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.



Mother's Day


So yes, Mother's day was indeed a month ago. But seeing as I've not even opened up this blog it's pretty good progress that it's only a month late. (I'm just ignoring the half written post on Rohan's two year update)

But anyway, that out the way I thought it might be nice to share a few photos from Mother's Day. We didn't plan to do anything or see any of our own Mother's this day, we didn't feel like paying extra than normal to eat a pub roast (and eating out is just a bit stressful at the moment!) and with the exception of spending the day in bed (or in a hotel or spa!) on my own and not seeing my children, I didn't really mind what we did. Which actually turned out to be a great plan, because sometimes when it's a "special occasion" there's this big pressure to do something big, planned and sentimental. There's so much you "should" be buying to celebrate your mother, when actually it doesn't really matter does it? It's also so important to realise that this day can be so so difficult for others for a variety of reasons, that actually sometimes it feels a bit much to shout about how wonderful your mothers day has been and all the unneeded extravagance. I'm happy with a cup of tea in bed, a homemade card and perhaps a bunch of flowers (all of which I did get and was very happy about!)

At the last minute we decided to go somewhere we've not been for a long time, and realised that it's not too far from where we now live. So we headed to Wells for the afternoon. It was forecast to rain later in the day so we didn't really fancy hanging around too long, but after a potter in some shops, a look around the grounds of the cathedral, Theo and I had a mini cafe date whilst Rob walked a tired babe around to sleep. We then walked some more, sat and watched Theo roll down some banks of grass by the Cathedral entrance and then stumbled upon the most idyllic row of cottages you ever did see. And here of course we took it as a photo opportunity and managed to get a few nice portraits of me with my children, and that makes me very happy. Hope you enjoy them!


 (A few of the interesting angled ones were taken by Theo!)

Mother's Day


So yes, Mother's day was indeed a month ago. But seeing as I've not even opened up this blog it's pretty good progress that it's only a month late. (I'm just ignoring the half written post on Rohan's two year update)

But anyway, that out the way I thought it might be nice to share a few photos from Mother's Day. We didn't plan to do anything or see any of our own Mother's this day, we didn't feel like paying extra than normal to eat a pub roast (and eating out is just a bit stressful at the moment!) and with the exception of spending the day in bed (or in a hotel or spa!) on my own and not seeing my children, I didn't really mind what we did. Which actually turned out to be a great plan, because sometimes when it's a "special occasion" there's this big pressure to do something big, planned and sentimental. There's so much you "should" be buying to celebrate your mother, when actually it doesn't really matter does it? It's also so important to realise that this day can be so so difficult for others for a variety of reasons, that actually sometimes it feels a bit much to shout about how wonderful your mothers day has been and all the unneeded extravagance. I'm happy with a cup of tea in bed, a homemade card and perhaps a bunch of flowers (all of which I did get and was very happy about!)

At the last minute we decided to go somewhere we've not been for a long time, and realised that it's not too far from where we now live. So we headed to Wells for the afternoon. It was forecast to rain later in the day so we didn't really fancy hanging around too long, but after a potter in some shops, a look around the grounds of the cathedral, Theo and I had a mini cafe date whilst Rob walked a tired babe around to sleep. We then walked some more, sat and watched Theo roll down some banks of grass by the Cathedral entrance and then stumbled upon the most idyllic row of cottages you ever did see. And here of course we took it as a photo opportunity and managed to get a few nice portraits of me with my children, and that makes me very happy. Hope you enjoy them!


 (A few of the interesting angled ones were taken by Theo!)

So long January...a life update

So January was a bit of a shocker right? I hate to start the year off on such a bad foot but it just seemed to go from bad to worse.

Well let's not be too negative, there were some good moments. I spent time with my sister on her visit over, we had a few days exploring which is always great. We had a lovely day for Rohan's birthday and I feel I dealt with all the feelings that come with his birthday pretty well. Then it sort of tails off from there.

I ended up hibernating quite a lot, due largely to the fact that I was phoneless and also due to the fact that perhaps maybe I wasn't dealing the Rohan turning two all that well. It's so hard to remain positive about your situation when there are so many others celebrating their children's second birthdays and they look a lot more like you imagined celebrating yours would, but in fact it's not like that at all. So I tried to take a step back, to not get jealous, or feel angry and resentful, because at the end of the day those aren't nice feelings to have and everyone else has the right to celebrate their children's birthday and share it. I know I wouldn't think twice about it if we were in that situation and not plunged into the world that we are in.


But here we are. Then of course came hospital, the dread and the fear becoming a reality once more. Thankfully it was just a short stay whilst Rohan got over a nasty virus, which made his breathing when asleep pretty problematic (more so than it already is) and rendered us fairly useless at home to help him anymore. So a nearly midnight trip to A&E was made in full knowledge that we would be admitted (I don't take chances anymore and always pack our bags for at least a few nights stay). Nothing can really describe the feeling of having to be in hospital because of your sick child. You know they need to be there, and you're happy that they are being really well looked after and in the best place should anything need to be done, but at the same time you're desperate to be home. I hate not being able to split myself or be all together, or be there for both of my children, but it's impossible. Even if I was at home with Theo then I would feel guilty that I wasn't in hospital with Rohan. Then Rob came down with tonsillitis, leaving me just at hospital all day and night. We did thankfully have grandparents who came to see Rohan and help with Theo, which gave me chance to leave the hospital for half an hour or so to grab some lunch and fresh air. Rohan recovered pretty well and we were discharged, but I'm trying our hardest to just make sure we don't expose ourselves to too many germs and bugs.

But I didn't see Theo for about three days straight, and it was horrible. I know that this time he was really worried about Rohan, and for the first time seemed to really feel the weight of what was going on. I feel so bad about it all. He's had such a tough few weeks since this all happened and it stresses me out so much. I think sometimes that because of everything we have to deal with with Rohan becomes part of our daily life, we expect to have problems, it hits me harder I think when we have a difficult time with Theo. He's just been so cross at the moment, we've had massive meltdowns where he just seems so out of control and I'm at a loss at how to manage them for the best. He's having a few social problems at school too, and whilst he loves being there and learning it does worry me that because of the way he is, we're always going to have this sort of problem. He just doesn't take well to being wound up, or takes things way too literally and gets himself set on an idea or a fact he think's he heard but actually it's not the case but having to break it to him that it's something different is often a massive battle. I know we went through a similar stage at this time last year, and maybe it's all to do with turning a year older, the come down after Christmas then the excitement for his birthday, and of course everything with Rohan. I get all the reasons but it's just so difficult when you really need things to be a little easier.

I think because he is our "typical" child (I hate myself for having to write that, but I don't know how better to describe it) I think I expect things to be easier with him, for things just to coast along nicely and when they don't it just all feels too much. Of course that's such a massive expectation to put onto him (even though I obviously would never ever say that to him or give him that impression) and it's at times like these that I realise Theo has his own things to go through, and reaction to everything that is going on around him too. I'm really trying my best to understand that and give him support and time to work through it, but man does it all feel like all the things are being thrown at us at the moment.


I barely picked up my camera at all in January, I've got a mountain of work I need to do for my photography business and so many blog posts I want to write, but it all just has to be put to the side. I feel like I just want to press the reset button, to gather my thoughts for a little while longer and refresh my mind. It just feels so weighed down with all that is going on and sometimes I feel like I'm really struggling to keep on top of it all. But now January is over and we creep towards Spring I'm hoping that by the time the magnolia blooms we might be in a slightly better place. For even though I always put so much hope into the coming of Spring, it really does seem to set things right. It's my restorative time, the season I yearn for the most and when it finally arrives I feel like I can breathe a little lighter, I can start to feel positive and plan for the future a little more again and just be thankful for all that we have. But for now, the shutters are still slightly closed as we put our heads down and just try and get through the next month or so.


So long January...a life update

So January was a bit of a shocker right? I hate to start the year off on such a bad foot but it just seemed to go from bad to worse.

Well let's not be too negative, there were some good moments. I spent time with my sister on her visit over, we had a few days exploring which is always great. We had a lovely day for Rohan's birthday and I feel I dealt with all the feelings that come with his birthday pretty well. Then it sort of tails off from there.

I ended up hibernating quite a lot, due largely to the fact that I was phoneless and also due to the fact that perhaps maybe I wasn't dealing the Rohan turning two all that well. It's so hard to remain positive about your situation when there are so many others celebrating their children's second birthdays and they look a lot more like you imagined celebrating yours would, but in fact it's not like that at all. So I tried to take a step back, to not get jealous, or feel angry and resentful, because at the end of the day those aren't nice feelings to have and everyone else has the right to celebrate their children's birthday and share it. I know I wouldn't think twice about it if we were in that situation and not plunged into the world that we are in.


But here we are. Then of course came hospital, the dread and the fear becoming a reality once more. Thankfully it was just a short stay whilst Rohan got over a nasty virus, which made his breathing when asleep pretty problematic (more so than it already is) and rendered us fairly useless at home to help him anymore. So a nearly midnight trip to A&E was made in full knowledge that we would be admitted (I don't take chances anymore and always pack our bags for at least a few nights stay). Nothing can really describe the feeling of having to be in hospital because of your sick child. You know they need to be there, and you're happy that they are being really well looked after and in the best place should anything need to be done, but at the same time you're desperate to be home. I hate not being able to split myself or be all together, or be there for both of my children, but it's impossible. Even if I was at home with Theo then I would feel guilty that I wasn't in hospital with Rohan. Then Rob came down with tonsillitis, leaving me just at hospital all day and night. We did thankfully have grandparents who came to see Rohan and help with Theo, which gave me chance to leave the hospital for half an hour or so to grab some lunch and fresh air. Rohan recovered pretty well and we were discharged, but I'm trying our hardest to just make sure we don't expose ourselves to too many germs and bugs.

But I didn't see Theo for about three days straight, and it was horrible. I know that this time he was really worried about Rohan, and for the first time seemed to really feel the weight of what was going on. I feel so bad about it all. He's had such a tough few weeks since this all happened and it stresses me out so much. I think sometimes that because of everything we have to deal with with Rohan becomes part of our daily life, we expect to have problems, it hits me harder I think when we have a difficult time with Theo. He's just been so cross at the moment, we've had massive meltdowns where he just seems so out of control and I'm at a loss at how to manage them for the best. He's having a few social problems at school too, and whilst he loves being there and learning it does worry me that because of the way he is, we're always going to have this sort of problem. He just doesn't take well to being wound up, or takes things way too literally and gets himself set on an idea or a fact he think's he heard but actually it's not the case but having to break it to him that it's something different is often a massive battle. I know we went through a similar stage at this time last year, and maybe it's all to do with turning a year older, the come down after Christmas then the excitement for his birthday, and of course everything with Rohan. I get all the reasons but it's just so difficult when you really need things to be a little easier.

I think because he is our "typical" child (I hate myself for having to write that, but I don't know how better to describe it) I think I expect things to be easier with him, for things just to coast along nicely and when they don't it just all feels too much. Of course that's such a massive expectation to put onto him (even though I obviously would never ever say that to him or give him that impression) and it's at times like these that I realise Theo has his own things to go through, and reaction to everything that is going on around him too. I'm really trying my best to understand that and give him support and time to work through it, but man does it all feel like all the things are being thrown at us at the moment.


I barely picked up my camera at all in January, I've got a mountain of work I need to do for my photography business and so many blog posts I want to write, but it all just has to be put to the side. I feel like I just want to press the reset button, to gather my thoughts for a little while longer and refresh my mind. It just feels so weighed down with all that is going on and sometimes I feel like I'm really struggling to keep on top of it all. But now January is over and we creep towards Spring I'm hoping that by the time the magnolia blooms we might be in a slightly better place. For even though I always put so much hope into the coming of Spring, it really does seem to set things right. It's my restorative time, the season I yearn for the most and when it finally arrives I feel like I can breathe a little lighter, I can start to feel positive and plan for the future a little more again and just be thankful for all that we have. But for now, the shutters are still slightly closed as we put our heads down and just try and get through the next month or so.


Rohan turns two

So it's suddenly here, the day before Rohan's birthday and I'm not going to lie and say I don't find this difficult.

I think it's normal to find the birthday's of your children hard in lots of different ways, I still do with Theo as it's a reminder that they're another year older, another year further from them being your little baby...weep!

But with Rohan as much as I'm so happy to celebrate his birth and two years of him being part of our little family, this time is always tinged with sadness too. I've been quiet over the past few weeks, taking a step back from social media over the holidays, and now too because I find it difficult. I've written here a few times about how I find it hard to not compare myself and Rohan to others, but around this time when there are so many others who were born at a similar time to Rohan celebrating their second birthdays and becoming proper little toddlers, I find it hard to stay positive. So rather than wind myself up and start feeling resentful and angry it's best to just step back.

There is, and probably always will be that element of "that could've and should've been us" of watching other people live through the life that we thought was so clearly laid out for us. Celebrating those baby milestones at more or less the same stages as everyone else. Those first steps, the first words and sentences, the first proper meals, the first bike or scooter ride and all those funny (and sometimes not so funny!) two year old quirks starting to come out. Where as we're stuck in slow motion and non-verbal land.


I also find it strange to be celebrating Rohan's second year. To us and developmentally he is still around one year, so whilst I feel like we're going in slow motion I also feel like some of our time has been taken from us. That first year where we spent so much time in hospital, that newborn stage evaporating into long days surrounded by beeps and whirrs from the many machines, unable to feed or properly hold my tiny baby. When finally we brought him home the rest of the year was spent learning and adjusting how to care for a baby with additional needs, physically and mentally overcoming so much. My only social life consisted of appointments and chatting to nurses and doctors. There were no baby play dates or baby classes or coffee mornings with other mums. When finally I felt a little like we were finding our feet we moved house and in all the commotion and stress that brought we didn't quite realise how thin and then how poorly Rohan became in a matter of weeks. Not long after his first birthday (which I don't think we were quite ready for then either) he was back in hospital and I was living through my biggest fear of not being able to leave once more.


Eventually we did, and since then Rohan has gone from strength to strength. He's learnt and developed so much and his little personality is really coming out now (I do want to do a proper update so I can record things in more detail, so stay tuned!)

We have had a year of firsts, they may not be in line with others his age, but he's hit milestones and we're so proud. I'm proud of what we've achieved too. I've managed to let go more, feel more comfortable in talking to people and being more social. I know I still have a huge way to go in being ok with talking more about Rohan but I know I can do it. This year has been hard, everyday is hard in it's own way, and I know our lives are always going to be different from others, and from how we thought it would be, but that doesn't stop us loving this amazing little boy we have to celebrate.



Rohan I can't believe you are two, but I'm so happy to have had two years of you already! You are  strong, funny, so happy, wilful, cuddly, wriggly, scooting, playful and obsessed with your brother and the cat's food bowl...

Here's a quick look back at your first two years...




Rohan turns two

So it's suddenly here, the day before Rohan's birthday and I'm not going to lie and say I don't find this difficult.

I think it's normal to find the birthday's of your children hard in lots of different ways, I still do with Theo as it's a reminder that they're another year older, another year further from them being your little baby...weep!

But with Rohan as much as I'm so happy to celebrate his birth and two years of him being part of our little family, this time is always tinged with sadness too. I've been quiet over the past few weeks, taking a step back from social media over the holidays, and now too because I find it difficult. I've written here a few times about how I find it hard to not compare myself and Rohan to others, but around this time when there are so many others who were born at a similar time to Rohan celebrating their second birthdays and becoming proper little toddlers, I find it hard to stay positive. So rather than wind myself up and start feeling resentful and angry it's best to just step back.

There is, and probably always will be that element of "that could've and should've been us" of watching other people live through the life that we thought was so clearly laid out for us. Celebrating those baby milestones at more or less the same stages as everyone else. Those first steps, the first words and sentences, the first proper meals, the first bike or scooter ride and all those funny (and sometimes not so funny!) two year old quirks starting to come out. Where as we're stuck in slow motion and non-verbal land.


I also find it strange to be celebrating Rohan's second year. To us and developmentally he is still around one year, so whilst I feel like we're going in slow motion I also feel like some of our time has been taken from us. That first year where we spent so much time in hospital, that newborn stage evaporating into long days surrounded by beeps and whirrs from the many machines, unable to feed or properly hold my tiny baby. When finally we brought him home the rest of the year was spent learning and adjusting how to care for a baby with additional needs, physically and mentally overcoming so much. My only social life consisted of appointments and chatting to nurses and doctors. There were no baby play dates or baby classes or coffee mornings with other mums. When finally I felt a little like we were finding our feet we moved house and in all the commotion and stress that brought we didn't quite realise how thin and then how poorly Rohan became in a matter of weeks. Not long after his first birthday (which I don't think we were quite ready for then either) he was back in hospital and I was living through my biggest fear of not being able to leave once more.


Eventually we did, and since then Rohan has gone from strength to strength. He's learnt and developed so much and his little personality is really coming out now (I do want to do a proper update so I can record things in more detail, so stay tuned!)

We have had a year of firsts, they may not be in line with others his age, but he's hit milestones and we're so proud. I'm proud of what we've achieved too. I've managed to let go more, feel more comfortable in talking to people and being more social. I know I still have a huge way to go in being ok with talking more about Rohan but I know I can do it. This year has been hard, everyday is hard in it's own way, and I know our lives are always going to be different from others, and from how we thought it would be, but that doesn't stop us loving this amazing little boy we have to celebrate.



Rohan I can't believe you are two, but I'm so happy to have had two years of you already! You are  strong, funny, so happy, wilful, cuddly, wriggly, scooting, playful and obsessed with your brother and the cat's food bowl...

Here's a quick look back at your first two years...




When you feel like you're drowning

I feel like there's this feeling that has been building up over the past few weeks, but it feels like it's right there just beneath the surface forcing it's way to the top. I suppose I'm due a big cry at some point as I feel like it's been a while. This is who I am though, I suppress feelings and worries until there's no room left, like a bucket slowly filling with water until it reaches the top. Then I get afraid that it will spill and all the contents will come gushing out and cause a flood. This is my way of dealing with things, and I know every now and then I need to let a little of that water out to ease the weight.

In general things are fine, nothing major has happened. But it's just a slow build up of many things, of my everyday life. The week that has just passed is always a big looming shadow for me, I didn't mark it with words this year almost because I was afraid that if I did something would still happen. It's the week that in the past three years bad things have happened to me and my family. We lost our baby at 11 weeks, which actually is something I don't think I have properly processed or gotten over (if you can ever 'get over' it.) There are still moments in everyday where I wonder how our life would have been, friends with children with the same age gap as there would have been between Theo and this baby. I look at them and wonder if that is how our life could have looked. Except it didn't. It wasn't meant to be, or whatever other bullshit saying you want to apply to the situation. I mourn that baby every day. The could and should have beens. The first experience of loss, and the first opening of my eyes to things not going how you thought they would.

Second of course is when we found out about Rohan's heart condition and the grieving for that pregnancy as we knew it. Of the rest of our lives being changed. Once again it's still not something I have really processed, and I know it will take a long long time. Something switched at that time, and we went into survival mode, and I think we're still there. Take each day as it comes and try not to think too far ahead. But it's tough living like that, I want to relax into the life we have without all the extras we have to think constantly about. I want a guarantee that it will all be ok for once, that there's no need to check up in a month or two. Off you go, forget everything that we said, wake up from this dream you've been having and it will all be back to normal. Except it wont. Sometimes I do wonder if we're somehow living this life that isn't real, the things that are happening to us are just fabricated and that any day now we'll wake up. You know I don't ever wish that Rohan wasn't in our lives, but I just wish it could be easier. I know we love Rohan for who he is, but sometimes who he is is difficult and all the extra things that come with it.

I hate the way I still compare, I still eye roll when people complain about their children having a few bad nights of sleep or minor health complaints. I know it's all relative, but it's like you have no idea. But in reality I wish I was those people, I wish I didn't know all this other side, I wish those were my only complaints. Those people who have known heartbreak through miscarriages but go on to have their perfect rainbow baby, that joy we ourselves were robbed of. That magical baby to replace all the hurt from losing that one, only to open up another huge well of worry, upset and hurt.

I think on the surface I really do try and hold it together, to put a happy spin on things because who wants to constantly hear how hard it is. It's not even that it is hard all the time, in relation to days and weeks that have been really difficult, but I guess compared to normal our days are different. Every trip outside is filled with a little bit of dread that I'll have the have a conversation trying to navigate what the hell I say to people about Rohan. How much detail do I go into, what do I say so I don't put people in an awkward situation. How do I respond when they tell me that their walking talking toddler is actually the same age as Rohan and I have to endure that moments silence as they think "oh". None of this is anyone else's fault, I imagine that I'd be the same, not quite knowing what to say. Those people in the shops who smile and make comments about his 'sweet babbling noises' which to me are a constant reminder that he's not yet making any really attempt at words or recognisable sounds, it's not your fault, you're only trying to be nice but it's hard.

It's difficult to not feel resentful. And guilty. The amount of times I feel so guilty for wishing that Rohan was the same as all the others, that our lives should be different. I feel guilty when I read old blog posts about Theo when he was the same age and I find myself desperately wanting that to be Rohan now. That innocence and joy I felt with Theo, that almost naivety. Maybe there were people reading my posts back then in a situation like I am now, reading my complaints about him not sleeping too well and eye rolling me. Maybe there are people reading this now doing the very same about me complaining about Rohan when we could have it so much worse. I feel guilty for that too.

I know what's caused this build up of overwhelming feelings, I know that I've not been exercising and therefore I've not had that space to process my thoughts a little more. I feel like since I started exercising a lot more regularly earlier this year, I used this space less to figure out all that was going on in my head. I love both processes but I guess there wasn't time for both. I've just had a run of bad luck physically these past few weeks (I broke my toe, hurt my back and then got taken out by a bad cold) and this week I was all ready to get back to it, except suddenly I remembered that Rob was away for the night for work and that I couldn't. Add that to the fact that Rohan has been increasingly clingy and needy these past few weeks and I feel like I've had zero time to myself. It all gets too much. The nights haven't been particularly good either and I just feel like I'm running on empty. I need to take some time back for me, but I haven't had the chance.

So that's where I am. I've actually started having some psychology sessions at home to try and help me work my way through some of these issues and feelings, which I really hope will help. I know that perhaps I need to not be so afraid of letting some of these things out, so I don't get to the point where I feel like I'm drowning or going to over flow, but that's a much bigger step to take.

Now that I've got that off my chest I'm going to go and do some yoga, because man I need it. 

When you feel like you're drowning

I feel like there's this feeling that has been building up over the past few weeks, but it feels like it's right there just beneath the surface forcing it's way to the top. I suppose I'm due a big cry at some point as I feel like it's been a while. This is who I am though, I suppress feelings and worries until there's no room left, like a bucket slowly filling with water until it reaches the top. Then I get afraid that it will spill and all the contents will come gushing out and cause a flood. This is my way of dealing with things, and I know every now and then I need to let a little of that water out to ease the weight.

In general things are fine, nothing major has happened. But it's just a slow build up of many things, of my everyday life. The week that has just passed is always a big looming shadow for me, I didn't mark it with words this year almost because I was afraid that if I did something would still happen. It's the week that in the past three years bad things have happened to me and my family. We lost our baby at 11 weeks, which actually is something I don't think I have properly processed or gotten over (if you can ever 'get over' it.) There are still moments in everyday where I wonder how our life would have been, friends with children with the same age gap as there would have been between Theo and this baby. I look at them and wonder if that is how our life could have looked. Except it didn't. It wasn't meant to be, or whatever other bullshit saying you want to apply to the situation. I mourn that baby every day. The could and should have beens. The first experience of loss, and the first opening of my eyes to things not going how you thought they would.

Second of course is when we found out about Rohan's heart condition and the grieving for that pregnancy as we knew it. Of the rest of our lives being changed. Once again it's still not something I have really processed, and I know it will take a long long time. Something switched at that time, and we went into survival mode, and I think we're still there. Take each day as it comes and try not to think too far ahead. But it's tough living like that, I want to relax into the life we have without all the extras we have to think constantly about. I want a guarantee that it will all be ok for once, that there's no need to check up in a month or two. Off you go, forget everything that we said, wake up from this dream you've been having and it will all be back to normal. Except it wont. Sometimes I do wonder if we're somehow living this life that isn't real, the things that are happening to us are just fabricated and that any day now we'll wake up. You know I don't ever wish that Rohan wasn't in our lives, but I just wish it could be easier. I know we love Rohan for who he is, but sometimes who he is is difficult and all the extra things that come with it.

I hate the way I still compare, I still eye roll when people complain about their children having a few bad nights of sleep or minor health complaints. I know it's all relative, but it's like you have no idea. But in reality I wish I was those people, I wish I didn't know all this other side, I wish those were my only complaints. Those people who have known heartbreak through miscarriages but go on to have their perfect rainbow baby, that joy we ourselves were robbed of. That magical baby to replace all the hurt from losing that one, only to open up another huge well of worry, upset and hurt.

I think on the surface I really do try and hold it together, to put a happy spin on things because who wants to constantly hear how hard it is. It's not even that it is hard all the time, in relation to days and weeks that have been really difficult, but I guess compared to normal our days are different. Every trip outside is filled with a little bit of dread that I'll have the have a conversation trying to navigate what the hell I say to people about Rohan. How much detail do I go into, what do I say so I don't put people in an awkward situation. How do I respond when they tell me that their walking talking toddler is actually the same age as Rohan and I have to endure that moments silence as they think "oh". None of this is anyone else's fault, I imagine that I'd be the same, not quite knowing what to say. Those people in the shops who smile and make comments about his 'sweet babbling noises' which to me are a constant reminder that he's not yet making any really attempt at words or recognisable sounds, it's not your fault, you're only trying to be nice but it's hard.

It's difficult to not feel resentful. And guilty. The amount of times I feel so guilty for wishing that Rohan was the same as all the others, that our lives should be different. I feel guilty when I read old blog posts about Theo when he was the same age and I find myself desperately wanting that to be Rohan now. That innocence and joy I felt with Theo, that almost naivety. Maybe there were people reading my posts back then in a situation like I am now, reading my complaints about him not sleeping too well and eye rolling me. Maybe there are people reading this now doing the very same about me complaining about Rohan when we could have it so much worse. I feel guilty for that too.

I know what's caused this build up of overwhelming feelings, I know that I've not been exercising and therefore I've not had that space to process my thoughts a little more. I feel like since I started exercising a lot more regularly earlier this year, I used this space less to figure out all that was going on in my head. I love both processes but I guess there wasn't time for both. I've just had a run of bad luck physically these past few weeks (I broke my toe, hurt my back and then got taken out by a bad cold) and this week I was all ready to get back to it, except suddenly I remembered that Rob was away for the night for work and that I couldn't. Add that to the fact that Rohan has been increasingly clingy and needy these past few weeks and I feel like I've had zero time to myself. It all gets too much. The nights haven't been particularly good either and I just feel like I'm running on empty. I need to take some time back for me, but I haven't had the chance.

So that's where I am. I've actually started having some psychology sessions at home to try and help me work my way through some of these issues and feelings, which I really hope will help. I know that perhaps I need to not be so afraid of letting some of these things out, so I don't get to the point where I feel like I'm drowning or going to over flow, but that's a much bigger step to take.

Now that I've got that off my chest I'm going to go and do some yoga, because man I need it. 

More thoughts on developmental delay

It's strange, I've had two reoccurring dreams recently where I've dreamt Rohan has taken his first steps and said his first word (cuddle!) It felt so real and normal that I had to remind myself when I woke up that we're not quite there yet. It's frustrating because it just looks like it should be so easy (it's not, I know) and I have to try and stop myself comparing to how Theo was, or babies born nearly a year after him. I know he's doing amazingly well, and I'm so thankful for that, because we work hard with him so it's good to see some progress but sometimes it's just hard to stop yourself wondering.

He's still attempting his crawling, which is great, but it's definitely not as straight forward and linear as usual development. He seems to go back and forth with his abilities, one day doing well with moving (currently it seems he's favouring the commando style pulling himself along) and the next not so much. It's like every process is played in super slow motion, what would take a "normal" baby perhaps a few weeks to learn and progress takes Rohan months, if not nearly a year. So whilst his attempts at crawling are amazing, and believe me I'm over the moon, sometimes it's hard to remember that he still probably won't be properly crawling or moving before he's nearly two. It's hard because he's getting frustrated too.


I feel like I just want him to be able to join in more, we have to carry him or place him on the ground (and at 10kg+ this is getting pretty heavy!) and he's just so active, he doesn't want to be held, he wants to be on the ground, but when you get him there he just sort of gets stuck. He has to work so hard that he just gets tired, then frustrated, so we pick him up and then we start the whole process over again. I know that perhaps when he does eventually get moving I may be cursing and wishing for a time when it was easier to keep him in one place, but you know, grass is always greener!

I also find myself imagining what our daily scenes would look like if Rohan was following the "normal" development track. How would his and Theo's relationship be? Would he be able to join in more, climbing, racing around, speaking a few words and communicating more? Would they be able to play together more? I catch myself a lot of the time just thinking what would it be like if it all just went a different way, the way we had planned. What would our lives really look like. It just takes me back time and time again to the feeling of why us.


I longed for this baby for so long, and always slightly regretted not having children closer together. I think too often of how our lives would look if our miscarried baby had made it, how our days would be with a almost 2 and a half year old in them. How would Theo have been if he'd been made a brother a year earlier? I feel guilty for that, for not being able to give him a sibling sooner, or a sibling who could play with him more. That's not to say that they don't play together, because they do, and love each other dearly and I wouldn't change that. Theo gets so involved and is constantly talking about Rohan reaching his next 'target' and it's very sweet. But I do wonder at how much Theo realises that things are different, I wonder if he looks at other siblings and thinks that is how his life should look, or whether actually he just takes things for how they are and gets on with them. Maybe I should be doing this more?

I know we have so much to be thankful for too, that we have another child, that others suffer more and that our daily lives are thankfully pretty "normal" looking. But sometimes the what ifs just get the better of you.


More thoughts on developmental delay

It's strange, I've had two reoccurring dreams recently where I've dreamt Rohan has taken his first steps and said his first word (cuddle!) It felt so real and normal that I had to remind myself when I woke up that we're not quite there yet. It's frustrating because it just looks like it should be so easy (it's not, I know) and I have to try and stop myself comparing to how Theo was, or babies born nearly a year after him. I know he's doing amazingly well, and I'm so thankful for that, because we work hard with him so it's good to see some progress but sometimes it's just hard to stop yourself wondering.

He's still attempting his crawling, which is great, but it's definitely not as straight forward and linear as usual development. He seems to go back and forth with his abilities, one day doing well with moving (currently it seems he's favouring the commando style pulling himself along) and the next not so much. It's like every process is played in super slow motion, what would take a "normal" baby perhaps a few weeks to learn and progress takes Rohan months, if not nearly a year. So whilst his attempts at crawling are amazing, and believe me I'm over the moon, sometimes it's hard to remember that he still probably won't be properly crawling or moving before he's nearly two. It's hard because he's getting frustrated too.


I feel like I just want him to be able to join in more, we have to carry him or place him on the ground (and at 10kg+ this is getting pretty heavy!) and he's just so active, he doesn't want to be held, he wants to be on the ground, but when you get him there he just sort of gets stuck. He has to work so hard that he just gets tired, then frustrated, so we pick him up and then we start the whole process over again. I know that perhaps when he does eventually get moving I may be cursing and wishing for a time when it was easier to keep him in one place, but you know, grass is always greener!

I also find myself imagining what our daily scenes would look like if Rohan was following the "normal" development track. How would his and Theo's relationship be? Would he be able to join in more, climbing, racing around, speaking a few words and communicating more? Would they be able to play together more? I catch myself a lot of the time just thinking what would it be like if it all just went a different way, the way we had planned. What would our lives really look like. It just takes me back time and time again to the feeling of why us.


I longed for this baby for so long, and always slightly regretted not having children closer together. I think too often of how our lives would look if our miscarried baby had made it, how our days would be with a almost 2 and a half year old in them. How would Theo have been if he'd been made a brother a year earlier? I feel guilty for that, for not being able to give him a sibling sooner, or a sibling who could play with him more. That's not to say that they don't play together, because they do, and love each other dearly and I wouldn't change that. Theo gets so involved and is constantly talking about Rohan reaching his next 'target' and it's very sweet. But I do wonder at how much Theo realises that things are different, I wonder if he looks at other siblings and thinks that is how his life should look, or whether actually he just takes things for how they are and gets on with them. Maybe I should be doing this more?

I know we have so much to be thankful for too, that we have another child, that others suffer more and that our daily lives are thankfully pretty "normal" looking. But sometimes the what ifs just get the better of you.


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.



The mourning of the baby years

I've been feeling this growing sense of sadness over the past few months. It's like a weight on my chest. Yes things have been stressful around here of late but I guess sometimes your emotions have a funny way of catching you out. I've tried to speak about it with a few people but it just catches me out, the sadness threatening to overspill and I have to stop.

It's a strange sadness, a mourning almost, it's happy but nostalgic. It's a sense of loss but of losing something that is still there right in front of you, not quite gone but never coming back. My heart has been aching for all those years that have sped by so unforgivingly, to be left with rose tinted memories and cherished moments. I feel guilty when I admit this, but I miss the time of me and him.

I don't ever wish that Rohan wasn't here with us, part of our family and so dear, my love for him is untainted by these feelings and the joy of him being here outweighs these feelings of sadness. But those emotions are here all the same.

I just found myself searching through old photographs and hot tears fell down my cheeks, as I scrolled through each photo it feeling as quick as the years passing themselves, Theo's childhood flashing before my eyes and me failing to keep up. I feel we're on the cusp of a big change, the next cycle and the true goodbye to those innocent years of childhood. Already I can see other people starting to weave their way into his being; his language, his thoughts, his influences. I feel each day a subtle change, and whilst I admire his independence and in-take of his world, soaking up information and forming his own ideas, I feel my own influence waning. I miss those years where he was just mine.

I know that you can never own a child, they are yours only to guide, not to control. He is, and always has been his own person in his own right but I feel like I'm handing some of that responsibility over and I'm not ready. I'm not ready for our special bond to be widened, even though it already has. He will always be my first born, the one who changed me and whilst I know that will never change, I know too now how quickly it slips through your fingers. It makes me fear for the future, for blinking and another five years has been and gone and left a new person in it's wake. Time is cruel and forever the saying "the days are long but the years are short" plays through my head. I know looking back it's easy to think how easy it was, how joyous the days were when I know that in truth it wasn't.

I didn't find it easy and I didn't enjoy it all, but now I long to step back in time, to spend one more day with a baby Theo, a two, three, four year old. To have his little hand creep into mine, to spend the afternoon curled together on the sofa watching another Thomas the tank engine and him squeal out the names of his favourite trains, to pack up a bag and head out for an adventure lasting all day, to watch him learn to leap without fear off objects onto the bed or into our arms. I miss the baby giggles and the big open mouth kisses. I miss the feel of his little body curled against mine as we co slept, I miss just having my little side-kick, my friend and the time of just me and him.

I love Theo now in all his growing up glory, his new adult teeth, his reading, his excitement for new crazes, his ideas. But now I know that this too will feel so long ago so soon. I feel torn when encouraging him to do things for himself, with the knowledge that he won't need me for all those little things anymore, it's like I've become to conscious of time passing and I'm clutching at moments before they too have passed to just memories. I don't want to go on like this, scared for change and the future. I can't wait to see him grow further, to experience all that comes with an older child and to carry on watching him bloom as an older brother. I don't know why just now this has all crept up on me, this feeling of loss and grief. Maybe I will always feel like this, my baby, my first, that attachment never quite lessening. I know he still needs me now, and I try my hardest to be there for him in return.

The other day we were chatting and he told me that sometimes he feels like I don't have as much time to do things with him because I am with Rohan, and whilst my heart broke I told him that we were so lucky that we had five years together just us, and Rohan will always have to share me. He then said like your love, we have to share your love. So I explained (whilst we were eating an Easter egg) that when Rohan was born my love for Rohan didn't split his easter egg in half, to be shared, that in fact Rohan has a whole new Easter egg, and Theo's remained intact. Both the same.  I hope he knows how much I love him, how much I cherish those years we had and how much I want to give more time to him now if I had it. I am trying to be present for him, to make more time to play a game one on one or chat because I know, even if it's for five or ten minutes, that it makes a difference. To us both.

I know too that I have another chance to experience childhood again through Rohan, however different it may be. Life with Rohan seems to be going in slow motion too, I get to keep him as my baby for a little longer.

Agh motherhood, why are you so bittersweet, so full of absolute joy that in turn, one day will make you feel wretched all over again.

The days are long, but the years are short. Don't I know it.


The mourning of the baby years

I've been feeling this growing sense of sadness over the past few months. It's like a weight on my chest. Yes things have been stressful around here of late but I guess sometimes your emotions have a funny way of catching you out. I've tried to speak about it with a few people but it just catches me out, the sadness threatening to overspill and I have to stop.

It's a strange sadness, a mourning almost, it's happy but nostalgic. It's a sense of loss but of losing something that is still there right in front of you, not quite gone but never coming back. My heart has been aching for all those years that have sped by so unforgivingly, to be left with rose tinted memories and cherished moments. I feel guilty when I admit this, but I miss the time of me and him.

I don't ever wish that Rohan wasn't here with us, part of our family and so dear, my love for him is untainted by these feelings and the joy of him being here outweighs these feelings of sadness. But those emotions are here all the same.

I just found myself searching through old photographs and hot tears fell down my cheeks, as I scrolled through each photo it feeling as quick as the years passing themselves, Theo's childhood flashing before my eyes and me failing to keep up. I feel we're on the cusp of a big change, the next cycle and the true goodbye to those innocent years of childhood. Already I can see other people starting to weave their way into his being; his language, his thoughts, his influences. I feel each day a subtle change, and whilst I admire his independence and in-take of his world, soaking up information and forming his own ideas, I feel my own influence waning. I miss those years where he was just mine.

I know that you can never own a child, they are yours only to guide, not to control. He is, and always has been his own person in his own right but I feel like I'm handing some of that responsibility over and I'm not ready. I'm not ready for our special bond to be widened, even though it already has. He will always be my first born, the one who changed me and whilst I know that will never change, I know too now how quickly it slips through your fingers. It makes me fear for the future, for blinking and another five years has been and gone and left a new person in it's wake. Time is cruel and forever the saying "the days are long but the years are short" plays through my head. I know looking back it's easy to think how easy it was, how joyous the days were when I know that in truth it wasn't.

I didn't find it easy and I didn't enjoy it all, but now I long to step back in time, to spend one more day with a baby Theo, a two, three, four year old. To have his little hand creep into mine, to spend the afternoon curled together on the sofa watching another Thomas the tank engine and him squeal out the names of his favourite trains, to pack up a bag and head out for an adventure lasting all day, to watch him learn to leap without fear off objects onto the bed or into our arms. I miss the baby giggles and the big open mouth kisses. I miss the feel of his little body curled against mine as we co slept, I miss just having my little side-kick, my friend and the time of just me and him.

I love Theo now in all his growing up glory, his new adult teeth, his reading, his excitement for new crazes, his ideas. But now I know that this too will feel so long ago so soon. I feel torn when encouraging him to do things for himself, with the knowledge that he won't need me for all those little things anymore, it's like I've become to conscious of time passing and I'm clutching at moments before they too have passed to just memories. I don't want to go on like this, scared for change and the future. I can't wait to see him grow further, to experience all that comes with an older child and to carry on watching him bloom as an older brother. I don't know why just now this has all crept up on me, this feeling of loss and grief. Maybe I will always feel like this, my baby, my first, that attachment never quite lessening. I know he still needs me now, and I try my hardest to be there for him in return.

The other day we were chatting and he told me that sometimes he feels like I don't have as much time to do things with him because I am with Rohan, and whilst my heart broke I told him that we were so lucky that we had five years together just us, and Rohan will always have to share me. He then said like your love, we have to share your love. So I explained (whilst we were eating an Easter egg) that when Rohan was born my love for Rohan didn't split his easter egg in half, to be shared, that in fact Rohan has a whole new Easter egg, and Theo's remained intact. Both the same.  I hope he knows how much I love him, how much I cherish those years we had and how much I want to give more time to him now if I had it. I am trying to be present for him, to make more time to play a game one on one or chat because I know, even if it's for five or ten minutes, that it makes a difference. To us both.

I know too that I have another chance to experience childhood again through Rohan, however different it may be. Life with Rohan seems to be going in slow motion too, I get to keep him as my baby for a little longer.

Agh motherhood, why are you so bittersweet, so full of absolute joy that in turn, one day will make you feel wretched all over again.

The days are long, but the years are short. Don't I know it.


Not just a syndrome


Last week I had a meeting with a psychologist to talk through how I was feeling about everything that has happened.

When Rohan was first born and in the hospital we both spoke to a councillor about what we were going through and she was there to guide us through those first terrible weeks when we were just existing, not living. Our thoughts were on being split between two children, the unknown of the situation we had found ourselves in, the guilt, the worry for the future, the worry that we were terrible people for wishing it could be another way. She was there on the day after we did research into his potential syndrome, where the grief and realisation started to go beneath the surface and I let in sink in a little. I was afraid to let it in, afraid I'd fall down so much I wouldn't be able to get back up again, that I'd feel this heaviness and pressure in my chest forever. I spent the whole day crying, holding Rohan's hand in his little cot. But I managed to talk, to share my inner most fears, say the things I thought I could never say out loud to anyone else, and it made me feel better. This session with the psychologist this time wasn't as dramatic, but it did feel like a breakthrough. It gave me perspective and also a resolve to practical problems I was facing.

Over the last few months since Rohan came home and we gradually shed the equipment he needed in the day and life went back to relative normal I've been finding certain things difficult. On a day to day level I feel like I've accepted our life now, we've adjusted to having a baby in our lives once more and all the extra care we have to give Rohan has just become second nature. Of course not having to have the oxygen to take around with us, the ng tube to feed with and him in leg casts has made it so much easier, and I wouldn't wish to go back to how it was but also perhaps it's made other things more difficult.


In a way having these extras made it easier for people to see that something was different, that there was a reason for the way Rohan was that was easily distinguishable to outsiders. I gave me something to hide behind, to not have to explain fully and perhaps stood as an indicator that not everything had gone the way it should have, and the we were not having the normal experience. I don't know why I found this difficult. I wanted more than anything to appear normal, to not stand out but at the same time I found it uncomfortable that other people we're living this life we thought we would have, but weren't. It hurt me to hear about people complaining about normal issues with a baby, it made me think "you have no idea" and "you should be grateful for all you have" that these issues were their only ones. Having all of Rohan's extras was like a badge and a shield for those emotions, it was obvious our journey wasn't the same. I know it's not anyone's fault for voicing their own problems, and in a way things aren't always what they seem, I will never know everyone's back story. They may have their own battles going on and that's just something I have needed to accept.

I've always suffered somewhat from social anxiety and I feel it's just got worse recently. I worry about how I'm going to appear, over analyse what I've said or done and I'm just afraid of making a fool of myself. I really struggle with making conversation, small talk and putting myself out there. This all contributes to my struggles with Rohan. I feel like perhaps I have accepted parts of what has happened, but I find it difficult to really identify with a lot of other things. You may notice that I don't speak often of the particular syndrome that Rohan has, it's not something I really name out loud or go around talking about. When talking about it I'll more often than not just say he has a genetic syndrome and leave it at that. Perhaps because it's a fairly obscure one that people won't have heard of it before anyway, but also partly because giving it a name is scary. I don't feel ready to identify with it just yet.


I've really struggled with social situations and knowing what to do or say about all that has happened. To people who know us and our story well, I can talk about it, and of course on the internet I feel freer to discuss it and share our journey, but in real life I can't. I just feel I don't know what to say. Now, like I mentioned before, that Rohan doesn't have any of the extra equipment that identifies something I feel like it's all down to me to explain but I don't feel comfortable. If I was to take him to a baby group it would be obvious that things were different. He's ten months old and can't yet sit unaided and he's tiny, so when people ask his age and I say, I can always see a moment of slight shock and questioning. Then I know it's my cue to explain more, but sometimes I just can't. I know I don't have to, but I also know that if I want people to understand what's going on, and to spread acceptance and understanding that sometimes things can be different then I need to explain. I want it to be ok, I want to feel like I can go to any regular baby group and meet other parents and be accepted, but I just feel too different. I'm not sure whether it will ever be the same, and I know I won't really be able to blend in in regular groups or places and again that's something that I just need to accept and will hopefully happen over time. I just need to find the right environment for both Rohan and I to socialise and feel comfortable.

But there is also something else that I talked about with the psychologist, and that is that I don't have to introduce Rohan as a syndrome, because that's not all he is. I get that it helps people to identify with other people who have the same thing and I think it holds so much value, but I know that's not all he is. I think this is part of the reason that I don't name what he has so much, because to us he's just Rohan. He has his own personality, yes he has this syndrome and characteristics, but he is his own little person also. On a day to day basis in our little bubble that is all we know and it's easy to put all the wider problems to the back of your mind. I think a little it stems from our time in hospital where we'd be spending most of the day with our new baby, trying to bond and learn about who he was to then overhear the doctors on their ward rounds talk about him just as a list of medical problems and not a human being or a tiny baby. In the end I would usually remove myself around this time and just wait to hear any news when it was told to us specifically. I know that everyone is different in these situations and for some people finding out and hearing all the medical side really helps, but for me not so much.


So instead of feeling like I need to explain our situation and to introduce Rohan as the name of his syndrome I can instead focus on all the things that make him him. I will of course when needed explain a little more, but for now I feel like it's important to view him as more than just a name. I'd love to become a bit more of an advocate for this sort of thing, to stand up and show that living with a child who may be different from the norm can be difficult yes, but so rewarding in many ways. To integrate more and perhaps change the way we view babies and children with these sorts of things, to make that conversation easier to have. I know I have a long way to go in myself before these things can happen, but I think that the first step is by being open and proud of who Rohan is, despite and because of all that he has going on. And raise him as Rohan and not just his syndrome.


Not just a syndrome


Last week I had a meeting with a psychologist to talk through how I was feeling about everything that has happened.

When Rohan was first born and in the hospital we both spoke to a councillor about what we were going through and she was there to guide us through those first terrible weeks when we were just existing, not living. Our thoughts were on being split between two children, the unknown of the situation we had found ourselves in, the guilt, the worry for the future, the worry that we were terrible people for wishing it could be another way. She was there on the day after we did research into his potential syndrome, where the grief and realisation started to go beneath the surface and I let in sink in a little. I was afraid to let it in, afraid I'd fall down so much I wouldn't be able to get back up again, that I'd feel this heaviness and pressure in my chest forever. I spent the whole day crying, holding Rohan's hand in his little cot. But I managed to talk, to share my inner most fears, say the things I thought I could never say out loud to anyone else, and it made me feel better. This session with the psychologist this time wasn't as dramatic, but it did feel like a breakthrough. It gave me perspective and also a resolve to practical problems I was facing.

Over the last few months since Rohan came home and we gradually shed the equipment he needed in the day and life went back to relative normal I've been finding certain things difficult. On a day to day level I feel like I've accepted our life now, we've adjusted to having a baby in our lives once more and all the extra care we have to give Rohan has just become second nature. Of course not having to have the oxygen to take around with us, the ng tube to feed with and him in leg casts has made it so much easier, and I wouldn't wish to go back to how it was but also perhaps it's made other things more difficult.


In a way having these extras made it easier for people to see that something was different, that there was a reason for the way Rohan was that was easily distinguishable to outsiders. I gave me something to hide behind, to not have to explain fully and perhaps stood as an indicator that not everything had gone the way it should have, and the we were not having the normal experience. I don't know why I found this difficult. I wanted more than anything to appear normal, to not stand out but at the same time I found it uncomfortable that other people we're living this life we thought we would have, but weren't. It hurt me to hear about people complaining about normal issues with a baby, it made me think "you have no idea" and "you should be grateful for all you have" that these issues were their only ones. Having all of Rohan's extras was like a badge and a shield for those emotions, it was obvious our journey wasn't the same. I know it's not anyone's fault for voicing their own problems, and in a way things aren't always what they seem, I will never know everyone's back story. They may have their own battles going on and that's just something I have needed to accept.

I've always suffered somewhat from social anxiety and I feel it's just got worse recently. I worry about how I'm going to appear, over analyse what I've said or done and I'm just afraid of making a fool of myself. I really struggle with making conversation, small talk and putting myself out there. This all contributes to my struggles with Rohan. I feel like perhaps I have accepted parts of what has happened, but I find it difficult to really identify with a lot of other things. You may notice that I don't speak often of the particular syndrome that Rohan has, it's not something I really name out loud or go around talking about. When talking about it I'll more often than not just say he has a genetic syndrome and leave it at that. Perhaps because it's a fairly obscure one that people won't have heard of it before anyway, but also partly because giving it a name is scary. I don't feel ready to identify with it just yet.


I've really struggled with social situations and knowing what to do or say about all that has happened. To people who know us and our story well, I can talk about it, and of course on the internet I feel freer to discuss it and share our journey, but in real life I can't. I just feel I don't know what to say. Now, like I mentioned before, that Rohan doesn't have any of the extra equipment that identifies something I feel like it's all down to me to explain but I don't feel comfortable. If I was to take him to a baby group it would be obvious that things were different. He's ten months old and can't yet sit unaided and he's tiny, so when people ask his age and I say, I can always see a moment of slight shock and questioning. Then I know it's my cue to explain more, but sometimes I just can't. I know I don't have to, but I also know that if I want people to understand what's going on, and to spread acceptance and understanding that sometimes things can be different then I need to explain. I want it to be ok, I want to feel like I can go to any regular baby group and meet other parents and be accepted, but I just feel too different. I'm not sure whether it will ever be the same, and I know I won't really be able to blend in in regular groups or places and again that's something that I just need to accept and will hopefully happen over time. I just need to find the right environment for both Rohan and I to socialise and feel comfortable.

But there is also something else that I talked about with the psychologist, and that is that I don't have to introduce Rohan as a syndrome, because that's not all he is. I get that it helps people to identify with other people who have the same thing and I think it holds so much value, but I know that's not all he is. I think this is part of the reason that I don't name what he has so much, because to us he's just Rohan. He has his own personality, yes he has this syndrome and characteristics, but he is his own little person also. On a day to day basis in our little bubble that is all we know and it's easy to put all the wider problems to the back of your mind. I think a little it stems from our time in hospital where we'd be spending most of the day with our new baby, trying to bond and learn about who he was to then overhear the doctors on their ward rounds talk about him just as a list of medical problems and not a human being or a tiny baby. In the end I would usually remove myself around this time and just wait to hear any news when it was told to us specifically. I know that everyone is different in these situations and for some people finding out and hearing all the medical side really helps, but for me not so much.


So instead of feeling like I need to explain our situation and to introduce Rohan as the name of his syndrome I can instead focus on all the things that make him him. I will of course when needed explain a little more, but for now I feel like it's important to view him as more than just a name. I'd love to become a bit more of an advocate for this sort of thing, to stand up and show that living with a child who may be different from the norm can be difficult yes, but so rewarding in many ways. To integrate more and perhaps change the way we view babies and children with these sorts of things, to make that conversation easier to have. I know I have a long way to go in myself before these things can happen, but I think that the first step is by being open and proud of who Rohan is, despite and because of all that he has going on. And raise him as Rohan and not just his syndrome.


When you feel like you're failing

I woke up in the middle of the night the other night, and after trying to some what unsuccessfully feed Rohan I lay awake annoyed and unable to get back to sleep. My mind was just whirring with so many thoughts which were mainly, as so often they are, about all the things I needed to do or thought I should've done. I woke up the next morning (after finally falling asleep!) feeling a bit like I'm failing and with a to do list as long as my arm. I know I shouldn't put this pressure on myself, and that actually what we have on our plate is enough already but somehow it makes me feel like I need to be doing more.

Like this blog for example, I love this little space and really want to use it to document our journey, write out silly thoughts and share photographs of our adventures and I feel like it's been somewhat neglected over the past few months. I don't want to give it up, and whilst I know it's never going to be my career or a money maker (not that I want it to be) I feel like I'm somehow letting my readers down, putting off people who would want to possibly work with me and generally being behind on any projects I've agreed to do or want to do. I know it's not really a big deal but this blog has been here since the beginning, before Theo was born and all the way through. It's helped me immensely get through different things, and I just feel like I'm way too invested to stop writing.


I remember having a bit of a wobble around this time with Theo. Six months of having a new baby and having to readjust your life and get into a new routine is hard enough when everything is relatively straightforward, but as you know things most definitely have not been straightforward. I really want to be able to keep up with everything I want to do, but whenever things are hard the blog and my social media are the first things to go, even though I do find them supportive and a great outlet. I just find it hard to actually get the time to sit down and do it, to take and edit photos, to plan and write posts and to reply to comments and read other blogs too. So whilst Rohan sleeps most of the night (thankfully) he doesn't really nap for longer than half an hour in the day, which I use to eat, do the washing or shove the hoover around, that's if he hasn't fallen asleep on me! Then there's all the feeding, which is every hour or two and the sterilising of bottles, add that to appointments we have to go to, the school run and then of course making and spending time with Theo - playing or helping him read etc. I know most of this is completely normal when you've just had another baby, but I just feel like sometimes I should be doing more, which I know is completely crazy. I hate this weird pressure that there is for your blog to be successful and for your stats to be consistent, and in reality I know none of that stuff matters but I really wish I could remind myself that and try not to care.

This isn't an attack on people who write blogs as their job, that's great, and I know how much work does go into it, but sometimes I hate the pressure of just because you have a blog you should instantly be making money out of it. I don't think my blog is particularly 'sellable' as perhaps it's quite personal and I use it as my diary to write down my thoughts and worries, and document our journey. I do of course like working with different companies when relevant, but I just worry about that balance. I hate letting people down too, but sometimes it's just hard when real life gets in the way.

This wasn't really supposed to be a whole post about losing my way with blogging, just more of an explaination that I'm finding it hard to keep all the balls that I'm juggling up in the air. Having two children is hard, let alone one with additional needs and sometimes something has to give. I'm not saying that I'm stopping, just perhaps that, as you may already have guessed from my lack of posts, I might not be around here as much as I'd like. Sometimes it feels like the longer I leave it the pressure to post builds up and up and I feel like I can't just pop on here with a little post about some skincare products I've been using without a big explanation of why it's been quiet first. If you get me?!

Woah this is rambly for sure, and I apologise but I just felt like I needed to get that off my chest. Sometimes all I want to do is sit down in the evening with Rob when Theo's gone to sleep, watch some telly and get an early night. Then another week goes by and nothing has been posted.

When you feel like you're failing

I woke up in the middle of the night the other night, and after trying to some what unsuccessfully feed Rohan I lay awake annoyed and unable to get back to sleep. My mind was just whirring with so many thoughts which were mainly, as so often they are, about all the things I needed to do or thought I should've done. I woke up the next morning (after finally falling asleep!) feeling a bit like I'm failing and with a to do list as long as my arm. I know I shouldn't put this pressure on myself, and that actually what we have on our plate is enough already but somehow it makes me feel like I need to be doing more.

Like this blog for example, I love this little space and really want to use it to document our journey, write out silly thoughts and share photographs of our adventures and I feel like it's been somewhat neglected over the past few months. I don't want to give it up, and whilst I know it's never going to be my career or a money maker (not that I want it to be) I feel like I'm somehow letting my readers down, putting off people who would want to possibly work with me and generally being behind on any projects I've agreed to do or want to do. I know it's not really a big deal but this blog has been here since the beginning, before Theo was born and all the way through. It's helped me immensely get through different things, and I just feel like I'm way too invested to stop writing.


I remember having a bit of a wobble around this time with Theo. Six months of having a new baby and having to readjust your life and get into a new routine is hard enough when everything is relatively straightforward, but as you know things most definitely have not been straightforward. I really want to be able to keep up with everything I want to do, but whenever things are hard the blog and my social media are the first things to go, even though I do find them supportive and a great outlet. I just find it hard to actually get the time to sit down and do it, to take and edit photos, to plan and write posts and to reply to comments and read other blogs too. So whilst Rohan sleeps most of the night (thankfully) he doesn't really nap for longer than half an hour in the day, which I use to eat, do the washing or shove the hoover around, that's if he hasn't fallen asleep on me! Then there's all the feeding, which is every hour or two and the sterilising of bottles, add that to appointments we have to go to, the school run and then of course making and spending time with Theo - playing or helping him read etc. I know most of this is completely normal when you've just had another baby, but I just feel like sometimes I should be doing more, which I know is completely crazy. I hate this weird pressure that there is for your blog to be successful and for your stats to be consistent, and in reality I know none of that stuff matters but I really wish I could remind myself that and try not to care.

This isn't an attack on people who write blogs as their job, that's great, and I know how much work does go into it, but sometimes I hate the pressure of just because you have a blog you should instantly be making money out of it. I don't think my blog is particularly 'sellable' as perhaps it's quite personal and I use it as my diary to write down my thoughts and worries, and document our journey. I do of course like working with different companies when relevant, but I just worry about that balance. I hate letting people down too, but sometimes it's just hard when real life gets in the way.

This wasn't really supposed to be a whole post about losing my way with blogging, just more of an explaination that I'm finding it hard to keep all the balls that I'm juggling up in the air. Having two children is hard, let alone one with additional needs and sometimes something has to give. I'm not saying that I'm stopping, just perhaps that, as you may already have guessed from my lack of posts, I might not be around here as much as I'd like. Sometimes it feels like the longer I leave it the pressure to post builds up and up and I feel like I can't just pop on here with a little post about some skincare products I've been using without a big explanation of why it's been quiet first. If you get me?!

Woah this is rambly for sure, and I apologise but I just felt like I needed to get that off my chest. Sometimes all I want to do is sit down in the evening with Rob when Theo's gone to sleep, watch some telly and get an early night. Then another week goes by and nothing has been posted.