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

They Want My 2 Year Old Driving a Wheelchair?

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

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

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

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

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

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

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

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

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

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

“Special” Schools?

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

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

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

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

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

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

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

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

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

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

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

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

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.

It’s Not All Doom and Gloom

So the past few days have been good… I mean, better. I took Zariah to her first live show (In The Night Garden) , was out and about in the sun, and didn’t spend too much time dwelling on the physiotherapists comments. Just a better weekend in general. Plus Zariah is crazy smiley, so you don’t really get much time to be sad.

I take my comments from my last post back though, about my mum. Turns out she’s amazing (God knows why I sound surprised). I told her about the results of Zariah’s GMFM assessment (the test therapists do to predict whether children will be able to walk independently), and we had a good old cry but we talked it out. She gave me great advice, and to be honest, it just felt nice to open up. Obviously, it’s a major deal and sometimes I still get teary about it, but the brain isn’t an exact science, so I’ve still got hope. I could NEVER give up on my daughter anyways, like eww, what even is that? If I haven’t got her who will?

Anyways, onto less depressing topics. I took Zariah to Hackney Empire today. Zariah enjoyed it, screaming at all the characters and what not, but legit there are some really nasty intolerable parents in this world. We’ve all paid for our seats, but we had a spare seat because Zariah can’t sit down on her own so she just sits on my lap. I kept Zariah’s bag and the souvenirs and stuff on the spare seat, and the seats next to that were occupied by another family. Zariah was excited, as you are when there’s a life sized Iggle Piggle jumping around the stage in front of you, and the place was full of excited babies and toddlers, so as you can imagine, it was a little noisy in there. Zariah screamed with excitement when the intro song came on, and she dropped her cup on the floor (her EMPTY cup). Next thing you know, this stubby little impatient man literally picks up his child in a huff, mumbles some nonsense under his breath and storms off! What the hell? Everyone was just looking around at him making a scene, whilst he literally dragged his toddler to go and stand elsewhere, where they remained standing for the duration of the whole show. I mean it doesn’t exactly hurt me, cos Lord knows I’m too big and lazy to be carrying Zariah standing up for an hour, but why so extra? Why make a scene? That’s not even a disability thing, just about having a little patience in general? The place is full of happy kids, if that makes you so angry there are other places you could be. Wanna be miserable? Go watch an Arsenal game or something, don’t bring that energy here. Butttttt, nevertheless, Zariah had an amazing time and it was really nice to get out in the sun.

Anyways, this late night thing needs to disappear because when Zariah wakes up bright and early at 7 something tomorrow, I’m going to feel like death. I just thought to continue the writing because it honestly made me feel much better after the other day, and I also didn’t want to portray parenting my beautiful girl as a constant struggle. She’s the most playful, happy girl and honestly being around her is a joy, but it is a lot, for anyone, and nobody tells you how low the lows can be sometimes. Anyways, onto better things, Zariah’s here for a purpose, and this is all part of God’s plan. We’ve got appointments every single day of the week this week so praying for a more productive week than the last.

Have a prosperous week guys.

P.S. Also, if anyone with (or without) kids, knows of any events or activities in and around London for toddlers and babies, give us a shout. Really trying to get out with Zariah more. Got into the habit of hiding away indoors, but don’t want to isolate my girl from the rest of the world just because she’s not able to do everything that other kids can. Sooo yeah, hit me up! Love xxx