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. ✌🏻

I feel like a new person 

Everything a year ago in honesty was pretty shit I was having an extremely tough time coping alone. I’d been through hell and back. But today I feel like a new person. Something I never thought I’d say again.

I’m actually loving my life right now things feel so great. I have some great support around me and I have a couple of new friendships that blossomed from the place I go for support and I’m actually enjoying spending time with my friends. I text or message them on a daily basis I arrange plans and keep them. I’ve been spending time alone and letting my husband do more with the boys. 

All trivial things to someone else but massive achievements to me. I’ve had 2 nights “out” drinks at a friends house leaving the kids in bed. I actually have a social life. It’s an Incredible feeling. In 5 weeks I’ve completely turned my life around. I feel so different so much better and a little bit more confident.

I couldn’t spend time alone at all now I actually enjoy coming home and spending time with the baby on my own. I’m eating more and  I haven’t skipped a meal for the last few weeks. I love the change in me and I’m glad it’s not going unnoticed. I’ve worked hard to get to where I am and I don’t want anything to change that. Before the baby’s check  up I couldn’t look to the future I had a year of uncertainty. A year of wondering what was next but I just love each day as it comes now. I feel like I have made massive improvements to my life and how I think and feel. 

I’ve made huge accomplishments like going out without make up on a few times. Caring less about having to do my hair. Wearing different styles of clothing I never had the confidence to wear. I haven’t done this alone I’ve had a great support network behind me while I get my life back. One person is missing and we are missing her but I hope that one day when she’s feeling better she will come see us again. But I hope she knows that she’s helped me so much along with others. I’m enjoying my life and I hope it’s gonna stay this way. 

It’s all down to the people I have around me without them I don’t know where i’d be but it wouldn’t be here where I am now doing what I’m doing now. They are so incredible. 

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.

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. 💜

 

 

Support

I mentioned that I get a lot of support from various people for my mental health now but the support I’m lacking is from the one person that should be supporting me the most. My husband. As I’ve said before I’m not the greatest at talking but I have tried and failed several times to talk to my husband. Every time I talk to him about anything he always makes it about him and somehow comes off as if he’s got it worse. It’s no competition but here’s what I’ve he to deal with that he hasn’t.  We have an older son so while i was in hospital for 3 days after having the baby he was with our other son. When the doctors found the heart murmur i was alone, when they did the ecg I was alone and when they did the echo on his heart again I was alone. Then the diagnosis came and once again I was alone.

A couple of weeks after the baby was born he went to work full time and there was me on my own 5 days a week with a newborn and a nursery age child. I dealt with everything alone while he was at work. Nurses coming in to check sats and our health visitor coming to weigh the baby once a week. I did it all alone. I went to the hospital appointments to the cardiologist alone too. I’m not saying he didn’t feel things too but he didn’t have to deal with what I death with on a daily basis.

When things turned into an emergency situation and the baby was rushed into hospital he stayed at home and looked after the older boy while i once again dealt with doctors and nurses and had more sleepless nights. I slept in a chair next to his bed that’s when I actually slept. I slept with my head leant over on to his bed for the first few nights and was in hospital for just over 2 weeks. They came to the specialist hospital but still I was alone most of the time. When we came home once again he returned to work and I was the one dealing with hospitals and getting the other boy to school. Booking hospital transport arranging someone to be there for the older boy. Missing him and not spending time with him as much as I wanted with going back n forth to hospital.

Now when I’ve tried to talk to him several times and failed I gave up trying. I write a mood diary every night for one person to read to see how I’m doing and what I can improve on. It’s my therapy. It’s private I let one person read it and only that one person. So I caught my husband reading my book I confronted him a day he came up with some pretty pathetic excuses and turned it round to say how bad he was feeling. I told him under no uncertain terms it was private and asked for respect of that privacy. He’s once again breached my privacy and read my book cover to cover. So right now I’m nothing short of pissed off and upset. There’s no point confronting him again it clearly had no affect last time. I’m sad that he felt the need to read my personal things. I know some will say there should be no secrets in marriage but it’s not like i haven’t tried to tell him everything he just doesn’t want to listen. He’s got it much worse then me why would he listen?