My daughter 

I have a 3 year old daughter. She likes to play with my hair whilst she sucks her thumb.

She loves music and dancing.

She adores books.

She gives epic cuddles.

She likes watching Mr Tumble and Justin Bieber videos.

She reenacts ‘circle time’ from nursery at home with her toys.

She loves fruit.

Over-used phrases since she arrived include “I love you”, “You are so pretty”, “You are so clever”, “You make Mummy happy” and “Cuddles!”.

She is everything I ever dreamt my little girl would be and much more. As each day passes I see us together in the future; singing, shopping, scoffing popcorn at the cinema… All these simple things fill me with joy and excitement. My heart swells when I hear her call me “Mummy”.

…And I will just add that I still have to suffer the obligatory tantrums over presenting her with rice cakes instead of breadsticks or asking her to put her jacket on – it’s not all plain sailing.

But oh she is fabulous… Entertaining, amusing, cute as can be and incredibly emotionally intelligent (if she so much as sniffs a crack of upset in my voice she comes over “Y’ok Mummy?” – head tilted to one side in concern, offering a cuddle).

When we go out, I feel like I am proudly presenting her to the world; “Behold! My beautiful offspring!”.

The other night I put her to bed and laid down with my face next to her’s and said “I love you” and she stroked my face and said “I love you” right back. It was pure magic.

I fall more and more in love with her everyday.

Nothing out of the ordinary here, I assume many mums will read this and think, “Yes, sounds like a standard mother-daughter love.” And it is.

It’s just my daughter has Down’s Syndrome. So when she was born, someone gave me some news and some literature and it was like putting a sticker on her that said “This one is going to be a little bit rubbish and not meet your expectations”.

 

Thankfully that was bollocks.

This post is also on Selfish Mother; http://www.selfishmother.com/mother-daughter-love

The Joy of Rex


Poor Rex came into this world with Audrey’s footsteps (or bum-shuffle tunnel) to follow in. 

We have been hard on him because he’s been hard on us. But at the end of the day (although the day never seems to end with him!), he’s just a baby. Granted, a more difficult one, but still…

People tell us he’s very cute. He’s a pretty boy. What a lovely baby. We say “Yeah he’s alright”.

It is hard to enjoy a baby that is unsettled and waking a lot a night. Sleep depravation has made me snappy and crazy at times. I want to adore him the way I adore Audrey, but I think that’s going to take some time.

Rex is almost 6 months old and we have come a lot way since the “sleeping on me” days, even if we haven’t quite reached the peak of happiness we are hoping for… Anyway, I can say lots of positive things about him, because in truth, he is a bonnie baby (as well as a mighty mighty sh*tbag).

1. He loves a laugh. When he has slept and fed, he is generally quite a happy soul and Rex thinks peekaboo, sneezes, bouncing balls and the door bouncer are lots of fun.

2. He adores his sister. He gazes at Audrey with love and finds her very entertaining, it’s such a lovely thing to see developing.

3. He is very curious about the world. He grabs everything and anything and he loves to explore. 

4. He has amazing hair. Like a Muppet.

5. He has excellent leg chunk.

6. He has soft milky white skin like marshmallow. 

7. He has my eyelashes (as does Audrey) – these will serve him well.

We love you Rex, you little monster! But you had better sleep better soon!

Walk the walk

As you’ll have seen, I post a lot of positive stories about Audrey. It’s hard not to. But I want to be honest about something I am finding difficult; the fact that she can’t walk.

When she was born, one of the many things we were prepped for was the difference in when a typical child walks and when a child with DS does, I was pretty confident Audrey wouldn’t be too far behind her peers. I expected she’d be up and running around 2.

Well, we’ve passed her third birthday now and she hasn’t nailed it yet and let me tell you why that sucks…

I feel like she has lost out on a period of her childhood; outdoor activities, soft play, dancing, exploring and running after friends. I know this will come, but her friends have had this kind of childhood since they were 12? 14? 16? 18? months (I’m not even 100% sure when!).

In many ways she’s an easier child for me as a non-walker (less so now we have Rex), although I don’t want her to walk to help me out. I feel like she is being robbed of a typical childhood. It makes her officially “different”. Yes I know she is different, but at this age, kids are just kids. They play with each other at mixed ages and mixed abilities, but not being able walk puts her way behind.

My husband is a bit more laid back about it and I wish I could feel the same. Ultimately I do have to be patient, I can’t let frustration take over because that’s not going to help, but her almost 6 month old brother is rolling and pivoting and getting into things… he will be crawling soon and before we know it – walking too. It seems so crazy how quickly he is getting there and how slowly Audrey is.

But, hey, as I’ve said before, it is best to focus on what your child can do, rather than what they can’t and Audrey’s communication skills have excelled beyond our expectations. She sings so many songs (from Old Macdonald to Queen’s We Are the Champions!), she “reads” so many books and she is really polite – she even says “Thank you Rex” when she has given him a toy. She’s fabulous.

I guess I’ll have to wait for the running and jumping… I’m sure once it comes I’ll be so tired out by her (and Rex), I’ll be wishing for the bum-shuffling days? We shall see.

Here she is working hard at conductive education:



 

 

Audrey is 3!

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

When it sucks to have two children…

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…

Audrey’s Magical Powers

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…

National Breastfeeding Week

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.