love that has been thrown at this child over the last two weeks is impossible to describe. We are lucky, lucky, lucky to be surrounded by such a phenomenal circle of people all over this amazing world. But the problem with this world is that it is expansive, and no one has come up with a teleportation device yet. We had to say goodbye to the ones we love at home so that we could be with the ones we love across the sea. And now we have to say goodbye to them, so that we can make our way home again. It’s unfair and heartbreaking that Oliver can’t be surrounded by all of these people all of the time. I just so hope that some of the love he has soaked up over here will come home with him in a memory. 

We have traveled through Ames, Iowa and Chicago, Illinois and we are now in Denver, Colorado, on our way to Boulder to get into the hills. And this time we have left all family behind and it’s just us. 

Thank you to everyone who has loved our boy, thank you for helping him grow into a world that is kind and warm and so incredibly full of love. 

He will be two years old tomorrow. Thank you for fuelling us on love for the last two years. We are so lucky. 

Mr O does America (Part 1).

Everyone told me “he will sleep”, it’s 12 hours, he won’t be able to stay awake the whole time. Hahahahahahahaaaaaaa. Good one. 
You’re right, he did sleep, by the time I got him properly asleep enough to be placed in the bassinet and stay asleep it felt like literally seconds later that every single light was turned on again as it was “morning” time in aeroplane world. 

One thing I can say about traveling with a toddler, they can and will charm everyone. So as tired, jet-lagged and frustrated as you are, your kid will make everyone melt a little and everything in the world will seem okay again. 

It took us over 24 hours to properly get into the ‘holiday’ zone. Houston was a good idea in that it allowed us to sleep horizontally, swim in the pool and just catch up a little bit, but it wasn’t part of the fun. 

The fun has begun now. New Orleans you beauty!! If you haven’t been, then add it to your bucket list people! It’s like carnival 365 days a year here, the streets are packed with people, tourists and locals alike. The attire; I don’t even know how to describe it, think up an outfit and you’ll see it out on the street here. Feathers and sequins, face paint and masks, dresses, top hats, activewear, togs, tuxedos. All of it and no one blinks an eye. You could grab a drink and sit for hours just people watching. But why sit when you can grab a drink and wander up the street with it. The French Quarter of New Orleans has some of the most relaxed drinking laws you will come across, as in, you can get your cocktail-to-go and just go! Obviously this is from a predominantly observant perspective due to the fact that we are traveling with a two year old and from 1900 hours we are in bed…BUT if being outside in the evening air as the sun sets with your pickled Bloody Mary sounds like you, then this is the place to come (if you come could you bring a babysitter so that maybe we could come out too?).

Mr O has walked steps (a lot of steps!) along the big old Mississippi River, it’s wide and murky and moves swiftly past with barges and steamboats all day long. He has eaten his hot chippies (more calories pleeease!) while waving his hands to the rhythm of the jazz band in the evening hustle and he’s slurped pho through a straw down an alley while trying to (gently) pat an artists dog as it wandered looking for leftovers (and attempting to ‘help’ sell art). 

We are learning the pace at which he travels best, and the ways to manage things when he starts to get tired. Freedom is key. Freedom to walk, to climb, to touch things and move without confinement and rules. It’s not manageable all of the time, but the more we can allow him to guide the trip the happier we all will be. 

I’m going to sign off with three things we have learnt, partly so that we can look back and remember, and partly so that you can learn it too.

1. All people are buried above ground in New Orleans, their cemeteries are beautiful and tall, due to the fact that the majority of the city is below sea level, no one wants their loved ones in the wet mud, which is fair enough! 

2. If you want a beignet from Cafe Du Monde, you better get up at the crack of dawn to get in that line (lesson for tomorrow morning…).

3. Travel ratio= two adults:one toddler. Help is the BEST. Don’t let me forget this okay? 

Post natal depression: please, just be there. 

 I want to start by saying that I understand that not all people feel the same way and that every journey is different; this may not work for everyone, so if you feel that this is absolutely not something that would help you there are some fantastic resources and supports out there, please check them out. (http://www.mothersmatter.co.nz/default.asp). Please don’t travel this road alone.
I haven’t had post natal depression. I do not understand what those women go through, because I havent experienced it. But I have been through something that others cannot understand unless they have experienced it, so I can see that although the journeys are different, they have a number of parallels. So although this is not my story, I want to share it because it is important to me. I want people to know they are not alone. And I hope that someone somewhere will send a quick message to a friend today, just to let them know that they are not alone.

A friend wrote this story about what she found helpful after the birth of her first baby and all I could think as I read it was that we should all strive to be there, for her, for our sisters, friends, mothers and daughters. No one should have to travel that road alone, no one should be left to feel like a failure and no one should ever feel that they can’t ask for help.

She has allowed me to share this with you. These are her words, from one mother to all of us, please just be there.

“After the 20 week scan I didn’t message you back, then you arrived at the house, I was stripping wallpaper in my dress and boots. I told you the baby has a cleft and we need more scans. All you did was give me a hug and said ‘we can deal with this’ and then you stripped the wallpaper with me. You were there.

You came to my midwife appointments. You kept me company, you listened to me cry and all through my anger and sadness and panic. You were there, always.

Then I had him, I think I had already started to cut you off, because I was already on the path to PND, but you stayed, you were always so positive and so there.

We were discharged home and you were there, you’d done the washing and made brownie, you were there.

I rang you in a panic 2 days later, you left a family dinner to come and help us. I had horrific mastitis and you helped massage my breasts to get all the milk out. It was so painful and so personal but you were there.

We went into hospital, and you were there, you texted all the time, I never replied. But you were there.

You came and stayed because I wanted you at the house, and you left notes everywhere, it made me smile and make me think this was all ok.

You came to our 6 week imms, because I was terrified of holding him. You were there.

When I was diagnosed with PND, at about 3 months in, I messaged my two closest people. “I have PND, on Meds, don’t want to talk about it”.

They both offered all the support they could and people to talk to etc. I didn’t want that.

Then I fell apart, I couldn’t feed or touch my beautiful boy- I was throwing up at the thought of having to do it.

You came and fed him. You were there.

When I was so bad that my husband and mother-in-law had to stay at home and look after me, you came and sat with me, literally sat on the couch watching TV while I counted down the minutes till the next Valium.

When he had surgery, you were there, you met us up at the ward, you chattered away and talked to us, I think I was numb and wasn’t really taking anything in, but you were there.

You took me to mothercraft and said it will be ok, and it was. You were there messaging and not caring if I didn’t reply. You were there.

When I thought there was something wrong with his breathing, you came around and decided we were off to the hospital, you came with me and you stayed with me. You were there.

You made sure, if I was anxious about anything, you would try and fix it. I think I decided my eyebrows were in desperate need of attention and plucking, so therefore, I couldn’t go out. So you lay me down and plucked my eyebrows… we went out and even though I found it hard you were there.

I remember going out for dessert one night and I really, really didn’t want to be there. You messaged me that night, to say it was ok and I didn’t have to force myself to do anything with people. You were there.

You were and are always there and you will never know how much that means.”

Sometimes it’s just a text or a call, or a drop and run at the doorstep with groceries, but it tells someone that you are there, and sometimes that is all that they need to get them through the day.

If you need someone, please tell them, do not do this alone. And if you know someone, please be there for them. However you can, just be there. 

Did you know there are no rules about having children?

img_0184I know it might seem shocking, since people seem happy to constantly expect things of you when it comes to children. But there’s actually no rulebook anywhere that says you need to have your first child at a particular age, there’s no list of guidelines that say you need to have a second child when your first child is exactly 18 months and 21 days old, in fact there’s nothing anywhere that says you need to have any children at all, or that you can’t just be happy with one, or that you need to stop at 4.

Yet for some reason we love to ask, and sometimes asking is not enough and we love to give our opinion, which obviously we know everyone really wants to hear (insert eye-roll emoji here…I love that little emoji so much). Oh you’ve been married a while, time for kids? When are you going for number two? You don’t want them to be an only child do you? Hmmm that age gap is too small, oh and that age gap is really big.

What’s wrong with: wow your kid is gorgeous! Or shall I take your kid for five minutes? Or even better, shall I put you up in this expensive hotel for a night and you can sleep all night and I’ll babysit? THESE are the questions we can happily answer!!

As for the others, I don’t speak for everyone but we felt there was no right time to have a baby, so at some point we just threw our hands up and said, may as well be now. There’s always something you haven’t done yet, or a career goal that hasn’t been met, or something that’s tugging for your attention. And we felt that would never change, there would never be a quiet moment where actually nothing else was happening and we had everything absolutely sorted and there was a light flashing “baby time” in front of us. We decided ‘now’ wasn’t an AWFUL time so why not? Whether you plan or you get a surprise, the time never seems ‘right’.

I always wanted to have a big family, I wanted heaps of kids, I love kids!!

And then it took us almost a year to get pregnant, which I know isn’t long compared to many couples, but I thought how do we go through this over and over? How can you wait each month and hope and dream and be disappointed. How can you enjoy the physical act of making a baby if it never gives you what you want, it begins to feel pointless, and that’s scary because it’s something special you have with your partner and nothing should be able to take that away from you, but it does.

And then we got pregnant with twins and life exploded into plans and dreams and joy and excitement before it got smashed into a million heartbreaking pieces and left us in a world where the sun was dark and cold and everyone seemed to be happy but us.

When you lose a child you lose something of yourself. I used to want to be surrounded by my family, piles of children clinging to me and playing all day, now I want to hold the one I have as close to me as possible and never move again. I don’t want to share him and I don’t want him to have to share, because he had a buddy he was going to share his life with and he’s gone. I am filled with fear. It is just under the surface, bubbling, ready to come up, even as I write this I can feel my heart rate increasing. I’m afraid of pain (which seems kinda rational to me, no one wants a bee sting, so why would you pick up a bee? -apiarists excluded of course, crazy folk!). I’m afraid of trying, of the waiting and the hoping and the disappointment, when it feels like you’re surrounded by people who are somehow pregnant the minute their partner walks in the room, seriously HOW?

I’m afraid of being pregnant, because I’ve only ever experienced the disaster of it, and why would I risk that again? I’m afraid of going to that scan and seeing two little blobs again, I CANNOT do that. I actually just can’t. I’m afraid of repeating everything we have just done. I’m afraid of losing again. I’m so afraid of so many things that the possibility of ‘going for number two’ is a complete and utter impossibility to me.

I just. Simply. Cannot.

So when you ask me (if you have to…) and when you tell me that I’ll change my mind in time (not sure why you have to do that…but you do…), well, maybe you’re right, but maybe you’re not, and at the end of the day it’ll be our choice and I’m not apologising for the fact that you have to accept that, because you haven’t lived our reality.

Everyone makes choices in their lives, and they don’t always announce aloud why they make those choices, all they want is people to support them, and love them. With or without kids, with or without siblings, whenever the hell they want. If you want to hang with your partner forever and play with other people’s kids, then do it! If you want to have 5 kids in the next 8 years, get started. If you want to give your 15 year old a sibling this year, go ahead. Whatever way you do family, we’ve got your back.



Surrounded by happiness 

Here we are again, Christmas Eve, how does it come around so fast??

Things are very different in our house this Christmas, the biggest being that tomorrow morning our boy will eat Christmas bread with us for breakfast and he will nibble on pork and potatoes, pie and cake. One month of our new life, our tube free life, and we are getting to know a completely different child. 

The growth is slow, but there is growth. His favourite foods don’t make up a balanced diet, but he has favourite foods, so we don’t care. There is no vomit. What goes in, stays in. 

There is so much goodness. So much happiness. So much freedom. 

Tonight Santa is coming and he’s bringing spoons and a drink bottle and chocolates. A month ago Santa wouldn’t have bothered with all of that. What a waste, he would have said, that child doesn’t eat. 

The other morning I said “hurry up Oliver and eat your toast”, then I sat on the kitchen floor and cried because Oliver was eating toast (with butter and Vegemite, of course!). 

Small things that other people take for granted are huge in our house, and in the houses of so many preemies. On Thursday he learnt to suck from a straw. He’s 19 months old, but having never used a bottle he didn’t have the suck/drink rhythm. Granted it has to be a squeezable container as I need to squeeze the first mouthful for him, but once it starts he’s off (we had a little hand clapping ecstatic party after that first drink). 

So, so many joyous wonderful things that make this Christmas so much happier than the last. I know this is the same for so many families. 

So why do we feel so sad? 

I spoke with a friend recently about this, when things are ‘good’ yet you feel so low, and you feel lower because you feel bad that you are not just happy for all the goodness. 

But then another friend told me that it never stops, it never gets easier, it will always be sad. 

So somehow it feels okay to be sad when you’re surrounded by happiness. 

I’m sad because there’s a Santa stocking missing. Because when Oliver crawls on the floor to his toys he’s going to show them to me, not to his brother. Because when he wakes from his sleep he cries for us instead of chatting to his twin. 

And I’m sad because now that he doesn’t have a tube we don’t talk about Charlie as much. 

Olives tube was a physical, visual trigger for people to ask about his story. It made people stop and look and wonder, and on the days when I felt brave it helped me to tell their story. 

Now, although he is little, Oliver just looks like a kid, same as every other kid. Don’t get me wrong, I’m happy about this, I don’t want him tube fed. But I do want to explain why I miss it. 

I miss having it there to tell me it’s okay that you still want to cry all the time. I miss it telling me that it’s okay that you don’t always feel happy around other kids. I miss it telling me that it’s okay that you don’t go to this or that event. 

And I miss that it started the conversation for me, so that I didn’t have to do it myself. 

It’s up to me now, to make Charlie real and to tell the story of both my children. I don’t think I’m ready yet but I hope that as we roll over into a new year that I will be able to learn to start the conversation myself. 

Until then, I will feed Oliver chocolate yoghurt, light a candle for Charlie and talk to the people who let you be sad when you’re surrounded by happiness. 

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.