So, as you can probably tell by the title, right now I’m on 1000. I can’t put into words how much of an amazing day today has been. It just feels like testimony after testimony, and for that I’m eternally grateful. At times where it feels like no one is on our side, here comes God, waving his hands of wonders all over our lives. He is truly amazing.
I know I haven’t written in literally months, but there has been so much going on, and so much I need to fill you in on, which will come in time, but today, we’re talking WINS. I don’t ever take L’s (losses), however in the past few months especially, I’ve hit so many brick walls, and felt like I was fighting a losing battle on my own. I mean this whole blog started after I was told my daughter will never walk, and then days before that I was told to find new childcare for Zariah ‘cos they can’t cater to her need anymore. In just a number of days I was handed so much bad news, and felt myself sinking into a depression. On the back of the news from the nursery, I started looking for special schools for Zariah, and when I found the perfect one and thought things were looking up, I was shot back down and told they wouldn’t take her until next year (I will go into that in another blog). I got into a major back and forth battle with them, and it wasn’t pretty. Urgh. Well today, I signed papers for my daughter to be admitted to that same school, next week. Can I get a hallelujah? Amen? Praise God? Something? Honestly, excited is such an understatement. I fought for my baby and I won. I’m coming for the JUGULARRRRRRR of anyone who’s not tryna do right by my baby girl.
Aside from the amazing school news, which is the literal peak of my entire year after the battle we went through, I’ve got new blogs I’m working on, I started my FINAL year of university today, got good news from my first choice graduate scheme, and overall, things in my life are just starting to piece well together. I’m eternally grateful for everyone that’s been wishing Zariah well, and I’m looking forward to the next stage in this madness adventure. I know I have readers who also have special needs children, with some in areas that really don’t offer much for your children, so I will explain the whole school battle with the learning trust in another blog.
Thank you again for all the love and support, and as always, feel free to message me absolutely anything. I pray everyone else uses the rest of 2019 to take CONSTANT wins x
My baby is starting school!!!
Also, completely unrelated but as a Nigerian, I have to mention it. Happy Independence Day to the LOUDEST, MOST TALENTED, MOST POPULAR nation in Africa. Another good thing to add to my list of wins x
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
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
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
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..
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
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