CHD and what it means 


http://www.scribblesandcrumbs.com/2015/01/12/10-things-you-need-to-know-about-congenital-heart-disease/
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. 

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Break away

****long post alert**** 

Well I’ve been quiet for a few days but it seems what I’ve written has still been pretty popular so thanks for reading.
I’ve just come back from 4 days away with just my boys with my parents in law as my husband had to work we had to leave him at home, we stayed in the village they live in about 40 miles from home. It’s been lovely they are such lovely people and they adore my boys which is something that can’t be said about my family. 

My eldest struggled with being away from home. He settled the last 2 days but the first days were just terrible. He had no end of meltdowns over such little things. He woke up at the crack of dawn two mornings and copied everything he saw. He repeated things he’s heard on the internet which in the last two days he hasn’t said anything. He’s not watched his tablet since Sunday we’ve had no internet access. 

We had a couple of days out which was lovely we met up with my husbands family, his nan, his sister, niece nephew and auntie. They all took so much interest in the kids it made such a nice change. They watched the eldest’s sports day videosand videos of the youngest chatting away. The place we met them was gorgeous a hall with beautiful gardens and a maze and war memorial.  

It was nice to go to places I’ve never been, we were planning on going on a water taxi but the eldest decided he was too scared so we didn’t. I was disappointed I really wanted to go on it. It see,s lately that he scared of everything that never used to bother him and in totalhonesty  it’s hard. It’s frustrating because it ruins the day out you were planning and its holding him back from enjoying things.  

We had a chilled out day on Wednesday and didn’t go anywhere this I also struggle with I’m used to being on the go all the time but they like to relax and not do too much. I ended up going for walk  into the village just for something to do to break up the day and then went for a walk round the fishing lakes the other end of the village. 


Thursday we went into the city, we were panning an open top tour bus trip and walk round the castle walls. But my eldest once again decided he was too scared to walk around the castle walls. Something he did without fear 2 years ago. I notice things like this and how much has changed. Things I never picked up on before. Like up until 2 years ago he would quite happily go on every ride he saw supermarkets, fair ground etc but now he won’t go on them. Won’t even entertain the idea of it. 

In other news that I havent yet mentioned my support worker was sorting us out a volunteer to come and support us at home she has worked with children with autism before and would have been a great help to me and my eldest but sadly she got offered a full time job. So she is no longer able to help us. It sucks really does as I was hoping that she would help me calm the eldest down and give me some advice or tactics to help me deal with him. I cousins cope with him Wednesday morning he woke up stupidly early 2nd day in a row he woke his brother up as we were all in the same room. I just couldn’t deal with him I was tired pissed off and irritated because he woke everyone else up too. I went into the bathroom after my mum in law came in the room and I just brown down I was so tempted to pack our stuff and leave on the earliest possible train, he eventually calmed down but it took its time. 

I felt guilty and useless. I cousins cope with him so I just brown down come on seriously who does that? This is why I need extra support with him. I just hope someone else can come and support us somehow. Not just in the holidays but all the time. Give me a break from it. 

Anyway I’ve ranted long enough I’ve gotta go. 

Local news


During a mad moment on Friday night I emailed my local newspaper and shared my story about the closure of Glenfield hospital. To my surprise they actually published it. I am extremely nervous it’s the first time it’s public knowledge about my youngest boy. I’ve kept things relatively private keeping things between friends and family. I’ve never gone public until now. I’ve shared it on my Facebook wall but I’m I totally regretting it thinking people will see it as attention seeking. Thinking people I didn’t want to find out will know once it gets shared along the Facebook route. I don’t want pity for him and I don’t want to have to talk about it to anyone else. It’s in the past and if Glenfield weren’t under threat the article wouldn’t have been published. 


I’m not an attention seeker I kept things to myself for 5 months telling no-one outside of family and very close friends about his heart defect. I didn’t go posting everything on Facebook I create a new account and only added close friends and family to it to keep them informed of progress etc. The first time I posted on my normal account was the night before the surgery. Even then I didn’t go into details. 


It’s had a couple of positive responses from friends but it’s the ones that’s do say anything silently judging me for sending the story in. Fuck them they didn’t live through it I did. They didn’t see their 5 month old baby on a ventilator helping him breathe or being under sedation for days. They didn’t have their 5 month olds heart repaired. I did. So I shared my sons story and I hope people are inspired by it. They can save their pity for someone else my baby boy don’t need it. 

In other news my youngest boy now 5 months can bum shuffle round in a circle and he stated to try and pull himself up on to legs in the bath. Nothing stops this boys I cousins be any more proud of him. Today with the help of the sofa and his dad he stood up for a minute. Such an amazing moment for me as his mummy. My family don’t really get the meaning of this and how special it is to us. To them it’s not important to me it’s made my day. He’s coming on so far he’s amazing bless him few more months and the boy will be off and there’ll be no holding him back then. ❤️

Suriving the holidays 

3 days into the Sumer holidays with both my children at home. It’s incredibly exhausting. 

I’m on my own 9 and a half hours alone with them. When plans change my eldest doesn’t know how to cope. Various meltdowns on Wednesday nothing I did was good enough, nothing seemed to please him or make him happy. The 5:30am start didn’t help either. 

Thursday was a much better day he woke up at a decent time and generally seemed happier, he wanted my friend L and her children to come up to his house and play instead of us going there and he played really well. 

I’m kind of looking forward to a few days away with my in laws but also dreading it. I know what my eldest son can be like at home let alone in a place where he has no home comforts. No where that’s his space. It’s going to be difficult plus my husband has to work so he’s not coming with us so I kind of resent that he will have loads of time to himself and I’m with the kids all day with no break. I don’t think he realises how much hard work it is. He spends like an hour in the evening with them and than that’s it it’s bedtime routine and they are alseep. I love my kids but it’s exhausting having to do the same thing all time. 

My youngest loves little mix he’s 15 months old and he wants me to put music videos on YouTube for him to watch. He actually sits there very quietly and watches them but he only likes 2/3 songs so they are on constant repeat. My eldest is always saying something inapprioate. If someone winds him up he lashes out and goes to hit that child thats annoying him. I have to say I the same thing to him all the time and hear the same sentence. over n over again. 

I get very little adult interaction all day, I don’t get chance to sit and eat with hearing “mamma or mummy” or crying and moaning from each child, I leave the room and it’s like I left the country for 3 days. I really need my husband to their of someone other then himself  for once and actually spend more time with the boys instead of washing up at 6:30 every evening. It can wait till they are in bed they need your attention not the washing up.

I need him to understand how hard it is and how sometimes he makes it worse instead of helping me and making things easier. I can’t wait to go and come back from my days away and hopefully he will help more if not I’ll be having words.

A year ago

A lot has happened in a year. A year ago I was struggling with everyday life having a 3 month old baby with a heart defect the impending surgery and the fact my eldest was leaving nursery. I went to a baby group at my sons nursery I’d been going for 6-7 months while I was pregnant. The nursery manager was a friend and she had helped me when I found out about the surgery and the heart defect to the full extent. 

The six weeks holidays were starting a year ago today that’s when I couldn’t cope any longer. I couldn’t carry on bottling up my fears and feelings anymore. The health visitor had been to see the little one at the baby group and weighed him. No issue with his weight and I kept it together until she had gone for a meeting in the nursery office with another parent. Then the community nurse came to check oxygen sats i’d built up a bit of a relationship with her frequently asking questions and nothing  was ever too much for her. All she said was “you look more worried this week” with that I was in floods of tears. I talked through my fears with her and she re assured me but it didn’t help this time. During the holidays i’d be alone no baby group no support network. I was scared how I’d cope I was alone and terrified. 

The nurse left and I was still clearly very upset, the health visitor came out of her meeting and saw the state I was in. I’d never confided in her before, I was always fine. I didn’t know what help she could give even if I had spoken to her sooner. She came and spoke to me and she put a referal in to a charity called Home Start.

 A week later a family co ordinater came and visited me at home. She was lovely. she listened to everything I had to say while I told her everything that I was going through. They have been amazing to me. I had weekly visits from the lady I met and she organised me a volunteer to offer emotional support. In honesty I don’t know where I’d be without them being involved with my family. I couldn’t have coped if it weren’t for them, they have been in my life for a year and now I know I have that support I use it. They are there every time I have a break down, I need help, I need someone to talk to. They never judge me. They are so incredibly supportive I can’t be more thankful to them. 

They helped me when my little one came out of hospital which was only a few short weeks after they started their support. They helped me with settling my eldest into school and his investigations into autism. They have come to appointments with me, wished me luck for hospital visits and come to counselling sessions with me. They helped me with my depression and anxiety and helped me with the fear of leaving the baby. They have provided no end of support that my family didn’t. They still provide support a year later, someone to talk to when things get too much, someone to go to various appointments and support anyway they can.

I would honestly say my life has improved since they got involved and started supporting me. If you need any kind of support I’d suggest you look up your local Home Start office they could change your life too. 

Song Lyrics

This song touches home with me and I relate to the lyrics well. If I could write a song this would be it but this is Florence and the machine. Although Glee did a beautiful rendition of it which is much slower and that’s the version I prefer. 

Regrets collect like old friends

Here to relive your darkest moments

I can see no way, I can see no way

And all of the ghouls come out to play
And every demon wants his pound of flesh

But I like to keep some things to myself

I like to keep my issues drawn

It’s always darkest before the dawn
And I’ve been a fool and I’ve been blind

I can never leave the past behind

I can see no way, I can see no way

I’m always dragging that horse around
All of his questions, such a mournful sound

Tonight I’m gonna bury that horse in the ground

So I like to keep my issues drawn

But it’s always darkest before the dawn
Shake it out, shake it out, shake it out, shake it out, ooh whoa

Shake it out, shake it out, shake it out, shake it out, ooh whoa

And it’s hard to dance with a devil on your back

So shake him off, oh whoa
And I am done with my graceless heart

So tonight I’m gonna cut it out and then restart

‘Cause I like to keep my issues drawn

It’s always darkest before the dawn
Shake it out, shake it out, shake it out, shake it out, ooh whoa

Shake it out, shake it out, shake it out, shake it out, ooh whoa

And it’s hard to dance with a devil on your back

So shake him off, oh whoa
And it’s hard to dance with a devil on your back

And given half the chance would I take any of it back

It’s a fine romance but it’s left me so undone

It’s always darkest before the dawn
Oh whoa, oh whoa…
And I’m damned if I do and I’m damned if I don’t

So here’s to drinks in the dark at the end of my road

And I’m ready to suffer and I’m ready to hope

It’s a shot in the dark aimed right at my throat

‘Cause looking for heaven, found the devil in me

Looking for heaven, found the devil in me

Well what the hell I’m gonna let it happen to me, yeah
Shake it out, shake it out, shake it out, shake it out, ooh whoa

Shake it out, shake it out, shake it out, shake it out, ooh whoa

And it’s hard to dance with a devil on your back

So shake him off, oh whoa
Shake it out, shake it out, shake it out, shake it out, ooh whoa

Shake it out, shake it out, shake it out, shake it out, ooh whoa

And it’s hard to dance with a devil on your back

So shake him off, oh whoa

This song represents my thoughts towards my last and the fact I can’t let go of it and I’m always “dragging it around with me”

I have counselling on Wednesday I’m nervous, it’s been a month it kinda needs to be more regular but I struggle with childcare and I can’t take the little one with me. It’s something I need to do alone to concentrate and talk freely. I wish my family were more supportive and understanding. My auntie is really helpful but I can’t keep asking her to help. 

Hate it

Due to the amount of damage and breakage on my hair I made the bold decision to cut it short. I hate it. I hated it when I left the salon I cried. It had to be cut off there was no other option. I don’t look or feel like me anymore. My hair was the one thing I always took pride in although it wasn’t long I always made my hair look it’s best. Anything less then perfect wouldn’t do. 

There’s another reason I don’t like my hair so short it takes me back to a very unhappy time in my life. It brings back too many memories I try hard to forget until my counselling sessions come along. I have a story to tell I have my deepest darkest secrets to shed light on they’ve been buried within me for too long. This hair cut just brings things up to the surface. I feel like I’m seeing that scared broken person again. I’m trying very hard to see the positives in the hair cut but I’m struggling. I hope that it might help me overcome the Trichotillomania but only time will tell.