April and the would be birthday


I've not spoken about this for a long while but suddenly this time of year rolls around, the trees are heavy with blossom, new life is emerging every where we look and whilst it fills me with joy there is also this feeling of sadness for could have beens around this time. It all feels like a cruel trick sometimes.

This was when we were supposed to be meeting our April baby, the one that never made it. I should be remembering that time when I was heavily pregnant, eagerly awaiting the time we'd get to meet our second baby. Would we have celebrated those first few birthdays with little picnics in the park under the heavy blossoms, would we now be celebrating the fourth birthday, soaking up those last few months before they would start school. There are so many unanswered questions and it breaks my heart that we'll never know.

The thing is, there's not much time that goes by where I don't think about that little life and what it could've been, who you might have been and how different it would all look now. Would the sibling relationship be different, would they be able to play together more, would our lives be filled with another boy or would it have been a girl this time. It's such a strange feeling to mourn memories that didn't ever happen but it's that feeling that gets me the most. Like a little window opening up and a glimpse into the future, but like a train whooshing past a station without stopping, those images and views are gone so quickly, that moment lost but yet the journey keeps on going.

I'm not sure whether I'll ever be able to look at April in the same way, whether this date will always hold some significance but it's all we really have left to link us together, me and the would be babe.

April and the would be birthday


I've not spoken about this for a long while but suddenly this time of year rolls around, the trees are heavy with blossom, new life is emerging every where we look and whilst it fills me with joy there is also this feeling of sadness for could have beens around this time. It all feels like a cruel trick sometimes.

This was when we were supposed to be meeting our April baby, the one that never made it. I should be remembering that time when I was heavily pregnant, eagerly awaiting the time we'd get to meet our second baby. Would we have celebrated those first few birthdays with little picnics in the park under the heavy blossoms, would we now be celebrating the fourth birthday, soaking up those last few months before they would start school. There are so many unanswered questions and it breaks my heart that we'll never know.

The thing is, there's not much time that goes by where I don't think about that little life and what it could've been, who you might have been and how different it would all look now. Would the sibling relationship be different, would they be able to play together more, would our lives be filled with another boy or would it have been a girl this time. It's such a strange feeling to mourn memories that didn't ever happen but it's that feeling that gets me the most. Like a little window opening up and a glimpse into the future, but like a train whooshing past a station without stopping, those images and views are gone so quickly, that moment lost but yet the journey keeps on going.

I'm not sure whether I'll ever be able to look at April in the same way, whether this date will always hold some significance but it's all we really have left to link us together, me and the would be babe.

Being faced with late termination choices


This is a post that has been sitting in my drafts for a long while, with only the title written. I've known for a long time that I've wanted to write it, but I've been avoiding it all the while the thoughts and words still swimming round my head.

I'm not even sure how it's going to go, but I feel I need to write it. Maybe I've been urged to by all the things circulating about repealing the 8th amendment and the referendum that has just happened in Ireland (which I 100% am a YES to) so I felt like maybe now was the time. I want to be as honest as possible and state that this is just MY experience, MY feelings at the time and now is in NO-WAY a judgement on what other people have done or may do in the future. It's solely about my life and the choices we made. I would never ever judge any other person from doing differently from myself, because everyone is different, everyone's reasons are different and there will never be a need to justify. It's also a warning that this is a difficult subject to talk about and I'm fully aware that this could be triggering and upsetting for people to read. So please bear that in mind.


So I want to talk about the part of my pregnancy when we found out that there could have been something wrong with our unborn child. As a little history fill in (or you can read about it here) we had our anatomy scan at 20 weeks, but we were told that the baby wasn't in the best position to get all the correct measurements and tick off all the checks, so we had to come back for another. The second scan was about 10 days later and again they were having trouble finding what they needed. I was told this was all very normal. They still couldn't check everything off, especially with the heart, so I was booked into a fetel medicine scan with a doctor. Looking back I now know that they probably already knew that something wasn't quite right, but needed to make sure. At 24 weeks I attended the scan alone, as Rob was with Theo, only to have my world come crashing down.

We were told that the baby had a potential heart condition and it was possible that it was linked to a genetic condition. I was given a brief outline of what this could possibly mean and the words termination were mentioned. I was taken to a little side room, and for anyone who has ever had to be taken into a little side room, you know it's not a place you really want to be. It's where news is broken, worlds are shattered and things are come to terms with. The plan was to have more in depth scans of the heart and I was offered amniocentesis. I think at some point an appointment was made and a week or so later we had the test done. All the while this baby growing inside of me was moving around, growing and filling me with such equal measures of joy and fear. I was growing attached but we had no idea what was ahead of us. The amnio was traumatic, and was the first proper time where I couldn't look at my baby inside of me and I was starting to try and steel myself to make the hardest decision of my life.

I remember them running through the options as technically our time was running out if we decided for whatever reason to terminate the baby. I was 24/5 weeks which is usually the cut off. At this point we still didn't know whether our baby would be able to survive outside once it had been born, if we were to go to term. We still had to wait to results. All I remember thinking was how are we ever going to make the decision, both lead to utter heartbreak, to a place where our lives will be changed forever, to a life we never thought we'd have, to potential scenes and images that would never leave you. It wasn't fair, it isn't fair that this has to happen to people. I remember asking the nurse, in that little side room, what would happen if we did decide to terminate. She told me in the best way possible that I would have my labour started for me, I would go through it like a normal birth, I would deliver my baby. The baby would be small of course, but formed. I asked whether the baby would still be alive, and she answered yes, but they would give an injection to painlessly stop the babies heart.

I don't remember exactly what happened next, but my face felt hot, tears rolled down my cheeks and I tried desperately to imagine and to block out at the same time how it would feel to be in that moment. What would I do. Would I be able to look at my baby who I decided would be too hard to continue with. Would I hold the baby, would their image be burned into my memory forever. Would we name the baby, or would it be less painful to not, to not know what they looked like, who they could've been. I didn't know whether I had strength for that. To always have it in my head that what could have been. If we knew that the baby would never survive, or have a desperately limited life and existence then maybe the choice would've been easier. We would be making the decision that would be best for that baby. But what if the baby would just be different, have different needs but their quality of life would be similar to our own. But how would that effect our lives, the life of our other child. There were so so many questions and thoughts that it just seemed impossible to ever be able to make that call, to decide one way or the other. Both would be heartbreaking.

But it seemed as though we were saved from making it, as not long after we were told the results from the amnio, and it all looked clear. We were told over the phone, but I don't remember hearing the bit about it not being able to pick up individual changes to genes. Which is of course what Rohan had.

We went through the rest of the pregnancy still in shock, upset and worried for the future, but we thought that the baby would be fine. We thought that he would have a heart condition which they could operate on, and his feet would need fixing, but apart from that (which actually is enough on it's own) we thought that everything else was fine. We dodged having to make the hardest choice of our lives. But then Rohan was born and it was quickly apparent that there was in fact other things wrong with him. A life we thought we had been spared suddenly opened out again before us, but now there was no choice. He was here, he was fighting and we were trying our hardest to keep it all together whilst our worlds were shattered once more.

I'm going to be honest and say that there isn't really a day that goes by where I don't think "what if". What if we'd known he would have this condition back when we could have still made a decision. What if we had been made to make the decision and decided to terminate. What if none of this had happened to us at all and we had a completely normal pregnancy and healthy baby. Would all of it still equate to Rohan? Would the baby we had to make the decision on be Rohan? Would the baby we could potentially be living without, but still carry in our hearts be Rohan? Would the healthy baby be Rohan? Or is he him because of all of this?

I look at my boy and feel terrible down to the core that I could even think these thoughts. But I know that there is justification in them. Would we have chosen this life if we knew how it would be? But we can't go back in time, we can't change what happened, and for whatever reason Rohan is here with us, being the brilliant boy he is. Our lives are so different to what we thought they would be, life is hard, but all these things led up to this point of him being here and we are just trying our hardest to make the best of it. He was given to us for a reason, things worked out this way for a reason. Just like they would have if it had gone the other way.

Going back to the referendum and thinking we faced all of this with a choice, is something we didn't even think about. To take something like that for granted, that had we needed it or wanted it, we could have chosen to safely, legally end the pregnancy, without shame and in our own country. For us, in the end we didn't have to make that choice, but it was there. I'm so thankful that it was, and I'm so thankful that it now is possible for the women of Ireland too.

"It's also a day when we say no more. No more to doctors telling their patients there's nothing can be done for them in their own country, no more lonely journeys across the Irish Sea, no more stigma as the veil of secrecy is lifted and no more isolation as the burden of shame is gone." - Leo Varadkar

I hope that by me sharing a little of my experience has been ok. I will always remember the look of that little side room. I still have the image of the terrifying amnio etched in my memory. I still remember walking through those few weeks in such pain and conflict. I remember feeling like I would never survive either of the options laid out before us. There is still a lot of pain, a lot of buried feelings that might not ever be resolved around this subject, and this really just scratching the surface. But I'm glad to be able to start talking about it, on here, my safe space.

I just wanted to add that this subject is so tricky. I can honestly say I don't know what decision we would've made if we knew everything before hand and had to make a decision, but because we thought that the baby would survive and have a good quality of life we continued. That's not to say that I don't think babies or humans with disabilities don't deserve to be born, it's just whether the people bringing them into this world can provide all that they can for that person, whether that be material, emotional and environmental. I know that these decisions are NEVER made lightly, whichever way you go, and I also know that the what ifs will always be there for either side. I can't stand from one side or the other because I feel like we didn't actually have to make the decision, and I hope with all my heart that anyone reading this doesn't feel like I've made them feel bad for whatever decision they may have had to make. No-one wants to be there, but for some of us this is what we face. I just also wanted to add that had we known what was to come, and we had to make a choice, I still don't know what we would've done, but I know that Rohan is here, and we love him with all our hearts.



Being faced with late termination choices


This is a post that has been sitting in my drafts for a long while, with only the title written. I've known for a long time that I've wanted to write it, but I've been avoiding it all the while the thoughts and words still swimming round my head.

I'm not even sure how it's going to go, but I feel I need to write it. Maybe I've been urged to by all the things circulating about repealing the 8th amendment and the referendum that has just happened in Ireland (which I 100% am a YES to) so I felt like maybe now was the time. I want to be as honest as possible and state that this is just MY experience, MY feelings at the time and now is in NO-WAY a judgement on what other people have done or may do in the future. It's solely about my life and the choices we made. I would never ever judge any other person from doing differently from myself, because everyone is different, everyone's reasons are different and there will never be a need to justify. It's also a warning that this is a difficult subject to talk about and I'm fully aware that this could be triggering and upsetting for people to read. So please bear that in mind.


So I want to talk about the part of my pregnancy when we found out that there could have been something wrong with our unborn child. As a little history fill in (or you can read about it here) we had our anatomy scan at 20 weeks, but we were told that the baby wasn't in the best position to get all the correct measurements and tick off all the checks, so we had to come back for another. The second scan was about 10 days later and again they were having trouble finding what they needed. I was told this was all very normal. They still couldn't check everything off, especially with the heart, so I was booked into a fetel medicine scan with a doctor. Looking back I now know that they probably already knew that something wasn't quite right, but needed to make sure. At 24 weeks I attended the scan alone, as Rob was with Theo, only to have my world come crashing down.

We were told that the baby had a potential heart condition and it was possible that it was linked to a genetic condition. I was given a brief outline of what this could possibly mean and the words termination were mentioned. I was taken to a little side room, and for anyone who has ever had to be taken into a little side room, you know it's not a place you really want to be. It's where news is broken, worlds are shattered and things are come to terms with. The plan was to have more in depth scans of the heart and I was offered amniocentesis. I think at some point an appointment was made and a week or so later we had the test done. All the while this baby growing inside of me was moving around, growing and filling me with such equal measures of joy and fear. I was growing attached but we had no idea what was ahead of us. The amnio was traumatic, and was the first proper time where I couldn't look at my baby inside of me and I was starting to try and steel myself to make the hardest decision of my life.

I remember them running through the options as technically our time was running out if we decided for whatever reason to terminate the baby. I was 24/5 weeks which is usually the cut off. At this point we still didn't know whether our baby would be able to survive outside once it had been born, if we were to go to term. We still had to wait to results. All I remember thinking was how are we ever going to make the decision, both lead to utter heartbreak, to a place where our lives will be changed forever, to a life we never thought we'd have, to potential scenes and images that would never leave you. It wasn't fair, it isn't fair that this has to happen to people. I remember asking the nurse, in that little side room, what would happen if we did decide to terminate. She told me in the best way possible that I would have my labour started for me, I would go through it like a normal birth, I would deliver my baby. The baby would be small of course, but formed. I asked whether the baby would still be alive, and she answered yes, but they would give an injection to painlessly stop the babies heart.

I don't remember exactly what happened next, but my face felt hot, tears rolled down my cheeks and I tried desperately to imagine and to block out at the same time how it would feel to be in that moment. What would I do. Would I be able to look at my baby who I decided would be too hard to continue with. Would I hold the baby, would their image be burned into my memory forever. Would we name the baby, or would it be less painful to not, to not know what they looked like, who they could've been. I didn't know whether I had strength for that. To always have it in my head that what could have been. If we knew that the baby would never survive, or have a desperately limited life and existence then maybe the choice would've been easier. We would be making the decision that would be best for that baby. But what if the baby would just be different, have different needs but their quality of life would be similar to our own. But how would that effect our lives, the life of our other child. There were so so many questions and thoughts that it just seemed impossible to ever be able to make that call, to decide one way or the other. Both would be heartbreaking.

But it seemed as though we were saved from making it, as not long after we were told the results from the amnio, and it all looked clear. We were told over the phone, but I don't remember hearing the bit about it not being able to pick up individual changes to genes. Which is of course what Rohan had.

We went through the rest of the pregnancy still in shock, upset and worried for the future, but we thought that the baby would be fine. We thought that he would have a heart condition which they could operate on, and his feet would need fixing, but apart from that (which actually is enough on it's own) we thought that everything else was fine. We dodged having to make the hardest choice of our lives. But then Rohan was born and it was quickly apparent that there was in fact other things wrong with him. A life we thought we had been spared suddenly opened out again before us, but now there was no choice. He was here, he was fighting and we were trying our hardest to keep it all together whilst our worlds were shattered once more.

I'm going to be honest and say that there isn't really a day that goes by where I don't think "what if". What if we'd known he would have this condition back when we could have still made a decision. What if we had been made to make the decision and decided to terminate. What if none of this had happened to us at all and we had a completely normal pregnancy and healthy baby. Would all of it still equate to Rohan? Would the baby we had to make the decision on be Rohan? Would the baby we could potentially be living without, but still carry in our hearts be Rohan? Would the healthy baby be Rohan? Or is he him because of all of this?

I look at my boy and feel terrible down to the core that I could even think these thoughts. But I know that there is justification in them. Would we have chosen this life if we knew how it would be? But we can't go back in time, we can't change what happened, and for whatever reason Rohan is here with us, being the brilliant boy he is. Our lives are so different to what we thought they would be, life is hard, but all these things led up to this point of him being here and we are just trying our hardest to make the best of it. He was given to us for a reason, things worked out this way for a reason. Just like they would have if it had gone the other way.

Going back to the referendum and thinking we faced all of this with a choice, is something we didn't even think about. To take something like that for granted, that had we needed it or wanted it, we could have chosen to safely, legally end the pregnancy, without shame and in our own country. For us, in the end we didn't have to make that choice, but it was there. I'm so thankful that it was, and I'm so thankful that it now is possible for the women of Ireland too.

"It's also a day when we say no more. No more to doctors telling their patients there's nothing can be done for them in their own country, no more lonely journeys across the Irish Sea, no more stigma as the veil of secrecy is lifted and no more isolation as the burden of shame is gone." - Leo Varadkar

I hope that by me sharing a little of my experience has been ok. I will always remember the look of that little side room. I still have the image of the terrifying amnio etched in my memory. I still remember walking through those few weeks in such pain and conflict. I remember feeling like I would never survive either of the options laid out before us. There is still a lot of pain, a lot of buried feelings that might not ever be resolved around this subject, and this really just scratching the surface. But I'm glad to be able to start talking about it, on here, my safe space.

I just wanted to add that this subject is so tricky. I can honestly say I don't know what decision we would've made if we knew everything before hand and had to make a decision, but because we thought that the baby would survive and have a good quality of life we continued. That's not to say that I don't think babies or humans with disabilities don't deserve to be born, it's just whether the people bringing them into this world can provide all that they can for that person, whether that be material, emotional and environmental. I know that these decisions are NEVER made lightly, whichever way you go, and I also know that the what ifs will always be there for either side. I can't stand from one side or the other because I feel like we didn't actually have to make the decision, and I hope with all my heart that anyone reading this doesn't feel like I've made them feel bad for whatever decision they may have had to make. No-one wants to be there, but for some of us this is what we face. I just also wanted to add that had we known what was to come, and we had to make a choice, I still don't know what we would've done, but I know that Rohan is here, and we love him with all our hearts.



What is love?


Seeing as it's Valentines day, (something that we don't really actually celebrate!) I thought I'd write a little about my own little love story.

It's not wildly romantic, it's not particularly full of fireworks, or exotic trips or holidays, or grand gestures or extravagance. What it is, is safe, comforting and reliable. It's your best friend being by your side.

When Rob and I met, on one drunken winters night in the local club in Newport (see bursting with romance!) things didn't explode straight away. In fact it took a few months of awkwardly bumping into each other and hanging out a little more before we finally realised that hey actually you're really pretty great. We went on a few actual dates (something that I've not ever really done!) and it just grew from there, but once it got going then it just felt right, like everything had slotted into place and this was all it was meant to be. We travelled around Wales in my little car, him helping me on photography shoots, finding wild swimming places, trips to a&e with broken noses etc. We went on dates, we hung out, he visited me at work and sat in the old man pub to keep me company. It all just felt right, and overwhelmingly comfortable. It's like as soon as we found each other I just breathed a huge sigh of relief, like my days of heartbreak were over and that this was it. I'd managed to find what I'd been looking for.

Then a few short months after that there was a big explosion, when we found out I was pregnant. It wasn't ideal, of course, both of us were just coming to the end of our degrees, had no jobs or places to live. We were young (me 22 and him 20) but somehow or other after so much talking and deliberating we decided that actually maybe, just maybe we could make a go of it. To be a family. Writing that down seems crazy, to look back from the other side and see how young we were, how little we knew what our lives would be like. But even though it's not what we planned we made it work, and we've been making it work ever since.


I'm so incredibly proud of what we've achieved as a couple and a family. I often wonder what things would have been like had we not got pregnant, where our lives would be now, but there's not much point is there? We're here because we chose to be here.

We've had some amazing times, got married, have lived in seven different houses together and of course welcomed two children into the world. We bicker and argue like the best old married couples around, I probably don't show my love or affection very often, we're always tired, there are so many things that frustrate me daily (and vice versa I'm sure!) but we are here, together, and we are strong.


Through all the things that have happened to us; being young parents, job changes, moving house, the miscarriage, then Rohan there has always been us. To know that even in the saddest, hardest moments that there is someone else who feels the same as you do, who is in the exact same boat, by your side experiencing it all too, makes it all ok. That's why I don't need any of the other things, because I know that when things are tough (and man have they been tough) that we are strong. That we can overcome so many things that have been thrown at us and we can survive and persevere. That we can still make each other laugh at the end of the day. We can still cuddle and make up after big arguments, that we can rely on that person to be there, holding my hand in hospital. To adapt and grow with all the changes and still carry on the journey together.


So we may not have had all the time in our twenties to live our lives just as us, things are hard, but we have each other and that is enough. Oh and our mutual love of pizza, that helps.


What is love?


Seeing as it's Valentines day, (something that we don't really actually celebrate!) I thought I'd write a little about my own little love story.

It's not wildly romantic, it's not particularly full of fireworks, or exotic trips or holidays, or grand gestures or extravagance. What it is, is safe, comforting and reliable. It's your best friend being by your side.

When Rob and I met, on one drunken winters night in the local club in Newport (see bursting with romance!) things didn't explode straight away. In fact it took a few months of awkwardly bumping into each other and hanging out a little more before we finally realised that hey actually you're really pretty great. We went on a few actual dates (something that I've not ever really done!) and it just grew from there, but once it got going then it just felt right, like everything had slotted into place and this was all it was meant to be. We travelled around Wales in my little car, him helping me on photography shoots, finding wild swimming places, trips to a&e with broken noses etc. We went on dates, we hung out, he visited me at work and sat in the old man pub to keep me company. It all just felt right, and overwhelmingly comfortable. It's like as soon as we found each other I just breathed a huge sigh of relief, like my days of heartbreak were over and that this was it. I'd managed to find what I'd been looking for.

Then a few short months after that there was a big explosion, when we found out I was pregnant. It wasn't ideal, of course, both of us were just coming to the end of our degrees, had no jobs or places to live. We were young (me 22 and him 20) but somehow or other after so much talking and deliberating we decided that actually maybe, just maybe we could make a go of it. To be a family. Writing that down seems crazy, to look back from the other side and see how young we were, how little we knew what our lives would be like. But even though it's not what we planned we made it work, and we've been making it work ever since.


I'm so incredibly proud of what we've achieved as a couple and a family. I often wonder what things would have been like had we not got pregnant, where our lives would be now, but there's not much point is there? We're here because we chose to be here.

We've had some amazing times, got married, have lived in seven different houses together and of course welcomed two children into the world. We bicker and argue like the best old married couples around, I probably don't show my love or affection very often, we're always tired, there are so many things that frustrate me daily (and vice versa I'm sure!) but we are here, together, and we are strong.


Through all the things that have happened to us; being young parents, job changes, moving house, the miscarriage, then Rohan there has always been us. To know that even in the saddest, hardest moments that there is someone else who feels the same as you do, who is in the exact same boat, by your side experiencing it all too, makes it all ok. That's why I don't need any of the other things, because I know that when things are tough (and man have they been tough) that we are strong. That we can overcome so many things that have been thrown at us and we can survive and persevere. That we can still make each other laugh at the end of the day. We can still cuddle and make up after big arguments, that we can rely on that person to be there, holding my hand in hospital. To adapt and grow with all the changes and still carry on the journey together.


So we may not have had all the time in our twenties to live our lives just as us, things are hard, but we have each other and that is enough. Oh and our mutual love of pizza, that helps.


Rohan at 18 months


So we've reached 18 months of Rowieness. It's that age old quandary of not quite believing it's been a year and a half already, but at the same time how has he not always been here with us? This little boy with more sparkle and joy than a unicorns toenail, and that's saying something.

I thought that I might manage to squeeze in a little update, to try and record the way he is now. I know that it's been so quiet over here recently, but I so want to try and capture this moment in time and record all that we love about this special little boy.

Things are obviously still so different to how we thought they would be, in fact I just went back to look at some old post's of when Theo was a similar age, and how different it was. He was hurtling towards toddlerhood, whilst Rohan is very much still a baby. But compared to the beginning of the year, these past few months have just been so much better. Looking back at photos it's so hard to believe he got as poorly as he did. I guess because it was a gradual thing, him just getting hit by cold after cold slowly wearing him down. Of course I feel so guilty that perhaps we should have got help sooner, but when it's your everyday sometimes it's hard to take a step back and really see that it's not quite right. So after a shaky start to his first year on this planet, I feel like he's finally doing ok.

Last month he finally had his PDA closure, third time lucky and all went really well. He recovered quickly, and as it was only keyhole we were home by the next morning. We've not had a follow up yet but when we do it will be interesting to see how its effected the function of the heart, but so far so good. He has been hit with another cold it seems, as he's been pretty snotty once more, but fingers crossed it seems to be on its way out now. He's been cutting teeth for what seems like months too, with four at the bottom and now two making an appearance at the top.


In terms of development we're still working on the whole moving thing. His sitting has improved dramatically and we've been practising our physio daily making him more balanced and in positions where he can try and move. Whenever I have him on my lap he's wriggling and lunges or scoots his little bottom to try and get to something, so eager to move. But when you put him on the floor he's more than happy to just sit. He can roll over and over now, each way so gets himself about in that way, and is getting so much better at propping himself up on his front and supporting himself and using his arms to play. I feel like we're (hopefully!) on the brink of some sort of movement, but at the moment he just seems to get so tired when we try our physio. I think it's because his little muscles have to work twice as hard as normal (due to hypertonia and mobility) and all those normal movements just take it out of him. But nevertheless we will persevere and get there one day! I'm just happy that he seems so much more interested in his surroundings and toys. He loves picking toys up, turning them over, passing them between his hands, taking things in and out of baskets, banging toys especially his glockenspiel and anything that makes noise. He loves a good maraca and whenever he shakes it he turns to look at you to see if you're dancing. This boy also LOVES praise, so whenever he does something well we somewhat over enthusiastically say 'yey, well done!' and his little face breaks out in a massive smile.

He's getting better at communicating what he wants and doesn't want, as well as being interested in other people and children. He shakes his head, pushes things away and throws things if he doesn't want them, and will lunge and reach and grab for the things he does. He's getting better at choosing options, but more often than not the toys will end up being chucked on the floor, and he'll have a little look to see where they've gone! He makes gurgling sounds pretty much all of the time, he sounds like a little cooing dove and we ALWAYS get comments whenever we're out and about. People generally think it's a sweet noise and comment on how happy he sounds, and whilst I do love it, it is constant. It also reminds me that the noise isn't completely normal and am pretty aware that by now Theo was starting to say a few words and Rohan is nowhere near and we're not even sure how much speech he will have. It's just one of those things that we have to daily go through, and whilst the comments are always positive and it's lovely that people are so interested, I feel like I'm constantly putting on a bit of a fake smile as I guess it's still a bit of a sore point. But we'll get there.


He does love other people and children though, Theo of course being his favourite. He loves to just sit and watch Theo run around, and he loves a good bit of slapstick. If anyone is doing falling, jumping, bouncing etc he will sit in fits of giggles watching them. It really is the sweetest thing! If there are other babies near to him he will learn and reach over to them and try and grab them. I'm trying really hard to make sure he's being a bit more gentle as he is very much in the grabbing and pinching stage and it actually really hurts! (I can't really wear my hair down at the moment as it's just too painful when he pulls!) He's also obsessed with glasses and anyone who wears them  as he likes to pull them off! He's just learnt how to give kisses though, and now whenever I pick him up I'm met with a big open mouth slobber on the cheek or lips. He likes to grab your head and pull you in too and its very cute. I love that he wants to show his affection! He's also a very good cuddler and will properly snuggle his head into your shoulder when you're carrying him. He likes to reach out to other people too and have them give him a cuddle. This boy is affectionate.

I just love how much more he's interacting with everyone and everything. He is obsessed with cups, glasses and bottles of water. If he spots one on the table then he'll lunge and try and grab it, so much so that he can now manage his own open cup really well and has great control when lifting it and tipping it the right amount. He still manages to dribble lots of it down his front but is so much better at drinking it and controlling it when he puts it down too. He can feed himself well too, but I think I might have to save feeding for a whole other post, as there's a lot to say.

So there we are, our little Rohan. I think it's easy to say that without a doubt the number one thing that gets commented on is how happy he is. He gives everyone winning smiles and is usually pretty contented, if not getting slightly frustrated that he can't move!

Happy 18 months Rowington, you are very loved.

Rohan at 18 months


So we've reached 18 months of Rowieness. It's that age old quandary of not quite believing it's been a year and a half already, but at the same time how has he not always been here with us? This little boy with more sparkle and joy than a unicorns toenail, and that's saying something.

I thought that I might manage to squeeze in a little update, to try and record the way he is now. I know that it's been so quiet over here recently, but I so want to try and capture this moment in time and record all that we love about this special little boy.

Things are obviously still so different to how we thought they would be, in fact I just went back to look at some old post's of when Theo was a similar age, and how different it was. He was hurtling towards toddlerhood, whilst Rohan is very much still a baby. But compared to the beginning of the year, these past few months have just been so much better. Looking back at photos it's so hard to believe he got as poorly as he did. I guess because it was a gradual thing, him just getting hit by cold after cold slowly wearing him down. Of course I feel so guilty that perhaps we should have got help sooner, but when it's your everyday sometimes it's hard to take a step back and really see that it's not quite right. So after a shaky start to his first year on this planet, I feel like he's finally doing ok.

Last month he finally had his PDA closure, third time lucky and all went really well. He recovered quickly, and as it was only keyhole we were home by the next morning. We've not had a follow up yet but when we do it will be interesting to see how its effected the function of the heart, but so far so good. He has been hit with another cold it seems, as he's been pretty snotty once more, but fingers crossed it seems to be on its way out now. He's been cutting teeth for what seems like months too, with four at the bottom and now two making an appearance at the top.


In terms of development we're still working on the whole moving thing. His sitting has improved dramatically and we've been practising our physio daily making him more balanced and in positions where he can try and move. Whenever I have him on my lap he's wriggling and lunges or scoots his little bottom to try and get to something, so eager to move. But when you put him on the floor he's more than happy to just sit. He can roll over and over now, each way so gets himself about in that way, and is getting so much better at propping himself up on his front and supporting himself and using his arms to play. I feel like we're (hopefully!) on the brink of some sort of movement, but at the moment he just seems to get so tired when we try our physio. I think it's because his little muscles have to work twice as hard as normal (due to hypertonia and mobility) and all those normal movements just take it out of him. But nevertheless we will persevere and get there one day! I'm just happy that he seems so much more interested in his surroundings and toys. He loves picking toys up, turning them over, passing them between his hands, taking things in and out of baskets, banging toys especially his glockenspiel and anything that makes noise. He loves a good maraca and whenever he shakes it he turns to look at you to see if you're dancing. This boy also LOVES praise, so whenever he does something well we somewhat over enthusiastically say 'yey, well done!' and his little face breaks out in a massive smile.

He's getting better at communicating what he wants and doesn't want, as well as being interested in other people and children. He shakes his head, pushes things away and throws things if he doesn't want them, and will lunge and reach and grab for the things he does. He's getting better at choosing options, but more often than not the toys will end up being chucked on the floor, and he'll have a little look to see where they've gone! He makes gurgling sounds pretty much all of the time, he sounds like a little cooing dove and we ALWAYS get comments whenever we're out and about. People generally think it's a sweet noise and comment on how happy he sounds, and whilst I do love it, it is constant. It also reminds me that the noise isn't completely normal and am pretty aware that by now Theo was starting to say a few words and Rohan is nowhere near and we're not even sure how much speech he will have. It's just one of those things that we have to daily go through, and whilst the comments are always positive and it's lovely that people are so interested, I feel like I'm constantly putting on a bit of a fake smile as I guess it's still a bit of a sore point. But we'll get there.


He does love other people and children though, Theo of course being his favourite. He loves to just sit and watch Theo run around, and he loves a good bit of slapstick. If anyone is doing falling, jumping, bouncing etc he will sit in fits of giggles watching them. It really is the sweetest thing! If there are other babies near to him he will learn and reach over to them and try and grab them. I'm trying really hard to make sure he's being a bit more gentle as he is very much in the grabbing and pinching stage and it actually really hurts! (I can't really wear my hair down at the moment as it's just too painful when he pulls!) He's also obsessed with glasses and anyone who wears them  as he likes to pull them off! He's just learnt how to give kisses though, and now whenever I pick him up I'm met with a big open mouth slobber on the cheek or lips. He likes to grab your head and pull you in too and its very cute. I love that he wants to show his affection! He's also a very good cuddler and will properly snuggle his head into your shoulder when you're carrying him. He likes to reach out to other people too and have them give him a cuddle. This boy is affectionate.

I just love how much more he's interacting with everyone and everything. He is obsessed with cups, glasses and bottles of water. If he spots one on the table then he'll lunge and try and grab it, so much so that he can now manage his own open cup really well and has great control when lifting it and tipping it the right amount. He still manages to dribble lots of it down his front but is so much better at drinking it and controlling it when he puts it down too. He can feed himself well too, but I think I might have to save feeding for a whole other post, as there's a lot to say.

So there we are, our little Rohan. I think it's easy to say that without a doubt the number one thing that gets commented on is how happy he is. He gives everyone winning smiles and is usually pretty contented, if not getting slightly frustrated that he can't move!

Happy 18 months Rowington, you are very loved.

Living with developmental delay


I thought it was probably time for a Rohan update, but I wanted to talk a little bit about how our lives are, surrounding his developmental delay.

I've spoken before about how we know that this is part of his syndrome, but most of the time I try not and focus on it and compare to where he "should" be, but in fact try and focus on what he can do and how he is developing in his own way and in his own time. Which is fine, like most aspects of his care and about him, at home when we're in our bubble, but stepping outside of that comfort zone is hard.

I don't even have to actually step outside of my home to feel the pangs of jealously and comparison, all I have to do is have a quick scroll through my social media to see babies born around a similar time to Rohan, walking around, saying their first words and generally becoming full blown toddlers. There are even babies born way after Rohan who are now further ahead in development than he is. I know I shouldn't let it, but it hurts me. I'm not saying that the parents of these children shouldn't share their milestones and everyday goings on, they have every right, but it still doesn't stop the feeling of unfairness. That old emotion coming back to get me.

I know that all children develop in different ways, and that hopefully he will walk and talk (but the fact that we even have to say hopefully, when normally you don't even think about the fact they might not be able to) eventually, and some may even look at Rohan's development and compare that to their own children, it's natural I think, but it's not really talked about. It's hard to admit that he's behind, or that there's something causing these delays. All leading back to the fact he's different, things are harder and not straightforward.

So here we are, he's now 16 months but still around the age of 7-8 months developmentally. He has low muscle tone which means his body has to work so much harder to support itself. I actually forget how old he is often because when people ask his age I just give a vague answer of "just over a year" when I don't feel like going into it, or there's not really time. I'm not sure how long I can keep this up for to be honest, but I've still not perfected our story or how much to say and when. I don't really mind telling people, it's just I feel awkward. He does still look babyish to me, but his face is starting to show different, more grown up features so it's going to become obvious soon that he's not really only one.

For complete openess here is what he can do. He can roll back to front, and sometimes front to back (unless he gets his arm stuck). He can stay sitting for long periods of time, but we have to put him in sitting position, his legs are usually straight and pretty rigid, and he spends a lot of this time counter balancing himself. He can use both his arms to play in this position though, and will use a good pincer grip and transfer items between his hands. He's started to learn that he can drop and throw objects, and will look for them after he's dropped them. He uses his arms to communicate a lot of the time what he wants, by reaching, gesturing and lunging. He can pick objects up and move them aside to get to what he wants. He's starting to weight bear more whereas before if you tried to stand him up his legs would just go up. When he's on his front he can prop himself up on his elbows and use his hands to play, he likes to open flaps and turn pages in books. He can feed himself with his bottle and now his sippy cup, he also likes to use other objects such as his stacking cups to 'drink' out of. He likes to make our hands clap together, but hasn't worked out how to clap his own, even though recently I've seen movements that look like the start of it and waving.

We've been having weekly play and physio sessions where we are working on the transition between sitting and lying, and back again. He's doing pretty well at turning himself from sitting with his legs straight, to side sitting, with his legs bent to the side which then can lead to him kneeling, and supporting himself with his arms. He's struggling a little bit with the other way, which is to get up from side lying and push himself up with his arms. The thing is, is I can't remember the "normal" way of doing this. I can't remember how Theo got himself into sitting, then to lying and then to crawling. It's like it all happened too fast, but Rohan is in slow motion. He gets so tired too, his little body having to work twice as hard, and he's stubborn. He doesn't like to be put in positions he doesn't want to be in. It's hard to see him like this, and I think we all want to see him on the move.

I just don't think I even anticipated the impact of him being developmentally delayed. I mean day to day it doesn't cause us many problems, it's just hard work. It's hard because we have to practice with him everyday, hard because he gets frustrated and stuck and I feel like we have to move him room to room with us and just plonk him down when we need to get stuff done (with toys!)
It's hard emotionally too, to constantly compare, or think how nice it would be for Theo to be able to play with him a little more, to see them sitting and playing or Rohan toddling after Theo in the garden. It's hard to have to try and cover it up, or try and explain, or answer questions. I also think it's just a constant daily reminder that he has this syndrome, and that he's different. And whilst I love so many things about Rohan that make him him, I just wish he wasn't so delayed. I hate to say that because I can't change it and it's not his fault, but it's the way I feel a lot of the time.

I do celebrate and get so excited when he learns something new, and I know each milestone for us will be such a big occasion. But for now I guess I just have to embrace the extended baby phase for a little longer. I know we'll get there in our own way and time, and for now Rohan can continue distracting everyone from his lack of movement by his lovely smile.



Living with developmental delay


I thought it was probably time for a Rohan update, but I wanted to talk a little bit about how our lives are, surrounding his developmental delay.

I've spoken before about how we know that this is part of his syndrome, but most of the time I try not and focus on it and compare to where he "should" be, but in fact try and focus on what he can do and how he is developing in his own way and in his own time. Which is fine, like most aspects of his care and about him, at home when we're in our bubble, but stepping outside of that comfort zone is hard.

I don't even have to actually step outside of my home to feel the pangs of jealously and comparison, all I have to do is have a quick scroll through my social media to see babies born around a similar time to Rohan, walking around, saying their first words and generally becoming full blown toddlers. There are even babies born way after Rohan who are now further ahead in development than he is. I know I shouldn't let it, but it hurts me. I'm not saying that the parents of these children shouldn't share their milestones and everyday goings on, they have every right, but it still doesn't stop the feeling of unfairness. That old emotion coming back to get me.

I know that all children develop in different ways, and that hopefully he will walk and talk (but the fact that we even have to say hopefully, when normally you don't even think about the fact they might not be able to) eventually, and some may even look at Rohan's development and compare that to their own children, it's natural I think, but it's not really talked about. It's hard to admit that he's behind, or that there's something causing these delays. All leading back to the fact he's different, things are harder and not straightforward.

So here we are, he's now 16 months but still around the age of 7-8 months developmentally. He has low muscle tone which means his body has to work so much harder to support itself. I actually forget how old he is often because when people ask his age I just give a vague answer of "just over a year" when I don't feel like going into it, or there's not really time. I'm not sure how long I can keep this up for to be honest, but I've still not perfected our story or how much to say and when. I don't really mind telling people, it's just I feel awkward. He does still look babyish to me, but his face is starting to show different, more grown up features so it's going to become obvious soon that he's not really only one.

For complete openess here is what he can do. He can roll back to front, and sometimes front to back (unless he gets his arm stuck). He can stay sitting for long periods of time, but we have to put him in sitting position, his legs are usually straight and pretty rigid, and he spends a lot of this time counter balancing himself. He can use both his arms to play in this position though, and will use a good pincer grip and transfer items between his hands. He's started to learn that he can drop and throw objects, and will look for them after he's dropped them. He uses his arms to communicate a lot of the time what he wants, by reaching, gesturing and lunging. He can pick objects up and move them aside to get to what he wants. He's starting to weight bear more whereas before if you tried to stand him up his legs would just go up. When he's on his front he can prop himself up on his elbows and use his hands to play, he likes to open flaps and turn pages in books. He can feed himself with his bottle and now his sippy cup, he also likes to use other objects such as his stacking cups to 'drink' out of. He likes to make our hands clap together, but hasn't worked out how to clap his own, even though recently I've seen movements that look like the start of it and waving.

We've been having weekly play and physio sessions where we are working on the transition between sitting and lying, and back again. He's doing pretty well at turning himself from sitting with his legs straight, to side sitting, with his legs bent to the side which then can lead to him kneeling, and supporting himself with his arms. He's struggling a little bit with the other way, which is to get up from side lying and push himself up with his arms. The thing is, is I can't remember the "normal" way of doing this. I can't remember how Theo got himself into sitting, then to lying and then to crawling. It's like it all happened too fast, but Rohan is in slow motion. He gets so tired too, his little body having to work twice as hard, and he's stubborn. He doesn't like to be put in positions he doesn't want to be in. It's hard to see him like this, and I think we all want to see him on the move.

I just don't think I even anticipated the impact of him being developmentally delayed. I mean day to day it doesn't cause us many problems, it's just hard work. It's hard because we have to practice with him everyday, hard because he gets frustrated and stuck and I feel like we have to move him room to room with us and just plonk him down when we need to get stuff done (with toys!)
It's hard emotionally too, to constantly compare, or think how nice it would be for Theo to be able to play with him a little more, to see them sitting and playing or Rohan toddling after Theo in the garden. It's hard to have to try and cover it up, or try and explain, or answer questions. I also think it's just a constant daily reminder that he has this syndrome, and that he's different. And whilst I love so many things about Rohan that make him him, I just wish he wasn't so delayed. I hate to say that because I can't change it and it's not his fault, but it's the way I feel a lot of the time.

I do celebrate and get so excited when he learns something new, and I know each milestone for us will be such a big occasion. But for now I guess I just have to embrace the extended baby phase for a little longer. I know we'll get there in our own way and time, and for now Rohan can continue distracting everyone from his lack of movement by his lovely smile.



On moving to the countryside

I've not really written much about our house move have I? I guess there's been so much else going on that the change of scenery sort of became just that, the background. But it's been such an important move for us so I thought it was probably time to write about it.

A little earlier than this time last year we decided that we wanted to move. A house move had been on our minds for a while and we even started looking when I was pregnant with Rohan, but then everything happened and our world got turned upside down for a while so those plans were shelved. We had enough to take in that thinking about moving just wasn't possible. So we remained where we were. Then Rohan arrived and for two months our lives were consumed with hospital and not much else, until we were finally able to return home, which we did but with a mountain of extra stuff. I know babies seem to come with a hell of a lot of extra things in the normal circumstances, but add a ton of extra medical equipment to that and any extra space we had soon got swallowed up. I think this just added to the stress of the situation and we felt like we were suffocating. That house also didn't hold too many good memories for me. Yes it was our first ever house we owned, so I will always remember it, and of course we did have good memories there, but on the whole it leaves a slight bitter taste in my mouth to look back. I reminds me of heartbreak and feeling awful. I went through two first trimesters in that house, full of sickness and not being able to get out of bed some days, to be followed by miscarriage where again my bed seemed the only place I wanted to be. Then of course we found out I fell pregnant for the second time and I endured the first trimester feeling much the same as last time, to get safely through. Then our world exploded and once again I spent time in bed where uncontrollable sobs took over. You know how the rest of that story goes.

Once we finally had Rohan home and settled into our new life with a baby, a baby with additional needs and equipment, it soon became apparent that our need for moving was still there. I think I quickly realised that along with coming to terms with how our lives had changed, the future I had imagined suddenly looked so different. I didn't want to be haunted constantly of memories of the way things should have been. We needed a change.

We didn't initially think about leaving Bristol, we looked at quote a few houses near us, but nothing was really right. We'd talked before about living outside of Bristol, getting a bit more for our money elsewhere. I grew up in a small town and lived in the countryside, and whilst I love Bristol, I always felt that actually I would be really happy living just outside of it. Rob on the other hand had grown up in Bristol, and returned there after University, so for him I think a complete change was appealing too. One day I think I just did a wider search of the whole of Bristol and surrounding areas to see what was available and a house came up, not too far away, still commutable to Bristol, but in a village, in the countryside. It would mean a whole change of school and services for Rohan, but we thought "why not" and booked to see it. In the meantime we had put our house on the market and managed to sell it within a week, thank you crazy Bristol housing market.

We went to see the house not long after in late March and fell in love. I've often heard that thing where houses just feel right and you know it's the place, but I've not really experienced it before. When we've been renting we just had to find the most suitable place and get in there quick, without much thought about if the house particularly speaks to you. Our first house was more of a 'good as we're going to get' situation, and whilst it was exciting and we felt very lucky to be able to buy our first place, I didn't love it. There was so much to do and as we went along and did it up we realised that there was still so much more to do on it to get it to where we would like, but what with Rohan coming along and everything that brought with it there was no way we could put the time and money into it like we needed to. So when we found this house, that didn't need any work, was the right size and feel, we just knew that we should go for it. We walked around the village after the viewing and just fell in love. I remember sitting in the park that is just a short walk from the house, in the peaceful early Spring sunshine and just thinking "I could live here".

It was a long old journey from there, we had to wait for the sellers to find somewhere to buy, which took all Summer, then we had to arrange changing schools, then we were delayed a further three months with hold ups further up the chain. I don't think we anticipated how stressful it would be. In that time we looked at other houses, just in case it all fell through, but however many we saw nothing compared to this one. It's like our hearts had made up their minds and were set. Which is a good sign I suppose. Thankfully it seemed as though everyone else in the chain were as set and determined to see it through to the end as we were, and miraculously after nine months wait nobody backed out and we finally exchanged and completed (four days before Christmas!)


We had to move Theo school of course and for me this was one of the biggest worries. How would he react to being moved and starting out all over again, leaving his friends he'd had since nursery, leaving the city where he'd grown up, but every time we spoke about it with him he seemed happy and understood and was excited to live in the countryside. It was a big move for me too, I was so worried about starting a fresh, making new friends and leaving my old ones. Even though we're not that far it's still a step into the unknown again, with a whole new school to navigate. To be honest I feel like I'm still only just getting there, but I know I'm so glad we're here.

There haven't been many moments where I've thought I wish we were still in Bristol, perhaps maybe for a potter down Gloucester road, or being further away from the many decent pizza places (even though our wallets and waistlines might be happier!). I perhaps think it would be nice to see my old friends a little more, but Rohan's diary keeps me pretty busy wherever we are. But there are so many reasons that I constantly feel thankful and happy about, being in the village. The views, the fresh air, how most things we need are just a short walk away, a great pub, friendly people, more space etc. I think we've managed to find replacements for everything we had and used in Bristol (I panicked suddenly when my MOT was due and we had to find somewhere, luckily we did and they even picked up and dropped my car off again for me!) I've been slowly finding more things to do for myself including running and a netball group. I've been taken along to the local baby and toddler group, which whilst was daunting at first has been really good to go to as it gets me out the house and meeting other local mums. Everything just feels a bit calmer and less overrun. I think it suits us.

Even though right now life is pretty stressful, I think being here and in this house makes it a little less so. I feel safe and comfortable here (figuratively and literally...we used to live across the road from drug dealers who had a few police raids...) being home and dealing with all we have to with Rohan feels better, and being able to return here after hard times in hospital makes it all the more worth it. We are happy just being here, going for walks and exploring the places near us. I feel like we made the right decision. We've only been here four months, but I feel we've settled in pretty well. Bristol will always have a special place in my heart, it's where we both my children were born, and the longest I have lived anywhere other than where I grew up. I have so many cherished memories of my days of becoming a mother and bringing up Theo there, and I'm happy for all we experienced there. But now it's a new chapter, a new place to call home and we couldn't be happier to be here.


On moving to the countryside

I've not really written much about our house move have I? I guess there's been so much else going on that the change of scenery sort of became just that, the background. But it's been such an important move for us so I thought it was probably time to write about it.

A little earlier than this time last year we decided that we wanted to move. A house move had been on our minds for a while and we even started looking when I was pregnant with Rohan, but then everything happened and our world got turned upside down for a while so those plans were shelved. We had enough to take in that thinking about moving just wasn't possible. So we remained where we were. Then Rohan arrived and for two months our lives were consumed with hospital and not much else, until we were finally able to return home, which we did but with a mountain of extra stuff. I know babies seem to come with a hell of a lot of extra things in the normal circumstances, but add a ton of extra medical equipment to that and any extra space we had soon got swallowed up. I think this just added to the stress of the situation and we felt like we were suffocating. That house also didn't hold too many good memories for me. Yes it was our first ever house we owned, so I will always remember it, and of course we did have good memories there, but on the whole it leaves a slight bitter taste in my mouth to look back. I reminds me of heartbreak and feeling awful. I went through two first trimesters in that house, full of sickness and not being able to get out of bed some days, to be followed by miscarriage where again my bed seemed the only place I wanted to be. Then of course we found out I fell pregnant for the second time and I endured the first trimester feeling much the same as last time, to get safely through. Then our world exploded and once again I spent time in bed where uncontrollable sobs took over. You know how the rest of that story goes.

Once we finally had Rohan home and settled into our new life with a baby, a baby with additional needs and equipment, it soon became apparent that our need for moving was still there. I think I quickly realised that along with coming to terms with how our lives had changed, the future I had imagined suddenly looked so different. I didn't want to be haunted constantly of memories of the way things should have been. We needed a change.

We didn't initially think about leaving Bristol, we looked at quote a few houses near us, but nothing was really right. We'd talked before about living outside of Bristol, getting a bit more for our money elsewhere. I grew up in a small town and lived in the countryside, and whilst I love Bristol, I always felt that actually I would be really happy living just outside of it. Rob on the other hand had grown up in Bristol, and returned there after University, so for him I think a complete change was appealing too. One day I think I just did a wider search of the whole of Bristol and surrounding areas to see what was available and a house came up, not too far away, still commutable to Bristol, but in a village, in the countryside. It would mean a whole change of school and services for Rohan, but we thought "why not" and booked to see it. In the meantime we had put our house on the market and managed to sell it within a week, thank you crazy Bristol housing market.

We went to see the house not long after in late March and fell in love. I've often heard that thing where houses just feel right and you know it's the place, but I've not really experienced it before. When we've been renting we just had to find the most suitable place and get in there quick, without much thought about if the house particularly speaks to you. Our first house was more of a 'good as we're going to get' situation, and whilst it was exciting and we felt very lucky to be able to buy our first place, I didn't love it. There was so much to do and as we went along and did it up we realised that there was still so much more to do on it to get it to where we would like, but what with Rohan coming along and everything that brought with it there was no way we could put the time and money into it like we needed to. So when we found this house, that didn't need any work, was the right size and feel, we just knew that we should go for it. We walked around the village after the viewing and just fell in love. I remember sitting in the park that is just a short walk from the house, in the peaceful early Spring sunshine and just thinking "I could live here".

It was a long old journey from there, we had to wait for the sellers to find somewhere to buy, which took all Summer, then we had to arrange changing schools, then we were delayed a further three months with hold ups further up the chain. I don't think we anticipated how stressful it would be. In that time we looked at other houses, just in case it all fell through, but however many we saw nothing compared to this one. It's like our hearts had made up their minds and were set. Which is a good sign I suppose. Thankfully it seemed as though everyone else in the chain were as set and determined to see it through to the end as we were, and miraculously after nine months wait nobody backed out and we finally exchanged and completed (four days before Christmas!)


We had to move Theo school of course and for me this was one of the biggest worries. How would he react to being moved and starting out all over again, leaving his friends he'd had since nursery, leaving the city where he'd grown up, but every time we spoke about it with him he seemed happy and understood and was excited to live in the countryside. It was a big move for me too, I was so worried about starting a fresh, making new friends and leaving my old ones. Even though we're not that far it's still a step into the unknown again, with a whole new school to navigate. To be honest I feel like I'm still only just getting there, but I know I'm so glad we're here.

There haven't been many moments where I've thought I wish we were still in Bristol, perhaps maybe for a potter down Gloucester road, or being further away from the many decent pizza places (even though our wallets and waistlines might be happier!). I perhaps think it would be nice to see my old friends a little more, but Rohan's diary keeps me pretty busy wherever we are. But there are so many reasons that I constantly feel thankful and happy about, being in the village. The views, the fresh air, how most things we need are just a short walk away, a great pub, friendly people, more space etc. I think we've managed to find replacements for everything we had and used in Bristol (I panicked suddenly when my MOT was due and we had to find somewhere, luckily we did and they even picked up and dropped my car off again for me!) I've been slowly finding more things to do for myself including running and a netball group. I've been taken along to the local baby and toddler group, which whilst was daunting at first has been really good to go to as it gets me out the house and meeting other local mums. Everything just feels a bit calmer and less overrun. I think it suits us.

Even though right now life is pretty stressful, I think being here and in this house makes it a little less so. I feel safe and comfortable here (figuratively and literally...we used to live across the road from drug dealers who had a few police raids...) being home and dealing with all we have to with Rohan feels better, and being able to return here after hard times in hospital makes it all the more worth it. We are happy just being here, going for walks and exploring the places near us. I feel like we made the right decision. We've only been here four months, but I feel we've settled in pretty well. Bristol will always have a special place in my heart, it's where we both my children were born, and the longest I have lived anywhere other than where I grew up. I have so many cherished memories of my days of becoming a mother and bringing up Theo there, and I'm happy for all we experienced there. But now it's a new chapter, a new place to call home and we couldn't be happier to be here.


A Rohan update: Part two

Once we did get home he did really well for a good few days and seemed much like his normal bright self. I'd forgotten how much he giggled and smiled when he's feeling well and it made me realise that he'd been pretty poorly leading up to this point. But by the following week he seemed to be struggling once again. We had our cardiac clinic on the Tuesday and after they had finished all of his checks, ecg and echo we mentioned to his cardiac consultant that we were worried once again. She suggested that we get him chest X-rayed, then take him round to A&E to be looked at. We did all this, and whilst his X-ray looked clear and ok, they wanted to keep him in for observation. So we waited to be moved to the small ward off of A&E, and I stayed the night. It was a horrible unsettled night and Rohan slept so badly, as did I.

Regarding the cardiac check up, everything still looked the same as it did, and his breathing problems aren't really attributed to his heart. They discussed that they do want to surgery on his PDA, which is the duct that all babies are born with, but which closes shortly after birth. Rohan's is still there and open and quite large so they want to close that. They think that it will only have to be keyhole surgery which for us is a relief. Then I guess they'll just closely monitor his aorta after that. His consultant mentioned that his duct still being open probably isn't helping his breathing trouble as it's making his lungs a bit wetter than normal with too much blood being directed there. So hopefully the surgery will help too.


When were told after our initial night in that Rohan was going to be admitted we asked what their plan was and mentioned that he responded really well to CPAP before and this is what we thought he needed. They we hesitant to do this as that would mean him being admitted to PICU, which they didn't think was needed. Again it was blocked airways due to his cold, and he was kept on oxygen like at home. He did ok but just kept on having really unsettled nights. We were in a bay with up to three other children, and it's not quiet to say the least. I felt so conscious and guilty every time Rohan woke up crying, which he did often as he was finding it hard to breathe. He was so uncomfortable and because his sats dipped every time he went into a deep sleep we found ourselves changing his position, or stirring him out of it, so I don't think he ever had a full, good nights sleep. We stayed in that bay for a week, and were almost discharged on the Monday as his oxygen requirement overnight was getting less and they seemed happy with him. But then something happened, I'm not sure how but a combination of things like him having a stomach upset and resulting vey sore bottom and so many nights of broken sleep that that night he had the worst night. He was waking every half an hour, I didn't get into bed until 3am. After that night I realised that he needed something more than just oxygen as he was really struggling. Rob came into hospital to swap over with me so I could go home and sleep, but I made sure that he was going to start pushing for them to do something more for him.


I hate that we had got to this point, where we had to get cross and really push for what we wanted. I appreciate everything the NHS has done for us and don't ever want to seem ungrateful, but sometimes as a parent you know what your child needs. Obviously we're not medically trained and I have so much respect for the jobs that all the staff do, but we couldn't stand back and have another night like the previous one and watch him suffering without a plan to help more. I returned home and Rob took over to what was another eventful night. After us asking for more they decided to finally try and few different things, first off the optiflow machine, which didn't help, then an NPA tube to hold his airways open, which didn't go in right and just caused him to gag all the time, so out it came. His nose was then all scratched up from this and he was just generally in a bad way. It seemed as though no-one really knew what step to take next, but he was eventually moved to the HDU part of the unit (and his own room) as they were going to attempt the NPA again in the morning. But somehow during that time they finally realised that yes, he needed CPAP, and a move down to PICU was imminent.

When I heard this news I wasn't worried, I was thankful that he was finally going to getting what he needed. Obviously he was in a bad way, but in my mind he was only going to be on PICU because that was the only place he could have CPAP used to begin with. But it was scary going back there. Because we couldn't stay on the ward both Rob and I returned home that evening, for the first time in over a week, but it brought back so many of those memories of leaving him there when he was so small, when we had no idea how long he was going to be in for or what was happening. But this time was different at least, we knew he responded well to CPAP and that when he was awake he was well. When we arrived after he'd been moved they had put down an ng tube, as well as an IV cannula in his hand. This I think was the most shocking, as it had been so long since he'd needed something like this. We were still unsure as to why he actually needed the ng, because he was still able to take food orally, but I think on PICU its more or less standard practice to put them in, just in case they need direct access etc. Suddenly he wasn't just Rohan having a little trouble breathing when he was asleep, he was in full on intensive care, with wires, tubes and machines. But I felt relieved. Relieved that we had finally been listened too, relieved that he finally looked so much more settled when he was asleep, and relieved too I guess that we could get a few nights of good rest. Leaving him was obviously so hard, but we were both so exhausted.


I've lost count of how long he was on PICU for, maybe three days or so, but as it was the weekend things all went quiet and we were left to more or less just get on with his care as usual, all the while just waiting for the new week to start and work towards getting off the ward. We again insisted that if he was showing signs of wanting milk orally that he be allowed to, as we'd worked so hard to get him taking his milk that way that we didn't want to relapse. And he did show that he wanted it and soon we were making our way back to his normal feeding schedule. We sat in our bubble of our routine and playing when Rohan was awake, he charmed the nurses with his smile and was generally pretty happy and content like usual. It was a relief to have him back but I felt strange being on intensive care with a baby who didn't look like he should be there. So many things were going on around us, people's lives going through unthinkable things, seeing families day in day out sitting with their sick children. It's a world I wish I'd never been invited into, to see behind those doors where things are so black and white but at the same time not straight forward at all. Where lives are changed and there is sadness as well as victories.

Eventually we were discharged from PICU and moved back up to HDU, with his CPAP. We were waiting on one lady to return to work so she could train us on the machine which we would take home with us. The weekend passed without much drama, just more waiting. You get used to a certain amount of just waiting around for one thing or another in hospital. We've worked out that really you need to add a few hours or a day or two on to most onto any timeframe that they give you. I feel like I've been a bit down on the care and the NHS in this post, so I just wanted to stress that however frustrating it can be and how long sometimes we have to wait, we're just so thankful for all that the hospital, doctors, nurses and everyone has done for us and continue to do. It's hard to imagine what our lives would be like without every single one of the services that we get, the equipment and medicine that we receive, all for free. Yes it can be ever so slightly frustrating sometimes, but when you realise how much they are doing, how over stretched the services and staff are then suddenly it doesn't seem too bad.


So after our weekend we waited a few more days and eventually got signed off on the equipment, and all of a sudden we were free to go. It felt a little surreal to just be able to walk out and be free. And there we are, our second hospital stay. It was the first of March, and the beginning of a month of recovering, for me both physically and mentally. I really don't think I processed any of what had been going on, just being in the mindset of just keep going and dealing with each day as it came. We were functioning on very little sleep, stress of seeing our boy in distress and juggling Theo and normal life. It took me a lot longer than I thought it would be realise what we'd just been through and the affect it had on us all. Rohan was doing a lot better, but we were still struggling with his sickness and a few weeks ago it all got too much. I think it all caught up on me, and after a few nights of bad sleep, exhaustion kicked in and I admitted defeat. It's scary when you don't really feel in control of your emotions or able to be there properly for your children's needs, but thankfully we were once again listened too and with the help of a lovely GP we were set up with new medication. I think I felt I just needed someone to listen. So that's where we are, but now we're facing our next challenge that is cardiac surgery next week, but I think I'd better write another post about that soon...

A Rohan update: Part two

Once we did get home he did really well for a good few days and seemed much like his normal bright self. I'd forgotten how much he giggled and smiled when he's feeling well and it made me realise that he'd been pretty poorly leading up to this point. But by the following week he seemed to be struggling once again. We had our cardiac clinic on the Tuesday and after they had finished all of his checks, ecg and echo we mentioned to his cardiac consultant that we were worried once again. She suggested that we get him chest X-rayed, then take him round to A&E to be looked at. We did all this, and whilst his X-ray looked clear and ok, they wanted to keep him in for observation. So we waited to be moved to the small ward off of A&E, and I stayed the night. It was a horrible unsettled night and Rohan slept so badly, as did I.

Regarding the cardiac check up, everything still looked the same as it did, and his breathing problems aren't really attributed to his heart. They discussed that they do want to surgery on his PDA, which is the duct that all babies are born with, but which closes shortly after birth. Rohan's is still there and open and quite large so they want to close that. They think that it will only have to be keyhole surgery which for us is a relief. Then I guess they'll just closely monitor his aorta after that. His consultant mentioned that his duct still being open probably isn't helping his breathing trouble as it's making his lungs a bit wetter than normal with too much blood being directed there. So hopefully the surgery will help too.


When were told after our initial night in that Rohan was going to be admitted we asked what their plan was and mentioned that he responded really well to CPAP before and this is what we thought he needed. They we hesitant to do this as that would mean him being admitted to PICU, which they didn't think was needed. Again it was blocked airways due to his cold, and he was kept on oxygen like at home. He did ok but just kept on having really unsettled nights. We were in a bay with up to three other children, and it's not quiet to say the least. I felt so conscious and guilty every time Rohan woke up crying, which he did often as he was finding it hard to breathe. He was so uncomfortable and because his sats dipped every time he went into a deep sleep we found ourselves changing his position, or stirring him out of it, so I don't think he ever had a full, good nights sleep. We stayed in that bay for a week, and were almost discharged on the Monday as his oxygen requirement overnight was getting less and they seemed happy with him. But then something happened, I'm not sure how but a combination of things like him having a stomach upset and resulting vey sore bottom and so many nights of broken sleep that that night he had the worst night. He was waking every half an hour, I didn't get into bed until 3am. After that night I realised that he needed something more than just oxygen as he was really struggling. Rob came into hospital to swap over with me so I could go home and sleep, but I made sure that he was going to start pushing for them to do something more for him.


I hate that we had got to this point, where we had to get cross and really push for what we wanted. I appreciate everything the NHS has done for us and don't ever want to seem ungrateful, but sometimes as a parent you know what your child needs. Obviously we're not medically trained and I have so much respect for the jobs that all the staff do, but we couldn't stand back and have another night like the previous one and watch him suffering without a plan to help more. I returned home and Rob took over to what was another eventful night. After us asking for more they decided to finally try and few different things, first off the optiflow machine, which didn't help, then an NPA tube to hold his airways open, which didn't go in right and just caused him to gag all the time, so out it came. His nose was then all scratched up from this and he was just generally in a bad way. It seemed as though no-one really knew what step to take next, but he was eventually moved to the HDU part of the unit (and his own room) as they were going to attempt the NPA again in the morning. But somehow during that time they finally realised that yes, he needed CPAP, and a move down to PICU was imminent.

When I heard this news I wasn't worried, I was thankful that he was finally going to getting what he needed. Obviously he was in a bad way, but in my mind he was only going to be on PICU because that was the only place he could have CPAP used to begin with. But it was scary going back there. Because we couldn't stay on the ward both Rob and I returned home that evening, for the first time in over a week, but it brought back so many of those memories of leaving him there when he was so small, when we had no idea how long he was going to be in for or what was happening. But this time was different at least, we knew he responded well to CPAP and that when he was awake he was well. When we arrived after he'd been moved they had put down an ng tube, as well as an IV cannula in his hand. This I think was the most shocking, as it had been so long since he'd needed something like this. We were still unsure as to why he actually needed the ng, because he was still able to take food orally, but I think on PICU its more or less standard practice to put them in, just in case they need direct access etc. Suddenly he wasn't just Rohan having a little trouble breathing when he was asleep, he was in full on intensive care, with wires, tubes and machines. But I felt relieved. Relieved that we had finally been listened too, relieved that he finally looked so much more settled when he was asleep, and relieved too I guess that we could get a few nights of good rest. Leaving him was obviously so hard, but we were both so exhausted.


I've lost count of how long he was on PICU for, maybe three days or so, but as it was the weekend things all went quiet and we were left to more or less just get on with his care as usual, all the while just waiting for the new week to start and work towards getting off the ward. We again insisted that if he was showing signs of wanting milk orally that he be allowed to, as we'd worked so hard to get him taking his milk that way that we didn't want to relapse. And he did show that he wanted it and soon we were making our way back to his normal feeding schedule. We sat in our bubble of our routine and playing when Rohan was awake, he charmed the nurses with his smile and was generally pretty happy and content like usual. It was a relief to have him back but I felt strange being on intensive care with a baby who didn't look like he should be there. So many things were going on around us, people's lives going through unthinkable things, seeing families day in day out sitting with their sick children. It's a world I wish I'd never been invited into, to see behind those doors where things are so black and white but at the same time not straight forward at all. Where lives are changed and there is sadness as well as victories.

Eventually we were discharged from PICU and moved back up to HDU, with his CPAP. We were waiting on one lady to return to work so she could train us on the machine which we would take home with us. The weekend passed without much drama, just more waiting. You get used to a certain amount of just waiting around for one thing or another in hospital. We've worked out that really you need to add a few hours or a day or two on to most onto any timeframe that they give you. I feel like I've been a bit down on the care and the NHS in this post, so I just wanted to stress that however frustrating it can be and how long sometimes we have to wait, we're just so thankful for all that the hospital, doctors, nurses and everyone has done for us and continue to do. It's hard to imagine what our lives would be like without every single one of the services that we get, the equipment and medicine that we receive, all for free. Yes it can be ever so slightly frustrating sometimes, but when you realise how much they are doing, how over stretched the services and staff are then suddenly it doesn't seem too bad.


So after our weekend we waited a few more days and eventually got signed off on the equipment, and all of a sudden we were free to go. It felt a little surreal to just be able to walk out and be free. And there we are, our second hospital stay. It was the first of March, and the beginning of a month of recovering, for me both physically and mentally. I really don't think I processed any of what had been going on, just being in the mindset of just keep going and dealing with each day as it came. We were functioning on very little sleep, stress of seeing our boy in distress and juggling Theo and normal life. It took me a lot longer than I thought it would be realise what we'd just been through and the affect it had on us all. Rohan was doing a lot better, but we were still struggling with his sickness and a few weeks ago it all got too much. I think it all caught up on me, and after a few nights of bad sleep, exhaustion kicked in and I admitted defeat. It's scary when you don't really feel in control of your emotions or able to be there properly for your children's needs, but thankfully we were once again listened too and with the help of a lovely GP we were set up with new medication. I think I felt I just needed someone to listen. So that's where we are, but now we're facing our next challenge that is cardiac surgery next week, but I think I'd better write another post about that soon...

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...

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...

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"
etc.

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.




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"
etc.

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.




One Year


So you are one. One year old. I know I should have been more prepared for it, but it really doesn't seem possible.

Yes the dates add up, one year ago you decided to enter this world slightly early, but in your own perfect time. Your arrival was quick and it made me proud. I faced my anxieties, my fears and worries about what was to come after your birth and put them to the side after a little wobble. I embraced the fact that you were coming, not how we imagined it all those months ago when we first found out I was pregnant, when we first saw your little dancing form on the screen, before we knew all that we were to find out. But it didn't matter, you were coming and we were eager to meet you, our second baby, our second son. Unlike Theo we had pretty much decided upon your name before you arrived, a name I've loved for a long long time and it only seemed fitting that it would belong to you. Because you were loved, all the way through, and that love is what keep us going, ready to face whatever came next.


But I don't think anyone could have really prepared us though for what came next. It just doesn't even feel like it actually all happened to us. Of course we knew that when Rohan arrived he would be taken to NICU, then we thought he would spend a few days there getting ready for surgery. But that never happened. I'm thankful of course that we didn't have to send our newborn baby down for surgery, but the weeks spent not knowing what was happening, awaiting meetings, diagnosis and plans, were torturous.

I can remember in the hours after Rohan was born I was so full of adrenaline that I walked myself round to the ward, dropped my things and headed straight down to NICU. We didn't hold him, we hadn't since the moments he was placed in my arms after he was born, then taken away again.  Theo came to meet him and his face was so full of inquisitiveness and fear that I didn't quite know what to do. I felt love and sadness. I think I'd imagined in my head over and over the meeting of my two children, and it looked nothing like this. There were so many moments of realising I had to say goodbye to all these things I had imagined, and accept that they weren't to happen. I wouldn't have skin to skin, that first feed, gazing at my newborns face asleep in my arms, seeing my first born meet his brother and being able to reach out and touch him. There's just so much that I don't think I ever really faced. We just went into auto drive. Rob had to return home that first evening and I was encouraged to return to the ward to get some rest. They have a special room on the maternity ward, for mums who can't be with their babies. It just looks like any other hospital room, but lying there hearing the cries of newborn babies in the next room is just heartbreaking. I'm not even sure of what I felt on that first night, I don't think it had sunk in. It did and it didn't feel like something was missing. Of course I no longer had a huge pregnant stomach, but at the same time I don't remember feeling like I was separated from my baby. I think that perhaps because we hadn't spent time initially bonding that the bond wasn't as strong. That's hard to admit, but I know I didn't feel that same as I did with Theo. My mind rationalised it all, he was intensive care, away from me because that was where he needed to be. I couldn't do much for him.


I remember waking up in the night and trying to express for the first time. I then shuffled my way through the quiet corridors and down in the lift to NICU. Hours earlier we'd all been there, I held his tiny hand through the incubator and watched his tiny movements. I didn't even really think about not going down there, my feet just led the way. When I arrived I saw at once that he had something on his face to help him to breathe. The nurse told me that he had been struggling so they had to put him on the cpap machine. It just nodded my head and accepted this new normal. I could hardly see any of his face, all puffy and covered in tubes and tape. His beautiful dark hair was hidden under a hat and everywhere you looked he had wires coming out of somewhere. It just didn't feel real, that this was my baby. The one who had been inside me less than 24 hours ago. I'm not sure how long I stayed, but eventually I left and returned to my room to sleep some more.


The next day or so are such a blur now, a few more people visited, I was recovering well from the birth and was discharged the very next day. I hadn't even thought about the fact that I would actually have to leave the hospital and separate myself even further. We'd been able to hold Rohan for the first time since he was first born that day and it felt a little like the bonding was starting to happen. Then I had to leave him. On the drive home all I could imagine was a long string connecting myself with Rohan getting longer and longer, stretched thin and fragile. Our tie was being pulled apart and I don't think it recovered for a long while. And then so our weeks of commuting back and forth began. We split ourselves between trying to be there for two children, to accept and understand all that was going on. I think I just shut down. I don't think I faced it or coped with it well. We just got through each day, sitting by a tiny cot, surrounded by beeps, wires and alarms. Of course we made progress, we moved wards and beds a number of times and gradually, ever so slowly crept towards the unspeakable goal of home. Looking back I have no idea who these people were, the ones who got out of bed every morning and took Theo to school, then drove to the hospital and tried as hard a we could to care for our little baby. I tried all I could to bond, and we did. Leaving everyday was heartbreaking, but I had to do it, so I did. But it just wasn't the same. I know I wasn't really me, and I couldn't really let much of it sink in. I know when my sister first came to visit I couldn't look her in the eye or talk to her properly because I knew it would be too painful. She knew I wasn't ok, but I wasn't ready to face that. I had to carry on and I had to cope. It's like it didn't happen to us.


Eventually it did get easier, the amount we could do ourselves for Rohan grew and we became much more confident. Our trips to hospital became routine, we didn't think too much about it except when logistics got in the way. Theo was able to interact a little more with Rohan and it felt like we were making progress. The weaning off of the C-pap machine was a massive step, which meant we could move to the cardiac ward. It became more and more clear that he probably wasn't going to have surgery, and whilst we had to deal with the hugeness of Rohan being diagnosed with Rubinstein- Taybi syndrome (something which you know is something I'm still coming to terms with) it felt like we were finally getting somewhere. This was our life now.


So now that Rohan's a year old I feel confused. I feel like it can't quite be true because he hasn't been with us for a whole year. We were robbed of a few months of him and it still feels as though we're catching up. It feels strange to tell people his age too, because to me he seems to only around 6 or 7 months old. I know that it always goes fast, but this actually doesn't feel right, like I've got my dates all wrong. I guess it feels a little off because I don't look back at this time with fondness. With Theo we cooed over photos of him as a squidgy newborn, snuggled up against our chests or pulling sweet faces. But with Rohan we can't. We couldn't see his face or hair, we couldn't pick him up or walk around with him with ease, we had to leave him every night to sleep on his own. We had to feed him through a tube, we had to listen to the noises of the machines monitoring his oxygen levels and watch as he was prodded and pricked for bloods for tests. Whilst I was happy he was finally here, it wasn't a happy time. We were sleepwalking through our routine, waiting for news, trying to make sense of it all. I think Rohan's birthday will always fill me with jolts of unhappiness, when we realised we wouldn't be able to take him home as soon as we liked, that our journey will always be different. I guess I will always think about or remember how it should have been, but wasn't.


Of course there's much to celebrate, and we 're so proud of how well Rohan has done. He's developed and changed so much, in his own way. We've been supported so much by family and services, and have worked so hard ourselves. To think he used to have most of his milk via his ng tube, to now be able to manage it all orally. He's weaned onto puree food and has dabbled in a few more solid bits. He's showing us more and more he wants to interact with people and things around him, reaching and grabbing for everything. He's become so much stronger physically, and whilst he's certainly 'delayed' he is still developing and learning, and is now sitting so much more confidently. But just more than anything his little personality shines through, he's so happy and content and very much loves to laugh. Dancing, singing and tickling make him giggle his funny little laugh and he can't take his eyes off his brother. For it is he who he adores the most. He loves to reach out and touch your face and draw your face in close to his, for what I like to think is a kiss, but is more of an open mouth slobber. He likes to shout, gurgle and coo and hates to be alone, if you leave the room you can hear angry little shouts of attention seeking coming from his high chair. His feet are one of his favourites still, and he likes to impress by eating them and holding his legs straight up. He has just started to shake his head and often it's definitely in context to him not wanting something, and it's just about the sweetest thing. He loves to hold and play with the basket the holds most of his toys, and puts it on and off his head. I love it.

I can't imagine our family without him, however long he's actually been here at home with us. I know however hard it has been, and may be in the future, we have been given a gift. Rohan, we love you more than you can imagine.


One Year


So you are one. One year old. I know I should have been more prepared for it, but it really doesn't seem possible.

Yes the dates add up, one year ago you decided to enter this world slightly early, but in your own perfect time. Your arrival was quick and it made me proud. I faced my anxieties, my fears and worries about what was to come after your birth and put them to the side after a little wobble. I embraced the fact that you were coming, not how we imagined it all those months ago when we first found out I was pregnant, when we first saw your little dancing form on the screen, before we knew all that we were to find out. But it didn't matter, you were coming and we were eager to meet you, our second baby, our second son. Unlike Theo we had pretty much decided upon your name before you arrived, a name I've loved for a long long time and it only seemed fitting that it would belong to you. Because you were loved, all the way through, and that love is what keep us going, ready to face whatever came next.


But I don't think anyone could have really prepared us though for what came next. It just doesn't even feel like it actually all happened to us. Of course we knew that when Rohan arrived he would be taken to NICU, then we thought he would spend a few days there getting ready for surgery. But that never happened. I'm thankful of course that we didn't have to send our newborn baby down for surgery, but the weeks spent not knowing what was happening, awaiting meetings, diagnosis and plans, were torturous.

I can remember in the hours after Rohan was born I was so full of adrenaline that I walked myself round to the ward, dropped my things and headed straight down to NICU. We didn't hold him, we hadn't since the moments he was placed in my arms after he was born, then taken away again.  Theo came to meet him and his face was so full of inquisitiveness and fear that I didn't quite know what to do. I felt love and sadness. I think I'd imagined in my head over and over the meeting of my two children, and it looked nothing like this. There were so many moments of realising I had to say goodbye to all these things I had imagined, and accept that they weren't to happen. I wouldn't have skin to skin, that first feed, gazing at my newborns face asleep in my arms, seeing my first born meet his brother and being able to reach out and touch him. There's just so much that I don't think I ever really faced. We just went into auto drive. Rob had to return home that first evening and I was encouraged to return to the ward to get some rest. They have a special room on the maternity ward, for mums who can't be with their babies. It just looks like any other hospital room, but lying there hearing the cries of newborn babies in the next room is just heartbreaking. I'm not even sure of what I felt on that first night, I don't think it had sunk in. It did and it didn't feel like something was missing. Of course I no longer had a huge pregnant stomach, but at the same time I don't remember feeling like I was separated from my baby. I think that perhaps because we hadn't spent time initially bonding that the bond wasn't as strong. That's hard to admit, but I know I didn't feel that same as I did with Theo. My mind rationalised it all, he was intensive care, away from me because that was where he needed to be. I couldn't do much for him.


I remember waking up in the night and trying to express for the first time. I then shuffled my way through the quiet corridors and down in the lift to NICU. Hours earlier we'd all been there, I held his tiny hand through the incubator and watched his tiny movements. I didn't even really think about not going down there, my feet just led the way. When I arrived I saw at once that he had something on his face to help him to breathe. The nurse told me that he had been struggling so they had to put him on the cpap machine. It just nodded my head and accepted this new normal. I could hardly see any of his face, all puffy and covered in tubes and tape. His beautiful dark hair was hidden under a hat and everywhere you looked he had wires coming out of somewhere. It just didn't feel real, that this was my baby. The one who had been inside me less than 24 hours ago. I'm not sure how long I stayed, but eventually I left and returned to my room to sleep some more.


The next day or so are such a blur now, a few more people visited, I was recovering well from the birth and was discharged the very next day. I hadn't even thought about the fact that I would actually have to leave the hospital and separate myself even further. We'd been able to hold Rohan for the first time since he was first born that day and it felt a little like the bonding was starting to happen. Then I had to leave him. On the drive home all I could imagine was a long string connecting myself with Rohan getting longer and longer, stretched thin and fragile. Our tie was being pulled apart and I don't think it recovered for a long while. And then so our weeks of commuting back and forth began. We split ourselves between trying to be there for two children, to accept and understand all that was going on. I think I just shut down. I don't think I faced it or coped with it well. We just got through each day, sitting by a tiny cot, surrounded by beeps, wires and alarms. Of course we made progress, we moved wards and beds a number of times and gradually, ever so slowly crept towards the unspeakable goal of home. Looking back I have no idea who these people were, the ones who got out of bed every morning and took Theo to school, then drove to the hospital and tried as hard a we could to care for our little baby. I tried all I could to bond, and we did. Leaving everyday was heartbreaking, but I had to do it, so I did. But it just wasn't the same. I know I wasn't really me, and I couldn't really let much of it sink in. I know when my sister first came to visit I couldn't look her in the eye or talk to her properly because I knew it would be too painful. She knew I wasn't ok, but I wasn't ready to face that. I had to carry on and I had to cope. It's like it didn't happen to us.


Eventually it did get easier, the amount we could do ourselves for Rohan grew and we became much more confident. Our trips to hospital became routine, we didn't think too much about it except when logistics got in the way. Theo was able to interact a little more with Rohan and it felt like we were making progress. The weaning off of the C-pap machine was a massive step, which meant we could move to the cardiac ward. It became more and more clear that he probably wasn't going to have surgery, and whilst we had to deal with the hugeness of Rohan being diagnosed with Rubinstein- Taybi syndrome (something which you know is something I'm still coming to terms with) it felt like we were finally getting somewhere. This was our life now.


So now that Rohan's a year old I feel confused. I feel like it can't quite be true because he hasn't been with us for a whole year. We were robbed of a few months of him and it still feels as though we're catching up. It feels strange to tell people his age too, because to me he seems to only around 6 or 7 months old. I know that it always goes fast, but this actually doesn't feel right, like I've got my dates all wrong. I guess it feels a little off because I don't look back at this time with fondness. With Theo we cooed over photos of him as a squidgy newborn, snuggled up against our chests or pulling sweet faces. But with Rohan we can't. We couldn't see his face or hair, we couldn't pick him up or walk around with him with ease, we had to leave him every night to sleep on his own. We had to feed him through a tube, we had to listen to the noises of the machines monitoring his oxygen levels and watch as he was prodded and pricked for bloods for tests. Whilst I was happy he was finally here, it wasn't a happy time. We were sleepwalking through our routine, waiting for news, trying to make sense of it all. I think Rohan's birthday will always fill me with jolts of unhappiness, when we realised we wouldn't be able to take him home as soon as we liked, that our journey will always be different. I guess I will always think about or remember how it should have been, but wasn't.


Of course there's much to celebrate, and we 're so proud of how well Rohan has done. He's developed and changed so much, in his own way. We've been supported so much by family and services, and have worked so hard ourselves. To think he used to have most of his milk via his ng tube, to now be able to manage it all orally. He's weaned onto puree food and has dabbled in a few more solid bits. He's showing us more and more he wants to interact with people and things around him, reaching and grabbing for everything. He's become so much stronger physically, and whilst he's certainly 'delayed' he is still developing and learning, and is now sitting so much more confidently. But just more than anything his little personality shines through, he's so happy and content and very much loves to laugh. Dancing, singing and tickling make him giggle his funny little laugh and he can't take his eyes off his brother. For it is he who he adores the most. He loves to reach out and touch your face and draw your face in close to his, for what I like to think is a kiss, but is more of an open mouth slobber. He likes to shout, gurgle and coo and hates to be alone, if you leave the room you can hear angry little shouts of attention seeking coming from his high chair. His feet are one of his favourites still, and he likes to impress by eating them and holding his legs straight up. He has just started to shake his head and often it's definitely in context to him not wanting something, and it's just about the sweetest thing. He loves to hold and play with the basket the holds most of his toys, and puts it on and off his head. I love it.

I can't imagine our family without him, however long he's actually been here at home with us. I know however hard it has been, and may be in the future, we have been given a gift. Rohan, we love you more than you can imagine.