Easter Holidays

The first week in the holidays was hard being on my own 10 hours trying to keep the 2 boys occupied and trying to cope with my eldest son meltdowns and fears of new places. But this last week has been even harder. Having my husband at home I thought things would be easier but they haven’t been.

It’s been no end of tears, tantrums and meltdowns. Last night I lost it I got to the point of no return. I shouted at him despite knowing he hates it. I couldn’t think of any other way to get through to him. Then I broke down in tears in front of him. I have tried and tried to help him, talk to him and reassure him. 

It took him an hour to eat 5 things on his plate then complained he was hungry. He wanted the iPad but after several meltdowns coming off it in the last few days we said no. That didn’t go down well. I’ve run out of ideas, I need support at home with him because he’s becoming increasingly difficult. I understand he finds things hard but I can’t get through to him to find out what’s causing it. I know he’s missing school, I know he’s missing the routine but I can’t help those things.  He’s always going to have school holidays. I have done all I can. 

I’ve had counselling this week which makes it harder. I’m trying my best to keep up with everything and I’m failing. Everyone is saying how well I’m doing but the meds are doing it for me so it’s all untrue. I want to reduce my dose and start weaning off them. I want to see myself how far I’ve come and if I can go on now with life without them. Then and only then can I say that I’ve done well. 

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CHD poem

Time to share, become aware,cause CHD is always there.

Never ending, never cured,

its hard but hey, we’re never bored!
Endless check ups, scans and tests,

no time to relax, stop or rest.

Making the most of every day,

in case tomorrow doesn’t go our way.
Picking up every cough and cold,

that’s normal for us, so I’m told.

SATs going down, heart rate high,

phone the doctors with a sigh.
Another check up, another test,

Will we ever get to rest?

CHD is there for life.

An incurable cause of grief and strife…
But would I change it? Not a chance!

Though it might not be a merry dance.

My heart warrior has an important role,

His broken heart made mine whole ♡

New day…

I heard this song the other day and I fell in love with it. It’s the kind of positivity I need to keep me going on the right path. I heard it while watching “An evening with Take That” 

I’ve listened to it every day. I just love the words. I got through yesterday without any problems. I didn’t feel overly emotional I didn’t look backwards. I didn’t replay the day. I kept busy. I got through it. I have the 7th of may to get through then I will have officially moved forward. 7th May was more difficult as I was expecting everything to be ok. Then the open heart surgery bombshell hit me. If I can get through then I can get through anything. 

New Day – Take That

Yesterday’s news is yesterday’s news

Yesterday’s blues is just a shade of colour

Call me naive but we’re building for tomorrow

So we can

So we can finish off what we started


Wake up, it’s a brand new day

Everybody’s gotta sing this storm away

So come along and, lead the way

Ooh!

Make way through the waterfalls

‘Cause together we will soon get past it all

No one ever needs to fall

No one ever needs to fall

No one ever needs to fall

All into position

One final frontier ’til we make it to the station

Heading up to Zion, listening to the radio (Radio)

Too much to regret, yeah

Still I’m a mon ami

And not a multi-tasker

Talking revolution, talking revolution

I talk about you all the time

Wake up, it’s a brand new day (brand new day)

Everybody’s gotta sing this storm away

So come along and lead the way

(So come along and lead the way)

Make way through the waterfalls (waterfalls)

‘Cause together we will soon get past it all

No one ever needs to fall

No one ever needs to fall, oh oh. 
We can lose it all, can lose it all tonight, oh oh

We can make it out, can make it out alive, oh oh

If we can give it all, can give it all the time, oh oh

We can finish off what we started
Wake up, it’s a brand new day (brand new day)

Everybody’s gotta sing this storm away

So come along and lead the way

(So come along and lead the way)

Make way through the waterfalls (waterfalls)

‘Cause together we will soon get past it all

No one ever needs to fall

No one ever needs to fall
Every morning it is a brand new day

Every morning it is a brand new day

Every morning it is a brand new day

Every morning it is a brand new day

Every morning it is a brand new day

Every morning it is a brand new day

Every morning it is a brand new day

Every morning it is a brand new day

Trying 


So yesterday was my youngest boys 2nd Birthday. I gotta admit the night before I was a little bit emotional. He’s growing up he’s 2 now. Sad reality that I no longer have a baby. His birthday was lovely I really enjoyed it, we had a really nice birthday party for him and the kids loved it. 


Today I’ve kept myself busy because I don’t want to think about tomorrow and what it meant for us 2 years ago. I’m trying so hard to stay positive and think of all the amazing things we’ve done since then. My counselling sessions are helping me see things in a different light. I’ve been told that I’m punishing myself and making myself re live it instead of moving on because I blame myself for his heart defect. My little boy has done brilliantly well since we were told about his heart defect. This time last year he could only sit up he couldn’t sit himself up, he could roll over, he couldn’t put his feet on the floor, stand or crawl. This year there’s a massive difference he can do all those things confidently now. He’s even moving around furniture to get to places. He’s not walking or talking yet but this time next he will be. 


I’ve shielded his diagnosis for so long because I didn’t want him treated any differently to other children. I didn’t want sympathy for him and I didn’t want attention on me or him. I’m becoming more open about it now sharing more about him. Not because I’m stuck in the past because I’m trying to think and look to the future. 


2 years ago was an extremely difficult day for me. Being told about a heart defect in your baby that’s only 2 days old. It’s a shock to the system. It wasn’t ever something I could prepare myself to hear. He’s come so far and I’m so proud of him and I’m trying to overcome this emotional side of it. I need to say the words out loud without crying or feeling tearful. I need to believe that I did cause this, I was not to blame and I need to stop punishing myself thinking I let my baby down. I need to stop being jealous of other children’s milestones and be grateful for the ones he’s hitting. I need to stop being jealous of people with healthy babies. I need to stop getting angry at people for making big dramas out of Childrens general ilnesses. They didn’t live through what I did. They don’t understand. 


One thing to help me find my future was the fact that the cardiology hospital appointment went well. His heart function is good, the residual vsd still there but causing no problems and we don’t need to go back for 13 months. Onwards and upwards. (Hopefully)

Improvements 

There been quite a change in me for some time now roughly 3 months. I’d say it’s the meds keeping me stable I don’t know. Either way things seem to be going well. 

Relationships with my family haven’t been great for a good few years. I always got upset when they didn’t make an effort but I’ve come to realise that some people don’t have the ability to change. I have learnt to accept them as they are. I see things differently now I always saw them as selfish but maybe he’s not actually the case. Yes it can be annoying that we don’t get help from them with my 2 boys. But at the same time they don’t know how to handle my eldest and they can’t pick up and carry my youngest either. So physically they can’t look after my boys. 

I can laugh and joke about not being the favourite and it’s doesn’t bother me anymore. They stuck up for me when things kicked off with another member of the family. That meant a lot to me. They finally see the person for who she is. 

Elsewhere my mood is stabilised, anxiety virtually non existent. Well except for today. It’s my sons annual check up tomorrow and I feel nervous as hell. It’s the first one in a year. First echo and ecg in a year too. I think everything is ok but I can’t only see the outside I don’t know what’s going on with his heart and it scares me. Once tomorrow is over if it all goes well I can relax again. I don’t like relying on people to look after my eldest because I never know how he’s going to behave what’s going to upset him and I’ll not be there to calm him down if it all kicks off. Everything is flaring up anxiety and I feel sick.

This Saturday is my beautiful youngest boys 2nd Birthday. Almost 2 years since my world crashed down around me. I hope things will be different. I don’t want to be upset from re living the past. I need to look to the future and stop punishing myself and blaming myself for his diagnosis.