Reading back through some of my blog posts at the end of last year I realise how much of a dark place I was in. Reading the things that went through my mind on a daily basis. We’re almost 8 months into this year and already things have dramatically improved for me.
By the end of April I got my wish of being depression and anxiety free after I got through counselling, I got my eldest son’s autism diagnosis. I re connected with my mum and younger sister. I think once my thought pattern changed, I realised I was never going to change them. If I was never going to change them why bother trying? I made more effort and in turn they did too. They accepted my children are different and made more effort with them too. I see them on a weekly basis now, there’s more communication between us.
My life has improved no end since April. Hearing the news I had waited 2 years for finally freed me from the weight of feeling so shit. I love how my life is and it’s not perfect it’s still hard work but I don’t hate my life. I don’t think about clothes 3 days in advance. I don’t hold back on what I say anymore afraid of hurting people’s feelings or them not liking me anymore.
Things are heading in the right direction. I’m starting to understand my children more. My 6 year old with his needs and wants and how he has to do things his way, I’m teaching my youngest son makaton, he’s copying things we do when we teach him. He started walking 3 weeks ago and he’s got such a funny character to him.
Life is what you make it, you can cry, kick and scream that you haven’t got perfectly healthy “normal” children or you can grab life by the bollox and say I’m doing a bloody good job at raising my children each with their own individual extra needs. Things can only go forward from here. No more looking back. ✌🏻
Going back a few posts I mentioned awhile ago I’d made a new friend. She went to the same open door sessions I went to. Many times she came in went into the office and came out in tears. I felt for her she looked like she was having it rough. I reached out to her. Mentally I was in an ok place I needed something to keep my mind busy and reaching out to this person did that. I invited her out for lunch with my and the ladies. I paid she said she had no money I wanted to do something to help.
We got quite friendly i wouldn’t ever say close but friendly. She’s a nice girl but she has had a lot of issues and trauma in the past. She’s not the only one. There was something about her that kept saying to me she needed someone to talk to. I quickly became that person. I didn’t mind at first but the more drama that happened around her the more difficult it became. Last weekend she had yet more drama police she social services turning up at her door (not for the first time)
It was then I confided in a very close friend that it was becoming too much. Too over bearing. She called 10 times a day, messaged me in between. I have 2 children I don’t have time for this. So wether I was in the wrong or not I backed off. Maybe I should have spoken to her. I didn’t ignore her but I distanced myself. It was the start of the 6 weeks holidays and my children had to come first. I had to distance myself for the sake of my children and my mental health. For that I’m not going to apologise.
However it seemed that me saying I’d been busy didn’t go down too well and she majorly kicked off. I took screen shots of all the conversations so nothing I said could be twisted. Well she decided that everything I said she would twist for attention. I realise now she’s probably done this many times before. She has a mental illness, I presume her mental illness combined with her past makes her thrive off the attention people give her. “I said her daughter deserves to be in care” “I threatened to phone social services up so her child would be taken away” all of it being bullshit.
It hurt that she was slagging me off calling me fake. Didn’t even have the balls to admit it was aimed at me. She denied it. I didn’t have to but I chose to help her. I chose to introduce her to my children and her to be in my life. I asked her to watch what she said around my autistic son he copied her and his behaviour changed as soon as she came to my house. I’m telling him off for kicking her and hitting her when he sees her kicking me, I don’t care that she was “having a laugh” he copies her he gets a bollocking how is that fair? She’s not an example to be set to my son. I don’t want my children surrounded by people who bring drama into my life. I need to be around people who understand my children and their needs.
I have nothing more to do with her now. At first I felt like it was me. I’ve had a fair few people fall out with me recently. No longer will I be the silent one and hold back on what I think. I will say what I think needs to be said. I need to stay strong and be pleased that I’m putting my children first. Not other people and their selfishness and drama. I’m sad I lost a friend but she was sucking life out of me. I feel for her daughter and what kind of life she will have, I fear for the the unborn child being put on a child protection plan. I wish her well in her future I just can’t be part of it.
So having a child with a heart defect really isn’t easy. I guess I’m relatively lucky that my little one doesn’t really have that many problems with his heart now but he still has a residual vsd.
When he gets poorly whether is a common cold or any other illness I immediately think it’s something more serious. It’s inbuilt in me to think the worst. My little one now 19 months picks up ilnesses and infections quickly. He’s picked up a viral infection as soon as he started coughing I took him to the doctors to be checked in case it was a chest infection. I swear they look at me like I’m crazy but once they see his scar they realise I’m not.
It’s reassuring that I’ve asked other heart mums if they overly worry and thank his they said they do. All the time. I’m glad it’s not just me worrying over minor illnesses. What other parents don’t realise is when your child has been through so much at such a young age they are even more precious. When doctors have stopped your baby’s heart and it’s been worked by machines you wonder if it’s ever going to re start itself. So while a viral infection is not nice for healthy children it’s harder for children with heart issues. They are at bigger risk from infection, their hearts have to work harder, their bodies have to work harder and it’s knocks the wind out of them. I see my snotty little baby struggling with this viral infection and I go right back to feeling helpless.
Mums with healthy babies should be so grateful they haven’t had to deal with what us heart mums have, don’t ever be dramatic about “poorly” children when they haven’t had open heart surgery where infections can be life threatening or a lot more serious.
Don’t compare your child to mine because it’s not a competition to see who has it worse. I’m my own worst enemy because I compare development stages and I shouldn’t so don’t do it for me. Be there to support me when I say my baby isn’t feeling well don’t just presume it’s nothing it’s never nothing with heart babies.
A few weeks ago like I mentioned in a previous post I was contacted by a children’s heart charity about my sons story. Last night it was published on their website so I shared it to my Facebook page, well both actually. It’s had done lovely comments on it and a fair few likes. To my surprise it also had a few shares. One friend I actually feel guilty but I asked her to remove the link.
She volunteered for the charity I get support from so she has many of these people on her Facebook account. These people know nothing about my sons heart defect as I’ve remained quiet about it. I don’t want them knowing. As far as they are concerned they don’t know the reason I get support. I fear that once they know they will do the whole sympathy thing. The tilted head, the “oh bless him” blah blah. Neither of us need their sympathy.
Is that wrong? Should I have said something by now? By not telling people it’s not attention seeking. I feared that ht would be seen as that. I don’t share posts wanting likes on Facebook or sympathy, it’s to make people aware. It’s to show people how tough it’s been. To show the people who moan about their kids constantly how easy they have had it.
In a way I wish I had said something, keeping it quiet isn’t easy. Sometimes when one mother takes her kid to the Drs over every stupid little thing I wish I had said something. She needs a big fuck off reality check. Stupid little bitch.
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 )
A few weeks ago I was contacted by a charity set up specifically to raise the importance of echos during standard newborn checks after every birth. They wanted to know if I was willing to share my sons story about his heart defect. Although I was a little nervous as I’ve kept his story relatively private (hence the anonymous blog) but if it helps another mum going through what I went through it’s worth it.
The call came today while the star of the show was asleep. I told his story from start to finish and in honesty I got pretty emotional telling it. It’s been a long time since I’ve had to tell it from the beginning and had to go into so much detail.
I got through it and I’m proud of myself. I got his story out there but what’s really frustrating is when I read and share other people’s stories on Facebook no-one bothers to read them. Ignorance is bliss until it’s their child or grandchild (expect in my mothers case) with a heart defect. I really wish I could get people to read these stories and realise what mothers like me have had to live with. Mothers who have lost their babies due to the health professionals failing to diagnosis their babies. It’s heartbreaking for me reading the stories and I lived through similar.
I read this on Facebook and it brought tears to my eyes. It’s a re order that CHD children and babies are so incredibly special. They all share that little faded scar down their chest known as a zipper scar.
Sometimes it’s hard to remember that little scar inadvertently saved my little boys life. It’s a scary thought. It’s getting incredibly close to his heart anniversary. And I start thinking back to the scariest and most worrying time of my life. I’m grateful he’s still here more then anyone will ever know, I look at that scar and remind myself of what he went through and realise I’m so incredibly lucky. Many CHD mothers haven’t been so lucky they lost their little angels to something that couldn’t be defeated. I am reminded every day of to struggle he’s had over his life and he’s only nearly 16 months. I feel so envious and jealous when I see younger babies crawling, rolling over and walking. All the things he could have been doing by now if it weren’t for his heart defect and his open heart surgery. Every little milestone not important to anyone else is huge to me. I know some people don’t get it and they don’t share my excitement. My baby boy stood unaided for like 5 seconds today something that made me so incredibly happy and proud but who do I tell? Why share it? It’s not a big deal to them like it is to me.
It’s a lonely world of the possibility of a cough being a chest infection rather then just a cough, infections being picked and treated asap, its infections every few weeks or months, it’s trips to a cardiologist once a year. Physio every few weeks and people asking if he’s crawling yet. This is easy compared to what it was this time last year. It was weekly sats checks, monthly hospital visits and weekly weigh in’s on top of everything else. Some parents don’t know how lucky they are have to have healthy children they take it for granted and ignore their kids in favour of mobile phones and websites and sitting and chatting rather then interacting with their child. Sometimes I wanna scream it to the top of my lungs everything my little boy has been through but neither of us need pity. I don’t want people to pity him and ask questions which is why I keep it quiet.
That article published last Sunday I’m thinking and hoping no-one I know from baby groups saw it. Because once they know it’s out there and it’s staying on there. They ask too many questions as it is and they don’t know anything. I like my life being private. Other shout about their problems I choose to blog.