Being a CHD mum 

I’m a heart mummy but I’m not superhuman 💙
Being a heart mummy can be perceived sometimes as being a bit of a super mummy. I am often told “you’re so brave”, “you’re so strong”, “I don’t know how you cope with it all” and whilst it is true that I try to be brave and I try to be strong, there have also been many times when I feel anything but brave or strong, and I’m not entirely sure how I cope with it all either.
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, but 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 are have been times when I have felt like I 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 and remember just how thankful I am to have my child, and how incredibly lucky we have been so far.
Sometimes I wonder where I will find the strength to take the next step – but 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 been amazed at how joy can sometimes be found 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 child, 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, I shout at them and there are times when bedtime cannot come quickly enough. I crave moments of peace in amongst the chaos of family life and there are times when I want to tear my hair out. Being a heart mummy doesn’t make me a perfect parent by any stretch of the imagination.
And 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, but 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; 
(Author Louise George )

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Author: always over thinking things

I'm 33 years old,married and I'm a full time mum to 2 boys. My eldest is 6 and the youngest is a year old. My eldest boy is on the autistic spectrum and my youngest is 2 and has a congenital heart defect called tetralogy of fallot. My blog is about my children, about me and my way of dealing with the life I've been given. It's a way of expressing my emotions and feelings through words. This is done anonymously as I want to keep myself away from people who don't know what's happening in my life.

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