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
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