I’ve been neglecting my blog for a couple of weeks. It’s not that I’ve not wanted to write I’ve just not had the energy or anything of substance to write.
Things are the same as usual for me, I have a day or two of “normality” and then bam out of nowhere it comes back and slaps me round the face.
I don’t always know what causes these big dips in the road sometimes it’s easy to figure it out.
I overthink every situation, I want to say so,eating I build myself up to say something then I back out. Then I beat myself up for not having the balls say what I wanted to say. That’s when I get the feelings of depression.
Last week for my youngest boy we had a speech and language review and a portage review, I was anxious in a good way because since the youngest was was last seen by them he’s made so much progress and I couldn’t wait to tell them. So speech and Language turned up and she was so pleased to see his progress and he independently signed “more.” I was so happy I’ve been working my arse off for months to get him to sign and he did it. Relief or what. Only thing is portage didn’t turn up, no call no no apology the next day nothing. I was pissed because she hasn’t seen my little one since July. I wanted to share the progress he has made and get new targets for him. I called the school and I’m still waiting for a call to rearrange.
All this set off a stream of anxiety thinking are they going to continue their support?
If not can they at least visit him and tell me that this service is no longer needed. It also got me thinking that because he’s doing so well are all the support services other then speech and language going to stop? He goes to an early learning support provision 2 hours a week. There they do tactile play, sensory play, help him with his speech and language targets and help him with his development. They also teach him sign language he loves going and they are brilliant. I don’t want these sessions to stop just because he’s doing well. He’s doing well because he has these things in place. I don’t want these to stop just because he’s now making progress. I need these targets so I can get him back up to where he should be. He’s approx 9 months behind.
On Thursday after a support catch up visit at home I wound myself up, I built myself up to get something out in the open and tell the person what I would be working on with the new support from pathways. I couldn’t do it, I couldn’t say anything then I got pissed off with myself. I felt very low afterwards beating myself up. Saying all the anxiety causing issues out loud I felt so stupid saying them because there’s been no say of services stopping it’s just my stupid anxiety.
3 years ago I was so bloody different. Before the heart defect diagnosis in my youngest I never needed any support, I never needed help, it wasn’t suppose to be this way. I was suppose to have my baby and come home and be a family of 4. I wasn’t suppose to have anxiety and depression and need all this help. It’s like I’m sick of needing help but at the same wondering what the fuck I’d do without these people now. It just wasn’t suppose to be this way. I miss the life I could have had, the life I had with my eldest just me and him and our family. I’m so grateful I have the support I just wonder what it would have been like to not have needed it.
I’m also grateful for my little un biological sister V. I can always be honest with her and tell her how I’m feeling. She gets it she understands and she doesn’t mince her words. She snot bitchy she just tells me it straight and tells me what i need to hear. I love her and I’d be lost without her.
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.
After feeling really low around my little boys heart Anniversary I gave myself a kick up the arse and told myself to suck it up.
It kind of worked, I did pick myself up a bit but as I’m learning recovery from depression isn’t that straight forward. This week or so has not been easy. I met someone who is suppose to support with mental health issues at a training centre. I didn’t really think much to her. She didn’t make a very good first impression to me. Instead of being supportive she kind of just told me my marriage has gone horribly wrong. Thanks love thanks for that. That’s really what I needed. I come to you and explain that depression and anxiety is one again affecting my life and she doesn’t offer and support. She has no children so she can’t possibly understand how hard it is and how mentally demanding it is having 2 children with additional needs. I felt worse coming out of there than I did going in. I’m suppose to go back in about 2 weeks.
Earlier this week I met up with a peer link worker. This was actually really helpful the women I met was lovely. She listened she didn’t judge, she said she experienced similar things. She said she can help she can be someone I can talk to. She recognised how closed off I was, all the anxious habits I have that I didn’t notice. I meet her again this coming Thursday to have another chat and try to get to the bottom of the triggers.
Today I had a hospital appointment I was dreading. Genetics. I text a former support worker on Wednesday to check if she could still come to the appointment with me she said it was still fine. I felt relieved she could still go. Today she text me and said she has to cancel. Her daughter was sick during the night and she didn’t want to leave her. I appreciate that these things happen but I just cried. I didn’t want to go to this alone. Anxiety was telling me she planned this to make me face this alone. Anxiety said that she could have left her for just a couple of hours. I wanted to cancel but I didn’t have enough time to do it. I only had 2 hours notice before the appointment time.
I have felt so crap so low so anxious all day. I went to the appointment alone I had no choice. I told the genetics doctor I had no interest in my son having any tests done. When the referral was made he wasn’t walking and he was quite far behind in his development. That was their concern however it’s not mine. He is catching up, he’s behind yes but that’s not Genetics it’s the fact he has a heart defect that limited what I could do with him. He was either constantly sleeping or feeding until his surgery. He wasnt being stimulated enough it’s no wonder he was behind. He has his surgery at 5 months old he was in hospital for 2 weeks. Then after surgery he had to recover.
It’s no wonder the poor kid is behind. Maybe it’s my fault maybe I sheltered him, over protected him. Just like I blamed myself for his heart defect.
I’ve basically felt shit all day. Crying on and off since 9am. I can’t wait to just crawl into bed and go to sleep.
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.
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.