Talking to midwives; Tell it Right


In the last few months I have had the pleasure and privilege of speaking to midwives about the language used when a baby is born with Down’s Syndrome. The Down’s Syndrome Association arrange “Tell it Right” training days where parents of children with DS can share their experiences (good and bad).
The first time was in April at the Eastbourne campus of the University of Sussex, speaking to student midwives and then more recently, (this month) at the Royal County Sussex Hospital, speaking to qualified midwives and those involved with the screening process.

At both talks I gave a raw and honest account of my feelings when Audrey was born, how those feelings changed and what life is like for us as a family today. As I came away both times feeling like I’d missed certain details, I’m writing this post to cover everything I said and also everything I wanted to say. I hope this proves useful for anyone (NHS professionals, friends and family, new parents…) involved in the birth of a baby with Trisomy 21 (ooh I don’t use that term much, it’s the medical name for Down’s Syndrome).

My pregnancy with Audrey was lovely. I had no morning sickness, felt relaxed and happy and just had a bit of heartburn to contend with. We had the nuchal fold screening at 12 weeks – our chance of a baby with Down’s Syndrome was “low risk” – 1 in 1,000. We received that news in a letter and thought nothing of it.

The day Audrey was born was a scorcher in July 2013, I had concerns over lack of foetal movement, so I ended up at the Royal Sussex County Hospital just after 6pm with my friend. I was hooked up so the baby could be monitored, they soon decided she was in distress and needed to come out, I was not in labour so the only option was an emergency caesarean. It was a very quick turnaround, this news was delivered to us at around 6.45pm when my husband walked through the door. Audrey was born at 7.51pm. 

My first sight of her was wrapped in a towel in Ted’s arms. I saw her eyes and I saw it then; Down’s Syndrome? She was laid on my chest for skin to skin and as soon as I had full view of her I knew; I said “This baby has Down’s Syndrome”. I felt sick inside. Ted went to speak to someone (even though he felt silly asking, because clearly our baby wouldn’t have Down’s Syndrome), but they said that indeed, there were “markers” – a hand crease, a toe gap, the eyes… but then she was whisked away to the baby unit for care and I was left to recover. We were shell-shocked. It was a bad dream… wasn’t it?

No one said anything stupid at that time. I say that because people do. I’ve heard lots of examples, from “he’ll never give you grandchildren” to “some of them even read nowadays”. These are not helpful statements. Ever. But certainly not in the minutes/hours/days since your baby has been born. How about we just treat this situation like we should; a human baby has arrived. One that has a condition that tells us a bit (but not all) of what they might be like, of what challenges they might face. No one is born with a life CV. Can you imagine getting a note with your baby that says “Will have a series of dead-end jobs, have two failed marriages, get fat, get diabetes and struggle with an alcohol problem”? Doesn’t sound like a baby you’d want to raise. But there are no gold star life guarantees with a baby. 

Whenever I revisit Audrey’s birth I cry. I want to go back and take away the fear, take away the dread and the denial. We had chosen her name before we knew she was in there, we had a name for our potential girl and a name for our potential boy. I put a “pause” on that when she popped out. I asked Ted if we could use our back up name. I felt this wasn’t my Audrey. She wouldn’t be pretty or delicate as I imagined, she was now something else. Something ugly. I’d have to have another daughter without Down’s Syndrome to name her Audrey… Thankfully Ted stood firm and made me realise; she wasn’t a second choice baby, she didn’t deserve a second choice name. She was our Audrey, we just hadn’t realised. And wow, is she more Audrey than I could ever have imagined! A child so beautiful and delicate – my heart swells with pride and joy everyday because of her and how she is. I never could have imagined in those troubled 24 hours just how lovely she would be, but more than that, how she would exceed our expectations and make us proud to be her parents.

Audrey needed oxygen (it’s thought due to a floppy larynx), for 6 months, but had no other health concerns and she breastfed (I’ve also heard stories about people being told babies with DS can’t breastfeed, but that isn’t true). Having her attached to machines, looking so helpless, well it kind of helped us gain some perspective. It was certainly better to have this baby with a condition than no baby at all – you can quickly push a syndrome aside when you are worried a baby might not live.


I’d like to add that having Rex gave me a new perspective on Audrey’s birth- because I felt a similar numbness, shock and confusion at the sight of him and he clearly didn’t have Down’s Syndrome. A woman who has just given birth is in a crazy place mentally – it wasn’t a rush of love and perfection for me at either birth. The Hollywood movies lie. Both times I was surprised by the baby I saw, I had somehow projected so far that I had pictured my baby and the moment they arrived and nothing could ever measure up to that expectation. What a bummer.

But I’m not trying to disguise the fact that having a child with special needs can be challenging. It was tough to have a baby in hospital for the first 3 weeks of her life. Of course we didn’t enjoy her being on oxygen for 6 months and I found it frustrating when she still wasn’t walking at 3, but that time and those struggles seem like a small blip now. 


We have a walking, talking almost 4 year old who likes books, dolls and music. She attends  mainstream nursery, which she loves. She squabbles with her younger like any other little girl would, loves chocolate cake and Mr Tumble. 

She comes out with some of the best phrases;

“Mummy’s making me happy”

“Take your shoes off!”

“Oh Mummy I love your jumper”

Just yesterday she told her daddy he was “Looking fresh!” and this afternoon she said (to a 17 month old who had visited us) “Goodbye! Thanks chunky legs!”.

She cracks us up!

So what do you say if a baby unexpectedly pops out with Down’s Syndrome? First, congratulations. Yes of course deal with/discuss any immediate health challenges, but if the baby is healthy, you could mention that they have a “naturally occurring chromosomal arrangement” (thank you Rose Mordi, President of the National Down Syndrome Foundation of Nigeria).

Then you could go on to say that you’ve met families with children with the condition and they had a lot of positive things to say, but above all, they loved and enjoyed their child. Their only regrets; that they could have known from the beginning that this wasn’t bad news, it was just different news. 


We adjusted to our new path quite quickly really, Audrey went from the worst thing happening to us at that moment, to being a baby, to being a baby we loved, to being this awesome child that we get to raise! Now we show her off at every opportunity and we marvel in all the things she is teaching her younger brother. We are so lucky to have two beautiful, wonderful children, both of whom are a challenge(!), but that make us  happy.

Sometimes the lows make the highs much sweeter – I truly love that I have gone from fretting about her lack of future (in those early days) to being excited by all that she can and will achieve.

General update

So much to write, so little time.

I just wanted to check in and say; we are surviving. Still get hit with the “my mum’s gone” slap in the face every now and then, mostly pretending she’s still here.

Job on the horizon. Weather too hot. Short break away with friends coming up. Trying to put my positive pants on and not be a wreck.

Audrey and Rex both thriving. So much talking! And climbing! And singing! And whining! I’m exhausted and struggling, but they are the best and I wouldn’t change a thing.

Mummy blogging

Once upon a time our mothers mothered. They had no smart phones, no all day kids TV, no internet… they would make plans with other mums by calling on a landline or  (can you believe it?) going around to their house and knocking on the door! 

Now take a moment to think about what “we” have. Not just the technology, the means to entertain our kids, organise ourselves and find our (sorry, cringe) “tribe”; but the information. Wow. We have come a really long way since the stiff upper lip nonsense. Now we share. And share. And share. 

I’m starting to feel somewhat overwhelmed by the amount of content there is for mothers. It’s at a level where I can’t possibly keep up with all the Instagram pics, blog posts, events and debates – I would need to not have kids to have the time to read and interact with others about what it’s like to have kids.

I’m not knocking it. New mothers are being “created” every day. So the conversations need to stay public, because from c-section to child-unexpectedly-has-special-needs to post-natal-depression to refluxy-baby-puking-every-where to I-don’t-know-who-I-am-anymore; there is always something that can be helped by sharing. 

In fact, last month two things happened on the sharing front;

1. A mother I know on Facebook posted a very saccharine sweet status about how her 6 month old was the best thing in the world. Apparently being woken at 3am was fine because this baby is just so wonderful. Life has changed but oh so much for the better etc. etc.

2. The Daily Mail attacked some famous Mummy bloggers for being “scummy mummies” asking why it was suddenly ok to brag about being a shit mum? 

The former annoyed me because I felt this mum was letting the side down with her rose-tinted-spectacle view. The latter annoyed me because clearly these sharing mothers (instagrammers/bloggers) aren’t rubbish mothers; rubbish mothers don’t brag about it online. Rubbish mothers are too busy being rubbish. In fact, as they swear and smoke a fag over their little ones whilst handing them a coca-cola, they don’t consider confessing they’ve behaved in this appalling way because they probably don’t think it’s appalling. 

Of course I’m backing the “scummy mummies” all the way. One of the bad parenting examples was giving kids fish fingers. Which was basically my main diet as a five year old… And now my kids have fish fingers at least once a week and I don’t see that as shameful. It’s something they happily eat and if you’ve ever experienced a fussy toddler, you’ll know sometimes you just want them to eat. No bargaining, no choo choo noises, no tears, just happy, scoffing children at tea time. Many mums stood up in #solidaritea and posted pictures of their fish finger tea time, and Bird’s Eye used it to their advantage in an online campaign – good on ’em!

Back to the happy mum; well, good for her. How funny that my immediate thought was “you’re lying”! She is entitled to be enjoying those first 6 months and to feel good enough about it to brag online, but I’m so used to reading the opposite mantras of “it’s so hard”, “you got this mama”, “it’s tough but worth it” – it’s honestly a bit shocking to just read a positive post about having a baby – just saying their baby is a joy, no one is doing that – how odd!

But of course here I am over-sharing with the rest of them. My children are a joy. There are moments in our days together where I think I might burst they are so lovely. However, these are moments mixed in with all the other stuff that comes with parenting; the child that will not lie still whilst you deal with poo-mageddon, a melt down because you’ve put a book back in the wrong place and all the other bizarre moments on the rollercoaster that is looking after small children. It’s tough. It’s a also a joy, but yeesh, it’s mostly tough. And that’s where I can’t complain about the insane amount of parenting blogs. The over-share is there to help us through the tough times, remind us that everyone is going through similar stuff. 

So, keep on blogging you mothers (but don’t expect me to have time to read it all)!

Good grieving ?

Me and my mum, end of 79/early 1980

Around 2 weeks after finding out my mother had 2 months to live, she died. The decline was fast, you could say “at least she didn’t suffer any longer” or you could say “how cruel that she was taken from you so quickly”, either way, we lost our much loved mother, grandmother, aunt, sister, daughter and friend on 3rd April 2017.
The funeral was on Friday, which was 25 days later. People say “That’s a long time to wait” and “Oh I’m sorry it’s not sooner” but I liked the time. I don’t understand the rush. Between death and funeral there is a sense that you have not yet let that person go. Once the funeral is over, it’s all over. And yet it’s not.

I’ve been functioning normally. We had to move house and I’m currently job hunting. We have two children under four, so functioning was the only option. Yet friends were concerned, was I really ok? Was I bottling it all up? 

It felt like there was a movie moment expectation that I should be a bawling mess on the floor. But I was having coffee and singing nursery rhymes with the kids. I was clearly not ok because I was seemingly ok.

So what is the answer? Should I be in tears half of the day and should I ensure that’s when someone is around to see it? I actually started to wonder if I was grieving properly… But look, I’ve done this before, I’ve lost important people, but I didn’t have children then. You can certainly afford yourself more wallowing time when you don’t have two children under four. And anyway, grief is different for everyone.

You can pause it a bit. I guess you could say that amongst the singing nursery rhymes and answering job interview questions I’ve had my “moments”. Random tears, random staring into space as stuff runs through my head. She really has gone. 

When we first found out Mum was dying I had decided that at 3 and a half, Audrey would forget her and that would make life easier. No explanations, no upset. However, I’ve realised that actually, Nanny can “stay alive” a little longer in order for Audrey to lock her in. She recognises her picture, she knows her voice (I still have some voicemails on my phone) and she knows her house. We arrived for the funeral and the kids were hanging out at Mum’s old house with Bibi (paternal Grandma) and some friends whilst the ceremony took place. Audrey looked around the living room; “Mummy? Where’s Nanny?” a poignant moment and of course it brought forth a tear, but honestly I was pleased. My clever little girl knew where we were (Nanny’s house) and she asked a reasonable question. I don’t need to keep telling her Nanny is gone. Because Audrey will keep her alive for me. As will Rex. The next generation. Their Nanny-inherented-eyelashes fluttering at me everyday.

My distractions.

Mother


As the UK celebrates ‘Mothering Sunday’, a plethora of cards are being opened (my mum likes the ones with long cheesy poems in, the more words the better) and flowers are being plonked into vases.

Maybe you’re having a roast dinner. Or some afternoon tea. Mostly likely you aren’t talking much about motherhood. You may even have found yourself saying it’s “commercial rubbish”; a day dreamt up by card companies to make more money.

As a mother of two under the age of four, in motherhood terms I feel I’m right in the thick of it. At least I think I am, oh god, tell me there isn’t a more difficult stage?!? And you see, becoming a mother makes me think about my own mother. It makes me look at her differently.

My mum has always seemed nutty to me. Sometimes in a nice way, sometimes in a frustrating oh-you-are-paranoid-because-you-read-the-daily-mail type way. When we were kids she used to sing a song about being carried off to the funny farm, oh what a silly mummy we had! But of course now I see. Now I know. The funny farm song has loomed for me on more than one occasion and my kids are both still under 4! I was the youngest of four. At some point she had two teenagers, a 4 year old and a tiny newborn. Now that is mental health worry territory! But wait, that’s not even the whole story…

When I was born, my mother had breast cancer. I was induced a little early so she could have a mastectomy and some radiotherapy. I was cared for by my (turning 98 years old this year!) Nan, my mother couldn’t breastfeed me, she couldn’t even hold me when she’d had her radiotherapy. I find it baffling that this rocky start never affected our relationship. That is to say, as a child, teenager and grown up, I always felt bonded to my mum, even if I did like to mock or scold her for being crazy/paranoid/irrational! But what she must have been through physically and emotionally in the first year of my life is difficult to imagine, as well as the rest of the family. I was unaffected by this traumatic time because I was just alive, sleeping, eating and pooing, unaware that Mum nearly died. She must have gone through hell.

Beyond this incredibly difficult time in her life, which we all got through, my mum then had to raise two small kids and two in their late teens as a part-time single parent; we moved to the coast and my father worked in London, staying there Monday-Friday, coming home on weekends. I used to think Mum was being dramatic saying she was practically a single parent, but of course now I know how much I appreciate adult company and assistance every evening- the countdown to 6pm each day. I can now see why she was a little bit nuts.

Since I’ve become a mother I’ve probably spent less time with my own. She’s gotten older, stopped doing things and I’ve been massively distracted by two little people to keep alive. The days of meeting for a shopping trip and a bowl of cappuccino in Costa have long gone, now it’s more a monthly meeting where I try to talk to her whilst every so often stopping to say “No Rex, be gentle!” Or “Don’t eat that!”.

My mum is ill. Well, it started as ill. It soon became scans and hospital appointments. Then it was potentially treatable cancer. Now it’s terminal cancer. So after being my original benchmark for what happens when you have cancer (you survive), she’s now become like the others, a cancer sufferer, not a survivor.

So we are celebrating Mother’s Day knowing it’s likely to be her last (I’m not sure celebrating is the word).

People say I’m strong, I don’t feel it. Truth is, I have to park this. Put it in a box on a very high shelf. Zip it up. Stash it away. I cannot let the feelings flood in because I have to function. I have my own little family now. We’re moving in a few weeks and I’m filling in job applications, but aside from these ‘big’ things; I simply have to drink tea, wipe bums and microwave sweet potatoes, because life goes on. 

I’d actually quite like to smash some things. Punch some walls. I’d like to run until it hurts and fall down on the ground breathless and sobbing. However I recognise that won’t help my mum. Sheila doesn’t need me to break, she needs me to be that strong person people think I am.

Happy Mother’s Day to you and yours. Maybe hug a little longer, maybe talk about what those early days were like for your mum. Because they are tough for me, they were tough for my mum, but I know it’s all worth it.

Mum and Dad in their dinner dance days.
On my wedding day.

World Down’s Syndrome Day 2017

Good morning! Just a quick post to mark World Down’s Syndrome Day 2017. We are busy planning a move, I’m job hunting, both kids are running around like crazies and my mum is ill. So the blog is suffering a little… but I wanted to mark WDSD with a little note.

Audrey is still surprising us everyday, her vocabulary is broader, her stroppiness is increasing, her need for independence (“I want to walk!”) and her loveliness never stops. She is an excellent big sister, but is not so inclined to share toys… but will share a cuddle. Rex looks to her for guidance, he is learning so much because of her. I certainly never thought I’d say this, but our lives are richer and happier with Down’s Syndrome in it. Fact.

So there you are, just be aware; Down’s Syndrome isn’t scary or sad. It’s pretty cool actually.

I missed our local T21 gathering to celebrate (on Sunday), in favour of a mums-only trip to see Beauty and the Beast! But the kids had fun with Daddy and Bibi and here is Audrey enjoying a bit of soft play…

Swear


I’m pleased to say that in our household, the “C-word” is chocolate. Unfortunately the “F-word” is the rudey swear that you think it is. Yes, Audrey has picked up some naughty words.

It wasn’t very long ago that I was so proud of Audrey’s main repeat phrases (“Lovely!”, “Nice”, “You’re welcome”, “Fank you sooo much” etc), but then Rex came along and didn’t really sleep. I think that’s when my stress levels were high and my potty mouth increased… perfect timing as Audrey’s vocabulary grew! And just like that, she started muttering “for God’s sake!” (With an embarrassing amount of ‘tude to go with it). And as I thrashed that one out of the repertoire with lots of repeating (gently, whispered like a kind vicar’s wife) “for goodness sake”, another one crept in… the dreaded “FFS!”! Eek. 

The little minx was picking up on our reactions and started using it with a side glance, waiting for our response. Cheeky monkey! 

Having picked a local church school for her, I was growing concerned. But I also knew that if we worked very hard to be clean, the phrase would drift out of her regular chat and be replaced by something else. I’m pretty sure we are now weeks from a “FFS”, we’ve heard some other random negative words here and there, but mostly the little peach is coming out with gems that make me proud; 
“Mummy making me happy!”

“Hmmm I fink it’s actually lellow”

“Daddy’s at work”

“What’ve you got there?”

“Audrey have some?”

And although I do not want to hear her swearing, I’m grateful for every word she says, she is excelling in her communication and I’m extremely proud of her. Our little chatterbox!