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.
There been quite a change in me for some time now roughly 3 months. I’d say it’s the meds keeping me stable I don’t know. Either way things seem to be going well.
Relationships with my family haven’t been great for a good few years. I always got upset when they didn’t make an effort but I’ve come to realise that some people don’t have the ability to change. I have learnt to accept them as they are. I see things differently now I always saw them as selfish but maybe he’s not actually the case. Yes it can be annoying that we don’t get help from them with my 2 boys. But at the same time they don’t know how to handle my eldest and they can’t pick up and carry my youngest either. So physically they can’t look after my boys.
I can laugh and joke about not being the favourite and it’s doesn’t bother me anymore. They stuck up for me when things kicked off with another member of the family. That meant a lot to me. They finally see the person for who she is.
Elsewhere my mood is stabilised, anxiety virtually non existent. Well except for today. It’s my sons annual check up tomorrow and I feel nervous as hell. It’s the first one in a year. First echo and ecg in a year too. I think everything is ok but I can’t only see the outside I don’t know what’s going on with his heart and it scares me. Once tomorrow is over if it all goes well I can relax again. I don’t like relying on people to look after my eldest because I never know how he’s going to behave what’s going to upset him and I’ll not be there to calm him down if it all kicks off. Everything is flaring up anxiety and I feel sick.
This Saturday is my beautiful youngest boys 2nd Birthday. Almost 2 years since my world crashed down around me. I hope things will be different. I don’t want to be upset from re living the past. I need to look to the future and stop punishing myself and blaming myself for his diagnosis.
I am so incredibly blessed to have 2 beautiful children and I dint very often have a moan about them let alone on social media. Tonight I had a bit of a moan about how hard it is having a child 5 weeks away from turning 2 and him not being able to walk or talk.
He’s got a development delay he’s non verbal and non weight baring. I love my kids with all I have but I’m struggling with his physical demands I hurt my wrist about 6 weeks ago and it’s becoming more painful. Having to fill out 2 lots of DLA forms for both my boys it’s mentally draining.
Having the uncertainty of my eldest boys diagnosis for autism hanging over me still. I just want to be told officially it’s not a difficult request. I want to know 100% that he’s autistic so I know there’s reason for the way he acts. The way he behaves is because he’s autistic rather then is he or isn’t he?!
I feel like I’m trying my best but it’s not good enough. I’m taking my meds and I feel different on them more confident and less anxious but tonight I feel so bad for saying what I have that I’m in tears. I don’t want anyone thinking bad of me for saying it. People don’t know how hard it with both boys. I don’t have family to support me or understand me and how hard it is. I feel alone in this.
I’ve been on meds now for getting on 6 weeks. I’ve been much less anxious then I was before, I have my emotional moments but not the massive up and downs I was having before.
Is this the medication working? Is this me feeling good? I don’t know. I want it to be down to me but I feel it’s more down to the meds. Now I feel ok it makes me wants to come off them so I can get my life back. But at the same time I don’t want to undo how settled I’ve felt.in scared that after 6 months I won’t be able to cope without them. I started counselling on Wednesday last week I was anxious before going more then I’ve been in weeks. After talking things through about the diagnosis of TOF with ny little one I felt very emotional and raw. The only difference was by Thursday i felt ok again. My confidence is going up and I feel better for it.
I made a new friend Thursday, B and her little girl. The little girl is 6 months old and B is a single mum, she recently had to leave her hometown with barely anything. I felt for this girl I felt the need to help her. She doesn’t know many people so me and two other friends took her out for lunch. I paid for her to have a meal a drink and a pudding. I tried to help by settling her little girl to sleep so she could relax. All I could think of was if this was me I’d be so grateful if someone did this for me.
When I no longer need support and I’m stable without meds I’d really like to become a volunteer for HS. They have helped me so much and I’ll be forever grateful. So repay them for all they have done I want to give a other family the help I was given. Use my experience and strength I’ve regained to good use.
So the other day was my blog anniversary so I’m going to link in my first days blog posts. This is how my blog first started as a way of coping and sharing my story.
These were all posted on my first ever day of blogging. I re read them and still feel like I did a year ago reading them. This counselling is hopefully going to help me to move on from the emotion of it all.
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