01 - Grief, Shock, and the Start of Bravely Together - The Beginning of My Medical Mum Journey

Episode 1: When You Do Everything Right and Life Still Breaks Your Heart

In this first episode of Bravely Together, I take you back to the beginning. Before the diagnosis. Before the twins. Before the community.

I share my personal story of growing up with an upper limb difference, navigating identity and love, and stepping into motherhood with hope, only to be met with the unimaginable.

This is the story of how my daughter’s rare genetic condition changed everything. It is about the shock of receiving no clear answers, the moment we found out we were having twins, and the fear that followed us through every appointment.

If you’ve ever felt like you did everything right and life still crumbled around you, this episode is for you. You are not alone.

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Transcript

Hello my lovelies and welcome. My name is Leah and I'm the founder of Bravely Together and this is my six-part mini-series for mums that are navigating just the most unimaginable thing that we could possibly imagine when we decide to have children and that is having a child with a rare genetic condition, medically complex care needs and any kind of additional needs really that just adds to that level of care that our children require from us. And so this first episode I really wanted to kind of take it right back and share a bit of my story and really focus on how when we try to do everything right and yet life still manages to turn around and bite us in the arse because I'm pretty sure that that's how we've all felt whilst on this unique motherhood journey as a medical mum. 

And so I'll begin by sharing that I was born with an upper limb difference which basically means that I was born with only one hand and I was fortunate enough to not be bullied as a child. I had a very nice school experience and had no issues in regards to that but I was very aware that I was different and I kept myself quite small, quiet, didn't want to be noticed and kind of just stayed in the background. And so I suppose as I got older and obviously to the age where all my friends started to get boyfriends it became a bit more awkward for me because I got along with the guys but I was the girl that only had one hand and so no one really wanted to date me. 

And it was only when I then had my first few boyfriends that I kind of started to learn that it was okay and that I could be accepted for who I was and that's quite a big realisation to come to I think at such a young age. I'm talking maybe around the age of 16, 17 but I was very aware that I needed to do things right. I wanted to play by society's rules. 

I was very keen to find somebody and settle down to do the whole get married, buy the house, have the children and that's kind of my key focus. And at such a young age now in hindsight it seems quite sad that I wasn't on the understanding that I actually had a very long life ahead of me and that I should really enjoy my younger years more which I did, do not get me wrong, but I definitely think that I felt this societal pressure to settle down because that's what we should be doing, right? That's what we're expected to do, to find a partner, to settle down and have children. And fortunately I did meet my husband at a very young age.

I think I was 19 when we first met and it just felt right straight away. We just got along, we spent all of our time together. We very rarely argued and still that is the case to this day.

And so we did what was expected of us. We decided to buy a house first and we did everything right. My husband had a little bit of debt already at such a young age and so we started working away at getting that cleared so that we could get a mortgage together and buy. 

We didn't want to rent, we wanted to really solidify things and yeah, buy a property together before we got married or had children. And so whilst we were in the process of doing that, the first challenge shall I say kind of came along and kicked us down because my husband lost his job. The recession hit and he was made redundant, which meant that we could either pull out of buying the house or what we decided to do was to go ahead with it purely based on my wages, which I don't think is something that would have financially been able to happen these days. 

So we were very fortunate that that was an option for us. And so yeah, we bought our house and we got settled in and not very long after that, my husband popped the question and asked me to marry him. And less than one year later, we were married. 

So we did not hang around. We were very keen to be the perfect little family, shall we say. So yeah, we got married, had a lovely wedding. 

It was absolutely perfect. Couldn't have wished for anything more. And yeah, we went away on our honeymoon and the next step was to start trying for a baby. 

And we were fortunate in that in less than a year, we had fallen pregnant with our daughter, Paige. And so yeah, we felt like we'd cracked it, right? We'd got the house, we'd found each other, we'd got married and we were now about to have our perfect little girl. And then my husband lost another job because it was just recession times and he was in and out of work and it was all very stressful. 

But yes, our daughter came along and I think it became clear very quickly that we were very young and we really did not have a clue what we were doing. And I didn't have anyone else around me that had had children. I wasn't a particularly natural maternal woman and so I didn't take to having a baby particularly easy. 

And she was sassy from day one, shall we say. She definitely let us know when she wasn't happy. And I was very overwhelmed and I didn't really know which way to turn. 

And I think in hindsight now, I would have picked up a lot quicker that something wasn't right. But as a new mum, I had no clue that the early signs were there, that something wasn't right with my daughter. Now, I'm not saying that I missed her diagnosis in any way because it's a very rare condition and most people don't pick up this condition in their children until the same sort of time in which I did. 

But now, four children later, I could definitely see in hindsight the signs that something was not all that it should be. And I was just really angry at the world. I was angry that I'd already been kicked in life by being born with only one hand and I'd had to overcome all those obstacles as a child growing up differently.

I then managed to overcome that and find my partner and fall in love and be very happy. Only for us to then be kicked again when we were trying to purchase our house and he lost his job and that was an extremely stressful situation. And now we got to the point where we were having, we had our daughter and we were being told that something wasn't right.

And it wasn't even something simple like your child has leukaemia or your child has a brain tumour. There was a moment where we were having various tests and things done and we were called back to the hospital quite urgently because they believed that she may have leukaemia and they wanted to do some emergency blood tests to confirm. And at the time we were so relieved when we were told that no, they were wrong, that it wasn't leukaemia, they'd tested, they'd double tested the bloods and that was not what was going on here. 

And the relief was huge because as I can, as you can imagine, any parent being told that their child doesn't have leukaemia, sigh of relief, amazing, okay, it's not that, so what could possibly be worse than that? Dare we ask that question because that is exactly what we had come along. But let's just not jump ahead here, let's just take it back. So the first signs and symptoms that we noticed with our daughter was that she wasn't picking up things, she wasn't trying to grab toys, she wasn't able to hold anything in her hands and she did struggle to sit upright. 

Nothing that the health visitor picked up or anything like that, it was always just said that, you know, all babies do things at their own time and that's just what was happening here. She was just doing things in her own time and I just think during this time I felt completely lost because I was a new mum, I really didn't know what I was doing and then I was being told that something wasn't quite right with my child but they didn't know what that was. And I was unsure as to how concerned I should be about this, like how worrying was this? And again I felt angry because we'd done everything right, me and my husband were both non-smokers, we didn't particularly drink, we looked after ourselves, we'd got married, we'd got the house, this was supposed to be our perfect little family and yet we were being told that something was wrong with our daughter and that they couldn't actually tell us what that was. 

And I felt so alone because not only did I not have anyone else around me with children, I definitely didn't have anyone around me with a child that had something wrong with them. Nothing, no one to talk to and it was extremely lonely because all my friends and family could do was reassure me, which is of course what you would try to do for somebody that you love and care about, right? Even when you don't know what the problem is. And I just felt like I'd completely lost myself. 

I was no longer me anymore because now I was a mum, it wasn't just about me. I had somebody else that I had to think about, care about, worry about and look after. And I knew that I was going to need help, I knew that I was going to need support and so we made the decision to move back closer to family and friends. 

And this was an absolute blessing in disguise because I then found out that I was pregnant with her twin brothers. And so in the space of a week, we had a medical appointment for our daughter and we were told within that appointment that there was something seriously wrong with our child. They didn't have a diagnosis for us but they wanted to run a lot of blood tests, a lot of scans, MRIs and that what they were going to find probably wasn't going to be very good.

Once again, they reassured us that they didn't think it was cancer or a brain tumour. So in my mind, I was like, what could possibly be worse than that? And of course, it was worse than that. And so the second appointment that week was our 12-week scan for our pregnancy and then life just dealt us another, I'm not going to say kick, because having this surprise was incredible, very unexpected. 

However, when she started scanning me, I was not expecting her to say, would you like a surprise? And I just thought, no, we don't need any more surprises, thank you. Just tell me that my baby is happy and healthy and send us on our way until our next scan. But she said that she would have to go and get a more senior sonographer to come and finish the scan because I was in fact pregnant with twins.

So not only did we have this impending diagnosis of our daughter hanging over us, we were now being told that we were adding twins to the equation and that we would have two new babies to look after. And so as I'm sure you can imagine, it was very overwhelming. There was happy tears, there was scared tears, there was, dear God, how are we going to cope with this tears? And all the emotions from being told that you're having twins and then that balancing act of, but there's something seriously wrong with our daughter.

And I think I will just say that life got very crazy from that point onwards. And I just wanted to share that little insight to how things really started for us, because it doesn't matter how much you think that you are planned and prepped and ready for this crazy ride that we call life, because something is always going to come along and challenge that. And it's not about what those challenges are, it's about how we react and how we deal with those challenges that really make us. 

And that's why I've gone on to Create Bravely Together, because I know that every single day, there are more mums being told that there is something seriously wrong with their child. And they need somewhere to turn to, because we don't have to do this alone. It may feel like you're alone when your child receives such a scary diagnosis, especially when it's a rare genetic condition that chances are your doctor may have never dealt with before, that the hospital that you're in may have never seen before. 

And you can feel so alone. It's just you and your partner. And maybe you don't even have a partner, maybe you are a single parent dealing with this. 

Which is why I just think that creating a space where mums, we can come together, but medical mums coming together is just so incredibly powerful. And I have found that these mums have found me over the years through my social media channels, through me sharing my story of our journey. And I've been helping mums in the DMs for years with so many different things, whether it be their own personal challenges with accepting their child's diagnosis, helping them decide what they think and feel is best for their child when it comes to medical treatment, and just being someone to not really give advice, but just to listen and to really hear what they have to say so that they can make a choice for themselves. 

Also for families who are wanting more children, but they know there's that risk of their children potentially having a rare genetic condition and all the emotions that come with that. And there is just such a need to have this space where these conversations can happen in a safe space with other mums that do understand what you are going through. And you can really feel seen and held and listened to and not judged for your thoughts or your feelings because there are no right or wrong ways to deal with this situation, to deal with this unique motherhood journey. 

It is just about navigating it with grace and with gratitude for being honoured with this unique motherhood journey because yes, it's shit. Yes, it's hard, but it is such a privilege to be mums to these children. And I know that every single one of you will completely understand that.

So I'm going to wrap up this episode here, but I look forward to sharing the rest of my story with you in the next episode. And please do reach out if you feel like anything I've said has resonated. And if you were interested in joining the Bravely Together community, then I will share a link for you to have a look at what I offer, different ways in which you can work with me. 

However, I would highly, highly recommend that you look to join the Bravely Connected membership community because that is where we are building our movement of strong, empowered medical mums who are coming together and really building a movement. Thank you for joining me and I look forward to seeing you next time.