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. ✌🏻

Annoyed with myself 


My anxiety has been causing havoc this week it’s drained the energy out of me and caused arguments. The 9th September is quite a significant day in my life since last year it’s the date things went terribly wrong for my littlest boy. 

A year ago on this day started off normally like any other day I got the boys up and dressed, took the oldest to school he’d only been there 10 days. I met my volunteer and went to a baby group with the youngest and came home and my health visitor came to weigh him everything normal. No issues. Picked my oldest up from school and took him to his friends house for tea and the community nurse was due to visit at 4. She was late and turned up at 4:30 at 5 my eldest returned home and 5:15 my husband returns home from work. The nurse is checking the oxygen saturationssbd used two different machines as it wasn’t reading well. He was to be no lower then 85% he was reading at 74% so that was it before I knew it she was dialling 999 from her mobile explaining the situation. I’m in tears on the phone to my mum then I phone my sister and my grandad. I’m in floods of tears panicking. How is this happening I’m told its precaution and nothing to worry about. They will check hin over and he will be home. The ambulance crew turn up and we are blue lighted to hospital. I cried the whole way there I’ve never travelled so fast before. We got admitted to triage then on to the children’s ward. If his sats stay above 90% overnight we can go home. They did for the majority of the night but around 3am he was unsettled and kept kicking the probe off his foot. But it was classed as a low reading so we had to be transferred to the specialist hospital. I had no clothes with me, no nappies, no formula. I had a phone charger, a cardigan for my youngest and my purse. No food, no water, nothing, no hairbrush I had nothing. Yet we were being transferred to a hospital 60 miles away. I missed my eldest bless him he didn’t have a clue why his baby brother was carted off in an ambulance. I wanted to take my baby and run and come home. This wasn’t suppose to happen. 

A year later this is all still fresh in my mind and despite the date I went ahead with a therapy session. Stupidly should have cancelled it because today was also the youngest boys first day at nursery so anxiety kicked me big time. I couldn’t go through with the therapy and I couldn’t do what I was asked to do because I was too scared and too tense. I disappointed myself and I’m annoyed with myself. I phoned my support worker but she didn’t answer so I went wandering back into town centre feeling like shit. Feeling like I’ve wasted my time and the therapists time too. All that way for nothing. I got a call back from my support  worker and I just broke down in tears overcome with so much emotion and disappointment. I felt shit. Too much going on I was totally alone and I needed someone to talk to. She was that person. There  wasn’t anyone else. I can’t open up to people about it so it’s not likes there’s a list of people to call. I’m drained and I’m tired as I barely slept last night. I think I’ve taken on too much but I hate letting people down. 

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.

❤️

The end of all that was bad. 

Yesterday marked the end of the year that has been the hardest year of my life. I never want to go through what we went through oth our youngest son ever again. There have been some good moments it hasn’t all been bad but it’s not been great. It’s been during this time I’ve learnt who said they were there for me and proved it. My friends and professional support have been amazing and incredibly supportive when my family weren’t. I’ve never needed anyone before like I’ve needed people this last year and I’m forever grateful to those who I cried down the phone to, late night tweeted my worries and fears to or chatted to to make me forget things for a while. 

The check up with the cardiologist went brilliantly I feared the worst for no reason as it turns out. My little superhero as I call him still has a residual VSD but in time it may just close itself up. 

Going to the hospital I felt extremely nervous, i felt sick and despite reassurance from friends thatmy little one would be fine I couldnt believe it until he had all his checks and his echo. The best possible news we could have been given is that he is doing brilliantly. My little fighter is just fine. He will obviously need follow up care for the rest of his life but I can deal with 1 day every year to go and get check ups. There are 364 other days where I can just enjoy my children and be a family that doesn’t have to worry about oxygen sats, echo’s and ecg’s.

It’s marked the end of the year from hell now it’s a fresh start our new beginning starting all the birthday celebrations today.


My little boy turned one he had no idea what was going on but we made it special for him. We needed it to be as proper celebration like he has been born again.


We helped him open all his presents and cards, then we took a cake to a baby play group where all his friends are and celebrated with them. We then came home and had a visit from my parents and some friends. As per usual family weren’t the ones making the day special it was my friends. They came up with their children to play and have cake. They made so much effort I’ll be forever grateful to them. These people are my “family” all of them. They got me through the tough times and have been there through the good times too. Along with the all the support I’ve had I’ll be forever grateful to these people because without it I wouldn’t be where I am now. I finally feel free of everything that’s weighted me down. I feel like a new person. The person i wanted to be for this special day. It’s a new beginning for my family and I can wait to start our new adventures and leave the past behind us. Yesterday I cried with relief with being given good news, today I have cried happy emotional tears. It’s my baby’s first ever birthday and I’ve created some wonderful new memories to replace the old.


 

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.

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?