Argh this is hard

Now I’m in a better place (in my mind, I haven’t moved to Barbados), I feel like I can better explain the last few months.

I’m in such a good place, that I can’t remember the full extent of how bad it was, except when I read my first post again.

Coby is 10 and half months. The current situation is he is with the foster carers that he initially went to. They’re still actively looking for adoptive parents, however I have asked them to stop looking after Christmas as I would rather he settled in a long-term foster care rather than moving around a lot. That and the fact that now things have settled, this plan is currently working for everyone involved and Coby being adopted, I don’t actually think I could cope with. My Mam visits him on a weekly basis and at the moment me, Seb and Isaac visit when we can every couple of weeks. I would hope that this can continue when he moves care. His carers are fantastic and they let us go whenever we want but obviously I don’t want to be too intrusive and selfish about it.

Isaac knows Coby is his brother and that he lives with a different family. He loves going to visit and gives him kisses, then gets bored and plays on his Dad’s phone, cause you know, he’s 4 and not a lot really affects him. He sometimes gets slightly confused and say’s that the foster carer is Coby’s Mam – I haven’t corrected him because it’s too confusing for him to process and realistically what is a Mam. His carer is closer than I am to the role, so I accept that.

Coby won’t stay where he is forever, there has been talk of training someone to become his long term carer who can meet his needs, but for now he’s doing fantastic where he is and we take each day as it comes.

He’s doing really well – we’ve been told he’s a few months behind and that the gap will widen, but he’s surpassed how far I personally thought he would come already. He has frequent hearing and eye tests and all are fine so far. He has just started to sit up unaided, although he’s a big fan of throwing himself backwards! He’s always been really floppy on his legs however he’s just started to slightly push on them when you hold him up, which is amazing. He’s having an x ray on his back to check his spine just in case.

In the last few months, I’ve come across a few stories of children with a chromosome 19 deletion – not the same as Coby’s but I’m guessing they would be slightly similar, although no one can say. It’s bizarre how many chromosome and gene issues there are out there and how oblivious I was to all of them. I’d never even heard of a chromosome 19 deletion of any of the syndromes that come with it. It’s been helpful to get an insight, but it’s also confirmed some of my fears, which is on the one hand reassuring from the point of view of the decision we made, but on the other hand obviously completely devastating for Coby and us. At first my worst fears were him not walking and talking, but there’s a much bigger impact. Children with some of these deletions can grow extra-large, in all ways, making them difficult to handle. Coby was tiny when born but is turning out to be a big baby and I’m wondering if this is a sign. The ‘moderate’ delays we’ve heard about are also a lot more significant than I originally thought. For example, there are cases of 16 year olds with the mental capacity of an 8 year old, with the gap widening as they get older. 8 year olds as a whole maybe aren’t that difficult – but throw in behavioural problems (i.e. aggression), the fact he could be 6ft and 15 stone – and this is a different issue.

I’ve obviously thought about it a lot, and I’ve covered every possibility in my mind. Some days even still it’s the only thing I can think about. When I visit, I imagine just taking him home and getting on with it and everything being fine. I sometimes go back through old posts and my original blog post to remind myself of my reasons. We wouldn’t come home and be happy families, it still would break us. I’m too devastated, I’m too angry, I’ve still got every ‘flaw’ that was pointed out to me etched in my mind and it’s not fair for me to look at Coby and have those feelings. They’re not directed at him, but he’s the reminder and it’s not fair. I also look at him now and think how bloody gorgeous, how clever he is for how far he’s come, and how completely in love with him I am. And that’s how I know I did the right thing.

I’m not sure if things would be different if Coby had been an only child. I know I can’t put the responsibly of Coby on Isaac though and that’s what would happen eventually. He needs specialist care and just because I’m his Mam doesn’t automatically make me qualified. One of the reasons I put myself out there so much is because this year has made me realise that every single person has shit – and I don’t mean daft shit, I mean absolutely huge problems that they’re either going through or have overcome and it’s made me so much more understanding. In particular towards parents. There’s this notion that once you become a parent, you become equipped to have and be everything that child could ever want or need – and it’s a total load of bollocks. We don’t all morph into mother Theresa the minute a baby pops out, there’s no manual, there’s actually no real support. I know people who think that because you chose to have a baby you therefore chose to deal with whatever comes with having that baby. Well no actually, I didn’t sign up for this. There I said it. I did not sign up for a baby with immense disabilities and I’m angry. What is this everything happens for a reason bollocks. What is the reason for this? There’s no happy ending in this, and there never could be. Just like there isn’t for many families, particularly families who have lost their children. Its just sad and its just shit and we all need each other.

I’ve had stick for this, but actually I don’t remember much of that, what I do remember is the huge amount of support, mainly from other Mums who I thought would be the last people on earth to be supportive. But now I know it’s because were all in this together and its hard. And deep down I know there are people who couldn’t cope with a baby with these kinds of issues either, so I thank you from the bottom of my heart for understanding. I would also stress that my door is so open for anyone who wants to talk – there’s nothing that could be said that could be any worse than some of things and I’ve done and said and I know you need an outlet.

And now I have a new struggle that comes with being pregnant – guilt. Christ the guilt is overwhelming. Knowing that this baby is ‘ok’. I haven’t bought clothes sizes past 0-3 because I cant imagine needing them – as if she’s going to disappear again like Coby did. I haven’t bought a high chair in case she doesn’t need it – Coby needs a specialist one. Its just a whole new world of crap. But I’m actually ok to say I’m really excited and happy for this baby. I know there’s a burning question – she wasn’t an accident, she was very much wanted in a week of madness where we thought it would make everything better (a bit like the puppy that came and went). She won’t make everything better by a long stretch, but I promised Isaac a sibling and I’m going to bloody well deliver on that promise. And I hope that her, Isaac and Coby can work all this out together when they’re older and won’t ever feel alone.

I’m a Mam of 3 beautiful, special babies, no matter how unconventional or hard to explain the story is. (imagine having this conversation with other mums in the playground – I cant lie either, it usually goes ‘oh I’ve got 2, Coby was born with a chromosome deletion and he’s in specialist foster care, but he’s happy it’s all good” – like wtf do you say to that, I really need to stop making it awkward!)

We're all going to be alright.

Isaac, Coby and Emmie, you’re all so so loved xxxxxxx