Reading my last blog post my little sister V offered to have my boys for a few hours on Sunday so me and the husband could go out without the kids.
When I agreed to it it seemed like a great idea and very thoughtful of V to offer out the blue. Even though I slept relatively well I woke up still tired. Almost like I’d not slept. The kids woke up stupidly early and to be honest I just wanted to stay in bed. I didn’t want to get dressed, I didn’t want to go out. I don’t know what was going on. 6 days a week I get up I get the kids clothes sorted, I do the washing, fold clean clothes, feed the kids and get them where they need to be on time without fail. On a Sunday generally I stay at home in my pjs and I do nothing.
I got upset and wound up and made myself crazy about getting ready to go out. I just didn’t want to go but I don’t know why. What’s so wrong about going to lunch with my husband? The time we were to drop the boys off would have been the time my youngest needed a sleep. Knowing he wouldn’t settle for anyone I decided to let him sleep at home in bed. I cried as I cuddled him. Thinking I’ll never hear the end of it if I decide to not go. My husband will hold this over me for life. I try to tell him I’m not feeling great he thinks everything can be solved with sex, a hug ir watching a film. None of which i am remotely interested in. I want understanding, I want him to stop pestering me and pressuring me to spend time with him. Keeping my shit together all day is hard work. Nursery, school runs, everything else is tiring. By the time the kids are in bed I’m knackered. I just want to be left alone to lay in bed, watch tv, blog, write or draw. By 9-9:30 I’m ready for sleep.
I know it sounds selfish but I make sure my kids come first in every desicion I make every day. So when they are in bed I get to be selfish I get to think about my needs and what I want. So that’s what I’m going to do. I don’t get much time to myself so I evhiy by evenings to myself.
This week I meet my sons health visitor for a chat and a catch up while he’s at nursery. This causes anxiety because I’m used to seeing her at home while he’s around. I also meet my peer link worker for the second time also causing anxiety. I hate it I really hate it.
Going through things like mental illness and relapsing it’s been hard, at first I refused to believe I could have depression. For at least 6-7 months I was in denial. My son was born in April 2015 by July I was being told I had post natal depression. I didn’t accept this diagnosis ” I wasn’t depressed” despite the fact I wasn’t eating, wasn’t sleeping, I was crying all the time, when people spoke to me I had no idea I was being spoken to. I was in this daze.
I kept a lot of stuff to myself and spoke to no-one about my sons heart defect. Only those close to me knew. I didn’t want to be seen as an attention seeker. It was private for our family and extremely hard to talk about. In July 2015 my health visitor at the time came to see my son to weigh him as usual. Every week for 3 months I managed to keep my feelings a secret from her. I didn’t talk to her or tell her how I felt. She caught me off guard on this particular day. She’d seen us I was “fine” my little one had gained weight. “No concerns see you next week kind of thing.” After we saw her we saw the community nurse to check his oxygen sats they were all fine again. The previous week I asked her a couple of questions and I broke down in tears. I let my guard down. This particular day in July 2015 was the start of me getting the help I so desperately needed. During the nurses visit the health visitor was in a meeting with the nursery manager as I was at a baby group in a nursery. I’d got chatting to the nurse and once again emotions cake flooding out I wasn’t able to hide them as well anymore. My health visitor came out of her meeting and saw how upset I was so she stayed to talk to me. Already upset I couldn’t convince her I was fine anymore. I opened up and spoke to her told my fears, my feelings and that I wasn’t coping as well as I should be.
I was referred to home start in my local town, about 2 weeks later someone came to visit me at home. Someone who came to talk to me and listen to me. Everything poured out like emotional verbal diarrhoea. 3 months of worrying and feeling alone and now I had someone to talk to. The relief was immense. Just knowing there was someone I could talk to was amazing I was so relieved. Someone to visit me at home, someone on the end of the phone to talk to. I’ll always be grateful for that.
Even today when I’ve had an emotional week just having someone to talk to helps no end. I don’t feel so lonely when there’s someone there to listen. We’ve had snee health visitor for coming up to a year almost. Having her come to visit just means so much to me having her to talk to about things. Her telling me it’s normal to feel the way I do because if everything that’s happened with my 2 year old is a lot to go through. She came to visit today and I have no idea why I felt so anxious. I know her, I like her and I trust her. Why would I feel so anxious? It soon passed when she arrived but having it beforehand is so frustrating. As I was talking to her today about my exit interview from home start I got upset. I cried in front of her then felt like an idiot.
I’m so scared of letting people see me as vulnerable and upset because I see it as weakness, but at the same time I’m tired of trying to act normal and lie to friends about being fine. I told a friend Tuesday I was upset and she was lovely. I told her today I’d been upset and she was lovely and understanding I’ve always felt I had to be normal around her. I don’t know why. But I’m not hiding anymore I can’t keep my feelings locked up anymore. I’m not strong enough anymore.
I’ve realised it’s not necessarily having these people do something for you it’s just having someone there when you need to talk to someone.
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.
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 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.
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.
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.