The shit hit the fan. 

Well today the proverbial shit well and truly hit the fan. A week or so ago I’d waited 15 mins for a bus 3 pushchairs got on before me one of which had a 3/4 year old able to walk in a stroller. It would have been nice given that I’d waited a long time and my 2 year old who is unable to walk was asleep to be let on my one of them folding a pushchair down. They didn’t so I had to phone for a taxi. I was already pissed off but then the driver that turned up put the taxi meter on before he got out of the car. Before I got in or even loaded my pushchair in. My son had just woken up he was still sleepy in my arms. I’d been charged by a so called family member to put my buggy in the boot. 

I told the guy who owns the company I was not impressed I was not happy. Well today I go to my sisters and ask for a taxi into town for 10:45, it turns up at 10:50 and it’s the same driver (the “family” member) that previously over charged me the week before. I needed the cab so I was gonna get in and say nothing. I left the house to go to the taxi and he tried to drive away I try opening the door. He gets out and says no I don’t want you in because of last week. I said fine I’ll walk. I rang up the firm again and says right I need another taxi and fast because he refused to take me. 

Then I ranted on Facebook like we all do. That’s when the shit hit the fan. My grandad having a go, my “auntie” (the drivers wife) having a go. All telling me I’m lying etc I was to get my facts straight. I had my say and I wasn’t backing down. The conversation ended with my grandad telling me not to go to his house again. Me saying fine by me. I was angry how dare they treat me like that. It’s no loss of mine and I have no intention of crying any tears over it. They are not people I want my children growing up around. 

Been a while

I’ve been neglecting my blog for a while. It was my source of needing to get out what was rattling around in my head through bad times. 

So what’s new?…. 

I have been completely off meds cold turkey for 3 weeks now. 90% of the time I’m fine. The other 10% is catching up. I had a moment on Wednesday where I had a rough day. When it comes to my heart babies health i am always going to be anxious. It was the uncertainty of not knowing if he had chicken pox or not. Turns out he does. Once I knew I eased off a bit. I kept my eye on him and it turns out just as testament to his strength he was too poorly with him. He had them pretty midly (thank god)

Tuesday last week I had a meeting with all professionals involved with my youngest. It went brilliantly. It was all so positive and everything Is going so well with him. Everyone recognising my hard work and how well I’m now. Felt good. 

I celebrated my 4th wedding anniversary we went out for a meal at a local restaurant. 

The toddler group my youngest goes to that have been so fantastic and supportive are closing down in July. I am gutted and now searching for a nursery. I put his name down for one near the centre of town. There was total miscommunication now I’m put off and looking elsewhere. 

The cardiologist referred my youngest to a genetics clinic back in April the call came today and I had to go through everything again right from the start. It got to me by the end of the call I was in tears. I’ve had a shit day I’m tired, stressed and emotional. Off meds 3 weeks and already wondering if I’m being tested on my strength. My life hasn’t been my own for 2 years. Constantly chasing appointments, making calls, going to hospitals. The list never ends. Today I give up I’ve had enough. 

Poem

It can happen during utero,Or sometime after birth.

The news that makes you tremble,

The news that shakes the earth.
“we hear a distinct murmur ma’am,

There’s an issue with the heart

We’re not sure your child’s chances ma’am,

It’s going to be a rough start”
You think “why me? Why us?”

As you try to choke back tears

Your world crashing around you,

While you’re consumed by your worst fears.
That sharp pain in your chest.

The heart break, like a knife.

Watching your precious child

Fight so hard for their life.
The first few months are brutal,

You walk around like a zombie.

Endlessly wondering

“will my baby get to call me mommy?”
“don’t worry, it will get better”

Is something you can’t stand to hear.

It feels like everything is getting worse!

The end, it feels so near.
Then suddenly the days,

Seem to get a little brighter.

As you stare with loving eyes

At your precious little fighter.
You’ve never been so proud

Of one single little soul,

Gradually reaching milestones

And accomplishing their goals.
A heart moms journey

Is one that never ends.

Filled with support and compassion,

Of other heart mom friends.
We all love a little deeper,

And care a little more.

Reminding ourselves everyday,

Of how much we can be thankful for.
We were given this life for a reason,

And at times it can get rough.

But we use our kids as examples,

Of how to remain tough.
For us, strength is not a choice.

It’s a lifestyle we have to lead.

It’s what keeps us going,

And it’s what our heart child needs. 💙

Recovery 

I have been suffering from depression for only 2 years. But in my life it’s been a very long very difficult 2 years. For a while now after starting meds I’d started feeling better. The anxiety went away with just a little bit left over. It was refreshing to have that break from feeling it so much for so long.

I had counselling which I was quite sceptical about it actually helping. I’m actually surprised that just by talking things through about the diagnosis of my youngest son and his operation it opened myself up to healing. The counsellor listened and told me I blamed myself and I held myself responsible something I already knew. But I guess I was way too hard on myself and shut myself off from emotions because I was trying to be strong. 

I had my last session last week and every week we do a scoring system to see how depressed you are. The last 2 sessions my scores were dramatically lower then previous weeks. Last weeks being so low she’s told me I’m in recovery now. Music to my ears. Emotions poured out like relief has washed over me. I finally feel like the person I was before with stronger beliefs and stronger friendships. This is the end of my journey with depression now. On Thursday I go to see my gp with intentions of lowering my 20mg dose to 10mg to come off medication. Getting to tell the person at home start that supported from the start that I’m in recovery felt amazing. 

Without their support and the support of my friends I wouldn’t be where I am now. I had love and understanding when I needed it the most. Thank you all for reading this blog 

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. 

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