Siblings

Everything happening right now

~ Vickywoo ~ Leave a comment

Blogging is actually pretty hard for me at the moment. Not least because for the majority of the day I have a baby strapped to me or feeding on me, but mostly because I am dead on my feet with a foggy brain but filled with things to say. Too much to get out and no time to devote to writing about it.

I want to attempt to tell you what it’s like to have a newborn and almost 3-year-old. Except I can’t tell you exactly what it’s like because it’s different for everyone. For every person that says “oh my God yes Rex sounds exactly like my first child – I had to build a fortress of cushions so that I could sleep with the baby propped on me at night!” there’s another person who says having two is a  breeze; the second baby just slept all the time. That second group of people are how we ended up in this mess.

I want to talk about Audrey and how much she has changed. She is literally gaining new skills every day, from crawling and climbing, to more words and confident interaction with her peers. I want to boast about her, talk about how proud we are… But also moan because she’s being stroppy and playing games to get mummy attention.

I want to moan about giving up dairy, because I bloody love cheese and milkshakes and cake and… but I also want to brag about how much it’s helped Rex to settle. He’s a different baby. Oh and even with a dramatic diet change I can find a way to eat crap – Oreos are dairy-free you see and so are dodgy chewy sweets and marshmallows.

And of course Rex settling means I want to finally say – he’s gorgeous! He’s beautiful! Still hard work (babies are), but now we get joy from him and I can see the light at the end of this tunnel – it no longer seems so far. We need to get him sleeping independently, but we’ll crack it eventually.

I want to moan about how much babies age you- I’ve always felt and looked a bit younger than I am. People would generally be surprised by my age. I am definitely 37 now. I have two kids and the dark eye circles to prove it. Eek.

And the mummy guilt, oh the guilt! Maybe I will save that for another post…

So much to cover, all of which I planned to be several long blog posts of my ramblings, but there you have it, I’ve told you in one for now. And I’ve done it all with a baby sleeping in my arms, who has unfortunately woken up because my leg was going dead and I had to move it. Bloody kids.

But wow, Rex is 3 months old!

The Calm After the Storm?

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Newborns: wow.

Well little Rex arrived and turned me into a hormonal exhausted mess. 

I couldn’t handle not just the level of care he required, but also the way it took me away from activities with Audrey. Suddenly I can’t cuddle her on demand or sit with her playing all afternoon. I know she won’t remember, but I find it heart wrenching. I love her so much. I love cuddling her.

Having a second child hasn’t just rocked our world in terms of how tiring/stressful it is, it’s made me realise that much of what we went through having Audrey wasn’t about her having Down’s Syndrome. We always questioned it – we couldn’t decide if at the beginning we were reeling from the shock of the c-section or of her diagnosis. We’d never had a baby, so we didn’t know what it felt like, how you bond, how you love them. Film and TV would have you believe the baby comes out and is placed on the mother to immediate love and bliss. Both parents are instantly in love.

This is not our experience. Feelings for Audrey and Rex in the first weeks were quite functional. With both I felt quite shocked just to have a human suddenly on me – it’s quite something to get your head around – bump to baby. There’s relief that they are alive and then you just sort of numbly get on with things in a fog of “what on earth has happened??”.

The love part… Well we’ve found it takes time. You get to know them, their face, their smell. The bond grows slowly and then, when they become a little person who interacts and really shows some personality, wow, the love starts to peak – it’s like you’ve fallen for them after a romance.

It’s no secret I’m not a fan of the newborn stage. They are basically still a parasite but now live outside your body. You do everything for them and what do they give back? Ok, they are cute and cuddly, but they cry a lot. And poo a lot. They puke on you. They wake you up. And if you’re really lucky they might make your nipples bleed. Lovely.

But then they smile for the first time (Rex did last week, hurrah!) and they see you more and coo and almost play… And of course (please achieve this soon Rex!), they go longer between feeds. 

So of course I know this love grows and it gets better and better, but oh how hard it is to remember that with an unsettled baby to contend with. Every week gets better, but it’s still hard. Parenting is hard work.

I still remember chatting to a friend who doesn’t have kids, about how she’d like a nanny to just do all the hard stuff – the night feeds etc. And we had Audrey and I told her she wouldn’t feel like that once she had a baby – yes it’s tough losing out on sleep, but ultimately you want to be the one feeding your baby. It’s all part of how your bond grows. Going through the tough stuff together gets you to the fun part! And now I have to remind myself of that when Rex is wide awake for over an hour at 3am or when he’s screaming in pain from wind whilst on my shoulder. I need to do all this, no one else can – what’s the point of having kids? This is my job, my journey and at the end there is a big reward. We are already reaping the benefits with Audrey. 

Just think what these two crackers will be like together as best friends!

  
    
 

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

~ Vickywoo ~ 1 Comment

  
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!!

World Down Syndrome Day 2016

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Here we are again, our third World Down Syndrome Day. I feel like I’m always banging the DS awareness drum, I really hope it’s not a bore to people.

This time around we’ve got tiny Rex with us, depriving me of sleep and making me a little bit insane (well the hormones post-pregnancy are). So it’s a crazy time. But one thing Rex has done by crashing into our world and turning things upside down; is shine a light on just how wonderful his sister is. I’m not saying him being difficult makes us realise how good Audrey is… Well… I guess I am a bit… But I know he doesn’t mean to, he’s just being a demanding newborn, wanting to feed and to sleep in our arms, crying too much and pooping and weeing at the wrong time… But in amongst the stress and tiring times, we have a beautiful little girl who is unaffected by the chaos – but has the sensitivity to ask if we (mostly Rex and I, the criers!) are ok. She’s offering cuddles and (heartbreakingly), saying and signing “Mummy sad”. She is playing happily by herself, casually saying “Hi Rex” when we bring him into the room, offering him cuddles when he cries. Her emotional intelligence is incredible.

And so, on this day, I celebrate Audrey for being our daughter, someone we love now more than we ever thought possible, who happens to have Down’s Syndrome. And if you let that define her or you make a judgement about what she might be like based on this syndrome, you will be way off the mark. Because I know there are many who are having scans and taking the screening test to find out their chances of a baby with Down’s Syndrome… And some are doing this to “prepare” (they have no intention of aborting), but want to know what’s coming. But many are geared up for aborting if the chances are high – they are thinking they couldn’t handle a disabled child. They may even be worrying about all the difficulties  they’ll face. They will probably be wondering what kind of life can someone have with a learning disability? Some may even say that livng with a disability; “well that’s no life at all”. Of course I can’t guarantee things won’t be hard, that their won’t be health issues and struggles, but I can tell you about our daughter with Down’s Syndrome. I can tell you that our experience has been so amazing and that her life – wow, she loves it to the max. She’s having a great time and we love Audrey more and more each day. Now that Rex is here, we look at her as a big sister and we are so proud and excited by the prospect of them being friends forever. We are also thinking about how much she will teach him. 

Happy World Down Syndrome Day everyone! 

  

It’s just a phase (we hope!)

~ Vickywoo ~ 5 Comments

  
So here we are. I’m a mother of 2, we’re a family of 4, Audrey is a big sister.
Such a big leap from being a tired woman with a bump and a non-toddling toddler – to being a tired woman with a newborn and non-toddling toddler! Thank goodness for paternity leave – my beloved husband has never been so needed!

So far, I feel like this time around is much harder than my experience with Audrey. I realise that it’s totally crazy sounding to say a c-section, unexpected Down’s Syndrome diagnosis and three weeks in a special care baby unit is easier than a vaginal birth and a healthy baby being at home within 48 hours. I guess it’s true what they say about childbirth fading from memory.

The main difference is that Audrey was a sleeper – I had to set alarms to feed her. Rex doesn’t have that problem. He is getting better (we’ve had a couple of 3 hour breaks between feeds – a miracle!), but unfortunately his keen feeding nature in the early days means I’m currently in cracked nipple hell! Again, something Audrey didn’t put me through…

But don’t get me wrong, Rex is delicious. I still appreciate his peach fuzz head and big baby blue eyes. He’s another perfect tiny human we made, but wow, his sister didn’t prepare us for a tricky baby! In fact, she tricked us into thinking babies were easy!

Audrey has been an absolute angel. She can say and sign Rex, she regularly says “Hi Rex!” And asks “You ok?” If he is crying (and to me too if I’m crying – like I said, I’m a hormonal wreck at the moment). She is so loving, gentle and sympathetic; she makes me cry just by being her, I’m bursting with pride and I miss her! I’m so often feeding and tending to Rex, Audrey time has diminished. But it’s a great chance for Daddy to get some Audrey time of course.

We are in the middle of a difficult stage – only 10 days in, it’s quite a shock to have a newborn in the mix. Will keep you posted, but I know things get better and I have to keep reminding myself “it’s just a phase…”

   
 

Welcome baby Rex!

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Eek, I don’t have time to write a blog post (although you could say I have more time, given my awake time hours!!).

But I have to announce the birth of Audrey’s baby brother, Rex Graeme. Born 26th February 2016, weighing 7lb 13oz.

Please excuse the still in theatre shots!

It was a long labour, but we avoided a c-section, which is the main thing.

Currently exhausted, he’s 4 days old and doesn’t like sleeping as much as his sister did at this age. Audrey has been an absolute star, she keeps asking me “You ok?”. I am an emotional, hormonal wreck and I miss my Audrey time! Daddy has been wonderful as always. 

We are a family of 4 and are working hard to get through these tough early days to the fun stuff!