Well today the proverbial shit well and truly hit the fan. A week or so ago I’d waited 15 mins for a bus 3 pushchairs got on before me one of which had a 3/4 year old able to walk in a stroller. It would have been nice given that I’d waited a long time and my 2 year old who is unable to walk was asleep to be let on my one of them folding a pushchair down. They didn’t so I had to phone for a taxi. I was already pissed off but then the driver that turned up put the taxi meter on before he got out of the car. Before I got in or even loaded my pushchair in. My son had just woken up he was still sleepy in my arms. I’d been charged by a so called family member to put my buggy in the boot.
I told the guy who owns the company I was not impressed I was not happy. Well today I go to my sisters and ask for a taxi into town for 10:45, it turns up at 10:50 and it’s the same driver (the “family” member) that previously over charged me the week before. I needed the cab so I was gonna get in and say nothing. I left the house to go to the taxi and he tried to drive away I try opening the door. He gets out and says no I don’t want you in because of last week. I said fine I’ll walk. I rang up the firm again and says right I need another taxi and fast because he refused to take me.
Then I ranted on Facebook like we all do. That’s when the shit hit the fan. My grandad having a go, my “auntie” (the drivers wife) having a go. All telling me I’m lying etc I was to get my facts straight. I had my say and I wasn’t backing down. The conversation ended with my grandad telling me not to go to his house again. Me saying fine by me. I was angry how dare they treat me like that. It’s no loss of mine and I have no intention of crying any tears over it. They are not people I want my children growing up around.
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)
Thursday was a pretty bad day. I was very emotional and upset. I didn’t have anyone to talk to but my friend L and I were talking on Facebook messenger and asked if I wanted to meet her Friday morning while my youngest was at toddler group. I would have normally said no but I really wanted company and I agreed.
We ended up spending the whole day together she took me to get my little one from toddler group and the she said she would kidnap us. It was actually really nice and I enjoyed her company. Sat there chatting and watching the kids play. It started the ok couple of days I’d had.
Yesterday after my oldest son lost some Lego under the sofa I decided to change around my entire living room. It looks so much nicer and more spacious now. I was knackered after all that went to bed early and the little one had me up early so I was still tired this morning. Normally on a Sunday I don’t do a great deal but I made cupcakes with my oldest, cleaned out the guinea pig, swept the carpet (because the oldest being autistic he hates the sound of the hoover) then cleaned all the windows, washed my bright pink hair then cleaned up the mess I made in the bathroom, dried and straightened my hair then finally sat down to watch a bit of a film before the youngest boy got tired. So basically I’ve hardly had any time to relax today. Because it’s been so crazy and the youngest boy not going to sleep when he should have it got to my emotions. I got upset over stupid little things, my husband ignored the fact I was stressing at the kids and continued to spend half an hour cooking his own tea while I didn’t even get to eat the crappy pasta snack mug thing I made for mine. So today was crap. Hoping tomorrow will be better.
I’m trying to think of the best bits of 2016 so I try my hardest so start the new year in a positive frame of mind.
I look back and my mind goes straight to the awful moments of the year. Firstly I expected that I wouldn’t still be fighting off depression and anxiety. Things became worse for me when I opened up a can of worms confiding in someone about something that happened 15 years ago. I thought once I said it and got it out there I’d feel like a weight had been lifted. Temporarily it did, I felt free of it like the secret I’d been keeping locked away had freed me from it. But when march came and I’d found out someone had moved back into my town it went seriously downhill and caused more anxiety then I already had. I had to let other people in on this secret. It’s been pretty hard letting people in on this secret and talking about it and getting support to deal with it.
The only plus side is the support I have had has been amazing. My friend V has been at the end of every message or video call when I’ve been in tears. We really properly became close again this year. Closer then ever before and she’s classed as my little sister. This girl is a warrior princess or something. Despite her own issues she is there when anyone needs her. Everyone needs a friend like her in their lives.
This year my youngest boy celebrated his first birthday and his heart Anniversary. My eldest turned 5 and settled into his new class really well and has achieved so many things in school and home.
I usually make ridiculous New Years resolutions that I never keep. All I want for next year is my children to continue to progress in their own unique ways and hope that this time next year I’m in a much better place with my mental health. I want to free from my demons in 2017.
I’ve been thinking about the support I get and how grateful I am to have it. Maybe if my “family” were more helpful or more supportive maybe I wouldn’t rely on these people so much.
If I had a half decent support network from my mum and sisters instead if being ignored and pushed out I wouldn’t need to talk to a support worker so much. Not that I’m not grateful she’s there because I’ll br forever grateful to her. She’s saved my life and she’s saved my family. She’s my inspiration. I’d love to in a couple of years time use my experience as needing support to support someone else.
I sit with tears falling down my face wondering why my family ignore me and cast me aside. Wondering why I’m not good enough for them. Why my boys get ignored? Innocent children also get cast aside in favour of my sister. What did they ever do wrong? I’m only good enough when my mum wants her hair colouring or my dad wants Christmas cards writing. None of them have a clue what I’ve gone through in the past, what I’ve been through with my youngest or the daily struggles I face with depression ptsd and anxiety. What did I ever do to deserve being treated the way I get treated by them? Why can’t I have a loving family? Someone to talk to on tough days? Someone to confide in? My mum to understand what I’ve been through, someone to tell me everything will be ok. I don’t have that. I never will.
My sisters are my two closest friends D and V. D being my big sister and V my little sister. These girls are my family. They love me for who I am flaws and all, they love my boys for exactly who they are. They support me, listen to me when I need a sounding board and they are honest with me. V gets me I can tell her anything and this means to world to me. I can ask her anything and she’ll tell me the truth even if it’s not what I want to hear. She gets me because she herself has mental health issues so we can bounce off each other and support each other. Without the support and the few close friends I have I’ve no idea where I’d be. I just know it would be a very dark place.
I managed to keep myself together today after yesterday, I’ve been out with my little one to the open door group so it was a nice distraction from over thinking.
My mind is working overtime and I’m not really processing my thoughts on yesterday. It doesn’t help that I can’t really talk about it fully not on here, not in person so I’m stuck. I want to talk about it but other then writing it in my mood book I’m struggling to. I wanted to try and catch my support worker for a chat to fill her in on things that are going on and what happened with the meeting last week wit this new health visitor, shes arranged to come to my house tomorrow for a support review. I’m not sure if it’s a good thing or a bad thing it’s a bit out the blue. So now I’m overthinking that wondering why I’m having a review unless it’s because it’s been a while since the last one.
My youngest boy is still not well I feel like I’m being fobbed off with this “viral infection” I know my children better than anyone else. I spend all day everyday with him and I know in my heart something isn’t right. I’m torn between trusting my instinct and wondering if anxiety is playing a part in this. My husband has said that he’s noticed something isn’t right too. As much as I want it to just be viral I’m scared to death that it’s something else and I’m not seeing it. I’m terrified we will end up back in hospital again. I don’t know what I’m doing right anymore. I swear they think I’m crazy but they didn’t live through all those months of worry. I’m no drama queen but at the moment I feel like it.
I’ve got so much floating around my head I dint know what I’m doing. I forget everything, I have to write everything down or it’s gone. I’m getting things muddled up days, times etc. I find myself in my own little world and don’t always realise when I’m being spoken to. I go from not wanting to clean the house to bat shit crazy cleaning frenzies. I go from not hungry and skipping lunch to full on starvation mode. There’s no i between at the moment so even if I seem like I’ve got it together and my emotions are in check there’s so much more to it. I need to get this said I need people to know even If I look fine it’s just a pretence, it’s all for keeping up appearances.
So having a child with a heart defect really isn’t easy. I guess I’m relatively lucky that my little one doesn’t really have that many problems with his heart now but he still has a residual vsd.
When he gets poorly whether is a common cold or any other illness I immediately think it’s something more serious. It’s inbuilt in me to think the worst. My little one now 19 months picks up ilnesses and infections quickly. He’s picked up a viral infection as soon as he started coughing I took him to the doctors to be checked in case it was a chest infection. I swear they look at me like I’m crazy but once they see his scar they realise I’m not.
It’s reassuring that I’ve asked other heart mums if they overly worry and thank his they said they do. All the time. I’m glad it’s not just me worrying over minor illnesses. What other parents don’t realise is when your child has been through so much at such a young age they are even more precious. When doctors have stopped your baby’s heart and it’s been worked by machines you wonder if it’s ever going to re start itself. So while a viral infection is not nice for healthy children it’s harder for children with heart issues. They are at bigger risk from infection, their hearts have to work harder, their bodies have to work harder and it’s knocks the wind out of them. I see my snotty little baby struggling with this viral infection and I go right back to feeling helpless.
Mums with healthy babies should be so grateful they haven’t had to deal with what us heart mums have, don’t ever be dramatic about “poorly” children when they haven’t had open heart surgery where infections can be life threatening or a lot more serious.
Don’t compare your child to mine because it’s not a competition to see who has it worse. I’m my own worst enemy because I compare development stages and I shouldn’t so don’t do it for me. Be there to support me when I say my baby isn’t feeling well don’t just presume it’s nothing it’s never nothing with heart babies.