New Beginnings (New Job, New Schools, New Decisions)

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New New New. I’ma start acting brand new. It’s the middle of July and I feel brand new. It’s been a good couple of weeks, amazing in fact. I know it’s been ages since I’ve written, but there’s a few things to update on.

I’ll start with Zariah. She’s amazing. Suddenly, she’s talking for England. She’s always been bubbly, but recently, she’s come out of her shell so much, and it’s nice to see her becoming more vocal. We’re officially leaving the nursery too. Since we got the news that we’d have to start looking for new childcare provisions, things just felt strained at the nursery. We had a meeting about trying to get her to start a special school early, but in the meantime, I don’t want my daughter to stay somewhere where we just no longer feel welcome. It’s just not the same anymore. That is quite sad to say as she has been there since she was 4 months old, but the vibe isn’t the same anymore. At the meeting last week, it just seemed like the nursery are keeping her there out of obligation, not because of a genuine desire to have her around. Buttttt, this is about our new chapter. So today, I officially gave the nursery notice that Zariah was leaving. She will stay at the childminder that will have her when she starts the special school, as I want her to familiarise herself with the new setting before she starts school. We haven’t got a place there yet, but we’ve officially started the consultation process, so in a few months she will have a new school! For now though, we’ll settle for a new childminder part time, and more time with mummy :).

I finally have a new job! That works around my precious girl! That sounds so basic, but having a special needs child, with a nursery that’s no longer accommodating has been difficult to say the least. I’ve had really good jobs previously, and I would have loved to stay at my most recent role, but having a child with fluctuating health needs and studying at university whilst working a job on the other side of London really took it’s toll. I left that job and have just been doing odd bob jobs so far. I’m excited to start a role in a team that literally changes childrens’ lives everyday. I’m quite excited cos it’s in a hospital that Zariah is a patient in, and the department I’d be working in means I would meet parents of children with similar conditions to Zariah. It just excites me!!!

Speaking of similar conditions, let me jump on to the next topic real quick! I had an amazing weekend away with my boyfriend. This time last week we were on a train to Manchester with no cares in the world. It’s nice to have someone that I can completely be myself around, it’s something I’ve never had before. I’ve never had someone who wants to have little weekend getaways and do loads of stuff with me. It’s a lovely feeling to feel loved. But anywaayssssss, whilst I was in Manchester, I met someone with Cerebral Palsy! We just came out of mini golfing, (where I had won basically everything lol) and whilst we were waiting for an uber, I saw a boy and his dad waiting for a cab as well. I’ve seen other people with CP before, like I remember one time in a hospital appointment in London, I saw a dad and his son who was severely disabled, but the dad didn’t look approachable, and I didn’t want the man to think I was insensitive or just nosey. I saw the boy in his powered wheelchair and just ran over (a bit creepy I’ll admit), but I’ve never had the confidence to approach others, and to be honest, it just feels like everyone with CP is hiding, because I literally never see anyone. When I saw the boy (I didn’t get his name in all my excitement), I started asking all kind of questions about the wheelchair, when he got it, how he gets around, what he had before the powered one, and whatever else came to mind. It was such a short conversation, I explained that my daughter had CP, and the dad was so friendly, it was just really nice. It was an amazing way to end a good weekend. I know it sounds pretty normal, but when I tell you sometimes it’s depressing not knowing anyone with CP or having any parents to relate to. Like even as I’m writing this I’m grinning like a Chesire cat, which might sound creepy, but recently, I’ve had more confidence to approach other people with CP and just start a conversation. I saw another lady like 3 days later in a powered wheelchair whilst dropping my daughter to nursery and did it all over again. When I started this blog, I had never met anyone with CP or with children with CP and now they’re popping out everywhere. I love it!

On another note, I’ve also made new decisions for myself and my family. I have previously stated that I parent Zariah alone, but have tried on multiple occasions to try and keep my daughters father involved in her life. Even though I have always done everything without his support, I was so conscious of being called “a bitter baby mum”, or “spiteful” or one of those mothers that use their kids as pawns when the dad is actively trying, but no. No more of that matey. I don’t think that sounds exactly like good news, but personally, I’m quite happy. I mean in an ideal world, of course I would love Zariah to have her father involved and for her to have an active, amazing, responsible dad, but you cannot force anybody to do the right thing. My constant attempts to keep her dad involved just affected me negatively. I raise Zariah on my own, without his support, without his contributions, without his presence, and he would sing sweet songs of how much he wants to do for her and how he wants to be involved but never deliver. He would flake on appointments, be unreliable, be rude, and just live his life as if he doesn’t have any responsibilities… Urgh. I do an amazing job of raising my daughter, I don’t need the abuse, I don’t need the name calling, I don’t need the insults, I don’t need the digs. I literally don’t need it. He missed Zariah’s first surgery, all the important appointments, would decide not to turn up to things because he’s annoyed with me, and the list just goes on. Last week he told me I’m not okay in the head and “I need help”. This week he flaked on Zariah’s appointment, despite him having the equipment we needed to proceed with the appointment. Enough is enough. I’ve always listened to everyone’s advice, to keep him involved and keep trying, but if it’s getting to the point where he’s negatively affecting my mental health, my happiness, my daughters routine, stability, and home environment, it’s actually enough. Today was enough. So with that, I made the decision to continue alone. I have support from my family, from my amazing partner, from my friends, and from complete strangers who send messages of well wishes. I don’t see this as bad news. This coming week symbolises a new start for me and I am more than excited to tackle life head first. Life is just really looking up.

We’re only halfway through the year, and my outlook on life has changed so drastically. Things are really looking up, I’m all about self love, self progression and just having peace within yourself. I think my new outlook on life has positively affected my daughter too. She’s happier, she’s more confident, she’s becoming more independent (I can leave the room without her now lol), and she’s becoming wayyy more vocal. Everything is amazing right now and I thank God and couldn’t ask for anything more. It sometimes gets depressing, and with all the trials in the last few months, it’s easy to feel like you’ve been abandoned, but God never forgets you. He always had a plan.

Anyways, thank you all for reading, and as always, message if you EVER need a friend, whether you have CP or a CP baby or not. Much Love xxx

Botox for Babies?

So, we’ve had a decent week. We were in the Hackney Gazette (our local newspaper) and the story wasn’t bad or twisted, which I was pleasantly surprised to see. We also had the visit to the special school on Monday which went amazingly. We’re going to have a meeting on Friday to review Zariah’s Educational Health Care Plan, and will put the wheels in motion to arrange a place for February 2020, for after my daughter turns 3, so yeah, overall quite productive.

I previously said I wanted to do a blog on Zariah getting Botox, and we had an appointment on Wednesday this week, with a view to get a date for the procedure, but unfortunately there was a spanner in the works and the procedure has been put on the back burner for a while. I’ll still explain why it was offered and what it would have done for Zariah, but I guess it’s just not happening for the moment.

So Zariah’s cerebral palsy means that it’s a lot harder for her to control her muscles and do simple things like use her hands to pick up toys, and self feed. Now that she’s older she has learnt to do a lot of things like bring foods (and practically everything else) to her mouth, but she’s still restricted because she can’t properly open her thumbs. Because of that, everything has to be placed in her hands in a specific position for her to be able to play with things, she can’t pick anything up from a table for herself.

Her occupational therapist suggested Botox for her hands, to help them open, and when she said it, my head was just spinning. Come again? I thought of Botox as a cosmetic procedure used to stop self conscious people from getting wrinkles, but actually, it has medical benefits for a range of people, including my two year old daughter. The occupational therapist explained it well too, so it put my mind at ease. Basically, they would inject Botox into both of Zariah’s hands. Because she is so young, and the hands are apparently a very painful place to inject, she would need to be put to sleep as if it’s an actual operation, and they would inject the filler into her. The Botox would paralyse the muscle there, meaning that her thumbs would be stuck open, just as Botox paralyses the muscle that makes you frown. Botox of that amount and size would take 6 weeks to wear off, and during those weeks, Zariah would have intense occupational therapy, regularly, to teach her how to use her hands and control the muscles in her thumbs. That way, when the Botox wears off, Zariah would be able to use her hands to do more.

We got the initial referral about a year ago, and had an assessment at the Royal London Hospital in December. They said that they believe Zariah would be a good candidate for the procedure, and I thought it would be good for her as she would feel more accomplished being able to do things for herself. Sometimes you can see that she gets frustrated that she isn’t able to do things, and it’s hard as a mother to see your child constantly trying and still not getting there. But bless my daughter though, because she is so resilient and keeps on trying.

Anyways, the bump. So every 6 months, Zariah has to have an X-Ray of her hips because children with CP are at risk of things going wrong with them. I’ll explain. When babies are born, their bones are obviously still going to grow, and as children become more mobile, their hips form properly, and start to curve, acting like a ball and socket joint (the hip bones curve around the legs). 6 months ago, they said Zariah’s hips are fine, however this time, they said her hips are deteriorating, and not forming properly. If they don’t grow correctly, it can be really painful. When they start to see things go wrong, there’s a number of things they can do, like offering Botox in the legs (not sure what this does), offering surgery to lengthen the muscles in the leg, and if it’s really bad, offering a hip replacement. Because they saw something going wrong with her hips, they’ve put a pause on her Botox. It wouldn’t be wise or safe to put her to sleep to do the Botox, and then have to put her to sleep again for surgery on her legs, so they’ve said no for now so they can monitor how badly her hips deteriorate, if at all.

The doctor mentioned that they will wait another 6 months to see how it progresses, and if it still deteriorating, they will put her to sleep and do two procedures in one (most likely the muscle lengthening surgery and Botox on her hands). So it just depends on how she gets on from now.

So we just play the waiting game…

It’s quite a lot of surgery to put on a 2 year old girl, and I get they’re there to help her, but wow, it’s a lot to process.

Anyways, this was just a quick one to keep everyone updated, we’ll let you know how everything plays out x

P.S. If any parents have experience with Botox, or hip related procedures, please message me, I’m eager to find out other people’s experiences, and how they helped your child. Thanks for reading too! x

Wake up to Domestic Abuse – My Experience in a Toxic Relationship.

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I wasn’t going to write anything on this topic and this is not about Zariah, but again, it’s just one of those things that goes on so frequently in our communities, but just isn’t spoken about.

Love is not anger. Love is not pain. Love is NOT having a lack of self control, it is not physical fights, and it is certainly not being rude, volatile and intolerant because he or she “makes you like that”.

I actually wonder to myself, does anyone actually know what domestic violence/abuse is? You think of violence and just imagine a man beating up his girlfriend, but it’s not just that. It’s sooo much more. I was going to say that this is one for the ladies, but you know what, men need to take a read too (before anyone attacks me, I am well aware that women can also be perpetrators of violence, so this is for EVERYONE).

I covered the tiniest amount of my relationship with my daughter’s dad in one of the backstories (see previous blogs), but mostly just covered the pregnancy leading up to the birth. I never wanted to actually cover the whole relationship, but I will go into the red flags that should have been acknowledged from the get go. As women, we tend to completely put ourselves on the back burner to care for others, but fail to acknowledge when the people we are caring for are not caring for you.

I met my ex partner when I was 17/18. I wasn’t exactly looking for a relationship but when he started speaking to me, I was quick to find out what kind of person he was from the get go (well try). He was 19 and told me he was working, has future goals of becoming a physiotherapist, and was due to start university in September (it was the middle of summer at the time). For me, I thought he was ticking boxes, he seemed like a quiet, nice, humble guy, but things changed so quickly.

He forced himself on me the first time he ever came to my house. I was NOT raped, we did not have sex, but he stormed out after I wouldn’t give in to his many attempts (this should have been red flag number 1, but I gave him chances after that). He told me he stormed out because “my friend was annoying”. What convenient timing…

You know when you’re young, you fall in “love” quickly, everything could be a complete mess but you’re just caught up and completely oblivious lol. He was a party guy, would go out and get drunk with his friends pretty much every weekend which caused him to lose his job (he would miss shifts because he was hung over). Suddenly, me, the looked after kid living in a children’s home, was paying for his upkeep. It started off as him asking me to pay for his driving lesson as a one off, promising to pay me back of course. Then he asked again, and again, and again. I didn’t even have a driving license, and I’m paying for somebody else to get theirs? Excuse me?

Then he asked for me to pay his phone bill one month, and then the next month, and the month after that. This is someone who had the support of both of his parents at home. By the way, I just want to outline that this is not abuse. There is NO problem in helping someone financially, but there is a fine line between being a helping hand and being an idiot. He got so comfortable asking, and didn’t even care to ask what my financial situation was. I was still a kid.

Summer came and went, and suddenly, he wasn’t going to university anymore. Don’t ask why, but he told me that was his decision. I went from dating someone who had a clear path of where he was going, and was self sufficient, to basically having a son. I paid for everything. I was still in college, and working ridiculous hours, but to be honest, things weren’t that bad. I still spent every free minute with him. We spoke about everything, our morals, our plans, our hopes for the future, our childhoods. You name it, we talked about it. I helped him fix his CV, would apply for jobs for him, take online tests for him, get him interviews. I was literally his personal recruitment agent. I searched for jobs all day long for him, would send him endless links, where he would just need to send his CV (the CV I created) to apply for jobs. Like I said, there is absolutely nothing wrong with caring for your other half, nothing wrong with carrying them if they don’t have things together at the time, nothing wrong with being there. Nothing at all, but you can’t spend years of your life giving and caring and doing whilst not even getting 2% of that back in return. It slowly drained my spirit.

Despite that, in the beginning, things were generally good, although we bickered quite a bit. My issue was every time we would argue, I would want to break up, and his issue was every time we argued, he would say stuff that was way below the belt. He would call me names, send paragraphs of insults, shout abuse over the phone and then cut off. He would come back very quickly and apologise, but that in itself should have been another red flag. Someone who says they love you shouldn’t feel so comfortable calling you every name under the sun so quickly. This is abuse. It was never warranted. It is never warranted.

I was a fairly sociable girl before I got into that relationship. I had a good circle of friends. When he would be spiteful and spew abuse, I would go and speak to my friends about the issues in our relationship. I needed to get an outside opinion. Sometimes I just needed to vent. That in itself would cause even more problems. He didn’t like me talking to my friends, “putting our business out there”. He didn’t like me speaking to male friends, and was sure that every single guy had ulterior motives. He would call me naive and dumb for talking to a male, and would say that all my female friends are “jealous of our relationship” and are “haters”. He called all my friends fake. He had a problem with me speaking to anyone, and wanted me to cut that off. So I did, and when serious things happened like what went on next, I was so isolated and had no one to talk to. This is abuse. No partner should ever control your friendships, relationships, or anything else. You should not be forced or manipulated into making decisions. You should never be made to choose. It can be come very isolating, and having no support system can make it even harder to come out of those situations.

Then the biggest hurdle in our relationship came. We had been together maybe 5/6 months, and I found out I was pregnant. I didn’t know how he would react, and it’s such a major thing to deal with at 18, or any age really, but I reluctantly told him, thinking we would make a decision together. We had spoken about what if’s maybe 3/4 months before, and looking back I know I was stupid as hell to ever think he genuinely meant the stuff he said, but he gave all the text book answers that a gentleman would give (I’d be there, I don’t believe in abortion, we’ll figure it out me and you till the end bla bla bla). When I told him though, that “gentleman” was missing. We would talk about it, and he would do all the standard “blame the female” techniques (why didn’t you take the pill, you should have sorted it yourself etc etc), and would tell me I need to get an abortion. There was one phone call in particular where he shouted down the phone calling me all sorts and said that I’m trying to “trap him”. Excuse me? Trap you for what? Men with this mentality that aren’t famous rappers, or athletes or CEO’s are just a mess. For him to spurt that out of his mouth was low, considering he didn’t even have a damn thing to his name, and I was still paying all his bills. He made me feel so small, and said whatever he needed to say to make me decide on an abortion, and that’s what I did. He pressured me to make a decision.

Anyways moving on. That decision really affected me. I was going through a lot and didn’t have his support. Mentally I was drained, and still felt so much shame regarding what I had done. I was drowning in depression, and he didn’t give a damn. I finally helped him get a job, and with that he basically f*cked off. He went back to partying and left me on my own to deal with it. He didn’t break up with me, but we didn’t see each other for around two months. He was living his life, but would still drag me along with the same “I love you, I miss you” lines. In February/March times, I called it off (to be fair it was “off” for months now, maybe I just needed the closure).

I was sad for a while but I moved on. Got a proper flat, got myself a dream job, I was happy where I was and barely spoke to my ex. In the summer, I started talking to someone new. We went out, did stuff together, would speak on the phone for hours on end. I was happier. It was nice to have someone messaging me for once, checking on me, caring for me. Of course, the minute my ex partner got a sniff of me moving forward, he came back. He came clean saying he had been sleeping with girls whilst still dragging me along, and did the most to try and get me back. He was consistent, attentive, plus all the qualities I “fell in love with” before. Of course, he only did that because there was another guy in the picture. He was the kind of person that doesn’t want to keep you, but could never let anyone else have you. Unfortunately for me, I was so in love that I couldn’t see it. Suddenly, he wanted to see me everyday, message all the time, speak on the phone, would cook for me, clean my flat and make all the effort in the world, but again, of course it didn’t last.

Within a few months, he asked for a key. He made a “joke” on the phone, about how fun it would be to live together. Of course he probably just said this to get away from his parents who he resented, but me being stuck on stupid and in “love”, I saw this as a good thing. He wanted to move forward with me. I thought it symbolised him being serious about me, and failed to realise he hated being at home. We spoke about him moving in, and I made it clear that he wouldn’t be living here for free. I expected him to pay half of everything, and made sure he was aware of that before even thinking of taking my spare key, and of course, he promised the world. It never came.

Things went swiftly downhill from there.

He moved in. He didn’t pay a penny, not even in the first month. Did he move out? No. Did I force him? No. I did the same stuff that didn’t get me anywhere before, because I genuinely cared about this man. I updated his CV, and started looking for jobs. I didn’t chase him for his half, baring in mind he still owed me hundreds from early on in the relationship, I just assumed he would pay me back when he had it. But months grew into years real quick.

I was working in a gambling shop, I think I mentioned this in the first back story blog. Because I didn’t chase him for the money that he owed me, and for his half of the bills, he became complacent. He got comfortable. My bills more than tripled, and he still wasn’t contributing anything. He wanted the sports channels, he wanted more games for MY PS4. He wanted more snacks in the house. He just wanted more, all the time there was something more. I rarely even got a thank you. I tried to encourage him to apply for jobs. He had everything set for him, the laptop, the CV, the websites, I sent him stuff for him to look at all the time. I would leave the house in the morning and if he wasn’t sleeping on the sofa, he’d basically be inside the TV, playing FIFA or NBA2K something. If it wasn’t that, it was another game he had asked me to buy him. I got home from a 13/14 hour shift, and he was doing the same thing. It. Got. Draining. The relationship was suffering. I felt like his mum. He didn’t ever ask how I was, or if I’m coping. I had debts piling up and he was so comfy where he was, he didn’t even care. There was ALWAYS something more. I was tired. Working 70 hour weeks meant we never had time for a relationship. I think I started to resent him. Our relationship became more of a room mate situation, and he was the room mate that didn’t pay for a damn thing. Even calling it a relationship in the first place is stretching it.

I got a new contract, and started leaving my old phone at home. He would go through my phones behind my back, trying to look for something to argue over. He had already been disloyal before, stringing me along initially whilst sleeping with other women, so maybe that made him insecure. He would call me whilst I was at work to argue, to shout insults and call me names. He would always apologise by the end of the day, when it was time for me to come home, but your sorry does not take away the tears that I cried and had to hide at work. He would entertain other women and make me look and feel stupid, but if I was to bring it up, he would get angry at me, and find a way to blame me for the unspeakable words that came out of his mouth. This is abuse. His words, his actions, are never your fault.

Things got worse. Our arguments got more heated and escalated into violence. When I tried to ask him to leave he would throw fits, smash things, punch holes into doors, do everything but leave. He would go through anger, aggression, then depression and sadness and would end up crying in one corner of my bedroom. Sometimes it felt like he manipulated my struggles with my mental health to make sure I didn’t leave him. He would tell me he’s worried about me, I don’t seem okay when I was absolutely fine, to make me question myself, or if I mentioned breaking up or him moving out, he would tell me he has no purpose without me, and would threaten suicide. I was never going to take the risk and find out whether he was serious, and I can’t kick someone when they’re down, but in me choosing to stay with him, I was choosing his well being over my mine, and it was never appreciated. This is abuse. Threatening suicide when I wanted to leave? It was manipulative, and again put me in a position where I had to choose someone else over myself and my happiness.

When I was pregnant it was 10 times worse. He found more ammunition. I distanced myself from him because he did not do anything or bring anything to the table but arguments. He was not a pillar of emotional support, financial support or any other kind. By then, I started to realise that I was always caring for him, looking out for him, checking for him, providing for him, and the time where he was required to do all of that he was nowhere to be found. Me distancing myself didn’t help either. He would bombard me with messages, and his insecurities led him to always assume that I was with another guy, and some other man would be looking after “his child”. Maybe the fact that he wasn’t doing a thing for his unborn child played more on his mind and led him to overthink, but that thought caused him to send more paragraphs of abuse, calling me every name under the sun. Towards the end of the pregnancy, he threatened to call social services and mental health teams to lock me up. He would tell me stuff like he will fight for custody and I will never see my child. The word vomit that used to come out of his mouth was honestly horrendous, I wouldn’t wish it on my worst enemy. At a time where I was already going through a lot, when I didn’t want to get back into a relationship with him, he would return to being abusive. This is abuse. I was heavily pregnant, and in outbursts of anger he would threaten that I will never ever see her, and will spend the rest of my days in psychiatric wards, away from my baby. It takes a different kind of person to threaten you using your children.

& then there was more. After she was born, he would only show up to things if I was willing to get back together (which meant he showed up to nothing). In spates of anger again he would scream abuse down the phone because I didn’t want to try again. He would tell me I would never find any better than him, and call me names for preferring to have a blended family than get back with my daughters father. Less than a week after I gave birth to his child, he screamed down the phone shouting “err, who do you think will love you with that ugly pregnancy body”. He laughed, mocked my weight and my Caesarean section stomach, and cut the phone. I have never felt so small. I had never felt so insecure about my appearance and that damage lasted a long while. Abuse is not just giving your girlfriend a black eye (although he had done this once before). Psychological scars last way longer than superficial ones. This is abuse.

The timeline just goes on and on. I wanted to take my daughter to her first birthday party when she was a few months old. At this point, her father was not involved in her medical care or any other kind of care (we were aware that she was likely to be disabled), but I still did my best to try and keep him involved, for my daughters sake. I invited him to places, let him know of events in our calendar, and would let him know he was welcome to come. I asked him if he wanted to come to the birthday party weeks in advance, and he said he would let me know. He didn’t come back and let me know. I came back to him and mentioned it once more and he moved oblivious and so I left him to it. I invited my (female) cousin to come with me as I was still anxious to take Zariah out alone, and on the day I got myself and Zariah ready and was quite excited. Her dad messaged me on the day, I guess just to have general conversation. We spoke normally, and I told him that I would speak to him later as we were getting ready. With no mention of a “he, him, man, mr” or any other male reference, my ex blew up. Accusing me of trying to play happy families with a man, calling me a hoe, a slag and every other derogatory term you use on women. He constantly accused me of dating, or trying to replace him as a father, or chatting to men or whatever other insecure thing he could think of. Number 1, I was not talking to any male, and was not in a place to at the time, but number 2, it was not his business. I am a free woman, and not under the control of any man. He entertained women and I left him to it, but the slightest thought of me being anywhere with a man that’s not him would lead to an onslaught of abuse. I didn’t want to argue, so I blocked him on Whatsapp. He then iMessaged me. I blocked him on iMessage, and he Snapchatted me. I blocked him on Snapchat and he called me. I blocked his phone number and he harassed my house phone. He spewed abuse from every possible avenue. If I entertained it, it would escalate, and if I didn’t, it would escalate. This is abuse.

I feel like even this is like a 100 page read so I won’t go on, but the fact that I could go on and on and on is a sign of something horribly wrong in our communities. When I tried to mention that this is abusive, it seemed to trigger him more. I couldn’t speak up, and so many other women are in these sorts of situations, and just believe it’s normal and comes with any relationship. My ex partner still carries that same opinion. It was toxic, it broke me physically, spiritually, and mentally and is something I could never put myself through again. Please understand the true meaning of domestic abuse, it’s more than being dragged across a room and brutally beaten. It is common amongst young adults but does not have to be a part of everyone’s story. I never wanted to write a blog addressing this topic, but the messages from strangers and old school friends made me realise that this is something that isn’t uncommon. It should be!!!

I am far from figured out. I am flawed, but I know now what I didn’t then, and would never subject myself to such a situation again. If you have found yourself in toxic situations, you need to let go and let God.

As I have always said, no matter who you are or where you come from, if you are ever in need of a friend, or a chat, or a support system, please feel free to contact me via my social media. I am ALWAYS happy to talk. Love yourself xx

P.S. This is not to bash my previous partner. I have learnt a lot about myself from that situation and it shaped me to be the person I am today. I am happy, and loved and in a caring, peaceful, happy, HEALTHY relationship. One situation does not define you or your character, and this goes to men and women, perpetrators and survivors. Everyone makes mistakes, but the first step is to acknowledge the problem. To do that you must know what abuse is.

Let’s maintain healthy relationships guys, thanks for reading xxx

“Special” School Success?!

Listen, I had a great day today. Just felt like a win after a million losses. It was overdue.

I called this blog success, which it is, but I should really call it a half success. In fact it’s probably closer to a quarter success but who cares? The point is I found a school for Zariah! I mean for the past few weeks I’ve visited a load of children’s centres, a few special schools, called a million nurseries and spoken to pretty much every council in north and east London. It grew pretty frustrating pretty quick. Somehow I got sick of hearing constant no’s.

I went to view another special school today. The only thing I can say is that they were amazing. The space is massive, there’s loads of facilities, they have medical staff on site, a swimming pool, trampoline room, sensory room etc etc.. The list literally goes on. They had everything. There’s still a load of little “nigs” that need to be sorted out that’s why I called it a quarter success. It’s still a normal primary school in terms of academic calendars and stuff, so I’ll still need to find a childminder for after school hours and holidays. On the plus side, the area it’s in has loads more childminders to choose from than mine, so hopefully we can find a match. It’s not walking distance from my house, or even one bus distance, so I might not be able to drop her to and from school each morning, but I’ll make an effort to do it a few times a week at least, as I still want to be involved and meet other parents. On the other days, Zariah would use transport provided by the disability team.

I’m so excited to be honest. I mean it’s early days, and like I said, loads needs to be done before we get there, but it’s just nice that things are looking up. She can only start once she’s 3 which is in 6/7 months time, but it gives us time to plan, and I am one heck of a planner lol. Zariah loved the visit, I mean she pretty much loves everyone, but there was enough space for her to jump all over the place, so win win (by the way, my daughter can’t walk or stand independently, but if you hold her up she’ll walk/run/stamp/jump and by the looks on her face and her screeches and giggles, she’s having the time of her life). The day was just good to be honest.

I’m in positive spirits about everything at the moment. I mean, it’s ages away, and we would still need to try and arrange something with the nursery to allow her to stay until she turns 3, or maybe find the perfect childminder in the area of her (potential) new school, but I really am looking up.

Of course, when I told my daughter’s dad about the news all excited and sh*t, he found a way to turn it around into a pre-argument. God knows what about because he doesn’t show up to anything, which is why I never invite him anywhere anymore. It rained on my parade for a few minutes, but I was swiftly cheered up by my partner, and to be honest, a little blip can never take away from how good today was. I had been searching for weeks and getting every door shut in my face, so the relief I feel now is just amazing. I can’t wait to get the wheels in motion, and for once I’m really looking forward to our next steps regarding Zariah’s education.

I was going to upload a cute picture of Zariah today, because she looked gorgeous when I dressed her this morning. The weather was nice, Zariah was in good spirits, but like a rookie, I forgot to take pictures at the start of the day and just said I would take them when we got home. When I took Zariah out of the car though, she did her business all over the place. God knows what I fed her, (she’s on some medication that helps her release her bowels), but yoooo. She decorated the whole outfit, everywhere I touched there was doo doo. You ever felt like this is a whole mess, you just gotta throw the whole baby away? That was me this afternoon. It was horrendous, and babies don’t stay still long enough for you to clean them, and Zariah wiped her sh*t on my arms, my fingers, my jumper, her jumper, her vest, dress and all down her legs and back. She’s all giggling and I’m having an internal panic attack.

Anyways, long story short, no cute pictures today. Blame Zariah.

If anyone is from Hackney, East London, and knows any childminders, please give me a shout! We’re a quarter of the way through the school journey!

Thank you everyone for the messages of support, the recommendations for schools, activities, childcare options and everything else. Thank you for sharing, reading, commenting, and messaging. It means more than you can ever imagine. Thank you to my boyfriend and my family who are ALWAYS an ear when I need one. Thank you xxx

They Want My 2 Year Old Driving a Wheelchair?

Cool, so I haven’t written in a while. I should really be thanking the girl whose blog I just read, because she’s actually what inspired me to start writing.

Zariah and I had a hectic week. Not a particularly horrible one, actually it ended quite well but started in a bit of a mess. Nothing particularly extravagant happened, but I thought I should share in the name of raising awareness and transparency.

So like most children with CP, Zariah had appointments almost everyday this week. In the name of this “transparency” thing though, that’s a lie. I really shouldn’t say “like most children with CP” because other than Zariah I know literally zero children with CP, so maybe it’s different for others, so I’ll just start again. On Monday, we had a big(ish) meeting with the majority of Zariah’s medical professionals (the physiotherapist, paediatrician, speech and language therapist and the occupational therapist). It started off as a general meeting just to update all the professionals on where we are with Zariah’s care, because even though they all work out of the same building, their communication can sometimes be trash (no shade to Hackney Ark if you’re reading this lol). Anyways, the appointment. It started off well, the paediatrician is this lovely Caribbean lady, she’s thorough and really knows what she’s talking about. We’ve had her since Zariah was born, which is nice because other than her and the occupational therapist, everyone else has changed like a hundred times. I can barely remember anyone’s names. Moving on though, I filled the paediatrician in on the latest of Zariah’s seizures, updates with medication, how Zariah is coping generally etc. and then we went into Zariah’s progress with each of the other therapists. The physiotherapist mentioned that Zariah recently had the GMFM assessment and the outcome was that Zariah is borderline 4/5 in their grading terms, meaning that it’s unlikely she will walk. It just felt like she kept trying to drum it in. She told me that she had spoken with Zariah’s other medical professionals and they “had all agreed” on it. All I heard is “we all think your child is going to be a vegetable” over and over again. Maybe it’s because I’m young or whatever or she thinks I’m too hopeful, but that appointment was only a few weeks ago love, trust me, I remember. You don’t have to keep beating the stick over my head. It’s just a touchy subject, I still get teary about it, how does one even get over that? It’s heartbreaking news.

I don’t want to keep dwelling on that, and maybe I should start to try and move on from that appointment, but even now writing about it and the appointment on Monday is just making me teary. I told the professionals about our struggle to find a nursery or childminder or school for Zariah. Being the centre for disability in our borough, I assumed that they would be able to give me some advice or have some experience of schools that accept and cater well for children with CP. They gave me the name of a nursery that is accessible and said that they’re not sure of the hours but they do offer around the year care. That boosted my mood a little bit after the whole not walking thing, but it was short lived. The physiotherapist said that once I find a nursery or school that is accessible for Zariah, they will start looking at giving her a powered wheelchair for her to get around, that nursery is the perfect place for her to learn how to use it. I almost choked. Excuse me?

& would you look at that, my tears are back for goodness sake.

In my head I was just thinking wtf? My child is 2. 2?! They want my TODDLER to drive a powered vehicle? I immediately had a picture of the powered wheelchairs you see people using in the street, with like a gear stick that you move about to power it? How are you gonna teach my toddler, who doesn’t understand much outside of the basics, to manage a powered vehicle? On top of that, it kind of just signified them completely giving up on her walking or being mobile by herself. Zariah can’t even sit up on her own, like what the actual hell?! The appointment for me, just felt like it was going from bad to worse. It was hard for me to take it as good news, but I kept it together. The physio and OT could see the shock on my face, and so they said they would email me details about the wheelchair for me to read after the appointment, and we moved on..

So this is the wheelchair image they sent me. Zariah has a communication button that looks just like the buttons that power the wheelchair. It made me feel less freaked out and I stared at this for ages. Still quite depressing. I know it may make life easier for Zariah, but it’s still a lot to swallow, and just signifies them completely giving up on her getting around alone.

Anyways, my thoughts on the wheelchair aside, we spoke about loads of other medical things, like aqua therapy for Zariah, her upcoming botox (I’m going to write a blog about this soon, it’s another thing that I almost choked and died about when they mentioned it lol), and her hip X-Rays. Overall she’s doing fairly well. That appointment wasn’t a horrible one, and I kept it together through the shocks and (what felt like) blows, but I felt deflated, and was one poke away from losing my sh*t.

I took what the therapists said about one particular nursery though, and contacted them in a bid to find out more about what they offer in terms of sessions and vacancies. I called them whilst I was in the car, after dropping my daughter off to her dads. When I spoke to them they said they don’t offer round the year care and they are a nursery “school” so it’s still only 9am-3pm… I know it’s so minor, but have you ever been completely on edge, and the slightest even half irritation just drives you to breaking point? I cut the phone mid sentence and broke down crying in my car. It might sound sooo trivial, it’s really not enough to ruin someone’s day or anything like that, but literally, that was it for me. I cried and cried in my car. Sometimes it feels like everywhere you go, they’re gonna shut the door in your face. It gets depressing. All through last week I spent time looking for childminders, schools, and nurseries, and nothing. I just want to work! It sounds so crazy but sometimes it can be hard, and when I say sometimes I mean a lot of the time. A LOT of the time. I just want Zariah to have the same opportunities as everyone else to be honest. I mean I continued driving after my cry, picked myself up and got back to it, but yeah, it can be hard.

ANYWAYSSS, my week wasn’t all bad, and hopefully I’ll have some news to share with everyone soon, but that was my Monday guys. Hope everyone had a better week lol, and again, if anyone knows anyone who may know anyone, please share! I’ll keep you guys updated and thank you so much for reading x

Let’s Talk About STIGMA…

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I’ve been wanting to write about this one for a minute now, so I’m gonna just dive straight in.

I’ve literally only been blogging for two weeks, and there has been quite a big outburst of support which I am more than grateful for, but I haven’t mentioned any negative, which gives the impression that it doesn’t exist. Let’s talk about it…

I’ve received messages from old school friends, from complete strangers, from charities and much more, and the love has been amazing. I keep saying that I just started this to vent, and in all honesty, I didn’t think about anyone else possibly going through the same situation, but in my community, and in the black community especially, some of the stuff I’ve spoken about seems to affect other people, but we just don’t speak out. Why?

My family have been supportive for the majority. I’m someone who’s not a very great talker. Don’t get me wrong, in real life I’m loud as hell, I play a lot, and can be quite childish, but to talk about serious topics, like how I am coping, my mental health, Zariah’s disability and other serious stuff, I just can’t get it together. I brush everything off as if it’s all great, and I sometimes come off as emotionless. It’s hard for me to talk to my friends. Sometimes I avoid serious conversations with my boyfriend too, it’s just a habit of mine to turn everything into a joke. My writing is probably the most honest open platform I have. But when I shared it with my family, my granny said I should “keep this kind of stuff within the family”. My ex partner said “I shouldn’t put his business out there for everyone to see”. I mean I’m not mad, but it’s this kind of broken mentality that keeps people drowning in depression.

I love how much things have changed in the past few years regarding mental illnesses and opening up, but we still haven’t reached all communities. When I was 17, I was diagnosed with a personality disorder and suffered with episodes of psychosis, as well as frequent self harming. People around me were freaked out by my arms. People thought I was sick or crazy. I mean I was always someone who was outspoken and was confident enough to speak up against bullies, but this isn’t the case for everyone. Even in me saying that I can’t say it’s 1000% true. I was confident only to tell strangers. I didn’t care about the opinions of people who didn’t know me, but I cared about the opinions of people who did. I didn’t tell my family I had a mental illness until I was 20, 3 years after the diagnosis, and the only reason I ended up telling them was because it was a condition imposed by social services for me to come home with my daughter. Can you imagine? I kept a massive part of my life a secret from the people who have known me the longest because around them I felt embarrassed. I felt that they would look at me different, or think I “wasn’t quite right”. I did stints in secure psychiatric wards as a child and as an adult, and didn’t tell one member of my family. It’s quite poor really, but I understood the stigma.

When I had to tell my family, I had two of my aunt’s, my mum and my grandma crowded round my living room with a social worker and a bunch of flyers, and this lady was explaining my diagnosis. I just felt shame. But why should I feel ashamed? Why should I be embarrassed? Why aren’t mental illnesses treated like any other illness? If I said I had diabetes, the room wouldn’t act shocked or start treading carefully around me? Why is a mental illness any different? Why shouldn’t I speak up? We’re taught that we shouldn’t need psychiatrists, social services should never step foot in your house, people outside shouldn’t know your business, but everyone needs help at some point. Young men make up the highest portion of people who commit suicide. Because we don’t talk. We teach our children that “boys shouldn’t cry”, we emphasise the importance of the “man of the house” in our cultures, and expect men to always be the providers. This kind of mentality makes it seem like men should never need help. Our society makes men feel shameful when they can’t provide, when they need to cry, when they ask for help. “It’s not manly”. That’s not the message we should be sending, and the reason why I wasn’t too shocked to hear my grandma’s opinion is because she has been raised to believe that this is something shameful that you don’t bring out the house. It’s enough. I have a voice that I am not afraid to use, and it’s time we start changing minds, changing stereotypes, and eradicating stigma.

I saw this at work the other day. All of the ideas on here are really simple, but they really do make a difference.

And it’s not just mental health. It’s our relationships too. It’s sex, it’s choices with our bodies, it’s finances, it’s disability, it’s literally everything!

Nobody is perfect. Not myself, nor anyone I know. When I had my daughter, I isolated myself and didn’t tell anyone outside my family and two friends about her diagnosis. I wasn’t ashamed of my daughter, I thought she was the cutest thing ever, but I was ashamed of the stigma. That people would look at me different, look at her different. I’m not ashamed to say I had no idea what cerebral palsy was before I had my daughter. Quite bad really, but what I’ve noticed is that unless someone in your family or close friends has a disability, you’re not really aware of what is outside. I wasn’t educated on stuff like that, I only guessed people were disabled if they were in a wheelchair or “looked different”. If I’m honest, I was quite ignorant before Zariah, and having her really opened my eyes to how much I didn’t know, and how judgemental I may have been towards others as a child.

With my relationship too, having an abortion at 18. I was ASHAMED. I still look back and feel ashamed. Ashamed for making that decision, ashamed for finding myself in that position, ashamed for going against my values, my religion, my culture. Ashamed for allowing somebody else to pressure me into making decisions. I couldn’t tell my mum at the time. That stuff is unheard of! Me? A black CHRISTIAN NIGERIAN girl? lol no. I couldn’t tell anyone in my family like that. I ended up relying on my two friends. It’s so crazy that this goes on quite commonly, but nobody wants to start the conversation. People are quick to judge you, quick to disown you and condemn your decisions, and things like that are hard enough so why would I come out and tell someone just to be made to feel worse? I didn’t skip down to the woman’s clinic with a grin on my face, most people don’t. It was a hard decision for me and a large number of people I know. The stigma is soo bad that a lot of girls I knew lied, and say they had a miscarriage (there’s less of a stigma attached to that, people seem to sympathise with you), and some people would keep absolutely everything private. Imagine being at a turning point in your life, where you need more support than you have probably ever needed before, but feeling like you have no one, because everyone is going to look at you different, or make you feel worse, or speak ill of you. It’s not the response that people need.

We as a community need to do better. We need to become better listeners, better friends, better support systems and better people. We have all made mistakes in our lives, and nobody has the right to pass judgement. This is all of our first times on this planet, I don’t think any of us came into earth knowing how to do everything. You may not agree with decisions for religious reasons, cultural reasons or anything else, and that’s OK. It’s never by force you must agree to something you don’t understand, but let’s lay back on the judgement. Be an open ear, you never know how far that can take you and how much just being there to listen without judging can do for someone. Let’s learn to accept people’s differences and learn to love. It doesn’t cost a thing. If you are religious, please let’s also remember that even if God condemns an act, he still loves the person.

Learn to Love. Goodnight all. x

P.S. Everything I have said in previous blogs still stands. If anyone ever wants to talk, to rant, to cry, to shout or just needs an ear, feel free to message me. Whether you have a special needs child or not, whether you are a parent or not, my ears are always open if you feel alone. Let’s talk. (IG: embtp // Facebook: Esther Marlsey-Burkson)

P.S. (Again lol) If you haven’t already, please check out my last blog about our hunt for a “special” school. Share, comment or message me if you know of anyone, or know someone who knows someone regarding childcare for my beautiful 2 year old. We’re on the lookout!

“Special” Schools?

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You know what nobody tells you? How isolating it’s going to be. How much harder you and your child are going to have it, and how little everyone will do to accommodate to you.

When the doctor sat down and told me Zariah is likely to be capable of nothing, they should have also included that you will feel lonely even when there’s a multitude of people around you. They should have said life for everyone else goes on, whilst you feel like yours is moving at a snails pace, or sometimes not moving at all. They should have said you might be depressed for the rest of your life. They should have said that.

In my first ever blog, I mentioned (briefly) that my daughters nursery was kicking her out because they “can’t cater” to her anymore. It’s a little bit more complicated than that, and I probably shouldn’t have said “kicking her out”, but long story short, they told me to try and find alternative arrangements for her, and that’s what we’ve (well I’ve) been doing, well trying to do. It’s proving quite difficult.

The nursery hasn’t actually chucked us out onto the street and said don’t come back by the way. I got a lot of outraged parents saying I should take action or complain about the nursery. It wasn’t that simple, and tbh they are lovely people, I don’t really blame them. So here’s the back story. Zariah has been at that nursery for 2 years now. She started at 4 months. It’s early I know, but honestly, staying at home for me was really depressing. It was medical appointment after appointment, and I spent ages trying to find a support group for people who have gone through similar circumstances, or for parents who have children with CP and couldn’t find a thing. There was nothing for us. It was hard to take Zariah out and about in a buggy, she couldn’t lay on her back, she would scream and cry in discomfort, and it was a lot to carry her in my hands or the sling. I think I was just way too overwhelmed. Even though she didn’t have a diagnosis yet, by 4 months we knew it was coming, and could see the differences between Zariah and other children. I keep saying a lot of “we’s”, but I think by now it’s clear that I am a single parent. It’s just me and my girly. I mean obviously Zariah has a dad, who she sees sometimes, but that’s pretty much it.

Anyways, back to the nursery. I started her there at 4 months and went back to work for 2 days a week. I just wanted to go back to normal adult life and have a minute or two away from throw up and soiled nappies. Is that bad? At this point, the diagnosis was likely, Zariah wasn’t making any progress towards milestones and she was really stiff, at that age she couldn’t bend her arms or legs. I wanted her to be around other children from early, and I wanted her to be a sociable baby, even if she was physically limited, so I looked for “normal” nurseries. I came across the nursery Zariah is at now, who said they had experience with special needs children, which ticked like 100 boxes for me. I arranged to view the nursery and meet the staff and it all went from there. They were amazing. I explained the likelihood of the cerebral palsy diagnosis, and they did their best to accommodate for Zariah. Zariah only drank milk at this point, and had problems feeding from birth (remember we had to teach her to suck, and she was tube fed for weeks before she started breastfeeding/sucking properly). I used to express in the night and bring bottles there, or sometimes come to nursery from work, and breastfeed Zariah in the staff room. The nursery really tried. There was one member of staff there who was like Zariah’s second mum. Did everything for her, and as Zariah got older, she would only go to this member of staff. Zariah’s time at the nursery has just been amazing.

We got the diagnosis, they tried to adapt so much for her there. They got her involved in activities, this one member of staff used to take time out of her personal time at home and search for activities on the internet that stimulate babies with sensory disabilities. She would improvise and made handcrafted versions of things she saw on the internet, would carry Zariah up and down, would teach other staff about Zariah’s routine. Literally, when I tell you, this woman is the kind of nursery nurse you pray for. She was part of the family. As Zariah has gotten older, the rest of the staff, and babies have just been amazing. Zariah loves it there. The kids love her. Some of the children have been at the nursery since Zariah started, she’s literally grown up with them. The whole isolation thing I was talking about earlier, didn’t exist. So when I got the news that the nursery are struggling to find suitable arrangements to accommodate for Zariah, the blow just felt 10 times worse. The one place Zariah has stability, has friends, is accepted and has a routine, can’t care for her anymore.

The nursery isn’t accessible. There’s a lot of stairs, and the playground for the children is downstairs, with all the nursery rooms upstairs. It’s an old building, it wasn’t made to be accessible. Zariah is no longer a baby and likes to play outside and be with the children that are her age, but she isn’t mobile. She can’t crawl or walk or anything else, and so staff have to carry her up and down everyday. The nursery have agreed it’s not feasible for them to keep carrying her around, especially as she is getting older and is not mobile, so now we have to go. They have tried, and are still trying to find ways around the accessibility issue, but it just comes down to money, which they don’t have enough of.

So yeah, on the 17th May, they told us they wouldn’t be able to keep her long term, and we should start looking at alternatives for childcare. I’m a working mum, but have always sorted my work around my child and childcare, so at times, especially now, it has been really strained. But moving on, I started looking for special schools. There were quite a few special schools in our borough and the neighbouring one, but when you cut that down to schools that cater for children with CP or other physical disabilities, there were only two. To be honest, I don’t actually need to look for schools that are close because Zariah would be eligible for transport to pick her up to and from whichever school I decide to take her to, but who really wants to send their child far away? I won’t be as involved in her care, or be able to adequately monitor the school or Zariah’s progess, and let’s not forget, my baby is only 2. 2 years old, and they want me to look for primary schools already. The special schools cater for children ages 2 to 19 usually, dependent on their needs but the hours are different, they don’t offer around the year care, and it’s almost impossible to find after school provisions for children with additional needs.

It’s starting to get real difficult, and as a mum you never wanna give up, and pretty much can’t anyways, but it’s like what do you do? Where do you find childcare?? I can’t be the only person with a disabled child, so what does everyone else do? I cant be the only single parent of a disabled child either? I can’t see myself sitting at home living off of disability benefits because who really is that helping? It’s not enough to live on, and it’s just a one way street to depression. How do you find childcare? Or childminders, or a school with decent hours to support a working parent? It’s lonely, some days I find myself calling 4 or 5 different councils, or childminders and it just gets disheartening. I still want a career, a successful career. I still want to accomplish things, even more so now because I have Zariah. I don’t want her to struggle, and I refuse to live here or be in this position forever. But it really is isolating, having so many doors close in your face. “We can’t cater to her anymore, we don’t offer care for special babies, we don’t have an after school service, I can’t take her on if she can’t walk” bla bla bla. This is what drives people to depression, the constant rejection from society, the lack of awareness and education on conditions that affect a large community of people.

Anyways, I’m pretty sure I’m just rambling now, but just wanted to express my frustration somewhere, cos even though people offer support and kind wishes, it’s still isolating. As days go on, it just feels more and more like it’s just gonna be me and Zariah for the rest of our days, and no one is gonna be here to help. Just need to get used to it really and figure a way around it, but sometimes it just feels like it’s all too much. I hope I’m not a bad parent for saying this, but it’s like I’m 23 years old, it’s hard to keep your head in the game and keep going, some days I legit just want to crawl away and disappear. Some days I want to run away, but I couldn’t leave my girl. We’re literally on our own, maybe when I get my degree I’ll do my research about where there’s the best support and just take my baby and up and leave. There’s not many special provisions for Zariah, the focus seems to be on autism these days, maybe that’s more common, so I gotta come up with my own devices so my daughter doesn’t fall through the cracks. It’s just a lot sometimes.

We’re in the process of visiting schools and will maybe look at other nurseries, I’m not entirely sure, I don’t want to take her to another nursery for them to say the same thing down the line. I’ll try and keep you guys updated anyways, and keep my head above water.

If anyone has any ideas, or knows any childminders or anyone with special needs experience, I could really use some help. Or just someone with ideas, because it’s becoming quite overwhelming, maybe I’m just not reaching the right people yet. Anyways, thanks again for reading, and yeah.. hit me up xxx