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. ✌🏻
Going back a few posts I mentioned awhile ago I’d made a new friend. She went to the same open door sessions I went to. Many times she came in went into the office and came out in tears. I felt for her she looked like she was having it rough. I reached out to her. Mentally I was in an ok place I needed something to keep my mind busy and reaching out to this person did that. I invited her out for lunch with my and the ladies. I paid she said she had no money I wanted to do something to help.
We got quite friendly i wouldn’t ever say close but friendly. She’s a nice girl but she has had a lot of issues and trauma in the past. She’s not the only one. There was something about her that kept saying to me she needed someone to talk to. I quickly became that person. I didn’t mind at first but the more drama that happened around her the more difficult it became. Last weekend she had yet more drama police she social services turning up at her door (not for the first time)
It was then I confided in a very close friend that it was becoming too much. Too over bearing. She called 10 times a day, messaged me in between. I have 2 children I don’t have time for this. So wether I was in the wrong or not I backed off. Maybe I should have spoken to her. I didn’t ignore her but I distanced myself. It was the start of the 6 weeks holidays and my children had to come first. I had to distance myself for the sake of my children and my mental health. For that I’m not going to apologise.
However it seemed that me saying I’d been busy didn’t go down too well and she majorly kicked off. I took screen shots of all the conversations so nothing I said could be twisted. Well she decided that everything I said she would twist for attention. I realise now she’s probably done this many times before. She has a mental illness, I presume her mental illness combined with her past makes her thrive off the attention people give her. “I said her daughter deserves to be in care” “I threatened to phone social services up so her child would be taken away” all of it being bullshit.
It hurt that she was slagging me off calling me fake. Didn’t even have the balls to admit it was aimed at me. She denied it. I didn’t have to but I chose to help her. I chose to introduce her to my children and her to be in my life. I asked her to watch what she said around my autistic son he copied her and his behaviour changed as soon as she came to my house. I’m telling him off for kicking her and hitting her when he sees her kicking me, I don’t care that she was “having a laugh” he copies her he gets a bollocking how is that fair? She’s not an example to be set to my son. I don’t want my children surrounded by people who bring drama into my life. I need to be around people who understand my children and their needs.
I have nothing more to do with her now. At first I felt like it was me. I’ve had a fair few people fall out with me recently. No longer will I be the silent one and hold back on what I think. I will say what I think needs to be said. I need to stay strong and be pleased that I’m putting my children first. Not other people and their selfishness and drama. I’m sad I lost a friend but she was sucking life out of me. I feel for her daughter and what kind of life she will have, I fear for the the unborn child being put on a child protection plan. I wish her well in her future I just can’t be part of it.
Tetralogy of Fallot (TOF) is a congenital heart defect that is present at birth. Symptoms include episodes of bluish color to the skin. When affected babies cry or have a bowel movement, they may develop a “tet spell” where they turn very blue, have difficulty breathing, become limp, and occasionally lose consciousness. Other symptoms may include a heart murmur, finger clubbing, and easy tiring upon breastfeeding.
The cause is typically not known. Risk factors include a mother who uses alcohol, has diabetes, is over the age of 40, or gets rubella during pregnancy. It may also be associated with Down syndrome. Classically there are four defects:
a ventricular septal defect, a hole between the two ventricles
pulmonary stenosis, narrowing of the exit from the right ventricle
right ventricular hypertrophy, enlargement of the right ventricle
an overriding aorta, which allows blood from both ventricles to enter the aorta
TOF is typically treated by open heart surgery in the first year of life. Timing of surgery depends on the baby’s symptoms and size. The procedure involves increasing the size of the pulmonary valve and pulmonary arteries and repairing the ventricular septal defect. In babies who are too small a temporary surgery may be done with plans for a second surgery when the baby is bigger.Most people who are affected live to be adults.Long-term problems may include an irregular heart rate and pulmonary regurgitation.
TOF occurs in about 1 in 2,000 newborns. Males and females are affected equally. It is the most common complex congenital heart defect. It was initially described in 1671 by Niels Stensen. A further description occurred in 1888 by the French physician Étienne-Louis Arthur Fallot, after whom it is named. The first surgical repair was carried out in 1954.
Wording taken from Wikipedia
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.
It’s been a day of mixed emotions. Plans I made with a friend got cancelled last minute because one of her children wasn’t well and I handled it pretty well. Normally anxiety would have been raised and I’d have been wondering what I could do instead. So I went to town and decided I’d colour my hair instead.
I was feeling ok but I saw something on Facebook and I kinda got upset my it and I got jealous. I hate it it’s such an ugly emotion but here I am trying my hardest to get the physio done for my little one and I’m seeing how well all these other children are doing. They are walking, talking, standing and getting praised for it quite rightly so of course. It’s just a massive downer and slap in the face with a reminder that I’ve got to have physio involved for my son. He’s got a development delay because of his heart issues when he was smaller. He tires easily and I get paranoid about him being exposed to the cold. A constant reminder that my baby still has that small hole in his heart. I know it’s depression making all this harder to handle it just sick of it all. I get no help from family and I feel like I’m a constant burden when I say these things out loud and when I ask for help. I’m sick of people who don’t know what I’ve gone through with him telling me how well he’s doing. They don’t know shit and it feels patronising and frustrating. I would love to see my little one walk or stand unaided or stand against something unaided but it’s not that easy. It’s never going to be that easy it’s taking time and it’s slow progress and I feel like I’m getting no where with it. I feel defeated by it I want him to do well and I want him to have his independence it’s hard work having a 19 month old who can’t walk, or talk much. It’s tiring and it’s lonely and it’s hard.
A few weeks ago like I mentioned in a previous post I was contacted by a children’s heart charity about my sons story. Last night it was published on their website so I shared it to my Facebook page, well both actually. It’s had done lovely comments on it and a fair few likes. To my surprise it also had a few shares. One friend I actually feel guilty but I asked her to remove the link.
She volunteered for the charity I get support from so she has many of these people on her Facebook account. These people know nothing about my sons heart defect as I’ve remained quiet about it. I don’t want them knowing. As far as they are concerned they don’t know the reason I get support. I fear that once they know they will do the whole sympathy thing. The tilted head, the “oh bless him” blah blah. Neither of us need their sympathy.
Is that wrong? Should I have said something by now? By not telling people it’s not attention seeking. I feared that ht would be seen as that. I don’t share posts wanting likes on Facebook or sympathy, it’s to make people aware. It’s to show people how tough it’s been. To show the people who moan about their kids constantly how easy they have had it.
In a way I wish I had said something, keeping it quiet isn’t easy. Sometimes when one mother takes her kid to the Drs over every stupid little thing I wish I had said something. She needs a big fuck off reality check. Stupid little bitch.