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

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

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

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

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

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

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

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

Botox for Babies?

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

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

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

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

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

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

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

So we just play the waiting game…

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

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

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

“Special” School Success?!

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

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

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

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

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

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

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

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

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

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

The Back Story – Part 3 (Diagnoses and Our Journey Home)

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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.