It was the best of times, it was the worst of times…

  
Look at us. A mother and son cuddling, such bliss. But of course this pic tells little of the realities of having a newborn. I don’t want this to be a negative rant, but I do want to share what we are going through right now… I mean, this blog may be filled with positive Audrey stories, but it’s really about our life and how having a child with DS doesn’t make our life that different to other family’s. So although I share a lot of positivity, it’s not because I’m sugar coating, she’s a joy.

Where we are now: Rex is 1 month old. He only sleeps in the sling (preferably whilst someone is pacing) or on us with some additional pats and jiggles as required. He likes to feed every 2-3 hours and he doesn’t like to lie still on his own for longer than about 5 minutes. He is currently a very difficult newborn and I am soldiering on with breastfeeding despite the early part being incredibly hard. In fact, it’s still hard. But they say it takes 6 weeks to establish breasfeeding, so in a couple of weeks we will hopefully be in a better place. I live in hope.

I recognise that each stage with a baby is a tiny speck of time in context of our lives – one day this kid will be festering in his teenage bedroom and I’ll be dragging him out of bed. But right now, I am dealing with the hardest thing I’ve ever had to do… and I’ve dealt with a surprise Down’s Syndrome diagnosis and my father dying… But this, this is another level – it’s intense 24 hour work. 

Of course Ted is a massive help – he is now in charge of Audrey am and pm before and after his full working day and all day on days off. Because very often, it’s only boob that will work for Rex. And that in itself is so hard. I’m striving to make breasfeeding work; to give him the best start in life etc,, increase our bonding, secure his immunity to various things… That’s all great, but oh the commitment to being there for him every 2-3 hours, when it can take an hour to feed and then settle him! And when he can’t be put down – where is the respite for me? I use that word – because with a “disabled” child you are given a lot of leaflets about support etc and respite care comes up a lot. Hey, maybe in the future Audrey will be a handful and we’ll want that option, but so far, no need. A newborn however – can they send over a respite carer for us now?? 

I guess I also feel robbed. We had a rough start with Audrey, I thought our “typical” baby experience would involve more blissful bonding and time to appreciate the life we created, no grieving, no confusion or worries, lots of gazing at him lovingly. But Rex isn’t letting us enjoy him. He is too needy for gazing. I’m genuinely terrified about how we “crack” the sleeping issue. How will he learn to sleep lying alone and still, when he currently sleeps upright and moving? Even on me in bed I spend much of the time patting him when he stirs (so often my sleep time isn’t real sleep time, it’s like being on watch for enemy attacks and dosing in between).

As I type this post I am pacing the house with Rex in the sling. Audrey is watching kids’ TV with her mouth open. If I sit down to rest, Rex starts grizzling and I have to get up and pace again. I’m exhausted, emotional and can only see a long stretch of this ahead of me…  I’m partly documenting this so that in a year or so (whenever the crazy thought arises) I can make a sensible decision about getting broody again; i.e; two is enough! Don’t let me do this again, please!!

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