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

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

And We Move…

So today, well yesterday now (31st May 2019), I was told that my daughter will never walk. How do you receive that blow? Like what is the next response? I look down at my beautiful girl Zariah, who is having the time of her life playing with these funnily shaped building blocks, and she has no clue. She’s completely oblivious, whilst her physiotherapist is explaining to me that she won’t be able to do any of the things you wish for your child. I don’t even know how to feel.

This is the first time I’ve actually said it since the appointment. I haven’t told my mum, my aunts, her dad, or my boyfriend (yes, they’re two different people). I don’t even think I’ve properly digested it. When the lady told me, I played it cool as hell, expression was blank and I just went on like I was expecting it. I definitely wasn’t, but I wanted to prepare for the worst cos I’ve been in that position before where you’re overly hopeful, and believe me, the let-down is e p i c. I didn’t want to expose myself to heartbreak or disappointment if the results weren’t what I was hoping for, but that’s exactly what’s happened and that’s exactly how I feel right now. Heartbroken. My chest is hurting. My spirit literally feels broken and I feel alone. You ever been surrounded by such a great support system but feel completely and utterly alone? Deadass by myself, crying in bed. It’s 3.17 in the morning and my daughter is asleep beside me, just being perfect. I even feel selfish sitting here talking about how I feel, when my daughter is the one with the life-limiting condition. She struggles everyday to do things that everyone else wouldn’t even think twice about. How is that fair? My daughter is suffering life long consequences as a result of someone else’s mistake. I try to stay faithful and I pray everyday, but why would God do that to her? To me?

My daughter is 2 years, 4 months and 4 days old (I legit just googled that). She is a GORGEOUS soul, she’s happy and she’s mine. She’s my best friend, my motivator, my literal heartbeat and my guardian angel. If you know what kind of a life I was living before her.. I was just lost, and she’s just given me purpose. I’m a new person thanks to her. I probably should have done introductions beforehand, but honestly I just started writing this because I needed an outlet. I haven’t told my mum about today’s appointment because I just don’t think I want to hear the typical Nigerian/African response just brushing the physio’s comments off. “She’s fine, you just need to pray more, open holy water, these people don’t know what they’re saying – she will walk”. I know my mum doesn’t mean to at all, but when she gives advice, she just makes me feel like I’m not doing enough. It’s hard as it is, I don’t want to feel like I’m failing.

Ooo, & just like that, the tears are back.

My daughter has cerebral palsy, as a result of mistakes made by medical professionals at birth, and honestly, I think that makes it even harder to digest. If things were done properly, would I even be here? Life would just be so different, Zariah would be active, and included in things, and speaking and achieving Lord knows what else. But she’s not. She’s being kicked out of a nursery she has been at since 4 months, because they “can’t cater for her anymore” and she’s excluded from practically every activity that her peers are doing because of her physical limitations. Oh no mate. Not my child. She will be accepted, loved, valued and nurtured by force by bloody fire. I think I’ve just gone over about 8 moods in the past 20 seconds, so I think that’s my cue to hit the hay, but this writing thing was therapeutic. I doubt anyone is gonna read this, especially cos I probably won’t share it, but if you are, thanks for reading and goodnight x