Oops. Audrey turned 3 and I forgot to blog about it. Such is the foggy brain of a sleep-deprived mother of two.
She has had several rounds of “Happy birthday”, at home, Whoopsadaisy, nursery, over the phone from Nanny, at her picnic party in the park… So the happy birthday song has joined her repartoire and I hear it at least once a day. Another brilliant new favourite is “We Are the Champions” – we watched a Jimmy Fallon clip of lots of stars singing it and now Audrey sings the chorus a lot, much to our amusement.
Anyway, Audrey had a fabulous birthday. And here are some pictures to prove it… Oh and Rex tried some solids for the first time on her birthday, he was unsure!
With Mary and Claire, my bestfriends and bridesmaids
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.
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.
Last night Audrey wouldn’t settle on her own, which is reasonably rare and after a cuddle and sing song with Daddy, the crying started again. So it was my turn to have a go.
She cuddled me with one arm tucked around me, with her other hand on my hand, interweaving fingers. I told her we were holding hands and she whisper-giggled with me at the fun we were having in this dimly lit room. I rocked in the chair silently and we gazed at each other whilst playing with our hands. A moment of perfection. I could feel our love. Her face – just the most beautiful little girl I’ve ever seen, her gaze fully locked on my mine, looking very much like a child who is not sleepy and will not be rocked to sleep!
Yes, it crosses your mind: er, excuse me miss, we had just started a new series on Netflix, I was about to put my feet up with a glass of milk (a pregnancy heartburn must)… But at that moment I just felt such bliss at being there for her. Being her mother.
I’m sure I bang on about this in every post, but it’s a heightened feeling when you’ve had such negative thoughts about your child and your imagined relationship in those early days. It scares me to think that a “syndrome” label made me question the love and connection I would have for my daughter, but it did.
In fact, I’ve just recently been filmed sharing thoughts and feelings after diagnosis for a short film that will hopefully help new parents. And on an email calling for more contributors, a mother with a grown up son with Down Syndrome questioned her involvement – she wouldn’t want him to see her talking negatively about his life. Which I completely understand. However, I really hope to explain to Audrey one day that the reason I’ve shared so much online (including some pretty upsetting thoughts and feelings) is that I want society to move forward and I want to take as much of the negativity away from other parents as I can. And I want her to know that it’s because of her, because of her fabulousness, that I feel so strongly about banging this drum and changing perceptions.
Of course, in an ideal world I want someone to receive the diagnosis and think; ‘Who cares?’, but I appreciate it won’t be that simple. But how about, after the initial shock/upset/confusion, you quite quickly move forward by thinking about a family you saw online…? A mother who wrote about love, beauty and fun… She showed that your life with your little one might just be how you had expected things to be pre-diagnosis; singing songs together, reading books and cuddling before bedtime, sharing in a peekaboo joke… The path is a smaller deviation from the original than you might think and the overriding fact that should help take the negativity away is: you are their parent and you will love one another no matter what life throws at you.
I’m thinking that’s parenthood as standard though, isn’t it?
I’m writing this before our little man arrives (I suspect my blogging time might be a little reduced following his birth..?).
A second pregnancy is definitely a different beast. The first time around you can truly revel in being ‘with child’. When maternity leave hits, (all going well timing wise), you can have weeks to nap, read, chill out, enjoy decaf coffees…
Audrey is a July baby. I had at least 5 weeks before she arrived in sunny Brighton, just enjoying some ‘me time’ and falling asleep regularly to my hypnobirthing CD.
This time around, I finished work with 4 weeks until due date, I fear he’ll be early (we’re week 38 now), but I only get 2 days a week of “me time” anyway (whilst Audrey is at nursery) so it’s really not the same. I don’t feel like I have blank weeks ahead that I can fill with baby grow folding and preparing for birth. I have our usual routine, plus tiredness, plus heartburn and I’m waking in the night for all manner of reasons (Audrey being one of those from time to time, but being uncomfortable/needing a pee/leg cramp etc etc also involved).
I have to lift Audrey a lot because, well, she can’t walk. And I have to walk around pushing her in the buggy because we don’t have a car and that’s how we get about, with a bit of bus travel thrown in. It’s not a big deal, but it definitely makes me tired. And she’s tiring because she’s a curious child who wants cuddles or books or snacks etc. Or me sat on the floor with her or her sat on the sofa with me. (She’s kinda bossy).
I have several fears this time around (last time I think I put it all off and didn’t feel like a baby was really coming, this time I can’t deny it!)…
– Exhaustion is probably number one, because I love and need sleep and I cannot see how I’m going to get enough with two kids to look after.
– Labour is also up there; I didn’t go into labour with Audrey, she stopped moving and I had an emergency C-section. I’m happily trying for a ‘natural’ birth this time (with no objections to a few drugs!), but the unknown is still strange and scary.
– Doing enough: how on earth can I breastfeed, entertain, cuddle, feed, clean, rest, leave the house… With 2?!? Eek.
– Just being a good mother and having enough love to give to a second child that is following in the footsteps of one of the most loved children on the planet.
At the same time, I know it will all be worth it to grow into a family of four. I also realise a lot of people have had two or more children and have survived to tell the tale.
awesomeaudreyemily 