I am a heart mummy. Sometimes people seem to think that makes me a bit of a super mummy. They tell me “you’re so brave”, “you’re so strong”, “I don’t know how you cope with it all.” And yes, I try to be brave and I try to be strong, but there have also been many times when I feel anything but brave or strong. I’m not entirely sure how I cope with it all either sometimes.
I’m a heart mummy, but I’m not superhuman.
I don’t have a magical strength that I was endowed with the day I first heard the words “there’s something wrong with the baby’s heart.”
If you’d seen me shortly after handing my child to a surgeon for heart surgery, you wouldn’t think I was especially brave either.
Being on intensive care with a child recovering from heart surgery is like being on a rollercoaster. There were moments when I didn’t want to ride it. I had no choice but to carry on, holding on tight and hoping that we would get to the end in safely.
Being a heart mummy is exhausting, overwhelming and wonderful. The mixture of emotions sometimes feels so intense. Sometimes the emotions and thoughts whirl around in my head and it all feels too much. There have been times when I have felt like I am almost unable to speak for sheer exhaustion. Times when all I can do is focus on the next minute, and take the next tiny step forward.
The reminder that this moment will pass is not always comforting. I know the challenging times will not last forever and will one day be just a memory. But I am terrified of the thought that one day maybe all of this will be a memory and nothing more. And so I cling to the present and learn to live in the moment.
The truth is, I cope with the surgeries, the rollercoaster ride of intensive care and recovery, the exhaustion, the challenging moments and the day-to-day fear of the future because I have no choice. Without further heart surgery my child will not be able to survive into adulthood.
Sometimes I cry, sometimes I get angry and want to rebel against this hand that we have been dealt. I would give anything for my child’s heart to be perfectly formed. And then I take a deep breath. I remember just how thankful I am to have her, and how incredibly lucky we have been so far.
Sometimes I wonder where I will find the strength to take the next step. Somehow I always do.
Sometimes I am thankful for what this journey has taught me, for the strength that I have found and for the faith that has been an anchor throughout the storms. I have learned how to find joy even in the difficult moments. I have learned to appreciate the little things and be thankful for them. Living in the moment is hard at times and a blessing at others.
I know how lucky I am to have my children, how different things could have been.
I’m a heart mummy, but I’m just an ordinary mum too.
I get angry with my children and I shout at them. There are times when bedtime cannot come quickly enough. I crave moments of peace in amongst the chaos of family life. Sometimes I want to tear my hair out! Being a heart mummy doesn’t make me a perfect parent by any stretch of the imagination.
When I shout, when I overreact, or when I feel overwhelmed by the demands that parenthood brings, there is also that underlying prickle of guilt and shame. I berate myself for my lack of gratitude. I know how lucky I am and yet sometimes my actions do not show it. But parenthood is hard at times and I am only human.
At night I look at my sleeping children and am thankful for another day with them. I might not live up to my own ideal of parenthood, but my children at least know they are loved and that’s what really matters. And I go downstairs and take a deep breath, feeling thankful for a moment of peace and quiet.
Who knows what tomorrow will bring? For now, I am thankful for today. Another day with all the chaos and imperfections that family life brings. Another day of ordinary heart family life.
I’m a heart mummy, but I’m not superhuman.
I am not amazingly brave, or exceptionally strong; nor do I have an extraordinary faith. I am just an ordinary mummy, doing the best I can for my family and getting through each day as it comes.
What a beautiful post! To me, you are incredibly brave and strong, but I guess you’re doing what we would all do in your circumstances. Somewhere, mothers always find the strength they need to carry on, whatever life throws at them.
Thank you Sarah – it is amazing how you can manage to find that strength if you really need to.
Brilliant written honest post. I think motherhood just does something to women, just as fatherhood does something to men. People will just do what it takes and everything beyond for the safety of their children and I think that makes every parent very special even on days when we’re a bit shouty and can’t wait till bedtime. Sending love to you xx
Thank you – that instinct to do whatever we can to protect our children is incredibly strong and yes, I agree it does make every parent very special even on those challenging days!
Hun you are amazing, obviously on one knows what it is like of how they will react in your situation. You do a brillant job in raising awareness and supporting your daughter X
Thank you so much – just doing the best I can x
We can’t know how we will cope with a situation until we are in it – I guess we think we would all panic and not be able to cope – some days I can’t cope with a snotty nose!
I think that you are amazing, you not only cope with everything that Jessica’s condition entails but you also help to raise awareness and that is an amazing thing. There are people, like you, who are so inspiring and they find that silver lining no matter how tiny it is.
Thank you so much Jenni – I can definitely relate to the feeling on not being able to cope with a snotty nose some days. I had moments of struggling more with the challenges that parenting brings day-to-day when Sophie was a baby and feeling ridiculous for not coping with the ordinary. Somehow we just all keep going as best we can – looking for that silver lining can really help sometimes x
You are amazing….Such a beautiful post.
When my girls were having surgery I felt far from brave and strong. We just do what we have to do for our children….
Thank you Kim – definitely hard to feel brave or strong when your children are having surgery x
You’re totally awesome just in a ‘normal (great) mum coping with life’ way rather than a superhero way. Although I do think maybe your experience has sprinkled you with a touch more superhero sparkle than most of us have. Great post, Louise. xx
Thank you so much Maddy – I quite like the idea of superhero sparkle! 🙂
I can only imagine the reserves of strength you must have had to draw on and I salute you!
Thank you Louise – I sometimes wonder where those reserves come from but somehow they appear when I need them most!
This is such a great post Louise, honest, heart felt and powerful. I can identify so much with this as I really don’t like it when people make comments like, I don’t know how you do it. I feel that having a child with additional needs is challenging but also inspiring as my sons courage and resilience certainly push me to be a better person. I just try and take it as a compliment now. And you are right, we just have to get on and do it there is no other choice. What is our choice is how we approach the challenges. Your positivity, warmth and love for your children always shine through!
Thank you Catie – being a parent of a child with additional needs is certainly challenging but I agree that it is also inspiring and helps to push you to be a better person. I think the question is often a compliment too but I am sure that those asking would also cope in my shoes too – mostly because you have to! Thank you for your lovely comment – I try to approach the challenges in a positive way – it is not easy but accepting them for what they are somehow makes them a little easier to cope with x
Motherhood in general for me is scary. Where am I going to get that energy and strength when my family is far. This is the thing that bugs me. But like you somehow that strength would just come. I am so glad about that. I dont know where it comes fromm either but I know that when we need it it will come. That is what I learned mostly about being a mom. Thanks for the honesty. I am one of those who always see you are a supermum for having all the energy and bravery in dealing what you have to deal with. I am sorry if it gives pressure.
#pocolo
Thank you Merlinda – it must be hard being so far away from your family for you and motherhood is very hard at times – as you say, that strength does come somehow. I don’t feel under pressure to be brave and be a supermum though, so no need to apologise – it’s more that I wanted to share that I’m just human like any other mother out there – I have good days and bad days and that like most mothers, I get through the challenges because I don’t have any other choice – and I’m sure the same is true for you with trying to be a mother without having that family support there for you x
Hi Louise, you may not think of yourself as Super Human, but you certainly have Super Human tendencies. When we get cross with our children it doesn’t mean that we don’t love them, but I think I understand why you berate yourself for getting cross and shouting.
I think you are pretty amazing and your girls are little dolls. Sending you all big, fat Easter hugs.
xx
Thank you so much Debbie – it’s hard not to feel guilty for getting cross especially when I know how lucky I am, but it’s true that getting cross with them doesn’t mean we love them any less x
A lovely piece of writing. I am a first time mummy to a 6 week old baby girl and your strength inspires me as a mum to be the best I can be xx
#PoCoLo
Thank you so much Rachel 🙂
Wow what a lovely, emotional post. You are amazing, I know that you might not feel it some days, but you deserve every credit. Lots of love to you #PoCoLo
Thank you so much Laura x
Maybe not super human , but certainly a super mummy 🙂
When I was in a dark place at the time of my husbands heart failure (a different situation altogether I know) I never thought I would be strong enough but this quote sums it all up – “You never know how strong you are until being strong is the only choice you have”.
You have certainly been so strong.
Sending love x
That’s a great quote and sums it up beautifully – I am sure you had many moments when your husband had heart failure when you wondered how you would get through – somehow that strength comes though.
Honest and touching, Louise. I think you sum it up perfectly. We (mostly) choose to become parents but nobody chooses to become a heart parent. I think it is all too easy to set heart parents aside as some kind of special category, whereas you are (as you say, and meant in the nicest possible way) merely ordinary parents doing the best you can in a far less than ordinary situation. You’re not supermum, but you are in your own way extraordinary.
Thank you so much Tim – definitely not in any special category of parents here – you summed it up perfectly – just an ordinary parent doing the best I can in this situation.
What a lovely honest post and probably not easy to write. You are only human as are we all and in think we all have an inner strength but it takes something like the heart to have to show we have got it. Keep up the faith xxx
Thank you Karen – I think the heart certainly does play a big part in helping us discover that inner strength.
Beautiful and moving, and so well articulated. I think you are brave and strong and doing a fantastic job. But I see your point that, from your perspective, you feel you are just doing what needs to be done and coping as best as you can. #PoCoLo
Thank you – I can see how it can come across that way from looking in from the outside but there are so many times that I feel anything but brave or strong and am just doing my best to do what I have to do.
Lovely post. I guess to an outsider looking in, you must look brave. I think we tend to put that label on people who are going through difficult things because we think we wouldn’t want that to happen to us and therefore we wouldn’t cope with it. In reality, we are all just doing what we can. You don’t have much choice to do anything else when you are in that situation! #thetruthabout
Thank you. I think there is a lot of truth in what you have said – that we think people are braver and stronger than us because they have to cope with things we wouldn’t want to cope with – I know I certainly feel that with people who I see dealing with situations far harder than what we are currently facing. It’s true though that you have no choice but to keep going when you are in that situation.
I think you just have to get on with it when dealt such a shock but I wouldn’t say you were just an ordinary Mummy at all. There would be some who couldn’t cope so you do amazingly well and to see so much joy when you are tired or resentful is just amazing. Those two girls always looks so happy xx #thtruthabout
Thank you so much Sarah – I try to focus on the positives as much as I can which does help, but there are definitely times when I don’t feel especially amazing!
I read this on my way in to work this morning Louise and I did well up a bit. I know exactly what you mean though – you always hear people talk about cancer sufferers etc. as being ‘brave’ but if you’re in that situation then you just have to power on and of course you are going to have your good days and your bad days – we’re all just human. I could say ‘I can’t imagine what it’s like to have to send your little child off to have heart surgery’ but actually, I can imagine it and that what’s made me want to cry. I think people saying that you’re brave or that you are like supermum is their way of trying to build you up and give you encouragement and also a way of saying “I’m so lucky that I haven’t been put to the test in this way because I’m not sure I could do it” but if they did have to do it, they would have the same thoughts, feelings and experiences as you, no doubt. Thanks so much for linking up to #thetruthabout Xx
Sorry for making you well up Sam and thank you for your lovely comment. I think you are right in that the comments are meant to be supportive and encouraging, and yes also a way of others feeling that they are fortunate not to have been put to the test too. I think though that everyone has difficult circumstances to overcome, different mountains to climb and we all cope with them in their own ways. I remember someone saying once that if a group of people went to a party and all had to put their problems in a bowl, then choose which ones they would take away with them, they would generally pull their own problems back out again and there’s a fair amount of truth in that. Lovely to link up again to #thetruthabout and thank you for hosting.
I saw on Twitter that this piece had been picked up by The Mighty – congratulations! I think you ARE a great mom, but I also know what you mean. There have been situations in my life where I just thought, “Wow, I thought people who went through this stuff were, like, different. Better, or more prepared, or they somehow knew this was going to happen and how to deal with it. Or something! No way this can also be happening to ME!”
Thank you Jenny – it can be easy to think that people who deal with difficult circumstances are somehow more prepared, or better able to deal with it but it is true that when you find yourself in those situations you just work out your own way to get through (after the initial shock of “how can this be happening to me?” passes).
What a lovely post, beautifully articulated and honest. I think you are amazing, but I think that’s the amazing thing about being human, that you think you’d never be able to deal with something, but life throws it at you and you end up handling things better than you’d ever have imagined. For what it’s worth, I think you seem like an amazing mum – not superhuman, but definitely a super human 🙂
Thank you Katy – I especially love your last sentence, what a lovely thing to say 🙂
A beautifully honest post. You are brave and strong. I believe that the way to tackle these things is to take each day as it comes. If you think about the journey ahead of you, you might fear that you won’t be able to do it, but you will, you most definitely will. When you look back upon the journey already travelled you probably wonder how you have been able to cope so far. When you look back you should congratulate yourself on your braveness. None of us are superhuman, but you are pretty damn close. Pen xx
#TheTruthAbout
Thank you so much Pen for your lovely comment. Taking each day as it comes is very good advice – I know that if I try to think too far ahead and worry about the future, that’s when it all starts to feel very overwhelming.
Great post Louise and I’m sure you have an inner strength to help you cope with what life throws at you, all mums have that I think. Thanks for linking up to #PoCoLo
Thank you Stephanie, lovely to link up again 🙂
What a beautiful post Louise! I think we often view others’ struggles through parenthood as being brave and strong because we don’t have perspective. To you it’s an every day thing, you cope because you have to but to us, because we don’t, it seems an amazingly strong and brave thing to do. I’m not sure how I would cope in your situation Louise but I admire you for admitting that you are not superhuman. Thank you for sharing such a heartfelt post. xxx
Thanks for linking to #PoCoLo (and so sorry for the delay in my reply).
Thank you Morgan – I can see how it can be seen that way from an outside perspective – if you had told me before I had my daughter that I could cope with these kinds of situations, I would never have believed you but when I found myself in them, I had no choice. At the end of the day though, I’m just a normal mummy trying to do her best. Lovely to link up to #PoCoLo and thank you for hosting 🙂