13 March 2017

A family portrait with Mr.Men and Little Miss

One thing that I promised myself when we moved to our new house, was that I was going to put up more pictures. We had a few prints up at our old house, but if you can believe it, not one photograph of any of us. Now this is particularly ridiculous considering the sheer amount of photographs I have taken over the last few years, I've made photo albums and books yes, but not printed any out to frame. So I did, they still need putting up, but they are there in frames all the same!

So when I was asked whether I'd like to make a little family portrait of ourselves out of Mr.Men and Little Miss characters I thought this would be a great way of adding to our collection of portraits. Theo also loves the books and we really enjoyed doing this together. He's so proud of our little family and couldn't wait to decide who we should all be.

The making of it couldn't have been simpler, we just headed over to the website, chose our background and got stuck in choosing the characters. We liked the camping background as this is something we enjoy as a family, I let Theo mainly choose who we should be and we had lots of fun! We loved that we could include our pets too as they are as much a part of our family! We then clicked finish and ordered it to be framed and sent out to us. Simple as that!

 This is what it looks like and I think it's such a great addition to our home! It's currently taken up residence in Theo's bedroom and I think it fits in really well and brightens up his shelves.

12 March 2017

eight - eleven / fifty-two

8 / 52 

 9 / 52

10 / 52

  11 / 52

It's hard to know exactly when I took each of these photos as the last few weeks has just disappeared into a blur of hospital and not much else. I had my camera for some of those moments but the strain of being present in hospital and rushing between children becomes too much to record and archive it here.

So here marks the last few weeks, of being in, then getting home from hospital. Healing walks to try and appreciate the right now, rejuvenating afternoons at home playing and of course sweet moments of brother embraces to make all the bits in between more bearable.

I have no idea if I'm up to date, have skipped ahead or am behind in weeks, but that sort of sums up this time really. All over the place and trying to find our feet. 

08 March 2017

A Rohan update: Part One

So it's been a long while, and I guess a lot has happened. I feel like I really want to keep up with the blog but it's just been one thing too many recently and I've found that writing out short updates or thoughts on Instagram have kept my feelings level, but there gets a point when I just need to write it all out.

These past few months have been tough, I was, as always hoping that this new year would be kinder to us, but alas I don't ever think wishful thinking is going to be the answer. In a way I've come to realise I need to just stop torturing myself when thinking that things will be easier, or if our lives were different and comparing my situation to others. I just need to accept the now and that this is the life we are living and I don't really have much control over the bigger things that happen, I just need to make the small changes to make the everyday a little easier. Without sounding like a teenager there is something interesting to remember about trying to live the life you've been given (yolo and all that) because really what else can we do? I'm not going to magically change Rohan's condition, things won't ever just change overnight to how we think they should be and I'm sad to admit that I think things will always be on the harder side for us. Maybe they won't be hard all the time, but for some reason this life has chosen us so I might as well try and make the most of it.

Anyway, that out of the way I guess I should try and record a little of what has been happening over the past few weeks, to try and start processing it all. I don't really feel like I have even began to, sometimes you feel like you're coping and it's all just carrying on like normal, but then something stops you in your tracks and you realise that actually the carrying on part is just a way of staving off really letting yourself feel the weight of what's been happening. But how do you begin that process? I wrote a little about how on Friday I got a sudden urge to have a big cry, to let the events of the last few weeks off my chest a little, where the tension has been held tight for fear I guess of letting it go and it all coming apart. The cry still hasn't happened, the tension is still there but with talking and sharing my feelings it's beginning to ease a little.

So, to carry on with the story and update, Rohan has spent about two and a half weeks in hospital over the last month or so. Just after his birthday in the middle of January I took him to the doctors as he was still not getting over a cold and coughing quite a lot. His weight was dropping due to the coughing and subsequent vomiting that comes with it. He was prescribed some antibiotics and we hoped he get better. He then perhaps caught another cold on top of that, and when we had a our Respiratory review a week or so later he was still suffering. When he was weighed we were so heartbroken to see that he had dropped quite a significant amount of weight and looked visibly skinny. We were given some different antibiotics and what was thought was just blocked upper airways from all the snot. We did mention to our consultant that we were a little worried as it seemed as though his oxygen saturations were dropping lower than usual overnight, but not much more was said on it and we were hoping the antibiotics would help shift things.

A few days later we travelled down to Devon to stay with Rob's grandparents for a little break, but by Saturday it became pretty clear that he wasn't very well. We tried our hardest to carry on like normal, but once we'd put him to bed, he just kept on dropping and staying low with his sats. He looked like he was working pretty hard to breathe too, so I decided enough was enough and he needed to go to A&E. It's scary admitting that you can't give the help your child needs, that you are not enough and knowing that he needs medical help. I was scared about going back to hospital, and I think the trauma and anxiety from when Rohan was first born and our long hospital stay was returning. But I knew we had done the right thing.

We were seen straight away and taken to resus where he had an oxygen mask and seemed to settle a little. He had a high temperature and was still working hard to breathe though. It's difficult going to a new hospital where they don't know him and having to explain his condition to various people. But the team were great and we were eventually moved to the children's ward to stay overnight for observation. By the time we got there it was getting into the early hours of the morning and we were all exhausted. Rohan just wanted to sleep and so did we. We decided that as only one of us could stay that I should drive back to Teignmouth and sleep whilst Rob stayed. The plan was to put him on a machine to help with his breathing, they also tried to put in an IV cannula but couldn't get access at all, so he had to have an IO needle which went into his bone marrow in his leg via a needle being screwed in. I'm so glad I wasn't there to see this happening and I'm not sure I could've handled it. I think it quickly became clear that he needed something else to help him breathe and he was moved to the HDU unit to have CPAP. When I first heard this it filled me with fear, because this is the machine that he was very first put on the night after he was born and remained on for a good week or so in intensive care. It made me worry that it was all happening all over again.

The next morning I returned and was so happy to see that he looked so much more settled. He'd had sleep, fluids and antibiotics and it all seemed to be helping. I think that first day he slept almost constantly. The ward was very quiet and we had lovely nurses and doctors to ourselves, as well as a room so we could both stay. Rohan did really well and recovered quickly and by the next day was off the cpap and didn't require any oxygen. He eagerly wanted milk and was showing signs of his normal happy self once more. It was such a relief. I think he stayed one more night for observation and then he was discharged. It helped ease my anxiety a lot that he could just have such a short stay and quick recovery and then be deemed well enough to go home. We thought we were over the worst of it and that hopefully now we would just take it easy at home.

I had no idea that once we got home we'd be back a week later. I can't believe that we managed a whole year without going in again after Rohan was born, so it all felt surreal but familiar to be there again. Once again we felt split between our two children and of course the anxiety and trauma surrounding Rohan's birth and hospital stay were there just below the surface. But you just have to carry on, you have to make arrangements for childcare and know that you'll miss bedtimes and it breaks your heart to not be all together, but you just do it anyway because what other choice do you have? I feel worried that this may be our future now, trying to avoid hospital stays during the winter and having to go through this all over again. I feel bad for Theo that he has to endure this, that he has no choice and however well he seems to understand it and handle it, I know it's having an effect and coming out in other ways. He still needs us, he misses his brother and I'm sad that this may be a reoccurring thing over the next few years. I'll try not to think about it, but it's always there at the back of my mind.

Part two of the update coming shortly...

13 February 2017

6 & 7 / 52

A portrait of my children, once a week, every week in 2016

So these two weeks have been eventful, a trip to Devon, a stay in hospital, a lost tooth and a different sink to bathe in. It's the start of half term and I think we could all do with a break and a rest. Things rarely go as planned and these few weeks have been a true example of that. I'm hoping that with the passing of the weeks and the arrival of Spring we can start to clear those winter cobwebs, start afresh and embrace the change. 

02 February 2017

5 / 52

A portrait of my children, once a week, every week in 2017

Last week was spent hibernating inside with a sick baby, trying our hardest to keep the feeds down and recover from this latest horrible cold. Theo spent the week building up to his birthday in a state of excitement that may have verged on too much a few times! 

30 January 2017

When your baby is subject to negative comments online

This is a hard post to write, mainly because I never thought that I would have to, so I have no idea really what to say, other than what I feel.

A month or so ago I did a little Instagram campaign for Petits Filous where I had to take a photograph of Rohan eating their new yoghurt and hashtag it to be part of it. I got paid a small amount for doing so, and thought that was it. I don't really do too many paid ads especially on Instagram but was happy to do so. I was happy with the photo. But at the end of last week and over the weekend I've been alerted several times that Rohan's photo had popped up on many people's Facebook feeds as an advert for Petits Filous. I hadn't been made aware that this was going to happen by the company prior to it going live, but since they technically own the rights to it, they are allowed to use it across their social media. I don't actually have a problem with this, as one it's in the small print and two, I like that they have chosen a "real" approach to their campaign rather than a shoot with baby models. The fact that they chose Rohan's photo who doesn't particularly look like your stereotypical model child is also a good thing in my eyes.

My problem is the comments. Now I know all about the "below the line" comments on facebook and I know that they are usually not worth the time to even read, but call me naive, but I in no way ever dreamed that people would have anything negative to say about my baby. Granted a lot of the comments are people jumping on a "they're full of sugar" bandwagon without actually knowing facts, or viewing yoghurts in a everything in moderation stance. But I read on until I found a comment that made my heart stop and my skin prick. And it wasn't the only one.

"He looks unwell"
"He looks allergic"
"Is it me or does he look sad"
"He looks so upset and like he's been forced to eat the yoghurt"
"Why have they forced and distressed him to eat a yoghurt for an ad"

Ah. There are so many things I wanted to say. I replied to one comment and then I stopped myself. I could go and reply to every single comment but would these people even listen? I stayed awake most of the night thinking and going over what I would say to each of these comments, trying to make sense of it all. But I do think I need to address some of the comments here.

Firstly, yes, he was unwell. He is quite often unwell with a cold or runny nose and that all has to do with his genetic condition. Believe me I am aware that my child is unwell. His condition also affects his eyes which mean they are often sticky or wet, especially when he has a cold. If I feel he is suffering more than usual I take him to the doctors, because as I have mentioned recently on my instagram he has been pretty poorly with this most recent cold and he is at a higher risk of catching a chest infection which can be very serious with a child with a heart and respiratory conditions. I am the first to know and react to protect my baby when something is not right. So yes he is unwell, unwell with a cold and in general he is not a 100% healthy baby, something which we have been dealing with since before he was born, and battling every day with all our might to try and make his life comfortable and enjoyable. If you want to know more about what is 'wrong' with Rohan then taking the time to read about him and his genetic condition would be a good place to start.

Whilst I appreciate that many of the comments about him looking like he has a cows milk allergy come from a place of concern or experience, perhaps they weren't put in the most understanding or sensitive way. If my child had a CMPA and I knew about it, then why would I be feeding this to my child? Rohan has been seeing a dietician since he was born, and every gram of food or milk that we feed him is monitored. When we last saw his new dietician a few weeks ago I had to list everything that he regularly eats, which includes the occasional yoghurt. Now Rohan is on a high calorie diet and she encouraged me to add butter, cream, cheese, chocolate and even sugar to his meals in hope that he gains weight. Obviously this is not the normal advice, but his diet is very closely monitored and there is in no way that I would be feeding him something if I knew it would be harming him, much less to then photograph it and put it online. He see's various other healthcare professionals regularly and no one has ever been concerned that he may have a milk allergy. In regards to his eczema, I suffered from it myself as a baby and still do, so it may well have been passed on from me. He also has to wear an oxygen cannula every night which is secured in place by tape across his cheeks which probably irritates his skin (I'd much rather have him a little rash than you know, stop breathing, so it's a side effect worth putting up with.) It's not there all the time and comes and goes according to how well he is feeling too. He's not distressed by it any way.

To the fact that I was forcing him to eat the yoghurt. This is just ludicrous. Why would I force my baby to eat something he doesn't want, and then take a photograph of it? If he doesn't want something he tells and shows, and then I stop. Honestly do people even believe the crap they write sometimes? As regular followers of this blog or my instagram will know Rohan's feeding journey has been a huge battle for us, one which I feel we have done so well with and I was actually very proud of this moment captured. He was NG tube fed for the first six months or so of his life, we started weaning a little later to give him a good chance to be able to do it. We worked so hard to get him to take milk orally and we eventually did it. To know that he wasn't really expected to be able to feed 100% orally but we managed it is a huge huge victory for us. He took to weaning really well too, and whilst he doesn't really manage proper solid food yet, the fact that again he takes all his food orally is massive to us. He also manages to feed himself with the spoon, and really enjoys it. I'm proud of him and I'm proud of us for working so hard. So for someone to say he looks sad and not enjoying the food is a massive hit for me. I dare anyone to try and take a photo of someone eating and look spontaneously happy about it, and see the results. I always try and capture my children naturally without forcing them or telling them how they should look (not that you can tell a baby how they should look!) If Rohan was in any way upset or not enjoying his yoghurt or me taking the photograph then why on earth anyone would think I would just carry on anyway is beyond me. No he wasn't forced to eat it, he was enjoying it. No he hadn't been crying and I hadn't ignored him being upset. No I didn't distress him for the advertisement campaign. He was happy and in no way protested either the yoghurt or the photographs being taken.

That is also another point, anyone who knows Rohan or has spent more than two minutes in his company will know that he is anything but a sad child. In fact the one comment above all that we receive is that he is so happy. He is calm and content and will always give people a true and happy smile. I have so many photographs of him looking happy, and maybe this photograph doesn't show him beaming, but he was happy. This photograph captured his face in about 1/100th of a second, it doesn't capture all of his character, or even his general mood at that time. To me he doesn't look sad or upset (I do believe it or not I know how he looks when he's upset, and it's not like this!) he just looks like he's looking at me and intrigued by the camera, which he often is.

But the real point is, is that I shouldn't having to be even defending these points. Yes I share my children's life online but I never thought that this meant it opened them up to be discussed, criticised or told by people who have no idea of our story or situation that they look or feel a certain way. I have never encountered it before, and I'm not shy of sharing "real life" moments. My feed or blog certainly isn't full of posed, curated whimsical photographs of my children (not that there's anything wrong with that, if that's your thing) it is just of them growing up and our telling our story alongside it. Perhaps that's why I've never had anything negative before, because my pictures are always posted from me, their mother, alongside our story to a community who has followed along for a reason.

Rohan's little face has never been put out there before out of context, without my name along side it, for the whole world to have an opinion on. That's what upset me. The fact that people are so quick to judge, to criticise and comment on a picture of a baby. A baby for goodness sake. To say he looks sad is a direct comment on my parenting. To say he looks unwell is a direct comment on the fact they think I'm doing a bad job. Except they're not saying it to me directly. They are saying it in an open forum where perhaps they think I wouldn't read it. I know for a fact that if I was feeding this yoghurt to Rohan in a cafe, and he had his eczema on his face, a snotty nose and slightly watery eyes that no one would come up to me face to face and say "Excuse me, but I think your child has an allergy to cows milk." Or "Excuse me but your child looks upset and it looks as though you're forcing him to eat that yoghurt that he clearly doesn't want". Or "Excuse me but your child looks unwell and you're doing a terrible job as a mother and you don't know anything about how to raise your child or what's best for him, but I do, a perfect stranger viewing your life for a minute or so".

But somehow this is ok online? No my name wasn't attached to the picture, but it's a baby and that would surely mean that somewhere his mother/father/carer/family member would be aware of this photograph or adverts existence, and would therefore read the comments. Yes some people were trying to help, but was the picture asking for help? Was I posting it asking for a comment on whether it looks as though he has an allergy, and that I was concerned? Was I asking for an opinion on whether he looks happy feeding himself a yoghurt? No I was not. The photo was taken to show my child enjoying, yes ENJOYING, this yoghurt. He was, so I took the photo. I submitted it, they used it in their advert. That is all. No advice needed or asked for.

Is this what is to be expected though, my punishment for sharing my children's lives online? Am I supposed to just shrug and accept that people can say what they want in totally insensitive, judgemental and wholly unhelpful ways? Am I supposed to grow a thick skin, to not feel sick that my child is being discussed in such a way. I am a mother, my main and most important instinct is to protect and that is what I felt. To protect from these people with nothing better to do with their time than hang out on a yoghurt companies facebook page commenting on a little's babies face and trying to justify themselves in the process. The ones who think they're helping but really know nothing and are hiding behind their protective phone or computer screens. What is wrong with people?

Since our journey with Rohan began, before he was even born I used the internet and my small following as a place to go to for support. It became therapeutic to share my thoughts, worries and fears and updates of our journey too. In that time I've been contacted by various people who are following a similar journey and I know it helps us all to share. It's a place where I feel I can speak my thoughts honestly and a place to work through my emotions. If I need advice or help then I ask for it, for me it's the same in real life.

So to those who are concerned about the wellbeing, happiness and whether he has an allergy to dairy, I hope this has cleared things up a little. And to those people may I share with you a little advice before you go and comment on another baby's natural picture (or anyone else's for that matter) :

Is it:
T - True
H - Helpful
I - Inspiring
N - Necessary
K - Kind

Hopefully with this in mind it may eliminate some of those comments that yes, do actually hurt when you read them. Remind yourselves, and your children of this and hopefully the internet can be a slightly (I'm not holding much hope because man, the internet is a mean place sometimes) kinder place to be.

Edit: I just wanted to say a huge heartfelt thank you to each and every one of you that has commented in our defence, to try and highlight some of the reasons and give context to this picture. For all those who can see Rohan's beauty through his snotty nose and rashy face and to Petit Filous for choosing to show a real baby, whatever else he may have going on, doing a normal baby thing. Eating a yoghurt. That's it.

27 January 2017

And then you were six

Six. Actually six. I told him to stop growing the other day because I'm not sure I can really fathom the fact that I'm a mother to a proper child. I'll convince myself every year that this is the last year that he'll really feel like my baby still, but I feel like six is the last. Five was manageable, even though we had started our school journey it was just reception, he still needed me for lots, still retained a little baby roundness to his face. But that's all dropped away, he can read, he can write and he thinks he knows everything all ready.

Of course he still needs me, and there's that innocence still there. There's the belief, magic, wonder and make believe that's at it's peak but will all too quickly start to fade. He has such a curious mind, he wants to know all the facts, is fascinated by patterns and sums and he loves to tell you all that he knows.

This boy though, it's so hard to believe that I started writing this blog here because of the little bean that had started growing inside. All those thoughts and wonderings on how our lives would be once he was here. Then he arrived and changed it all and we spent those five years with just him. I can't believe how lucky I was to spend the majority of those years just being with him, showing him the world. To watch him grow has been a privilege. It's not been easy, and it's still not easy at all, in fact I feel like we're facing big challenges right now but he really is amazing.

I still find it so hard to take in that he's so grown up, to think back to him being just as small as Rohan is now. I long for more time with him when he was little, to step back in time and hold him when he was just a baby, or keep his little hand in mine for a while longer. It's that cruel reality that you wish away the hours in the day but before you know it years have sped by and you can hardly remember what their voice sounded like at that age or how their mannerisms have changed. I know I have all of this to come in one way with Rohan, it might not be the same of course, but I feel a little bit of mourning when I think back to Theo's childhood gone by. I want to do it all again, and yet I know when I was there I would miss this Theo now. But it's tough, five has been hard, but I'm really trying not to wish it away.

I feel bad that five has been difficult, it's been hard on him. He's had to adjust and learn to become a brother. His world of just us three was changed, and changed so dramatically. He had to see his brother, a baby, go through all that he did, experience us not being there properly for two months whilst he adjusted to all that change. He had to learn to share us after so long of it just being him. He's taken to it all so well, he loves his brother with so much adoration and care it makes my heart explode. Then we shook his life up once more and changed his school, we left the place where he's grown up, swapped the city for the countryside. He loves the countryside and being out here, and hopefully in the long run it will all work out, but two big changes in one year is a lot for an emotional five year old. On top of that we've been stressed and stretched thin, perhaps not being as patient as we can with all that we've been through this year ourselves.

But we'll get there. He's doing ok. There's a lot to take in with Theo, slightly different ways of behaving which are challenging and there may be a reason for that somewhere. He's incredibly bright and confident, people all seem to know his name and it just feels like he is open to learning so much. He can pick up computer games just like that, maths is his favourite and he loves making dens. He likes to dance, to build complex lego, to sit a read his beano to himself. He loves animals and learning facts about them. His favourite food is still pizza and filled pasta and we've still convinced him that he doesn't like fizzy drinks. He's not so fond of being kissed anymore, but will occasionally permit you to do so on the cheek and give you one back. He logical and literal, almost too much sometimes. He is kind, he likes to help people out and he loves to be given little tasks and instructions to complete (but that doesn't include getting dressed or putting his shoes on, because I don't think any child can do that when asked first time!). He has funny sayings and ways of speaking that he's picked up, his current favourite being "I'm deadly serious". He currently loves Harry Potter, Lego Nexo Knights, owls, star wars, furbys and angry birds.

But there we are, I'm sure there's a thousand more things about Theo that I could write, but it's hard to remember each individual thing, but they all add up to him. He's unique, not like other kids, and that can be hard, but amazing too. He's Theo and sometimes I can't believe that I've managed to document him growing up on here, but I'm so glad I have. I can't believe we've made it to six, six already! We survived those first five years and I think we've done a pretty good job. Theo you are great. And loved, so very much.

21 January 2017

3 / 52 and 4 / 52

A portrait of my children, once a week, every week in 2017

A double once again, but hopefully I'm all caught up and back on schedule. These past two weeks have flown by, but have seen us take a little trip to the seaside and wonder at the beauty of the beach in winter time. We've mainly just been spending time at home too, which is something to tell the truth I've never been very good at, always needing to be busy and off out somewhere, but for once I feel content to stay at home and just be. That includes enjoying the quiet moments of a bath in the sink, the early morning pink glow on a face peeping through the curtains and a just woken up baby face in bed.

Oh and in the spirit of trying to include ourselves in the frame a little more, here's my favourite sibling, father and mother portraits too.

20 January 2017

A family walk: Clevedon

A crisp winters day in the quiet between Christmas and New year. Rob was back at work, we were all recovering from illness and moving but there was an itch to get out into the sun and explore. We've been to Clevedon many times before, but now we live even closer we didn't want to miss this chance and weather. We strolled along the front with many other people and made our way onto the beach, Rohan sat on the stones whilst we watched Theo leap from one rock to another and throwing pebbles into the pools with a satisfying plop! The sea was as far out as I had ever seen it and we ran down ramp right to the end. The water was so still and calm, the freezing colours of silver, blue and purple all around us.

We then took ourselves to a cafe to warm up with hot chocolate and lunch and Theo got his reward of an ice cream for being so well behaved. It was one of those days where it just worked, we had fun and I felt like a super women. 
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