04 - The Quiet Weight of Anticipatory Grief

💛 Navigating loss before, during, and after

Grief doesn’t begin the day your child dies. For many of us, it begins the moment we hear a diagnosis - and it never fully ends.

In this raw and unfiltered episode, I open up about the many layers of grief I’ve lived through as a medical mum: from the moment we were told our daughter had MLD, through her rapid deterioration, and the anticipatory grief that followed us like a shadow for years.

I talk about what it really means to grieve a child who’s still here, how guilt and judgement show up in the smallest of moments, and why prioritising our own wellbeing isn’t selfish - it’s essential. I also share how our daughter’s passing unfolded, what grief feels like in the days, weeks, and years after, and how I’m still learning to live with it every single day.

If you’re walking a similar path, I hope this episode helps you feel less alone — and gently reminds you that there’s no wrong way to grieve.

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Transcript

Hello my lovelies and welcome. My name is Leah and I am the founder of Bravely Together. This is my six-part mini series for mums who are navigating the most unimaginable thing that any parent can face and that is being told that your child has a life-limiting condition, has complex medical needs or any additional care needs really that just adds to that level of care that our children require from us. 

So today is episode four and I'm really going to be talking a lot about grief and the different layers to that and I'm going to try and be really super honest about it all and the way I felt throughout this journey and so this may resonate really deeply with some of you and for others it may not and that's absolutely fine because grief is such a personal journey and I don't believe that there is any right or wrong way to navigate that. So I'm going to start by talking about when we received my daughter's diagnosis because that was really the first time that I even contemplated that what we were going to be dealing with was something that was going to actually take her away from us forever. Before that I just thought that this was just going to be an ongoing thing and that she was just going to require an extra level of care from me for the rest of her life potentially.

Obviously that was the case but her life was limited massively and when we went into that appointment to be told the final diagnosis and exactly what that diagnosis was and what that meant I really wasn't prepared to be told that my daughter was going to die and so trying to remember that appointment and what was discussed is obviously quite difficult. I do remember it but I also remember it being a blur because obviously it was a very traumatic experience for me and my husband. We were told the name of the condition and the condition that my daughter was diagnosed with was metachromatic leukodystrophy otherwise known as MLD for short which I will use that abbreviation going forward and MLD is a rare genetic condition that affects children from around the age of two and their life expectancy is around the age of five or six or two to three years from diagnosis but that is not solid truth. 

I know a lot of children that are still living really great lives considering everything they are going through and they have surpassed the age of five years old so this is not true for everybody. There are also some other forms of MLD there is early juvenile and an adult onset form of the condition but the late infantile which is the form of MLD that children get at the youngest age is the most aggressive form and the most shortest lifespan for a child that has that form of the condition. Being told that obviously my daughter had this condition the doctor was quite reluctant to tell us about the life expectancy and the time frame in which we might have with her. 

I do remember in that very first appointment that I knew that I needed to know. Yes I understood that it wasn't a definite it could have been shorter it could have been longer than the time frame they gave us but I needed that ballpark time frame in my mind in order for me to go forward and so yeah obviously the doctor as I said told us that the life expectancy was five years old or two to three years from diagnosis and my daughter was two and a half when she received her diagnosis so they were pretty bang on the mark for our daughter. Obviously initially hearing that from the doctor was horrific I broke down I cried I didn't really take in a lot else of what was said in that appointment and the doctor was amazing she was told us everything we needed to know at that moment and everything else could wait and we would then speak to her in I'm not sure whether it was a few days time or weeks time I knew when we were ready that she was there for us to then discuss how things were going to be going forward and we took some time at the hospital to attempt to take in what we'd just been told and and then we had to drive ourselves home you know we get told these horrific things but life still carries on you still have to get up and move so we had to get back in the car fortunately we knew not to take our daughter to that appointment with us so we had the the time and the brain space to just you know cry out and like I said pull ourselves together as much as we could in that moment and yeah drive ourselves home and go back to our little girl and so going back home and seeing her after being told that was I don't even know how to explain it quite a monumental moment would you say it was just really surreal to know that we all know that we're going to die right it's part of life but being told there's a time frame on it and you can literally see that timer counting down it it just changes everything and it makes all the silly little things that you worry about just completely drop off the radar they're just not important anymore and so we just knew that we needed to make the most of the time that we had with her and not wallow we knew from the get-go that there was nothing that could be done of course my parents at the end of the day I was straight on the internet and trying to get as much information this was the first time that we'd been told the actual formal diagnosis the actual condition she had and the form and so I did my research online and I learned as much as I could about it I did discover that there were a few trials happening I think at the time there was the one happening in Italy which my boys did then go on to receive and another one happening in France but neither of those were an option for her because she was already too far progressed with the condition and so life changed in that instant as I said things became more important like spending time with each other and while she was still relatively okay we tried to do as much as we could things like the holidays and making making happy memories unfortunately with this condition it does progress quite rapidly once symptoms have started again this is variable in all children we were told that our genetic copy of this condition was a particularly aggressive type hence why I suppose the life expectancy and time frame they gave us was so on point for us and she did lose her abilities very quickly and I think that is where our journey with grief probably began even from that moment of being told that we were gonna lose her that's when grief first shew up now I am fortunate in that I and at that point I had never lost anybody particularly close to me so I'd never experienced grief in any way shape or form really other than losing great grandparents when I was younger so I didn't really fully understand I wasn't particularly close to them this was like a whole completely different level of grief and for somebody that had never experienced grief before my understanding was that grief how we hear people talk about it all the time is just this short sometimes longer period of time after somebody you know whether they be close to you or not so close has passed and it's that time in which you grieve and you feel sad and you're allowed to cry and you're allowed to maybe wallow a bit and not look after yourself properly because you are processing that loss but it's just for that moment of time which I think most of us now maybe because grief is spoken about a lot more openly there's a lot more understanding that that is not how grief works once you lose somebody that you are so close to the grief never ends it's always a part of you it's always with me it can completely catch me off guard when I think I'm having a good day and then a smell a song even sometimes the way her brothers turn and look at me will kind of catch me off guard because I'll be like oh my god you look just like your sister then and instantly that wave of grief comes back along with that kind of reassuring loving warm feeling that obviously we can still see her in her brothers and so yes as I said that's really where our grief journey began receiving that diagnosis being told of what the outcome would be and because the condition is degenerative and it basically means that she progressively lost all of her abilities it was like grief was just kind of chipping away at us every single day because every single day we lost another part of her and of course she was our daughter so we have always loved and adored every single part of her no matter what part of her journey she was in that was who she was always going to be that was who she was meant to be and my god did she teach us and anybody that had the privilege of being a part of her life she taught us so much but I think I really want to like at this point talk about anticipatory grief and that is when you know that you're gonna lose somebody and it just always just kind of sits there in the background like a little dark cloud hanging over your shoulder so even when you have those joyful moments because we had those it would still be there just lingering in the background almost making sure that we really fully embraced those joyful moments because we knew there wasn't going to be many more of them to come or we didn't know how many more of them were to come as I said it's a degenerative disease so every smile you didn't know if that was going to be the last one every time that she was able to she lost her ability to talk but she could still make noises and communicate with us in different ways you never knew when that was going to be the last one and as I said just losing those little bits of her every single day is a form of grief that is so cruel and I think if there's anybody listening that maybe has somebody who's they've it seen with dementia or something like that where you just see the person that you love and know change and forget and become somebody new that's hard that's really hard because they're still there you can still see them you can still touch them you can still hold them but it's not the same and so yeah as time went on she did suffer a lot it's a cruel cruel condition that does cause a lot of pain and discomfort and we had to manage that as best we could alongside the doctors and with the medications that we used to keep her comfortable but as I said she lost the ability to communicate she lost her vision I'm not entirely sure how much she could hear especially towards the end I think it was obvious like obviously more louder noises but I always felt she knew when when we were there she knew when we were there you could just see that she was a lot more at ease and comfortable and she just liked being in the presence of us and her brothers her brothers were obviously really little babies while she was going through all this but they would very often just all lay in her bed together and watch and listen to movies and that was kind of our play area her bed or sometimes we were able to get her down onto the floor with us to play and get her in a comfortable enough position to to enjoy that but even those moments as I said before the joyful moments there was always that attachment of grief to it so even now looking back and thinking about those memories there's just this weight of grief that comes alongside it and so as she progressed with her condition she did become more bed bound it was increasingly painful for her to be moved and so we were quite limited with what we could get out and do fortunately we were very close to our local children's hospice and they were amazing at allowing us to spend time there and really supporting us throughout the whole journey and through the hospice I did receive counselling as and when I needed it I did find that useful to a degree and I know counselling is very different for everybody some people find it really beneficial some people don't find it does anything for them I think I'd say that it was kind of a middle ground for me it was at that time it was helpful because when I had my hour of my counselling session that was my time to to be real to be raw to let it all out to be angry and to just voice all the frustrations and the anger that throughout the rest of the days and times I would obviously hold him and that was really good for me at that point because there was so much pain and anger and sadness that it wasn't possible for me to just express that in the moments that I felt it because it was continual it was constant and life was exhausting enough as it was and crying and letting all of that emotion out was exhausting on a whole other level it took so much from me so as much as I kind of looked forward to those that hour that was my hour to cry and shout and get everything out it was exhausting I would come out physically drained emotionally drained I'd have a pounding headache the next day I would feel better for it and I suppose then building up to my next session it would then just gradually accumulate over the over the week until I was able to let it out again and that was the only way that I personally found counselling to help I did have some counselling sessions after my daughter had passed but I didn't find that as helpful and I'll talk about that more as we go along so as you will know from my previous episodes talking about my boy's journey and obviously taking them out to Italy to receive their treatment I had to leave her and that was probably one of the most not difficult decisions I've ever made because it was no decision of course I was going to go to Italy and save my boy's lives of course I was and as I explained in the previous episode the plan was that my husband and my daughter would come with us we would all just go out there together because I didn't know how many weeks or months my daughter had left so I needed to be with her as much as I possibly could I didn't want to be in a different country where I couldn't be with her but I had to be so we put everything in place to take her with us unfortunately after about a week or two maybe two weeks very quickly we realised that it wasn't going to work she had a hospital bed and all provisions in place for her in the apartment we were staying but it just wasn't the same she just didn't have the support around her that she needed or we had a incredible family and friend support system that would come in and see us and we had play specialists and carers and nurses that were all part of her life and by taking her to Italy with us she lost all of that and her days became very boring and very mundane because we literally were in an apartment in the middle of Italy and all we could do was go out for a walk which was lovely for the first week or so but then the novelty wore off she also had a bad spout of dystonic seizure type things where her whole body would go very stiff and obviously that was extremely painful for her and we saw the team in Italy they they really kindly saw her and gave us some advice on how best to manage it but I think we felt incredibly anxious that what if the worst happened out there what if she got so poorly that she went into hospital and we weren't able to get her home and for us the worst thing that could have happened was for her to die whilst we were in Italy because of course we would then want to get her flown back home so that we could do a funeral and all of that stuff obviously back here in the UK and that added stress weighing on my mind and my husband's mind was just too much with everything else we had going on it was just it was too much and so we made the really difficult decision that my husband would go back home to the UK with my daughter and I would stay in Italy with the boys so as I said that was such a difficult goodbye you know packing up all their stuff for them to fly back home without me and the boys and essentially splitting up our family at such a difficult time you know the boys were receiving a really intense life-saving treatment I needed my husband's support and my husband was going to be at home on his own looking after our terminally ill daughter and he needed my support but unfortunately that wasn't possible I think it was my sister that really kindly flew out to Italy to help my husband fly fly back home because obviously doing that on your own with a severely disabled child is not simple I think anybody who's disabled and who has flown will know that airlines are not great at dealing with disabled people even to the point you know we obviously told the airline and prepared them that we were going to be boarding this flight and the condition of our daughter and everything and yet when we got on the plane they still tried to get her to sit upright and put a seat belt on which is just ridiculous that was never going to be possible for her fortunately once they could see that they were then very accommodating and and provided pillows and supports and all those kind of things to make sure that she then had a comfortable journey back but yeah and and then at that point our lives became very separate as I said my husband was back in the UK he then had to go through all the procedures again of getting all of the provisions back in place that we had lost all the carers all the nurses the hospice care the play specialists it wasn't all there sitting waiting for him to come home he had to then get all that processed and as you know if you have a child with disabilities and you get any provisions or any support or any help for them you know what a fighter is to get those things put in place and how long it can take to get those things put in place and when you have a child of a limited life limiting condition you don't have time so it's very frustrating however he was back home and that was his job and I was obviously overnightly dealing with all the drama that was going on with my boys throughout their treatment if you haven't listened to that episode then go back have a listen because it's quite a story and at that point I was then dealing with a whole different type of grief because I was grieving the fact that I wasn't able to be with my daughter I couldn't I couldn't hold her I couldn't be with her I couldn't do her bedtime stories and have all those little moments with her that I was trying to like soak up as much as possible because I was now in another country and that's a whole different kind of grief grieving somebody because they're not there with you but they are still here but they're slowly being taken away from you and you might you just don't know how many more days left that you have of being able to see them and there was a point whilst I was out in Italy where she did have to go into hospital she was really struggling with pain and dystonic seizures and spasms and my husband called me and obviously told me what was happening and what was going on and then I could tell that he he wasn't panicking because at this point we'd got very good at just doing what needed to be done and being very level-headed but I knew that he needed me he needed me to come back and support him and she needed me as well I spoke with the doctor in the UK that was looking after her and she was very reassuring that she didn't think that anything awful was going to happen we weren't at a point where we were going to lose her but she was really poorly and I didn't need to come home but if I could come home and see her I think that would do her good and so there was no question in my mind I had to get back to her because we just don't know we knew she had a life-limiting condition it's all very well the doctor saying that they didn't think she was going to die in this moment at this hospital admission but things can change in an instant so I had to get back and see her obviously both my boys were in hospital in Italy and I couldn't just pick them up and take them with me so that was a whole other drama about getting the permission essentially from the the hospital and being able to to leave the boys there whilst I travelled back to the UK of course I didn't leave them completely on their own we had a very good family friend who had who was out there for the whole duration of the boys treatment and so essentially as I explained in the previous episode I had to sign over in a very formal way in front of very important people I had to sign over my parental responsibility to my children to her for the duration that I wasn't in the country and that in itself is scary as much as I trusted her and of course anything that happened she would have discussed with me essentially anything that happened in the moment that had to have a decision made was then put in her hands it was all very stressful anyways we got that sorted and I was able to fly back home to the UK that was a whole other dramatic story which I believe I shared in the previous episode also as I said you're going to want to go back and have a listen to that one but eventually I got back home to my daughter she was still in hospital and it was just I think we just both needed to see each other I'm not sure how many weeks or months it had been at that point that we hadn't seen each other but I think we just both needed it we both needed that that hug that connection to know that we were both still there in the physical and and just have that time together and fortunately she had taken a turn for the better and she was then discharged from the hospital that afternoon and we went straight back into the care of the hospice which was basically a home from home from us so we were more than happy to do that it took the pressure off my husband yeah we were able to actually spend a day together just being a normal family it kind of felt for those sort of 24 hours we we just were a normal family and and then and then I had to leave I had to say goodbye again and travel back to Italy to continue the boy's treatment and yeah as I said you just don't know anybody in any lifetime in any scenario when you say goodbye to somebody even if they're just going out the door to work you just don't know that could be the last time you ever see them but when you know that the person you're saying goodbye to has a life-limiting condition and they're really poorly and that you are now going away for I didn't know how long I was going back to Italy for we weren't given a time frame it was just until the boys were recovered and well enough to fly home so saying goodbye again was just absolutely heartbreaking but it had to be done I had to go back to the boys and so yeah grief just came back to me in this kind of grey shadow that just hung over me in the background I had to be present and I had to be on it with the boys I had to obviously there was a language barrier and I had so much that I had to take in and keep on top of and try and understand what was happening obviously as I explained in previous episodes my son the eldest twin he had some complications and there was lots going on over there that I had to be be on the ball with yet I was still grieving in the back of my mind and so eventually we got to a point where I said enough is enough the boys were as I said having some difficulties in their recovery but I knew that I couldn't just sit in Italy waiting for them to get better they'd received the treatment it was all working well now they were just recovering they could do that best at home back in the UK back with all of us together as a family so we were able to make that happen basically and just getting back home to our own house and having the five of us under one roof and the boys back in their own beds in their bedrooms that was such a huge moment because there were points where we didn't think that we were going to be bringing both the boys home because he was so poorly so to have them both back in their cots in their own bedroom and on my daughter was there in the next room and my husband was there and we were back together as a team was amazing and we kind of felt like almost like a sigh of relief like we've done it we've got here we've got to this point and now now we just have to try and live as normal life as possible as a family until the next tragic thing happens because we now knew it's only a matter of time before we lose our daughter those I'm just trying to think of the time frame of when we got back from Italy to my daughter then passing and we did have a year I believe I'm just working out the the dates in my head yeah we had a year and yeah a year and five months so that's actually quite a long time considering there were points where we thought way before that that time that she might not make it and as very different as our lifestyles were at that point we did start to kind of settle back into some kind of normality it took some time because my husband was obviously very on it with my daughter's care and needs and medication and everything that she was going through which I obviously had not much understanding or knowledge about I didn't know what her feed was or what rate her feed went through at or how many times a day she needed to be aspirated or you know when the peg was cleaned and all these things because I wasn't doing that level of care for her but then the same was true for him of the boys he didn't know the medications they were on why they were on them when they were to have them and the therapy that they were then going to start having to get them better and so it took a kind of bit of a kind of warming up period I suppose for us to kind of integrate back all together as one family and when I did get back into knowing and seeing where my daughter was at on a day-to-day basis I felt that next wave of grief hit because it was completely different to when I'd initially left her and been in that home environment with her things were very different and I was grieving I was grieving the little girl that we'd lost when she was first diagnosed like that little girl was she was gone so I was already living in grief like she'd already died now I was having to deal with the anticipatory grief of what was to come and when was it going to come how many more days did I have how many more times was I going to be able to say goodnight before there was no more and that's a kind of grief that just is so heavy and so draining when you have to live with that every single day and I did allow myself to to kind of play the victim and to live in like I had my own little pity party I was not looking after myself I didn't even think about what my needs were or how I was I knew that when I'd come back from Italy that I was not in a good place I hadn't been eating anywhere near enough I'd lost a lot of weight and when I was eating it was nothing of any nutritional value I felt that I deserved a glass of wine or two every evening because my god look what I was going through if I didn't deserve a glass of wine at the end of that evening then when did I and movement and exercise was was moving my daughter around I mean that was pretty intense lifting her because she had to be lifted in a certain way which was comfortable for her not what was comfortable for me hoists and lifting equipment didn't work for her they just weren't practical it was just caused her far too much pain and so yeah I wasn't looking after myself physically I had started up the counselling sessions again but I didn't feel that they were as beneficial as they were in the early days when I was just getting all that anger out I just felt like I was talking about my story to somebody I was just telling somebody about it and then that was it there was no real light bulb moments of of anything really apart from starting to understand that actually I mattered and if I didn't look after myself I wasn't going to be able to do the best for not only my daughter but helping my boys through their recovery and that's when I started to realise that things needed to change and they needed to change before we lost her because we were playing a waiting game and that was just killing me inside so I needed to start doing something for me so that it wasn't just one big huge mess after she'd passed because that wasn't going to do anybody any good and I think this is the part where you start to feel like I felt like I was being selfish and I felt a lot of guilt around the fact that I was thinking about me because my daughter required 24-hour care it was intense it was a lot and not only that my boys were recovering from their treatment and that was pretty intense also they weren't able to keep food down they were throwing up all the time we were trying to do physical therapy with them because neither of them were able to sit up and hold themselves up or crawl or do anything like that so there was a lot going on and for me to say actually no I need I need to go out and go to the gym I need to go out and actually get some breathing head space to to clear my mind and I need to start cooking myself decent meals because up until that point the only decent meals I ate were when somebody else cooked them for me and there's there is a huge level of guilt that comes with that not just from me saying I need to start looking after myself but because I was so consumed by what other people would think now that is not something that I suffer with now I really do not care what other people think because I learned that that is absolutely none of my business what other people think about me as long as I know that what I'm doing for me is of my best interest and my family and I'm happy with that then that's all that matters sod everybody else but back then that was not the case I was terrified that I would go to the gym or go to an exercise class and I would see somebody that knew me and they would be like oh my god how is she out at the gym taking part in an exercise class when isn't her kid at home dying shouldn't she like be with her that's what I thought people were saying and we'd also had a lot of fundraising done for us so there was a lot of people that probably recognised me and knew who I was and what I was going through from being on the local news and in the newspaper and we were in a couple of magazines and I felt like everybody around me knew who I was even if I didn't know who they were and I felt like I was being judged if I wasn't with my daughter and playing that caring supportive mum like which obviously I was doing but if they weren't seeing that in the moment if they were seeing me out and about even going out with friends for a coffee like that was just not even on my radar like if I wanted to see my friends they would come and see me when I was stuck up the hospital with my daughter they would like bring me some food up to the hospital and see me there I couldn't be I didn't feel like I could be seen going out for a meal with them and having a bit of downtime because what if somebody saw me what if somebody judged me how could I do that when my daughter was at home I should be with her and that's something that I just think a lot of mums in my position either are feeling or have felt and I just want to say that it is none of your god damn business what other people think you have to do what is right for you and what is of the best interests of you and your family situation in that moment because if you're not looking after yourself how do you expect to support your husband and your children because they are going through this experience as well and I really found that especially between me and my husband that we were kind of a balancing act you know when when I was really low and I was really struggling he stepped up he did more he looked after me more and then vice versa when I saw him flagging and struggling I then stepped up more and I took on a bit more of the responsibilities and getting up in the night and those things and it really was just this balancing act and that's what got us through picking up not each other's slack but helping each other out because it was hard and so going to the gym and taking time for myself was absolutely essential for my well-being and honestly doing that in those months before we lost her I think were really really prevalent in how I was then able to manage my grief once we had lost her and so it then came to a point where we did take her into the hospice for some respite she was due to have a overnight sleep oftentimes we would stay in the family room so we were still there with her but as I said sometimes we would go home as we were literally five minutes down the road now on this occasion we'd taken her into the hospice we'd got her settled the nurses had taken over the care I think we were just having a cup of tea in the family room and then the more senior nurses who take charge of the medications and all those kind of things came and had a chat with us and said you know we really feel like she's got to a point where you know that we are in the end of life stages we are in the this could happen in the next couple of days or it could be another week or so but that's how close we are and I think we kind of knew that but we still weren't how can you be ready to be told that same as being told that your child is going to die being told that they are now in the very end stages is is not easy to hear obviously and so they asked us if if we wanted to that she could she could stay at the hospice indefinitely now because we had already made that decision prior to that conversation that we wanted her to be in the hospice to pass and so it actually felt like a relatively easy decision to make to say okay yes she can just stay here now because because we had such a good relationship with the hospice and it really did feel like a second home to us you know my boys were kind of crawling at this point and just being absolute chaos in the hospital at hospice and and just felt very at home there themselves and the nurses were all great at picking them up and looking after them as well even though they obviously weren't there for care and it felt like it did almost feel like kind of a relief a weight off my shoulders like okay we're we're nearly there now because she had been suffering for so long we had really struggled to maintain the right level of medication at any point to keep her comfortable and so i had begun to felt like it's okay we're all okay you can go now and obviously saying that to your child is awful but i really felt like we'd got to that point and i wanted her to know that we were that we were okay with that because she had been incredible throughout this whole journey she really was smiling at times that you just would not expect a child to be smiling and joyful and yet she still brought that to everybody that was in her life and so i wanted her to know that it was good the boys were okay we were all back together as a family and that when she was ready she could go she didn't need to wait any longer and the funny thing is she didn't she hung on for quite a while we were actually in that hospice for i think it was um let's try to think of time frames again because i'm terrible with dates and i don't write anything down we were definitely in there for about three weeks if not four and she pretty much slept though that whole time and i think this part of grief was very it was very calming and quiet and gentle and really special the hospice were great at giving us time and like i gave her her last bath and we had cuddles and you know we did a bedtime routine with her still every night and i do remember a good few weeks in the staff saying you know we haven't given her she got to the point where she really struggled to even just tolerate fluids her body just held on to it it didn't know how to process it so she'd go very puffy and because she was still with us all these weeks later the hospice then started talking about maybe we should increase her fluids and see how she gets on we could even think about potentially giving her a bit of feed again and at that point i absolutely broke because i was so so prepared i was so ready to let her go and i wanted her to go she'd been through so much and i knew i knew she was ready i knew it was time and when they said that and i just thought you mean you want to prolong this you want to actually start feeding her body again and trying to get this to last longer why would you want that now i know this can be a really sensitive area because some parents would absolutely grab that opportunity and be like yes let's see if we can if we can get her back again for a bit longer let's give her let's give her what her body needs and build her back up a little bit and see what she can manage and that's not wrong but for us it felt wrong and i got really angry and upset that they even suggested doing that for her because i knew that wasn't the right thing to do but the guilt i felt the feeling that way was horrific i felt like i was some awful parent that just wanted her child to die didn't want to try and keep her around any longer like who even was i was like this awful disgusting parent that just wanted their child gone which was absolutely not the case whatsoever i think any mum can understand that you have such a connection with your child you know you just intuitively know what is right and what is wrong and i knew that that was absolutely not the way that we needed to go i knew that god she had a strong heart she had such strong heart and that was all that was really keeping her going at this point but i knew that she was rested and sleeping and we didn't need to start bombarding her body with trying to process feed like her digestive system just wasn't even doing anything at this point it would have just caused her pain and discomfort unnecessarily for what a few more days a week and so i stood my ground and nobody forced us there was just an option that they gave us but i know how easy it might be for some parents to not be able to override that feeling of guilt of like well of course i should try and keep my child alive for as long as possible like some people might not be that strong i'm so glad that i was even though i felt awful nobody made me feel that way that was just a belief that i put on myself my husband was wholeheartedly in agreement with me that that was absolutely not the way to go for us in this situation and though we needed to just we needed to just let be what was happening and we knew that when she was ready she would go and and that's what happened she we actually had all been up there and done bedtime routine the boys were in a particularly mischievous mood they've been climbing all over her bed and pulling her about and just being annoying mischievous little brothers like they should be to their sister and so we'd said goodnight to her and put her bedtime music on and then taken the boys home to sleep that night and yeah the next morning at around seven o'clock in the morning my phone went and i knew instantly i knew instantly that they were going to say she was gone and then just came this whole next level of guilt because i wasn't there but i know in my heart that that was exactly how it was supposed to be we had the most lovely evening as i said with the boys up there being mischievous and climbing all over her and it really just felt a sense of normality in a very strange way and yeah she just she went to sleep and that was it she didn't wake up that morning and the grief that came with that that finalisation of it that that definitive moment of this is the end was then another completely different level of grief we we did go back to the hospice and we spent the day there and some family wanted to come up and say goodbye to her and it was just such a surreal but special day and and there was a huge a huge sense of relief that it was over that her pain and her suffering was over that our pain and suffering to some degree was over there was no more waiting and not knowing it had happened the worst had happened and she was now gone and i actually think those next few days week were the easiest because we'd been preparing and waiting for so long for her to pass that now it was like all the practical stuff of getting her i know some parents might wait to do these things but this is just how i am i'm very like right what needs to be done let's get that done let's get it out of the way with everything in life and so this felt no different it was very much we'd already actually had some of her equipment and things at the house we'd already had um sent back because obviously we knew she was now in the hospice and so it was getting rid of those last final bits in the home it was obviously making funeral arrangements and informing everybody that she had now passed so it was all a lot of practical stuff and i didn't really feel like i think we kind of see in films and movies this kind of time after somebody's died and you you see the mum she's on the sofa with the blanket and she doesn't want to talk to anybody or do anything she doesn't want to make any decisions she's just there in her grief and that wasn't me at all and as i said everybody experiences grief differently but i was not there at all and i'm not sure if a part of that was because of such a long time frame of that anticipatory grief of saying goodbye to her so many times before she actually left us in the physical that made it easier to some degree i'm not sure or whether i did just as i said busy myself with the practicalities of everything that had to be done once she had gone and so we very quickly were able to get the funeral in place and all the arrangements made and we really did have the most beautiful day for her really i couldn't have wished for for a better day it really was a lovely send-off for her and so many people came that were just a part of her life and you know that she had really i know that she really impacted so many people in the short time that she was here with us and after the funeral it was actually on the first of december so we were very much thinking about christmas and i think that possibly helped as a distraction as well that we were able to focus on that and making that special for the boys and also we were really conscious of keeping things as normal as possible as we could for the boys during that time they were two years two years old they really didn't have a clue what was going on and yeah as i said we then had two two-year-olds leading up to christmas to look after and i don't really feel like my grief changed much at all until coming up to like the first anniversary of her passing or possibly even her birthday is in the september and then she passed at the end of november so i suppose it was kind of coming up to that kind of year anniversary of what would have been her birthday and then the day of which she passed that i felt like grief then took took another turn and i really started to then experience what what we were missing out on and what should have been and really started going down that route of you know she would have been six this year what would we have been getting what would she have liked what would she what would her interests been what would she what films would she have loved watching what characters would she loved i mean she was always a huge minnie mouse fan so i'm sure that still would have been the case at six years old but yeah really starting to ask the questions of how much would she have got along with her brothers or how much would they have annoyed her would she have been the the caring sister that just wanted to look after and baby them or would she just be annoyed by their presence um and i think that's kind of the way my grief has gone since that point i didn't have any i did have some more counselling after she passed as i mentioned earlier and i didn't really feel that to have been much benefit again i think it was more of just an outlet for my anger and frustration and so i didn't really continue on with that for much longer fortunately me and my husband have a really good relationship and we were able to talk to each other and some family and friends were great as well but grief really has now just become a part of who i am and it's something that is absolutely with me every single day sometimes it's really at the forefront of my mind but for the most part it's just there in the background and when i do hear a song or i do see her and her brothers it's mostly a feeling of joy and love and not grief in the way that you might expect and i just kind of want to share that because i know there'll be a lot of mums listening that still have their child with them but they know that they have a condition in which is going to take them sooner than if they didn't and so i know how you're feeling i know that feeling of not knowing when that time is going to come and what it's going to be like when that time comes that was something that i worried about a lot what's actually going to be like when she dies how's it going to happen where are we going to be who's going to be there and these are all factors that you can't really control to to a certain degree so just be comfortable in those decisions that you can make and know that anything else is exactly as it's supposed to be and so yeah living with grief today is absolutely as i said it's there it's prevalent every single day and i know it's not going anywhere but i now know that she is with me every single day like i know intuitively that she is just with me and all the decisions i make and everything i do in my life and she's guiding me every step of the way because everything i do is for her is for what she taught me is for everything that we went through through our journey and i have to make that mean something i have to make all that pain that she went through and that i went through and her loss of life i have to make that mean something i have to turn all of that pain into some kind of purpose now i thought that that was going to be setting up some big charity in her name and raising money for at the moment we're really trying to um get this condition added to the newborn screening heel prick test and i thought that that would be my thing that i would set up this amazing great big charity in her name and that just didn't feel right whenever i kind of came to think about doing something along those lines it just didn't come naturally it didn't feel right and so as much as i am very much an advocate of ensuring that this heel prick testing does go through and i was very much a part of getting the treatment that my boys had um approved here in the uk and is now available on the nhs that's not what i'm doing for her as such what i feel like i'm doing for her now is this and that is sharing my story and that's really bloody hard i'm sure you've heard in this episode how upsetting it has been for me to obviously relive all of this and share this with you all but this is what i really feel is important because i know that by sharing my story and being really truthful about my thoughts and feelings and everything i experienced during that time i'm gonna be helping somebody else going through that or maybe you've already been through it and you're you're not not sure how to deal with the aftermath of it or you're not sure maybe you're at the beginning of your journey and you're not sure how you're ever going to get through it and i'm i'm here to tell you that you absolutely will and this is also why i created bravely together because i wanted that space that community for mums like us to to come together and know that we've got a space that can hold us and understand what we're going through and that we can speak so openly and honestly because i'm sure you've all done it you've probably all spoken to friends or family that aren't in it who aren't living this life and you've maybe said something off the cuff and they've kind of looked at you like you're some deranged crazed woman like why would you say that or you've made a joke a really dark joke because dark humour has become something that really helped get me through but not everybody's going to get that if they've not been through it so that's why i wanted to create a space where you didn't have to hold back you didn't have to worry about what you want to say or how you want to say it if i had a space like this in that moment where i was just like so angry that they wanted to try and start feeding my daughter again and prolonging her pain and suffering just to keep her alive if i had a space where i could have voiced that that would have been incredible and i know that that would have given power to other mums who were feeling the same and that's why that's why this space for me is so important so i think i'm going to wrap it up there i think i've cried enough throughout this episode today and i hope that's been a help to even just one of you listening that you've been able to relate in some way or some part of that story and if being a part of bravely together is something that you feel would be beneficial for you then please do reach out and and join us because we have got some incredible women in here and i just know that the energy and the power that having all these women together creates is just really truly special and i'm so proud of each and every one of them and for the space that i have created for them and for all of you so let's leave it there and as i said i hope you found this helpful if you want to reach out and chat then please do there is an option for you to leave me a voice message so even if you're crying at the end of listening to this you're very emotional then just hit that record button and send me a message about how you're feeling and i will get back to you i love chatting to you all so yeah thanks for joining me and i look forward to speaking with you all on the next episode