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.

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!

A belated hello to 2017!

2016; quite a year.

It started well, with a lovely bit of maternity leave when Audrey napped and on nursery days I could go to the cinema or sit and drink hot chocolate alone. Or nap. Or stare into space. Basically just “be” without a child around.

Then February came; Rex arrived! He turned our lives completely upside down and took me from tired mummy to completely-shattered-and-almost-broken-mummy.

Both my children took their first independent steps! Audrey in October, aged 3 and 3 months, Rex in December aged 10 months and 4 days. 

I’ve was so very low at times last year and sometimes too focussed on that. I am looking forward to feeling more positive, as Rex sleeps more and they both become more independent. 

I have been wishing away the baby days, but please be assured I have also taken time to appreciate Rex’s delicious baby head, his tiny toes, they way he looks at me whilst having his milk, they way he needs a cuddle after a fall… all of his good baby stuff I will remember, I know I’ll miss it, but I am so excited about this summer. Two walking children!

Rex has started saying “Dada” more often and even aimed it at Ted, so we are taking that as his first word. I’m probably more excited that he has signed “milk” and “more”. We love Makaton.

In the meantime, Audrey’s talking is coming along fantastically and she surprises every day with new words and clever phrases. “Audrey’s so happy”, “Rex, what’s wrong? D’you need a duddle?” … as I type this she is playing with a doll saying “You done a wee wee? Do a wee wee in the potty? Say goodbye to everyone”. She’s a star.

Scarily 2017 would be the year Audrey goes to school, but we have made the decision to defer her until next year, giving her extra time to be potty trained, be a strong walker and generally close the gap between her and her peers. We have picked a local mainstream school and fee very strongly that Audrey will thrive there. She loves learning through play, she is a goody-two-shoes and I think she will be popular at primary school.

Anyway, let’s get 2017 out of the way first. I need to find a job so that could lead me down a new path. And once Rex turns a corner and learns a bit about being gentle and sharing, he and Audrey will be great playmates.

Cheers!
My two crazies.

My world 


OCTOBER = Down’s Syndrome Awareness Month.

This seems to come around so quickly and  I worry I’ve got nothing new to say. Or that I’ve said it all throughout the year in my general posts. 

Just know that we (the DS community) raise awareness because we care. We care about the people in our lives with Down’s Syndrome and we fight for them. We fight for others to become “aware” – to try and make them understand that DS isn’t necessarily what you think it is. We look for balance – for dark and light, Down’s Syndrome isn’t a depressing life sentence, but it’s not unicorns and rainbows either. That’s just life full stop.

I sat and thought about what I wanted to say this year and realised I want to talk about whether we can ever really get someone outside the circle to fully understand. Can we ever really make Down’s Syndrome appealing? Can we ever make it ok and not negative?

Close friends of ours got pregnant. They had the screening for Down’s Syndrome. Mum-to-be says to me “So we had the test and I told the lady that we weren’t really that bothered about the result because of what happened to you..” – at this point I start to feel all warm and fuzzy inside; that they would feel ok with a high chance of DS because they know and love Audrey. Ahhhh. But then she continued; “Because, well, you got ‘low risk’ and it didn’t mean anything – Audrey had Down’s Syndrome”. Oh. She was making a point about the test not being worth doing because it’s not accurate, not that it’s not worth doing because they’d be ok with a child with Down’s Syndrome. Of course this was an opportunity for me to push back and question her, but I didn’t. I just smiled and nodded like a fool. I don’t really like confrontation, but I suspect she would have backtracked and it would have been awkward.

My point is, even people close to us (on the edge of the circle), don’t necessarily feel ok about Down’s Syndrome, so how on earth can we spread a balanced message of hope and positivity to pregnant women who have no connection to DS?

Well, maybe we can’t… But maybe we can, so we’ll keep trying.

We can fight for better language (a baby with Down’s Syndrome, not a Down’s baby. Low or high “chance” not “risk” of Down’s Syndrome), we can fight for better knowledge (facts about people with DS attending mainstream schools, leading independent lives) and share our positive stories to outweigh the dated negative ones.

And so I’m going to point you in the direction of this (highly anticipated in our community), documentary; 

http://bbc.in/2dkMib6 

And this great article;

http://www.telegraph.co.uk/women/family/sally-phillips-my-son-has-downs-syndrome—but-i-wouldnt-want-to/

And I’m going to continue writing my blog and sharing our lives in the hope we reach the right audience. It certainly can’t do any harm to keep on keeping on… We live in a rich and varied world. Life would be so boring if everyone was “perfect” and “normal”.

I can only present life as we know it and our experiences, but I know someone who had an adult son with Down’s Syndrome that was in nappies and only had a few words – the kind of “worst case scenario” if you will. But they loved that son/brother/grandchild and never regretted having him. They would have had every right to be bitter and angry about the life he had/they had, but they weren’t. Love doesn’t necessarily conquer all, but it has a bloody good go at doing so.

One thing I’m 100% sure about is; my world is better for having Audrey in it. 

#worldwithoutdowns

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

We Can Do This

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.

The Calm After the Storm?

Newborns: wow.

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

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

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

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

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

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

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

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

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

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