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
Cool, so I haven’t written in a while. I should really be thanking the girl whose blog I just read, because she’s actually what inspired me to start writing.
Zariah and I had a hectic week. Not a particularly horrible one, actually it ended quite well but started in a bit of a mess. Nothing particularly extravagant happened, but I thought I should share in the name of raising awareness and transparency.
So like most children with CP, Zariah had appointments almost everyday this week. In the name of this “transparency” thing though, that’s a lie. I really shouldn’t say “like most children with CP” because other than Zariah I know literally zero children with CP, so maybe it’s different for others, so I’ll just start again. On Monday, we had a big(ish) meeting with the majority of Zariah’s medical professionals (the physiotherapist, paediatrician, speech and language therapist and the occupational therapist). It started off as a general meeting just to update all the professionals on where we are with Zariah’s care, because even though they all work out of the same building, their communication can sometimes be trash (no shade to Hackney Ark if you’re reading this lol). Anyways, the appointment. It started off well, the paediatrician is this lovely Caribbean lady, she’s thorough and really knows what she’s talking about. We’ve had her since Zariah was born, which is nice because other than her and the occupational therapist, everyone else has changed like a hundred times. I can barely remember anyone’s names. Moving on though, I filled the paediatrician in on the latest of Zariah’s seizures, updates with medication, how Zariah is coping generally etc. and then we went into Zariah’s progress with each of the other therapists. The physiotherapist mentioned that Zariah recently had the GMFM assessment and the outcome was that Zariah is borderline 4/5 in their grading terms, meaning that it’s unlikely she will walk. It just felt like she kept trying to drum it in. She told me that she had spoken with Zariah’s other medical professionals and they “had all agreed” on it. All I heard is “we all think your child is going to be a vegetable” over and over again. Maybe it’s because I’m young or whatever or she thinks I’m too hopeful, but that appointment was only a few weeks ago love, trust me, I remember. You don’t have to keep beating the stick over my head. It’s just a touchy subject, I still get teary about it, how does one even get over that? It’s heartbreaking news.
I don’t want to keep dwelling on that, and maybe I should start to try and move on from that appointment, but even now writing about it and the appointment on Monday is just making me teary. I told the professionals about our struggle to find a nursery or childminder or school for Zariah. Being the centre for disability in our borough, I assumed that they would be able to give me some advice or have some experience of schools that accept and cater well for children with CP. They gave me the name of a nursery that is accessible and said that they’re not sure of the hours but they do offer around the year care. That boosted my mood a little bit after the whole not walking thing, but it was short lived. The physiotherapist said that once I find a nursery or school that is accessible for Zariah, they will start looking at giving her a powered wheelchair for her to get around, that nursery is the perfect place for her to learn how to use it. I almost choked. Excuse me?
& would you look at that, my tears are back for goodness sake.
In my head I was just thinking wtf? My child is 2. 2?! They want my TODDLER to drive a powered vehicle? I immediately had a picture of the powered wheelchairs you see people using in the street, with like a gear stick that you move about to power it? How are you gonna teach my toddler, who doesn’t understand much outside of the basics, to manage a powered vehicle? On top of that, it kind of just signified them completely giving up on her walking or being mobile by herself. Zariah can’t even sit up on her own, like what the actual hell?! The appointment for me, just felt like it was going from bad to worse. It was hard for me to take it as good news, but I kept it together. The physio and OT could see the shock on my face, and so they said they would email me details about the wheelchair for me to read after the appointment, and we moved on..
Anyways, my thoughts on the wheelchair aside, we spoke about loads of other medical things, like aqua therapy for Zariah, her upcoming botox (I’m going to write a blog about this soon, it’s another thing that I almost choked and died about when they mentioned it lol), and her hip X-Rays. Overall she’s doing fairly well. That appointment wasn’t a horrible one, and I kept it together through the shocks and (what felt like) blows, but I felt deflated, and was one poke away from losing my sh*t.
I took what the therapists said about one particular nursery though, and contacted them in a bid to find out more about what they offer in terms of sessions and vacancies. I called them whilst I was in the car, after dropping my daughter off to her dads. When I spoke to them they said they don’t offer round the year care and they are a nursery “school” so it’s still only 9am-3pm… I know it’s so minor, but have you ever been completely on edge, and the slightest even half irritation just drives you to breaking point? I cut the phone mid sentence and broke down crying in my car. It might sound sooo trivial, it’s really not enough to ruin someone’s day or anything like that, but literally, that was it for me. I cried and cried in my car. Sometimes it feels like everywhere you go, they’re gonna shut the door in your face. It gets depressing. All through last week I spent time looking for childminders, schools, and nurseries, and nothing. I just want to work! It sounds so crazy but sometimes it can be hard, and when I say sometimes I mean a lot of the time. A LOT of the time. I just want Zariah to have the same opportunities as everyone else to be honest. I mean I continued driving after my cry, picked myself up and got back to it, but yeah, it can be hard.
ANYWAYSSS, my week wasn’t all bad, and hopefully I’ll have some news to share with everyone soon, but that was my Monday guys. Hope everyone had a better week lol, and again, if anyone knows anyone who may know anyone, please share! I’ll keep you guys updated and thank you so much for reading x