So this is a hard time of year my baby boy 2 years ago was admitted to hospital because his oxygen sats dropped too low. I’m spilt in 2 because there’s the logical side of me that sees the immense progress he’s made since. A year ago he wasn’t walking or even crawling yet now he’s confident on his feet after learning to walk in July. Then there’s not so logical side of me that remembers every single part of every single day 2 years ago. It’s the loneliest i have ever felt in my entire life. It’s the most terrified I’ve ever been aswell, you hand your baby boy to strangers and you have to entrust them with his life. Longest 5 hours waiting for news in my life.
I know he lived, I know he’s a healthy little boy etc etc I know all this. That doesn’t detach that it was still the hardest time I’ve been through. It’s not something you ever forget and its boy something you can get over in 2 years. It was a traumatic event and anyone who’s been through any trauma knows you don’t just get over it. Of course in years to come it will get easier and the awful memories and feelings of loneliness with fade. I don’t feel completely down I just remember how hard it was.
I find it hard to explain to people who haven’t been through it. Sometimes it’s like banging my head again the brick wall it’s pointless and it hurts. I don’t feel as bad as I did a year ago or even beginning of this year. I’m not going to let myself go down that far. I have a few days like this week where I’ve mostly felt crap with good reason. I might feel anxious and emotional this week because it’s a big week for my baby. Thursday his taster session at nursery and Friday is his heart day. The day he had 5 hours of life saving surgery to repair his heart.
I will celebrate his day and I will as always remain proud of him but I’m also allowing myself to feel however I want to feel. I’m not pressuring myself to feel great if I don’t. I’m taking each day as it comes. I’ve recovered once and I’ll do it again I have little support around me but I have a health visitor and if needed I don’t think she would mind me ringing her.
So I said that the charity that was the main support for me had lost funding so they couldn’t keep going with the sessions i was going to. A friend of mine V went to a counselling session for herself today (same one that I am suppose to be starting in a couple of weeks.) she was told that she can’t be seen anymore because she’s also lost her funding. It comes as yet another blow because I’m changing my son’s nursery day specially to fit around this counselling. I was told it would be every week on a Thursday but turns out it would have been every 6 weeks. But it looks like it’s not gong to go ahead anyway. I was relying on that to make me feel better and get better from this relapse. I was relying on to open up old wounds and get rid of old demons still haunting me, but now I can’t. What the hell will I do now? How am I ever going to feel better? And stop letting my past haunt me? How will I ever be able to talk about it.. I can’t go back to S2c because that will feel like a massive failure on my part. I tried other counselling and I couldn’t do it. I’ve fucked up my only chances to get real help.
I now have this genetics appointment through for 29th September at the hospital we always go to so I don’t have to travel too far. But to be honest it’s not the travelling I’m worried about. It’s the blood tests, the questions, the results, the whole fucking process. It’s not like it’s just one appointment. It might be 3 or 4 or whatever. What if there a genetic problem? I mean come on I’ve got one child with autism and one child with a heart defect it’s gotta be somehow my fault. I created them it’s my doing. My body let my kids down. I won’t have any other children now, i can’t put myself that through any of this again. There’s a possibility my youngest as well as having the heart defect could also be autistic. I can’t deal with it. I just try to pretend everything’s ok. My head is a shed.
Having an autistic child is extremely challenging it will make you question on a daily basis what you do wrong to start a meltdown. It’s tiring, it’s frustrating, it’s draining and upsetting when I don’t know how to help him sometimes. I wanna protect him from the world who judge him because he has a sensory disability. He hates hand dryers and we have to use the disabled toilets so he doesn’t hear the hand dryers. We get stared at for using them because people presume having a disability means a physical disability. He gets overwhelmed when its crowded, he gets overwhelmed at birthday parties. It’s a daily struggle so I can’t cope with two of them being autistic. It’s hard enough with one let alone both.
The youngest with his heart defect is seeing him before his operation struggling to finish his bottles because he got breathless quickly. He constantly fed. He still gained weight but he was always feeding. He wasn’t allowed to cry for long periods of time because he turned blue. Then taking him,down to the theatre and kissing him goodbye for what you think maybe the last time. Waiting for news for the longest 5 hours of my life. Seeing him in picu hooked up to machines breathing for him giving his heart a rest. It’s something you never get over. The struggle didn’t end after surgery it’s not like surgery is a cure it’s just fixes his heart his heart will never be normal he will always have tetralogy of fallot. This is why I will never have more children this is burned into me for life. I can’t take the risk of having another child with a heart defect.
Some days I don’t really have much to feel in the way of anxiety and depression in this relapse. It’s weird I can go from one night feeling absolutely shockingly shit. I’d be crying, writing over thinking and feeling like I could crawl under a rock and not come out. Then the next day it’s almost as if I didn’t feel that shit, that upset, that bad. Is that normal? Is that how this works or is this what I’ve had to get used to doing and now it just comes naturally that I have to pick myself up and get over it?
Night times are the worse. I feel stupid because I want to be alone. I don’t wanna socialise at night once my kids are in bed but then everything comes pouring out and the tears start to fall and I feel lonely as hell. My husband doesn’t get it he thinks everything can be fixed with a hug. I don’t need outsider support because I have him. I tell him I didn’t sleep well funnily enough neither did he. Even though we don’t share a bed. I co sleep with my 2 year old. I’m happy with my arrangement. I feel like shit guess what he does too. I can’t win whatever I do he has it much worse.
That outsider support is what I’m missing I need that someone not connected to my family or my personal life to talk to. I need that outsider perspective. Someone who asks me if I’m ok because they are genuinely concerned and wanting to make sure I am. I went to the open door sessions where kids can go and play and have a snack because it was judgement free (most of the time) now more so because there’s more understanding that my 2 year old has tetralogy of fallot and that despite being repaired it’s a life long heart defect. I don’t know what I’m going to do there’s still so much going on I’ve had a mini break from it all a taste of life with hardly any proffesionals involved and now all of a sudden once September gets here it’s all going to start back up again. He’s making great process with speech being the exception so I don’t know why I’m so worried.
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. ✌🏻
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)
A year ago today was without doubt the worst and most difficult day of my life. I had to carry my baby boy at just 5 months old to an operating theatre knowing I had to kiss him goodbye and leave him there with strangers. I know it saved his life but I wanted to be with my baby in case I never saw him again. I was terrified, I spent most of the day in daze holding back tears so i didn’t upset my eldest. I’ve never been so scared of anything in my life ever.
Today we celebrated our little boys heart anniversary. We bought 6 red and 6 blue balloons and 2 heart balloons and wrote messages on them and released them into the sky. My parents in law came for the day me and L made a red velvet cake and my non blood family came and celebrated with us. So many people came and made the effort to be there for him and us too.
I feel so blessed to have these people in my life the others just aren’t worth mentioning. I get so much help and support from Home-Start I’ll be eternally grateful for everything they have done for us and continue to do for us. My family aren’t blood but that doesn’t matter family are the ones who say they are there and prove it. They are the ones that offer help when it’s needed, offer a shoulder to cry on and they have looked after my little one when I’ve needed help. They are also the ones that distract you and make you laugh when you feel so down and crap.
I’ve decided to no longer do therapy sessions I hated lying to people about where I was going and why. It was too much pressure and I couldn’t handle it anymore. My story isn’t over yet but it’s affecting too any aspects of my life it’s time to be a better mum and concentrate on the autism course for my eldest. I have child care sorted and it’s only 2.5 hours per week so it’s not like I’m doing it twice a week and having to catch trains. I have funding in place for a childminder. I’m going to be a better upmum, I’m not going to let people bother me anymore. I’m not going to worry abi what others think or say or do. Fuck that shit. It’s me p, my boys, my husband and my non blood family.