Reading 

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. ✌🏻

Taking things to heart 

I tried very hard today not to let someone’s comments about my parenting bother me but it upset me and the person saying this things only knows me in a baby group setting and by the information I share with her which isn’t a lot. These people hardly know me but still choose to make comments possibly without thinking how it can affect the person they say it too.


I’ve overcome much worse in my life but I’ve had enough going on without people making out I’m a bad parent. I try my hardest every single day to be the best mum I possibly can to my children and some days it’s easier then others. I’m not perfect and I don’t claim to be perfect but I believe I’m a good mum. I put my children first in every decision I make every day. With everything I’ve had to deal with I’ll admit I’ve done things wrong. And probably made some things harder for myself but with the life I’ve been given I believed at that time it was the right thing to do.

I was reduced to tears today because I just feel that this person is making me feel like nothing I do is good enough nothing I do is right. I can’t go somewhere to be made to feel like this. I have worked my arse off to feel better and I don’t want to get dragged back down again. I’ve got some great friendships and people have been so incredibly understanding and even the people I’ve only known for a few months have been great. 

So I do things differently, so I’ve made mistakes. I am only human. People are so quick to judge me but they haven’t lived my life and they aren’t the ones trying to deal with things like I am.

I needed to get a good sleep at night and I needed to know my little boy was safe and to me that meant he slept in my bed and still does now. I still have anxiety issues I need to work on but it’s one more thing to overcome when he goes into his own room. Advice I can take on board criticism I can’t.

My worry about speaking out about this upsetting me is people thinking I’m being over sensitive because I suffer from depression. Feeling stupid because someone upset me over such stupid little things. But all  those stupid little things add up and it plays in my mind and it gets to me. They don’t hear the comments I get about a one year old not crawling, they don’t see the judgemental looks I get when I say my one year old can’t crawl or the looks I get when my 5 year old struggles in a setting and he can’t express his emotions and gets frustrated. I wanted to speak someone so I did and she has known me a year now and has helped me through everything she’s not a friend but a professional person. She said she had no concerns at all over what I’m doing if she did she’s bold enough to say it to me.

I do feel stupid for ringing her but I needed to talk to someone about how I felt. I’m lucky that if I continue to feel the way I do that she will help me and get it resolved.

 I don’t want to stop going places I get support from and a place where I did made 2 new friendships and helped an existing friendship become stronger but if she makes me feel like crap anymore I will just stop going.

What’s it’s like to have a CHD child 

I saw this on patches heart group on Facebook and wanted to share it. ❤️

Whats it like to have a child with a CHD ……
Its cocktails of medications …

Its wondering “WHY”

Its monitors and oxygen

Its feeding tubes

Its calories and weight gain

Its the drama of eating

Its the first time I held her

Its knowing that I need help

Its making a hospital a home for a while

Its seeing my reward in every smile

Its checking sats

Its caths, xrays, and bloods

Its thinking is she blue

Its cringing inside what shes been through

Its dozens of calls to her doc

Its winter and hand sanitizer

Its knowing this journey has made me wiser and humble

Its watching her sleep

Its surgery days

Its handing her over

Its knowing her heart must be repaired

Its waiting for news

Its praying

Its hoping

Its the bond we share

Its that long faded scar

Touching it and knowing we are blessed

Its their lives that remind us we still need to fight

Its finding the strength to have hope for tomorrow

And we’ll never be the same

Its changed me and my family

Some people have distanced themselves from us

Some people stop asking because everyday is a new challenge

This is what we face each day

This is a CHD child

This is MY CHD child and if I go on about the simple things she does its because every morning when she wakes up it is one hell of an achievement

And I’m so proud of my heart warrior.

❤️

Heart Parent Bingo


I’ve heard several of these and some more recent then others. The most common being “is he crawling or walking yet” really bloody irritates me when people ask why my youngest isn’t crawling or walking at a year old. Well I’m sure if their babies went through what mine did they might not be walking or crawling yet either. I hear other people at groups making their lives sound more dramatic then they actually are. That also annoys me because going back when my baby was first born or going through his op I’d have killed for a drama free life. They sit there silently judging me because I was very over protective of him after the op and he’s not crawling at his age. They don’t know what he’s been through and they don’t know what I’ve had to live through for the past year. I hate the comparisons even between family members what their baby can do well my baby survived open heart surgery at 5 months old so that pees all over what everyone else’s baby can do. My boy will walk or crawl when he is string enough and ready to do it until then I just appreciate all the other firsts he accomplishes.

Feeling stronger

Since I made the decision to get my life back I’ve been feeling so much better and stronger. I feel amazing. I’m pushing myself in a good way to see what my limits are. I find I’m being more open about the youngest and the depression I had recently. I’ve not been such a closed book and I feel like being able to talk about stuff is what’s helping me feel that bit stronger. 

It’s nice feeling like the dark cloud I had looming over me for so long is finally going. I feel more positive and what’s on the inside must be showing on the outside because I’m being told how well I look.  I honestly can’t believe the change in me from how I felt a few weeks ago. I definitely feel like my spirit is back. I’m actually doing things on my own with support for back up. It feels so good knowing it’s not fake or forced when I’m smiling now it’s genuine how I feel is genuine. I also feel like I’m dealing with things around me alot easier. It’s easier to make and keep plans with friends, I spend more time at home which I feel quite proud of myself for because a few months ago I couldn’t be at home for any length of time. I let my husband do more with the kids now then I did before which speaks volumes in my world. 

So far I haven’t dipped down but I feel that if I do I’m strong enough to cope and pull myself through it. I’m eating quite well too which I feel is another dramatic change in me. A few weeks ago I felt weak, I felt defeated and I’d lost myself completely. I’d felt extremely low I’d not felt like that in a long time. Now I feel so much better and dare I say it I feel happy and content within myself. I feel secure about how I’m feeling and how I’m handling things. I’m looking forward to the next chapter of my life and celebrating my little superheroes birthday in less then 2 weeks. I look forward to the day I can say I’m over it all and how I used to be depressed. I’m getting there and that day doesn’t feel too far away anymore. 

Family doesn’t always have to be blood.

Last night I was really upset and emotional because of my so called family. Today it wasn’t much better to start with, I shouldn’t be surprised by the way i get treated by family but it still hurts. I have a handful of very good close friends one of them happens to be an ex going back 10 years ago but we remained friends he’s now married to another one of my close friends. Anyway he’s the kind of friend that doesn’t really do serious but normally makes me smile by being daft. I got a very touching heartwarming message from him this morning because he’s known me 16 years now he knows my family well. He was disgusted by what my family have done over the years. More so this last year with everything I’ve been through with my youngest son.

The message made me cry because it was so sweet what he said to me “don’t be dragged down by others. Concentrate on the people that are in your life supporting you and who are there for you. Yes your family should be playing that role but it’s their loss not being involved. Your kids have plenty of loving people around them and although your family should be stepping it up to support you, take it from the people who are choosing to be there for you – the ones that don’t have to. They are your family. They say you can’t choose your family – but you can. People don’t have to be blood related to be apart of your family. Don’t dwell on who’s not there as it will push you away from who is” he’s right I can choose my family. My best friend I always refer to as my sister. She might not be blood but who said blood has to be thicker then water. She has been there for me through everything for 16 years and I’ve been there for her too. 

I have another friend I met through my mum many years ago but she has been a very good friend to me, I’ve been on the phone to her many times in tears and she’s talked to me about everything telling me how strong I was when I felt so incredibly weak. I didn’t feel strong but somehow she knew I was stronger then ever I thought I could be. She’s been an incredible friend to which I’ll never forget. I hope she knows how grateful I am to her.

Another friend said to me she can be my little sister well to be fair I see her more then I do my actual sister’s and she’s been there more in the last year then my “real” family.

So yes family doesn’t always have to be blood related they don’t have to be there to support me but still choose to be. I love my friends dearly i don’t know where I’d be without them. 💜

 

 

surgical repair

The day of the surgery arrived a day that will be forever etched into my brain. Tuesday 15th September 2015 I sat by my boys bedside from 3:30 I wanted every second I could get with him before he had to go to theatre. I sat there watching him sleep wondering if I would ever see him again. I draw the curtains around his bed because I want him all to myself and I don’t want anyone to see me cry. The surgeon comes at around half 7 I’d cried from 3:30am and I still wasn’t done. I cried the entire way holding my baby boy in my arms carrying him to the operating theatre. I didn’t want to go in because I knew I had to leave him there and walk away, I had no choice it was that or eventually his heart wouldn’t cope anymore.

I laid him down and they gave him the anaesthetic and he fell asleep. I held his hand and kissed his head and told him I loved him. Now I’m not a religious person but I prayed that it wouldn’t be the last time I ever get to tell him that. I walked out and it broke me I cried harder then I had ever cried before. I didn’t want to leave my precious baby with strangers he needed his mummy.

By 1pm I still hadn’t heard anything, it had felt like days not hours. I wanted my baby back I needed to see he was ok. 1:30 pm came a knock at the door that the operation had gone well and as soon as picu were ready we could go and see him. I was so anxious to see him not at all scared my boy was alive that’s all I could have hoped for. I walked into picu and relief washed over me the machines didn’t scare me I was just so happy to see him I ignored all the machines and kissed him.

I couldn’t wait for my first cuddle with him after his surgery, he seemed so fragile I was scared of breaking him but I wanted my baby back in my arms. It had been days since I last held him and the moment he was passed to me it was like the first time I’d ever seen him just that rush of love came over me and I didn’t want to put him back down. After 4 days his character was coming back he was playing and smiling my boy was getting better. He spent almost a week on picu before going back to the ward.

It was an extremely tough time and I didn’t cope well my anxiety rose every time they shut down picu because of ward rounds and life threatening situations with other babies. You always thought to yourself “is that my baby?” Or “thank god it’s not my baby” It was so hard going between wanting to spend time with my eldest son and going  back n forth to picu to see the youngest. I didn’t eat, I didn’t sleep that much I just went to and from each boy for a week before we were finally allowed home.

It was the hardest and longest 2 weeks of my life I had never felt so alone and out of control. I had never been so terrified of anything before in my life and nothing will ever come close to how I felt back then.  I was so glad to be back home but my anxiety didn’t go away I still live with it 5 months on.