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.
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!
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
Hey guys, it’s been a while. I think it’s just gonna be a thing where I’m thanking everyone at the start of each blog because the support and love has just been amazing. Having Zariah, and being a young mum in general, can sometimes feel quite isolating, and before coming out with our story and experiences, I felt excluded from so many things, even though Zariah is probably too young to understand or feel it.
The outburst of love has been real though, from simple messages of love and encouragement, to invitations to places, messages from organisations, and people being much more inclusive in general. My friends have been incredible as always. Thank you for everyone who has read, commented on and shared our blogs too. Who knew people on the other side of the world could be going through the same experiences?
In the last post, I got up to Zariah’s birth and shared a picture of her whilst she was in a medically induced coma. I’m just gonna explain Zariah’s diagnosis and where we are today.
Zariah is diagnosed with spastic dystonic quadriplegic cerebral palsy. It’s abit of a mouthful to be honest, we just say CP. Anyways, all that means is that her muscles and joints can be really stiff but weak at the same time. She doesn’t have complete control of all parts of her body like most people do, and things that just come naturally to others, Zariah has to learn over more time. She can’t sit up independently, walk, talk, stand, etc. and she is only just learning to roll over. There are some things that she may never be able to do (my first blog was about her physiotherapists opinion that Zariah will never walk), but I still stay hopeful. As well as the CP, Zariah has seizures, and global developmental delay (she is behind her age mates in terms of learning). I didn’t know this would be the case when she was born, I was quite clueless to be honest, but the doctors knew that this was a likely possibility, based on how bad her condition was at birth.
Anyways back to the first day. So even though when I saw Zariah for the first time she was hooked up to a load of machines, I still was hopeful about her outcome, and just thought that lots of babies stay in hospitals for a few days when they are born. At this point, although doctors may have had their suspicions about her likely disability, we had no clue. Nothing was said to us, for whatever reason, so I was just naive as hell. In the early hours of the next morning, after meeting Zariah for the first time, I was moved to the ward where they bring mothers who have just had their baby. On the first day or two it was bearable, but it became increasingly depressing being on a ward with other mothers and families who were so happy about the birth of their child. I kept hearing newb0rn babies crying and cooing at 3 or 4 in the morning. I mean, congratulations to them and all, but my baby is upstairs, I have to keep going to visit her and she hasn’t even opened her eyes to look at me yet. Wasn’t the best environment for a new mother who hasn’t really got to “be a mother” yet.
On one of first my visits upstairs to see Zariah, the nurse by her bedside gave me a flyer to explain what they were doing to her and why. It was late in the night when they gave me the flyer, so I took it back to bed with me and read it. Zariah was placed in the coma so that they could try and cool her brain. They lower the temperature of the whole body and brain, to try and prevent the brain damage from spreading. They were one of only a few specialists hospitals to be able to do this, so I guess it was bitter sweet that she was born there. When I spoke to the nurse they said that they would be cooling Zariah for 72 hours, and providing she reacts well to the procedure, they will bring her temperature back up to normal after that. Also, the flyer had those “success stories” on them, of parents who had gone through the same treatment, that had worked well for their babies. There was a lady on there who said her baby was cooled at birth, and they stayed in hospital for 4 days. Her daughter was now running up and down and a “perfect little girl” with only a small hearing difficulty. Again, these are just memories of me being mad naive, but I thought “okay great, Zariah is gonna be in hospital for 3-5 days. After the cooling, she’ll wake up, be absolutely fine, and we can go home”. That wasn’t the case.
Zariah stayed in hospital for 6 weeks. A long, seemingly endless 6 weeks. I cant go through everyday or every milestone with you because honestly, I’ll keep you here forever. But I’ll go through each significant stage, so here goes..
Day 6: Zariah had finished the cooling and rewarming, they had stopped the treatment on her brain, and they took her in for an MRI scan to try and assess the damage. I remember being with my ex on that day excited as hell, because this was the last thing they were waiting for before they would take away the medication that was keeping her asleep. I would finally be able to see my baby open her eyes after that. Excited was such an understatement man, I just thought when she wakes up we can go home. I felt like we were hitting the finish line.
Day 7: Didn’t go as I expected to say the least. The MRI scan was done on a Thursday and I spent the day with Zariah in the hospital. The doctors told me we would get the results of the MRI scan on Friday, so I came into the hospital bright and early on Friday morning, ecstatic as hell thinking today’s the day Zariah is gonna open her eyes. I came early enough for the ward round and watched everyone else have theirs, and then the doctors came to me and asked if Zariah’s dad was going to be there. That in itself should have raised flags for me but I was so excited to get the results of the MRI, I was oblivious to the fact that it could have been bad news. You know in my first blog, I mentioned I didn’t want to be too hopeful about the results of Zariah walking, cos the let down when you’re overly hopeful is epic? This was the day I was talking about. I can’t even find words to describe how positively I thought this day would go. I contacted my ex to let him know the staff were waiting for him to get the results of the MRI scan, and so he said he was coming in. That wait just felt like forever. The doctors came in twice whilst I was waiting for my ex to check where he was and how long he would be. My ex never came to the hospital everyday and wasn’t that involved in Zariah’s care or her early days anyways, I really should have realised but tbh I didn’t. He arrived and the doctors summoned us into another room.. I remember smiling with my daughters dad walking into that room, I was so giddy, and my ex said “ahh the way they’re walking us into a private room is like it’s gonna be bad news”. We both laughed at that statement. The thought didn’t even cross my mind..
We got into the room now, and there were so many other people there. The mental health midwife that I had grown to really like, like 2 or 3 doctors, the nurses that I was most familiar with and God knows what other professionals. Even then I didn’t think it was bad news, I just thought they needed to be briefed too. They then proceeded to tell me the results. Honestly, when I tell you, the doctor explaining just let off shot after shot after shot. He told me that the images they took of Zariah were horrible. He said that she will probably be disabled, will probably have a learning disability, would probably be blind, and will never smile or laugh. She will never walk or talk or do anything. He told me in much longer terms, “you’re child is going to be a vegetable”. That’s all I heard. Please no one shoot me for saying that, but if you honestly understood how brutally the message was delivered, even till this day I still think he was the worst possible man for the job. I understand doctors are supposed to just speak medically and not emotionally but that man had no soul. He didn’t even let me breathe before he dished the next blow, and another one, and another one. I don’t even know how I made it home that day. Day 7 was the day that killed me. I couldn’t even face going back in to see Zariah. I almost gave up on that day. I remember calling my mum and just screaming on the stairs. She kept trying to calm me down but all I wanted to do was scream. My ex kept trying to hug me, but even he couldn’t do a damn thing to try and get me to act like someone who still has sanity. I was screaming on the floor on the stair case in a hospital. I’ve never been so broken. Literally never. I felt so helpless, I cant even describe the low of that day to be honest. I don’t even know how I made it home. My phone was ringing off on that evening. I understood why the mental health nurse was present. She didn’t need no briefing lol, she was there to make sure I didn’t go and throw myself off a building. That whole day is a blur. I cried and cried and cried. I don’t know how I made it to the next day but here I am, living to tell the tale.
Day 10: After my day and a bit of crying, I had to get it together. My ex partner weren’t stepping up to be there beside Zariah, and I didn’t want her to be there on her own, unconscious, with absolutely nobody around her. That’s one thing I realised from early. I can’t sleep on the job. I couldn’t afford to have days off of parenting, or days of depression where I didn’t get out of bed, because no one is gonna step up and be there for her whilst I’m not. It’s literally just me and her. So I got my ass up and went back to being there everyday. Day 10 was amazing. My baby woke up. She semi opened her eyes on day 9, but was still out of it. Day 10 was the day that I got to hold Zariah for the first time, the first time I got to feel like a mother. I took endless videos to watch when I got home, that was the first high I felt since having her, I needed it tbh cos without it I don’t know if I would have been able to keep going.
We had to teach Zariah to suck, which is a natural instinct that babies have when they’re born, but mine didn’t. I mean by the end of the 6 weeks it was much better, and she was breast feeding, which felt like a major achievement, but she came home with a tube that we would feed her directly into her stomach with. It was a lot to take in. The lead up to taking Zariah home was hectic but we got there. Because the doctors knew Zariah was likely to be disabled, we had the specialist input from early. Fast forward 2 and a bit years and here we are. She has her diagnosis and we are a little bit more familiar with her disability and what it means. It’s still a learning process, I’ll admit I never new what CP was until it was on the cards for Zariah.
Despite the doctors comments, Zariah CAN see, she CAN smile and play, she’s the most sociable little baby I have ever met. Her laugh is contageous, her energy is literally never ending (it gets exhausting sometimes lol), but she has already defied the doctors in so many ways and has so many more achievements to come. I know I’ve fast forwarded ALOTTT, but honestly theres so much to mention, I don’t think it’s something I’ll be able to cover in 1, 2 or 10 blogs.
If anyone does have any questions, I’m more than happy to answer anything and everything, and want to try and be as honest as possible about our experiences so far. It’s just the beginning of our journey, and I’m hopeful for what the future holds.
Thanks to everyone for reading. Even if I can help one person feel less alone, or can give one person hope or advice, or friendship, or support, then I feel accomplished and I am happy. We’re finally up to date now, so no more history/back story blogs for now, and we can get onto our current journey. I have learnt to let go and let God, and I understand that he has a plan. As long as I have Zariah, everything is and will be fine.
I’m just gonna dive straight in. So in my last blog, I detailed up until the last little section of my pregnancy, and mentioned that everything was fine with the baby, so I’m just gonna start from there.
Like I said, the baby was fine. I had packed most of the stuff I thought I needed for the birth, and had it ready in my room. I had read lists from every pregnancy site possible, and still wasn’t sure I had enough to comfortably have my baby. I wasn’t even sure who my birth partner was going to be, I was semi ready to do it alone. I’ll admit, sometimes I over-do the whole “independent woman” vibe. I’ve seen my mum do it ALL, literally, a woman’s job, and man’s job and more. I was following in her footsteps and was good with it. I like having my own, no man could ever tell me anything about my achievements, my success, my possessions, or my daughter’s because I worked for each and every damn thing. My daughter was spoilt, and still is, without any guys contributions. I was on some “Gurrrllll, you don’t need no man” flex. I needed a birth partner though lol, let’s be real, everyone should have one, but since my ex was soooo useless during the pregnancy, I just didn’t want him around. After all his flaking, would this boy even show up? LOL. Not a gamble I was tryna take.
Anyways, on the 26th of January, I was exactly 39 weeks pregnant, with one week to go. I had an appointment that day, and everything was fine with the baby. Who knew in 24 hours, everything was going to go to shit. The 39 week appointment was routine. The midwife was happy with everything, it was standard as hell and I don’t remember anything significant from that day. I was in better spirits, and looking forward to the end of the pregnancy. All I know is, in that appointment, on the 26th January 2017, I went home with nothing wrong with Zariah.
Remember what I said in the last blog about living a separate life to the outside world compared to inside my house? Well that didn’t change. I had one close friend, who had just had a baby a few months before, who was my main support during my pregnancy. She checked up on me regularly, and was just an amazing spirit in general. God bless her man, I think she knew that I was going through a hard time, especially at the end, and she really did try, but I just tend to isolate when I start to feel crap so I didn’t really open up much. I used to brush everything off like it was all fine.
Anyways cool, I got home after the appointment on the 26th, and felt shitty all over again. I sat on my corner sofa with the lights off, crying alone. It’s probably bad to say on this blog, but I had a sort of back up stash of old plates that I kept in one cupboard, for when I felt the need to self harm. I smashed a bowl on the floor in the kitchen, looked for the sharpest piece, took myself to the living room, where I sat back down and began to cut and cry. (This is NOT a good way to cope with things, I can’t emphasise it enough. I don’t care who you are, when you’re reading this, or whatever you’re feeling crappy over, please message me if you ever want to talk, or rant about nothing, or cry, or anything in between. The cutting thing does not do a damn thing. Please, please reach out).
Anyways, that night was a rough one. Just low moods, where you literally don’t know what to do with yourself. I switched my phone on flight mode (not that my phone was popping off like that anyways), and cried myself to sleep. Pregnancy was lonely, and towards the end I doubted myself. I didn’t feel attached to the baby growing inside of me anymore. During the depression in the end, I’m not even sure I felt her move that much, but they don’t tell you how often you should feel your baby move anymore, and at every appointment, including the one on the 26th, everything was fine. The sadness clouded everything, days were just long and miserable, and I would put on a smiley face for the nurses and everyone outside of my house.
I woke up on the 27th and felt the same. Just a suffocating sadness.Unrecognisable sadness. And you know what the maddest thing is, I didn’t know why I was sad. I don’t know if it was everything or nothing, all I knew is that I couldn’t even hear myself think. To try and make out one clear thought in my head was impossible. I was just frozen in my seat, all day, crying. I lost my appetite and had done for a while now, but I remember earlier in the day having a conversation with that same good friend that kept checking on me, pretending I was amazing. It’s kind of creepy the way I could switch it on and off for other people, but when other people weren’t around, I just couldn’t keep up the act. I swear someone’s spirit had just cursed me, and I was choking in a black cloud of depression, whilst my normal, happy and bubbly personality was running for the door.
On that day, I can’t even remember if time travelled slowly or not, but I remember sinking. The sadness just kept getting worse and worse, I started thinking all sorts of madness thoughts, about how to end my life but save the baby. I couldn’t hear my own thoughts, it’s like your soul is being dragged underwater and you’re fighting with your last breaths to stay afloat. In a split second of desperation, around 4pm on the 27th January 2017, I called the perinatal midwife. I had grown to like her before the breakdown in December, and begged her to let me get induced because I couldn’t continue any longer. God actually knows how much of a mess I must have sounded on that phone line, but it was enough for her to panic and send a social worker to my house, and call the police, to escort me to the hospital. I can’t even lie to you, despite the dramas that got me to that point, i.e. the police and social services coming, knowing this is gonna f*ck up my case later down the line, I was so relieved that the hospital agreed to induce me.
I had some random woman in my house helping me with my bags and what not, and I just felt good. Even though I wasn’t in labour at all, I was about to have my baby. I was jolly lol, you would never imagine that I was just self harming last night. The mind can play some dirty tricks on you, and honestly, I can reflect back now and see that I wasn’t well. I all had a spring in my step like I’d won the lottery. It’s sickening how quickly I could just stop crying and start to grin teeth like everything in life was roses and strawberries for other people. Anyways, bags were packed, I was excited as hell, and I got into a cab with this complete stranger social worker to go and have my baby.
Let me remind you that I wasn’t in labour. The hospital agreed to induce me based on social concerns, because of the history of mental illness and what not, and 24 hours ago, everything was absolutely fine. Anyways, I got to the hospital around 5.30pm. They stuck the CTG monitor on me almost immediately (the machine that monitors the baby’s heartbeat and general wellbeing). The nurses put it on me routinely, as I was due to be induced that evening. It started kicking in, like “oh shit this is happening”, and nerves started to creep in as well, cos I had never pushed a baby out of my fanny before. They had me on the bed, spread my legs and put this ridiculous tube in my vagina to see if I was dilated. When I’m nervous or uncomfortable, I just giggle a lot. It’s like an awkward giggle, which probably isn’t the best response in serious situations. I had my vagina out in front of nurses and this random social worker that I JUST MET. Talk about intimate, at least take me out to eat first, something.
Tbh, the whole stranger thing didn’t bother me too much. I spend 5+ years in care, I was used to strangers lol. The nurses kept coming in and out of the room, checking the machine and going. I mean, that’s normal, right? I have never had a baby before, I didn’t know what to expect, and the nurses were acting completely normal with me. One of the midwives asked if I had eaten that day, and I said no. She said “oh baby’s just looking a little bit more tired than usual”, but the way she said it was so reassuring, like it’s normal and happens loads, I’m all here bussing jokes with the stranger social worker lady whilst they’re doing their thing. The nurse said that she was gonna put me on a drip, which was basically sugar water, to give the baby energy and get her moving more. I wasn’t even the slightest bit worried. I thought they were doing ward rounds when the doctor came to visit me, which is completely normal considering I was about to be induced into labour. The presence of nurses and midwives frequently seemed normal to me. All the staff were acting normal, smiling at me and joking around like everything was alright, when in actual fact, they saw something was wrong with the baby from the minute I got in there.
I had been on the bed now for about an hour, and the doctor came into the room to talk to me. He seemed rushed, again which I thought was normal. I assumed there’s so many other women pushing out babies in this place, there must be more urgent people for this man to attend to. The doctor said “oh baby doesn’t seem to be moving enough, we’re going to change your position and increase the drip to see if that helps”. When I look back at it now, he just seemed patronising as hell, but at the time, even that didn’t make me flinch. I thought he was just talking to me like that because it’s minor and normal. He didn’t even in the slightest, indicate that something was seriously wrong. He then said “if it doesn’t improve in half an hour, we may have to consider a c-section”. I remember feeling panicked at that statement, but he made it seem like he was giving the worst case scenario, but that was almost impossible. He didn’t make it seem like a likely possibility. Everyone majorly played down the seriousness of my baby’s poor health. I hadn’t called anyone yet. No one even knew I was in the hospital. I had another friend who got induced a few months before, and I was in contact with her during her labour. It took days! I just assumed we were gonna be here for a long while before anything actually starts happening, so I didn’t call a damn soul. This was about 6.30pm.
Even though C-section was mentioned, when I started to worry he calmed me down and like I said, made it seem like ahh yeah its ridiculously unlikely. They didn’t portray the seriousness of what was going on. Even the social worker still sat up in the room with me giggling about nothing.
Half an hour passed, and the doctors and nurse storm in like “we’re gonna have to have a c-section”. I said waahhhhh? I just started bursting into tears. I didn’t even understand what was happening. I asked why, and even after they put me on an operating table, they played down the seriousness, like nothing was wrong and they were just being cautious. Later down the line, they said they played it down “as they didn’t want me to panic and it negatively affect the baby”. Anyways, I’m crying and scared because it’s just gone wayy left from what I assumed was going to happen. The same nurses that were lounging around doing up casual were suddenly rushing, the doctor is changing clothes and someone hands me some nonsense surgery rag, telling me to put it on. I didn’t even have time to catch my breath. I’m crying hysterically and this social worker is trying to comfort me. Suddenly, she became useless. I wanted my family. I wanted familiarity. As I was crying to the doctor, I asked if I could call someone and wait for them to come before we go into surgery. He said I can make my phone call, but we can’t wait for anyone. Only then is when I clocked, shit, something is majorly wrong. I was a mess, I was lost.
I called my mum, but she was coming from Essex, and I knew she wouldn’t make it in time. I told her to come it’s happening now, she dropped what she was doing and began to make her way. I called my ex and didn’t even explain, I just said come now it’s happening and he made his way. The doctors though, were suddenly in a hurry after an hour and a bit of me laying there doing nothing, despite them knowing and seeing something was wrong from the minute I walked in. They weren’t waiting for no one. I think only then had they realised how enormously they had f*cked up. The social worker lady, offered to come in with me, her service user that she had never met before, and be my birth partner. She sat in the room with me and held my hand as the doctors bent my spine, told me not to move an inch, and put some 100 metre needle in my back (exaggeration, clearly, but that thing was massive). I was shitting myself. Within seconds, they laid me down and started asking me to wiggle my toes and try and lift my leg. I was completely paralysed from the waist down, looking up at the ceiling of some well lit room, and they began the surgery, social worker by my side.
My ex turned up mid way through the surgery and the social worker wished me well and said she would be in touch. He came before they pulled the baby out of my stomach, and I couldn’t feel a thing, but his presence was calming. That’s the one thing he didn’t fuck up. He showed up. Suddenly when he arrived, I was smiling again, and was joking about with him, he was too scared to look at my cut open body and I didn’t want him to be staring at my un-shaved vagina. We were kids. I was 20 years old in the biggest surgery of my life, oblivious to how big the problem was. Until she came out…
Silent and lifeless and blue… My fucking heart.
Even typing this is heartbreaking. My eyes are watering and it just brings me back to the actual day my life started. It’s such a crippling experience. Whether you have kids or not, everyone knows the baby is supposed to cry when they come out. Shit was silent. All I remember is continuously asking “what’s wrong, what’s wrong” and everyone was silent. An alarm like sound went off in the ward, and I can’t even really remember that bit, but it’s called a crash call. All of a sudden there were a bunch of doctors and nurses bursting into the room. It’s like that alarm was summoning the army. Basically, during a crash call, every medical staff available on that ward is supposed to come and assist. They only use it in the worst situations. I didn’t know that at the time but seeing so many people poor into the room, I immediately knew something was going horribly wrong. At this point I was crying and screaming on this table, begging for someone to answer me, and everyone was just ignoring. I mean I shouldn’t say they were ignoring me, as they were busy saving my child’s life, but I’ve never felt so helpless. I was crippled from the waist down, couldn’t even prop my upper body up to see what was happening, all the staff were crowded round my daughter in a huddle. Still no cry… I’m crying hysterically and screaming like a mad woman at this point. I thought I gave birth to a dead baby, and thank God for this country and for technology, because in a less developed country, they could have said my daughter was gone and there was nothing they could do.
Finally, someone responded to my screams. At this point there were a whole football team and subs worth of staff in the surgery room. I can’t remember whose mouth even said it, but someone said “she just needs some extra help to breathe at the moment”. I asked to see her, and they rolled her over on some metal table with wheels, with nurses manually doing her breathing for her with her finger on the mouth and what looked like a mini air mattress pump. They only let me see her for like 5 seconds before they put her in the intensive care ward. I was a mess. My ex was crying, I was crying. I was just living a nightmare. How can the day go so wrong? They patched me back up and wheeled me to some recovery area, and I saw my child properly for the first time in the early hours of the next morning.
Zariah was born at 7.57pm, on the 27th January 2017. We had a 6 week journey ahead of us before Zariah eventually came home. I shared the first picture I took of Zariah yesterday, and she was hooked to every single machine you could think of. It felt like someone was just trodding all over my heart.
I knew this story would be long, but I honestly thought it was something I would finish in 2 parts, but evidently there’s got to be a third. I will try my best to cover the journey home and her diagnosis in the next blog post. Hopefully after that, I’ll be up to date and we can get back to the present day.
I know I keep saying it but honestly, thank you to everyone for the support and warm messages. The response has been overwhelming, and I genuinely hope that at least one person finds support or comfort knowing they’re not alone in some of the topics covered in these blogs. Most people advertise their pregnancies to be amazing, which it should be, but the experience is not the same for everyone, but regardless of your circumstance you should be supported and never alone. Anyone who is struggling, or had struggled with anything mentioned in this or previous posts, feel free to message, to talk or just for a friend. Hope you’ve enjoyed the read x
Hi everyone! Before I start I just want to say thank you to everyone who has sent messages of love and support our way. I started writing this just to vent, and I didn’t think anyone would read it or care, but honestly the well wishes have meant so much. Thank you to everyone reading, sharing and supporting. Much love xxxx
Because of the way I started this, I didn’t really explain the events that led up to the “never walking” appointment and I didn’t really discuss my daughters diagnoses’. So today I’m going to start from the beginning.
April 2016. I started a job in Santander. Probably doesn’t sound relevant, and that detail doesn’t play a gigantic part in this story, but for me, it signified a positive turning point in my life. I had been with my ex (my daughters dad) for maybe 2 years or so, but the relationship wasn’t the happiest (that in itself is a whole other story). But touching on the basics, my ex had lived with me since about October 2015, and the whole time I was carrying him financially. He didn’t contribute a penny towards living costs but still had mouth to continue asking for more. Before Santander, I worked in a bookies, so I was working 60/70 hour weeks every week, to keep up with his ever increasing demands (like I said, a whole other story). Anyways, Santander signified a new start. I was excited to not be breaking my back working ridiculous hours, I was looking forward to not being exhausted all day everyday, starting at 7am and finishing at 10pm. It was the kind of job your parents would be proud of at 19 years old. I started the job in April, and was planning to go to university in September. It felt like life outside of my relationship was looking up, I was excited.
Anyways, fast forward now, in June, I found out I was pregnant. Let me be honest, the relationship, for me anyways, was coming to an end for a long time now. As each day came and went, I just felt emotionally done with the situation, and was semi ready to go. Then to find out I was pregnant. Whew chileee, it just felt like a slap in the face. I can’t even believe I’m fixing my hands to type that nonsense because I look at Zariah and just think this is my BEST FRIEND. God forgive me for even carrying such thoughts, but it’s genuinely how I felt. My partner was older than me but maturity-wise, at that point he wasn’t all there, so it wasn’t exactly like I could lean on him for support. Plus he was going through his own situation, the whole way through the relationship it was just me supporting him. But nevermind all that for now, the pregnancy. I immediately considered abortion. Culturally, religiously, morally, and in every other way possible, to me, abortion is an abomination. But I won’t front, I considered it, heavily. I was so conflicted because I’d had one before, aged 18 (again, another days story), but when I tell you, I have never regretted a decision as much as I did and still do that one. I didn’t think I could do it again, but at the same time I felt trapped with a guy who doesn’t treat me well, and who I know for sure is not the guy I’m going to spend my life with. If I had the baby, I was mentally accepting that I’m going to be a single parent, even though he’s there, because I’m not spending my life with this guy. I kind of knew how the story would go.
All of this is going on in my head, and I haven’t even told my mum yet. My mind was literally fried. My ex didn’t want me to have an abortion, but I think that’s only because he felt guilty for making me have the first one (I’m sorry for saying this a hundred times, but it legitimately is a longggg story that I will cover another day). The relationship with my ex was at breaking point, bringing a life into that situation was just not a smart decision that anyone could have planned, but hey ho, you might be thinking you’re going one way in life and God just slaps you in a different direction. I ended up telling my mum in potentially the worst way possible. As things with my partner were getting worse, our arguments were escalating. We fought physically (with violence coming from BOTH of us, not just him). Fights would just get more and more violent, arguments more spiteful, and the atmosphere more cold. I would ask him to leave so many times, he just wouldn’t budge. I called the police in a few of our altercations, but one day before work, a massive argument broke out, we ended up fighting, and I locked myself in the toilet and called my mum. She just heard hysterical crying, she was panicked and kept asking what was going on. My ex was outside the door saying God knows what, and I just ended up screaming down the phone “I’M PREGNANT”. God knows how my ex and I got over that situation that day, but all I know is I went into work ridiculously late, with a bloodshot eye, and was lying to everyone about how I got it.
My mum, bless her soul, was so supportive. She expressed clearly she was against me getting an abortion, and didn’t understand why I was considering one when only a few months ago I was singing my exes praises, talking about how he’s the guy I wanna marry and what not. I sat down and told my mum the wholeeeee story, and that was the first time I told her that I had already had an abortion 2 years before. But you know what, that woman is a rider. She knew what her values were and made her stance clear, but was willing to support me through any and every decision I made, as any mother should. I went to the abortion place a few days later, but my ex was messaging me begging me not to, and even without his messages, I don’t think I could have gone through with it anyways. So I left the hospital, and just like that the decision was made. I was keeping my baby…
As I’m writing this story, I’m realising there’s so many side stories that need to be told for you to fully understand this journey, but it honestly is another days job, because I’ll just keep you guys here reading forever kmt. But we move…
Me and my ex had a disgustingly massive fight sometime in June/July 2016, you would have thought we were shooting some WWE fight scene. It was ridiculous, there was choking, spitting, pushing, punching and everything else in between. We broke up from there. He actually tried to resolve it after that fight but I was so furious, I couldn’t hold any kind of mending conversation at that time. He eventually left and tbh that was it. We were done. My heart still loved him but I couldn’t bring my mouth to communicate anything other than “I don’t care” and “F**k you”. We were broken up, but he still came to the first scan at the University College Hospital in Camden/Euston area. The scan was nice, you know when you still love someone and the vibe is good, you forget all the spiteful actions and words that have been said prior to that. We went home together after that, excited about baby stuff, talking about gender, and baby shopping and all the nice things that come in early stages of a pregnancy. This was the kind of vibe that makes you forget you’re broken up. The sun was out, it was summer, he came back to mine, chilled, watched TV, ate ice poles, it was just good vibes, like old times. The first scan went well, there were no problems and we got our official due date – 2nd February 2017.
Don’t get it twisted though, one good appointment with my ex didn’t mean a damn thing. I did the pregnancy alone. He came to the other scan, where you find out the sex, but it was bitter sweet. He actually complained that we were having a girl, which kinda put a spoiler on the mood, and when I mentioned it, he said he was joking, and acted like I was the problem. In that same scan the doctor also referred us to have another scan as he thought something wasn’t right with the heart. The next scan, my ex didn’t show, and I was told that Zariah had a hole in her heart. They told me it was tiny and will probably make no difference, but any news that something is wrong as an expectant mother feels like the end of the world, I had to take that on my own, and cried on my way home.
Anyways lemme rewind a bit. I have a mental illness. Everything I’m saying right now just sounds like a recipe for disaster but I want to be completely honest about my experience and the timeline of events. I have a personality disorder which was diagnosed when I was about 17, but because of that, I had to have regular perinatal (mental health) appointments during the pregnancy. Everything was fine throughout the majority though. I quite enjoyed going to the appointments and speaking to the lady, it was an outlet I didn’t have anywhere else. My ex only wanted to play a part or help out if we got back together, which I didn’t want to do, and every time I tried to involve him, he would flake, and when I would ask for help, he would use the excuse of “you’re not my girl anymore” so he didn’t have to play a part. Majority of the pregnancy went that way. We would plan things, i.e. shopping for the baby, putting together lists of things we need, he wouldn’t show, we would argue, he’d say something spiteful or blow up and I’d block him. He spent half of the pregnancy blocked lol, and I did all the other stuff on my own or with my friends.
Overall, there were so many issues with my personal life at the time of my pregnancy, but the pregnancy in itself was fine. I was categorised as low risk and was planning a water birth. There was nothing wrong with the baby throughout (other than the hole in the heart, but medically, it was too small to make a difference). She was growing fine, all the appointments went well, I felt her move quite a lot in the early days, I got used to doing the pregnancy alone and I quite liked it. My skin was glowing, work was going well, the only real problem I had was my ex, who was super hurtful at times, but I distanced myself, and things went alright. He was ghost most of the pregnancy. His working situation was a mess so I always did everything financially alone, although he would talk of all the things he was gonna do for her, but in the back of my mind, I knew not to buy the dreams he was selling. When he did start working, he didn’t buy a damn thing for Zariah. Instead, he rocked up to my flat in a new North Face jacket. What the hell? I was out here putting everything into getting things for my daughter, which I was quite excited about, and my ex, who was begging to get back together, was using his money to buy designer clothes instead of putting even 20% of his money towards his baby? When I brought it up, he just argued with me. The whole “ur not my girl anymore” argument made it’s comeback. For someone who was texting and calling me everyday talking about he wants to try again, he sure used that line quite a lot. He would advertise himself as single on his social media, whilst texting me at the same time telling me he loves me and our unborn child and wants to be a family. Urgh, I look back now and just think what in the actual hell was I doing lol.
Anyways, back to the pregnancy. Summer came and went, we were into the winter months and February just kept getting closer and closer. Because of the mental illness, in that first perinatal appointment, they offered medication I could take whilst I was pregnant to help me manage. However, the doctor had said that no medication was 100% safe for the baby, and because life was going quite alright (aside from my ex), I wanted to go without. That decision came to bite me in the bum towards the end though.
I got bigger and bigger, but without medication, things began to pile on. I think for anyone pregnancy is a hard thing to go through, but it is especially hard when you’re on your own. I’m the kind person who likes to keep busy and keep moving. When I’m at home, it just gives me space to think about too much and I always end up feeling depressed. I lived a complete different life at home compared to when I was out in the world. From about 28/29 weeks, the depression started to follow me out of the house. I started calling the hospital antenatal line asking to be induced. Because there was no medical problems requiring me to bring Zariah in the world as a premature baby, the hospital kept declining. I look back a lot of the time and realise how completely naive I was back then. I was practically a kid having a kid, I never knew how serious having a premature baby can be, so I just kept asking and asking. Like I said, the hospital kept declining. In December, everything went to shit. I had started my maternity leave, and was getting closer to the due date, and honestly I don’t think I’ve ever been so low. Because I wasn’t going to work anymore, the only time I would leave the house is for the occasional hospital appointment or baby shopping trip with my girl. I spent most of the days indoors crying, self harming and asking to be induced. The end of December was the hardest. I reached my breaking point and the pregnancy was beyond miserable, my ex partner was absent, and only ever showed his face to argue with me and threaten me when I wouldn’t see his point of view. “I’m gonna take custody of her and call mental health and social services and you’ll never see your baby” was the most popular one. For someone that knew of my mental illness from the day he met me, his ignorance was still high as ever. He was spiteful as hell and would say absolutely anything to provoke a response.
Even though I did well not to engage with the back and forth towards the end of the pregnancy, it really did affect my mental health. I was breaking slowly. I couldn’t manage and I began to feel ill thoughts towards the pregnancy and the baby. I kept saying I just wanted the pregnancy to be done, and honestly, I’m not even sure what I meant by that. I stopped looking after myself towards the end. Stopped leaving the house, showering, eating, taking general care of myself or the baby. Everything in my house was neat and prepared for a baby. I built a chest of drawers, a new cot, a new wardrobe by myself. Bought a moses basket, washed, ironed and put away all Zariah’s clothes neatly. Despite me saying I wanted the pregnancy to be done and all sorts of nonsense, I had already prepared.
One day, I just remember feeling really low. I was desperate for my mood to change, as I could feel my mental health deteriorating. I just started feeling sadder and sadder, and then there reaches a point where I stop acting rationally, and can only describe my mood to professionals as “feeling shit”. Once I reached the point, I went to the GP, crying, looking like an unkempt mess, demanding pills. That obviously raised red flags, because the GP was not the person that told me I can just request these pills and they would give them to me should I need them, and even so, medication for your mental health often takes numerous weeks to kick in, making you feel worse before you feel better. At this point I only had like 4/5 weeks left of pregnancy, but I genuinely didn’t feel as though I would make it there. Once the GP told me they wouldn’t be able to prescribe me anything I just upped and left, which didn’t help because they became increasingly concerned and called the hospital and the mental health crisis team. When I’m in states like that though, I tend to isolate. I switched off my phone for days, and missed my perinatal appointment at the hospital. Because of my sudden lack of engagement, social services were called to assess my welfare and the welfare of my unborn baby.
& just like that, my unborn child was on the child protection register.
I mean, it didn’t happen “just like that”, there were a few things that were said and done before social services made that decision, but that’s another days story. But that decision there, was my worst nightmare.
Anyways, even though my mental health was struggling, I didn’t want to harm my baby, so although I disengaged with the mental health services, I kept to all my antenatal appointments, and made sure she was good, and she was. For the whole of the 9 month pregnancy, my baby was fine. We never missed any antenatal appointments, she was growing fine, I felt her kick and move around, she was the picture of health, until the 27th January 2017.
I’m really not tryna leave you guys on some cliffhanger Eastenders vibe, but I really need to pause. I feel like this story has been going forever, and I’m pretty sure I’ve kept everyone for way too long. If you are reading this, I will update the next part as soon as possible and try and get back to Zariah instead of everything else I’ve mentioned thus far. I just wanted to give an honest recollection of my pregnancy and how things were before the birth.
Again, thank you guys so much for reading, I’m still a little in shock at the response, but it really does mean a lot. I wanted to document this story because the stuff covered is not widely spoke about in our communities. A lot of the stuff mentioned, i.e. abortions and poor mental health is something that many people experience or encounter in this day and age but fail to speak openly about due to the stigma. Only after I was born did I tell the rest of my family that I had a mental illness, and even then, it was only because it was a condition imposed by social services in order for me to keep my daughter. The stigma attached is soo real. Anyways, thanks so much for the love, and anyone and everyone can feel free to message me about absolutely anything, should you want to comment or speak about something else. Feel free to share with anyone you feel this may help or inspire. Love x
Here’s the first picture I took of Zariah in the early hours of the 28th January 2017. I’ll update as soon as, and thanks again for reading x
So the past few days have been good… I mean, better. I took Zariah to her first live show (In The Night Garden) , was out and about in the sun, and didn’t spend too much time dwelling on the physiotherapists comments. Just a better weekend in general. Plus Zariah is crazy smiley, so you don’t really get much time to be sad.
I take my comments from my last post back though, about my mum. Turns out she’s amazing (God knows why I sound surprised). I told her about the results of Zariah’s GMFM assessment (the test therapists do to predict whether children will be able to walk independently), and we had a good old cry but we talked it out. She gave me great advice, and to be honest, it just felt nice to open up. Obviously, it’s a major deal and sometimes I still get teary about it, but the brain isn’t an exact science, so I’ve still got hope. I could NEVER give up on my daughter anyways, like eww, what even is that? If I haven’t got her who will?
Anyways, onto less depressing topics. I took Zariah to Hackney Empire today. Zariah enjoyed it, screaming at all the characters and what not, but legit there are some really nasty intolerable parents in this world. We’ve all paid for our seats, but we had a spare seat because Zariah can’t sit down on her own so she just sits on my lap. I kept Zariah’s bag and the souvenirs and stuff on the spare seat, and the seats next to that were occupied by another family. Zariah was excited, as you are when there’s a life sized Iggle Piggle jumping around the stage in front of you, and the place was full of excited babies and toddlers, so as you can imagine, it was a little noisy in there. Zariah screamed with excitement when the intro song came on, and she dropped her cup on the floor (her EMPTY cup). Next thing you know, this stubby little impatient man literally picks up his child in a huff, mumbles some nonsense under his breath and storms off! What the hell? Everyone was just looking around at him making a scene, whilst he literally dragged his toddler to go and stand elsewhere, where they remained standing for the duration of the whole show. I mean it doesn’t exactly hurt me, cos Lord knows I’m too big and lazy to be carrying Zariah standing up for an hour, but why so extra? Why make a scene? That’s not even a disability thing, just about having a little patience in general? The place is full of happy kids, if that makes you so angry there are other places you could be. Wanna be miserable? Go watch an Arsenal game or something, don’t bring that energy here. Butttttt, nevertheless, Zariah had an amazing time and it was really nice to get out in the sun.
Anyways, this late night thing needs to disappear because when Zariah wakes up bright and early at 7 something tomorrow, I’m going to feel like death. I just thought to continue the writing because it honestly made me feel much better after the other day, and I also didn’t want to portray parenting my beautiful girl as a constant struggle. She’s the most playful, happy girl and honestly being around her is a joy, but it is a lot, for anyone, and nobody tells you how low the lows can be sometimes. Anyways, onto better things, Zariah’s here for a purpose, and this is all part of God’s plan. We’ve got appointments every single day of the week this week so praying for a more productive week than the last.
Have a prosperous week guys.
P.S. Also, if anyone with (or without) kids, knows of any events or activities in and around London for toddlers and babies, give us a shout. Really trying to get out with Zariah more. Got into the habit of hiding away indoors, but don’t want to isolate my girl from the rest of the world just because she’s not able to do everything that other kids can. Sooo yeah, hit me up! Love xxx
So today, well yesterday now (31st May 2019), I was told that my daughter will never walk. How do you receive that blow? Like what is the next response? I look down at my beautiful girl Zariah, who is having the time of her life playing with these funnily shaped building blocks, and she has no clue. She’s completely oblivious, whilst her physiotherapist is explaining to me that she won’t be able to do any of the things you wish for your child. I don’t even know how to feel.
This is the first time I’ve actually said it since the appointment. I haven’t told my mum, my aunts, her dad, or my boyfriend (yes, they’re two different people). I don’t even think I’ve properly digested it. When the lady told me, I played it cool as hell, expression was blank and I just went on like I was expecting it. I definitely wasn’t, but I wanted to prepare for the worst cos I’ve been in that position before where you’re overly hopeful, and believe me, the let-down is e p i c. I didn’t want to expose myself to heartbreak or disappointment if the results weren’t what I was hoping for, but that’s exactly what’s happened and that’s exactly how I feel right now. Heartbroken. My chest is hurting. My spirit literally feels broken and I feel alone. You ever been surrounded by such a great support system but feel completely and utterly alone? Deadass by myself, crying in bed. It’s 3.17 in the morning and my daughter is asleep beside me, just being perfect. I even feel selfish sitting here talking about how I feel, when my daughter is the one with the life-limiting condition. She struggles everyday to do things that everyone else wouldn’t even think twice about. How is that fair? My daughter is suffering life long consequences as a result of someone else’s mistake. I try to stay faithful and I pray everyday, but why would God do that to her? To me?
My daughter is 2 years, 4 months and 4 days old (I legit just googled that). She is a GORGEOUS soul, she’s happy and she’s mine. She’s my best friend, my motivator, my literal heartbeat and my guardian angel. If you know what kind of a life I was living before her.. I was just lost, and she’s just given me purpose. I’m a new person thanks to her. I probably should have done introductions beforehand, but honestly I just started writing this because I needed an outlet. I haven’t told my mum about today’s appointment because I just don’t think I want to hear the typical Nigerian/African response just brushing the physio’s comments off. “She’s fine, you just need to pray more, open holy water, these people don’t know what they’re saying – she will walk”. I know my mum doesn’t mean to at all, but when she gives advice, she just makes me feel like I’m not doing enough. It’s hard as it is, I don’t want to feel like I’m failing.
Ooo, & just like that, the tears are back.
My daughter has cerebral palsy, as a result of mistakes made by medical professionals at birth, and honestly, I think that makes it even harder to digest. If things were done properly, would I even be here? Life would just be so different, Zariah would be active, and included in things, and speaking and achieving Lord knows what else. But she’s not. She’s being kicked out of a nursery she has been at since 4 months, because they “can’t cater for her anymore” and she’s excluded from practically every activity that her peers are doing because of her physical limitations. Oh no mate. Not my child. She will be accepted, loved, valued and nurtured by force by bloody fire. I think I’ve just gone over about 8 moods in the past 20 seconds, so I think that’s my cue to hit the hay, but this writing thing was therapeutic. I doubt anyone is gonna read this, especially cos I probably won’t share it, but if you are, thanks for reading and goodnight x