It really sucks to have two children when you spend 25 mins patting a baby to sleep (because then you’ll be free to focus attention on your toddler) and 10 mins into the nap the toddler wakes the baby up. And then you snap at the toddler for doing this. And then you cry and your toddler says “Y’ok Mummy?”. And then you can’t get the baby back to sleep, so the baby is crying and the toddler wants to play ball, but you snap; “Well we can’t play ball now because YOU woke him up, now Mummy has to see to him and we can’t play together, well done”.
And then you cry some more, because this is just a stupid thing to say to your toddler and actually you’re just so damn tired and now have no idea what to do with the baby. He won’t sleep. But if you feed him he probably will fall asleep on you. Which means you definitely can’t do anything with the toddler and will spend at least 45 minutes telling the toddler to be quiet and play on their own and not wake the baby. But the toddler may go out into the hall and make banging noises and play with things they’re not supposed to and you’ll prioritise the baby’s sleep.
Annnnd breathe.
Two non-walkers are bloody hard work. Especially when one wakes up a lot at night and naps best in a sling when out and about. It is exhausting and upsetting and at times I have questioned my mental health! And I feel pathetic for this. How many woman have had two kids with this age gap? Or even three kids to look after or more. It feels like… It can’t really be this hard, can it?
I’m also amazed at how much guilt I feel when having a “moment” with one and not the other. It’s weird sharing love. Audrey was such a total focus for us and now she’s lost some of that focus because we’ve added a baby brother into the mix. I feel bad about it, even though in the long run everyone will be happier for it.
But in this heatwave it sucks to have a baby strapped to your front and another to push up one of Brighton’s many hills in the buggy.
It sucks when one needs to be awake and the other needs to be asleep (and they often get this the wrong way around).
Or in the middle of the night when the baby has (finally) slept for a decent stretch but the toddler wakes up crying.
There are so many reasons that dealing with these two feels like a giant challenge at the moment, an uphill climb (with one kid attached to you and the other pushed in a buggy!!), but what will it be like once we reach the top? Only time will tell, but I am banking on this struggle having a happy ending. And I’m pretty sure it will. Hey, just look at the way Rex looks at his big sister…
The other night I had half a glass of wine and cried because I love my daughter so much.
It was Friday night; Ted arrived home with fish and chips. We arrange a little portion for Audrey, stick Rex in the bumbo, get the music turned up and enjoy ourselves. After stuffing our faces we all retreat to the sofa and dance. And sing. And laugh.
In amongst this pretty fabulous (but not out of the ordinary) scene, I look at Audrey and start crying (with joy). She senses the tears immediately; “Y’ok Mummy?” she says, arms outstretched for a cuddle. “Better?” she asks, patting me on the back.
You see, I just get struck now and then by these scenes of happiness. Of our “normal” family life and the light that Audrey brings to it.
As we continue with our second parenting experience, it can feel strange to be out and about with my “typical” baby. I feel like I don’t have my “special needs mummy” badge on display, that no one knows that I have an extra special family with a different experience of how things go. How nothing should be taken for granted. Rex is 4 months old and seems so sturdy, almost ready to sit up, stand… Talk. Now I see clearly how hard Audrey has had to work at things that just happen for typical kids.
But somehow because of this extra chromosome Audrey has a magical way that just makes things special.
She does some classic sympathetic crying when other kids are upset (oh her famous bottom lip!).
She says “Thank you” when children steal toys from her.
She can get a smile out of some of the grumpiest looking people. And on that note…
She doesn’t judge. She waves and says hello to tramps, teenagers, people covered in tattoos, people who look unclean, the old, the young, the fat, the thin, men or women, black or white – Audrey just likes people and that makes me proud.
It’s also fabulous to witness how she can light up a doctor’s waiting room or bring out smiles to grumpy people on the bus or in a queue.
Her dance moves are a sight to behold.
Her cuddles melt into your body.
She just pretended to hurt both her feet so I would kiss them better.
She has started using “one more” as a way of getting me to continue playing/feed her biscuits/extend bedtime reading.
She regularly shuffles over to help Rex reach his toys.
There’s so much to say about Audrey’s wonderful nature (and her cheeky attitude), but I’ll leave it there for now. And please know that she is still trying lots of toddler stroppy tricks on me and is getting to be quite a handful these days. Still, I predict Rex’s toddler tantrums will be a bit harder to handle…
The first decent latch after the tongue snip. Note my messed up hand thanks to a dodgy canula.
Hello, a second post in one week? With two kids?!? I don’t know how I’ve managed it, but I have!
It’s National Breastfeeding Week apparently. Although I do find all these “National Potato Day” and “Dog Walker Awareness Month” type things baffling (OK, I made that last one up), I thought I’d write a little something about breastfeeding since I’ve now done it twice with two very different experiences.
Baby number one (aka Audrey!):
No labour, emergency C-Section, surprise Down’s Syndrome diagnosis – a scary start to motherhood. Looking back I didn’t have time to consider that breastfeeding might not work out since I’d had a C-Section (which I understand can cause problems; your body needs to know it has given birth) and apparently babies with DS can struggle to breastfeed.Neither of these things were at the front of my mind when, around (20?) hours after she was born, I was taken up to try her on the boob.
I love the way Ted remembers this moment. He sees it (rightfully so), through rose tinted spectacles – a memory of a mother falling in love with her baby at the instant she brought her to her breast. There was a lot going on that’s for sure, but I do remember that nerve-wracking moment I was wheeled up to visit my poorly baby to try to feed her… And out came the boob, on went the baby… It worked! It was pretty exciting, although before that point we’d spent a day expressing collustrum in an embarrassing tricky manoeuvre involving my boob squeezing and Ted “hoovering” it up into a syringe. It was a bizarre experience.
And as breasfeeding progressed (in uncomfortable plastic chairs, surrounded by beeping machines, with my baby attached to various machines by wires and tubes), we were “lucky” enough to be thoroughly supervised by a lactation consultant. One who advised we use nipple shields intially to help with Audrey’s latch. This seemed to really help and within 8 weeks we were no longer using them and Audrey was breasfed until 8 months.
I do remember the early stage being stressful and uncertain, but once we found our groove, I could leave the house confident I had a boob, so she would be fine for food. It helps packing light.
Our main issue with Audrey in those days was the reflux – the rivers of puke. They thought a floppy larynx probably caused it, but she couldn’t keep her feeds down and we were covered in milk sick all the time. She was changed (no exaggeration) at least 5 times a day.
And when it came to saying goodbye to the boob, I was reluctant to let it go, it was sad, but then, Audrey was happy with a bottle and literally couldn’t care less at the change. We took away boob, put her in a cot and in her own room – all in the same week and got her sleeping through the night after one night of “training” (Ted going in for comfort when she woke instead of me feeding her). Job done. “Booby finished” as Audrey would say.
Baby number two (Rex):
My memory erased any issues I may have had with Audrey and when Rex popped out, I just hoped he wasn’t a puker and stuck him on. It seemed simple… But my nipples did hurt a bit… Then they hurt some more… Then they cracked and bled, oh joy. I think it was 7 days in that I cried out in pain so much that we decided something had to be done and that the NHS appointment several weeks away was not going to help. We paid for a private lactation consultant to come and snip the posterior tongue-tie and finally feeds were no longer so painful that I lived in fear of each one, flinching as I put my newborn to my breast *shudders at the memory*.
Well meaning midwives had said he latch looked OK and that I should persevere, that the nipples would heal soon, that perhaps he just needed to grow a bit. I’m glad we didn’t give up, but I’m also glad I didn’t just ride it out because a few more days of pain and I would have bulk-bought the Aptimil and sacked off the boob forever!
As it is, breastfeeding Rex is on the one hand fantastic, convenient, bonding, amazing… On the other hand a pain (we think he has a cow’s milk intolerance so I can’t eat dairy!). The funny thing is, I vowed to combi-feed with Rex (as we were eventually made to “top” Audrey up with formula to give her more calories and the bottle turned out to give us some independence), but because we think he’s intolerant, we can only give him prescribed formula… But I can only get the prescription by testing his intolerance by introducing dairy… And I can’t face him being a shit, even if it is just for one night. He basically writhes around with wind and wakes a lot. Which he does anyway, but less so when I’m not touching dairy. It’s frustrating to watch, hideous to wake up to and just a really exhausting aspect of having a baby. This time around I am thinking about switching to formula at 6 months and I cannot wait for Rex to be eating solids. I need him to sit up, get his wind out and sleep more!! Please!!
Anyway, ranting aside, breastfeeding is amazing if you can do it. I look down at him drinking from my body and I can’t quite believe it, it’s pretty magical. However it is also really hard for some (lots of) people and no one should take it for granted. I could so easily be formula feeding right now if we hadn’t paid privately to get his tongue snipped, I didn’t have the strength to keep going in pain, on the promise of midwives that it would get easier with time. The funny thing about time is… yes, 6 weeks is a speck in the scheme of a lifetime, but it’s a bloody long time when you have to keep a human alive by doing something scream-out-loud-painful about 10 times a day.
So let’s celebrate #nationalbreastfeedingweek but also not forget those who wanted to do it but couldn’t because it was bloody hard.
It’s early to acknowledge this (given we only have 3 months of experience with a “typical” child), but I’ve started thinking about how different this journey is going to be in comparison to our experience with Audrey.
We’ve joked our house is Audrey-proof, but not child-proof. Audrey picks up things and hands them to us… “Daddy’s” she says, passing me some headphones, “Mummy’s juice” she says proudly, pointing at my glass of drink (not touching it). She is gentle, she is careful and she can barely reach/climb/have the strength to pull things over. Rex will be very different and it’s scaring me already.
So funny to feel like parenting a “typical” baby is a pain in the bum. “He’s so sturdy!” we exclaim, with worried looks. “He’ll be an early walker” people tell us, and we exchange terrified glances. We are used to slow-mo growth; example – Rex is nearly 4 months old, he is wearing age 3-6 months (stands to reason) and Audrey wore these clothes around 10 months! It really puts into perspective how small she was. How small she is.
And with that we have an almost 3 year old who can’t walk. She started bum-shuffling at 18 months, all that time we had a “baby”. Rex is going to seem like a fast-forward monster child! I already call him chunk and he’s just a reasonable size, poor kid.
I say “poor kid”, but he’s still a real challenge, so it’s “poor us” really. He wakes a lot, still only sleeps well in the sling for daytime naps and can be generally unhappy just hanging out on his play mat. I am really banking on solids and sitting up changing him, I think he would prefer an upright view and he would enjoy some food, but God help us if that makes no difference! Eek.
I still recognise that people must think it’s nuts that I talk about our experience with Audrey as easy (Down’s Syndrome, oxygen canisters, tests and appointments and worries about her future…), but that Rex is hard. But no one has a baby expecting that much of your time together is stressful and he can make things stressful just being so whiny and needy.
That aside, he is beautiful and he loves a laugh – I can already see that his sister is going to be such a great friend to him- he looks at her with love already and she makes him smile. They are fabulous children and one day Rexy, one day we will look back and laugh about how difficult you were!
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.
Audrey has successfully walked on her own with a walker (both a standard plastic thing at home and a fancy rollater at conductive education)!
Yes, I cut straight to the juicy detail there. It feels so exciting and terrifying to think she might be close to walking.
When Audrey was a baby, I looked at the parameters for children with DS walking (from typical age to 5 the book said) and I thought; “well she will walk at typical age or not much later”, because I wanted to be positive, but also I believed in Audrey. I knew she was the greatest kid with Down’s Syndrome I’d ever known, I was so sure that with lots of help she could hit all those milestones as early as possible.
The reality is, even if we had been super hot on physio and/or lots of crazy gadgets for walking/improving muscle tone, Audrey would still be delayed. She has low muscle tone that is hard to deny. Plus she chose to bottom shuffle rather than crawl – this is practically walking, she has her hands free. So in her eyes, no rush!
As I look at this year, the year she will possibly walk independently, I feel a mixture of emotions. I’ve been so desperate to see her run around like her peers. She misses out on park time, outdoor play and even soft play (you need to be able to climb). However I’m worried about how it will change things – eyes needed in the back of my head? A child that’s no longer happy in the buggy or sitting in a high chair? I know this is standard progression and something mums of typical children have dealt with already by 14 months (is that the average walking age??), but Audrey is 3 in July and I still haven’t had to worry about these things.
She is just starting to realise that Rex is taking up mummy time, she is calling out for me a lot, following me around and is trickier to get settled at night time. Audrey is really growing up. I love being her number 1, but it’s so hard when I can’t devote all my time to her. I hope her improvement in walking, standing and climbing will help give her some independence and help her to need me less, although I suspect I’m in for many months of struggling with how to split my time between demand breastfed baby and demanding toddler!
A friend came to visit Rex for the first time the other day. I was explaining how tough we were finding number two, how his nights were getting better, but still appalling, that he was so rarely chilled and happy, that breastfeeding had been a struggle, that the labour wasn’t great, recovery was a shock, that I never wanted to do this again… My usual rant!
Now, I know this sounds like a depressive visit, but we had lunch and a laugh (promise) and Rex slept on her for over an hour and then fed and slept on me for over an hour, so he appeared to be quite easy.
Anyway, this friend has two grown up children and had easy births, easy breastfeeding experiences, easy babies… She maintains the teenage years are the hardest, so god help us!
Since her visit, something she said has stayed with me. It was along the lines of; “Well I remember visiting you after you had had Audrey and just thinking how amazingly you were coping – because you had a lot to deal with; the Down’s Syndrome, the oxygen, the emergency c-section… And you were taking it all in your stride. Now you have a more common situation and you’re freaking out! This is dealing with a newborn, you’ve handled a newborn with lots of other challenges, this should be the easy bit!” And I guess she’s right. We’ve forgetten what we went through; having a baby in the special care baby unit for 3 weeks and bringing her home attached to an oxygen canister for 6 months, that’s not a standard start. But I know most will consider the shock of a baby with Down’s Syndrome and how awful that must have been. I don’t want to trivialise this, it was like a grieving process, it was rough, but somewhere down the line Audrey became more than Down’s Syndrome. She became our daughter, the one we planned for and made with love and that period of confusion has become so insignificant in the scheme of things.
Having Audrey, learning from her, knowing her, it outweighs the initial upset a billion times over. As a cheesy social media motivational quote would say: You have to experience the dark to appreciate the light.
And so we come back to Rex; we’re in a dark time and hopefully we’ll appreciate him more once we get out into the light?!
In the meantime, I’ll try to remember this is what millions of people are experiencing right now – sleep deprivation and an unsettled baby. It will get better… But please let that be soon.
Rex is finally 7 weeks old. That magical milestone you’re shooting for… “Everything gets better after 6 weeks” they say. We shall see. I didn’t expect an instant change, but I hoped!
Audrey had an audiology appointment last week, terrible timing as she is about as snotty as you could possibly be. So it wasn’t very productive.
She’s been on good form lately though and is singing lots of songs really well just on her own.
We made it to a music class (something which had scared me), but Rex slept the whole time and I even managed to pick up Audrey for the Hokey Cokey with him strapped to my front. And we went to the group for people with pre-school age kids with Down’s Syndrome, which was great.
Rex is stretching some gaps between feeds out a little, but he’s still unsettled and suffering with wind. I feel he will be an expensive child as we keep buying things to fix the issues… The latest is a vibrating chair. He is not bothered by it, it doesn’t seem to make him any happier than lying still on a mat does. We’ve also got Infacol, a Sleepyhead (he’s not soothed by this either) and cranial osteopath appointments. Of course I want him “fixed” so I can sleep, but it would also be a nicer existence for him if he was happier.
I’m currently sat in my dressing gown with Rex asleep on me and Audrey shuffling about, entertaining herself. I’ve been trapped for 2 hours. I didn’t expect this, but after about 40 mins he woke up in pain and I spent some time massaging his tummy and lifting his legs before shushing and cuddling unti he fell asleep again. I’m regretting telling Ted I didn’t need anything when he left for work. I’ve finished my water and I’m crazy thirsty. I know what you’re thinking – just get up and get water! But he is asleep!!
Fast forward to a few days on and I’m now pacing the house with Rex in the sling. Audrey is again, entertaining herself, shouting various things (Alice! Oh look! Jump! Book!) which makes the sleepy man twitch from time to time. Being out and about is in some ways easier, because he sleeps better when I’ve got a genuine march on and you can sort two naps if you go somewhere , feed and then come home. Of course it’s insane to pace the house with him in a sling, but it’s spitting with rain and Audrey isn’t dressed yet. There’s only so much I can get done sometimes.
There’s just so much about this time that is a shame. Ignoring my daughter (or at least not giving her the level of attention I would like), doing lots of things to the soundtrack of Rex crying (because he has such a short window for happily being awake), only really enjoying Rex’s company for tiny periods of the day because he’s just so unsettled… God I sound like a broken record.
I just find all that newborn banter that people on the bus/in coffee shops give me hilarious… “They grow up too fast!”, “Enjoy this time while you can”, “Newborns always make me broody!” – I’d just like to say, he can never grow up fast enough at this stage, I cannot wait to get passed this and I will not be made broody by a newborn ever again.
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!
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!!
awesomeaudreyemily 