Tuesday Thoughts: The Baby Book

Even though I have my own swanky writing office, I’m currently sitting in my kitchen typing this, the back door open so that the breeze on my face keeps me awake, and so that the dogs can potter in and out without scratching at the door every five minutes. In front of me, on the wall over this dining table, are two black frames full of baby pictures of Alison with her aunties, her uncle, her grandad. It seems as though my love for her is splashed across the walls of our house. Her playschool graduation photos hang in the hall; her communion photos are in the sitting room. 

I’ve always loved photos. When I moved to college, the inside of my tiny wardrobe was covered in photos of family and friends. Until I got my first camera phone, I would bring these photos with me to remind myself that I was part of something bigger.

I didn’t own a camera phone in 2012, when our daughter was born. I didn’t have a whole lot, in fact. But life goes on, and incidentally, people who try to tell you that you should wait until you can financially support a child are talking nonsense. You will never be financially ready, or ready full stop. We were both working part-time, and juggling childcare between us, and a lovely lady called Sharon. And because we were both working, neither of us had medical cards. When Alison was diagnosed with cow’s milk allergy in June 2012, she was prescribed Nutramigen, which was €12.33 a tin at the time, so three tins was nearly €40. Camera phones were the last thing on my shopping list.

When I look back now, I wonder if I should have tried to savour it all a bit more. It wasn’t as though I wasn’t warned about this. People warned me that the days would drag but the years would fly. Advised me to treasure every moment, because she’d be gone before I knew it. To really make the most of it. And to be honest, now that Alison is entering her teen years and I’m trying to figure out what my new role is, I feel awful for having taken it for granted. 

As Alison and I enter a new and trickier phase in our mother-daughter relationship, once again I’ve found myself questioning my parenting ability. I know my parenting was scrutinised by professionals in the early days, but these days I find myself to be a harsher critic than any nurse, doctor or social worker. I need to be more delicate. No, more direct. No, more lenient. No, stricter. I give her too much independence. I need to let go more. Come nine o’clock, I will have a pain in my head, as I’m sure all parents of teenagers do. And this is without the traditional worries of sex, drugs and rock’n’roll, which I know are only around the corner.

And I see now that I should’ve captured her a bit better. I didn’t keep the first lock of hair that was cut. Nor did I keep any of her teeth. I have videos of school concerts, blurry ones that were taken by my shaky hand. I have incoherent handprints, futile efforts to capture her at a certain age. I didn’t mark the wall every year as she grew taller – this is the one that I regret most. I haven’t even made a baby book. A book recording her first words, the first time she crawled, her first steps. I don’t have the hair from her first haircut. These things weren’t priorities at the time. My main focus was on surviving and giving her as much of myself as possible.

Yet, I have such lovely memories that are mine alone and I don’t need to share with anybody.

Memories of teddy bear cinemas on Sunday mornings. Of tea parties and picnics on the kitchen floor. Of doing all the things I’d swore I’d never allow my child to do; Play-doh, sandboxes, art involving glitter and paint. I remember midterm breaks that involved me bringing her to Mr. Price to buy a few bits for a Pinterest-inspired art project, especially around Easter, Halloween or Christmas. Clay figurines, lollipop stick houses. It was a joy to watch, as she got older, the improvement in her colouring or the increasing time she’d give to painting decorations. She would design our Christmas cards and handmake birthday cards for family and friends, projects that were thinly disguised activities to get us both from one day to another on days where I struggled to hold everything together. 

Or we’d walk down the canal and pick flowers (weeds), again killing time while she looked for “rare” flowers. I used to love these walks. We’d find conkers and helicopters, all of which were pocketed of course, then caused problems in the washing machine when they were undiscovered. I remember the long days we spent in the town park, chasing birds or looking for butterflies or ladybirds.

I remember teaching her how to read, making cards with words like “table”, “chair”, and “fridge”, and watching in awe as she stuck them to the correct objects around the house. I remember the first book she “read” on her own: Angelica Sprocket’s Pockets by Quentin Blake. I remember her first day of school, how lost she looked in her uniform, yet how enthusiastic she was. In fact, until last year, Alison rarely missed a day of school, such was her love of learning.

On the sad day when she decides to fly the nest, I will have copious amounts of artwork, stories and photos to look back on. But the most precious will always be my memories, of a happy, intelligent and truly unique child, which will live in my psyche until I take my last breath. I know that I did my best. And I have a loveable girl to show for it.

Tuesday Thoughts: Dropping the Ball

Okay folks, forgive me for I have sinned. I know that when I initially committed to this Tuesday Thoughts malarkey, I thought I’d have something ready every Tuesday morning, and that no matter what life threw at me, no matter how busy things got, that surely I would find an hour or two to jot down a few thoughts and keep a regular writing habit going. I mean, journalists and columnists do it all the time, and that’s what I aspire to define myself as one of these days. How hard could it be?!

Turns out, life has different plans. Firstly, the sprog went back to school and caught every bug and head cold going, scuppering her plans to get to June with perfect attendance. Then, I got caught up with this editing course I’m doing which is not difficult, but is certainly time consuming. After school activities and friends coming over to “hang out” (I don’t think they’re called playdates anymore when you’re a preteen), along with work and domestic obligations nearly left me for dead in September. Okay, I exaggerate slightly. But I was pretty bloody tired.

And then my beloved husband spent a week in the hospital, and I just thought, oh my God, I think I’m going to crumble now. A week of worrying, of not knowing what was wrong or where it would end. Don’t worry, reader, he is on the mend now. He’s picked up a ball that he can’t afford to drop: the ball of self-care. A ball that I’m not even sure I own.

I’ve always been useless at self-care. I don’t mean that New-Age stuff of spas and weekend breaks. I mean really basic things like sleeping, exercising and eating right. I am absolutely useless. My friends (I hope) will vouch for me: Give me your problems, no matter how big, and I will always find a solution for you. Even if it means putting myself out, I would rather do that than disappoint someone. It’s people pleasing to the highest degree. But it was only when my beloved was in hospital that I realised how unhealthy this is.

In the past, I have suffered in silence rather than said no to something. I’ve agreed to some ludicrous things that I wouldn’t agree to now. I’m so willing to please that it’s sickening. To some degree, it’s because I consider myself a Christian, and it is the Christian thing to help people who need it. But it’s only recently that I’ve come to truly understand the meaning of “you can’t pour from an empty cup.”

And so, while my husband recuperated in hospital, I took my foot off the gas for a little while. Rather than succumbing to a mini nervous breakdown as I might have done in the past, I pressed pause on coursework and work. I did as much housework as I could manage, but no more. I went to bed at 9.30 every night with my daughter. I didn’t blog. I didn’t even attend my online writing group, which I have always moved around my plans so I could attend. The dogs weren’t walked every day – in fact, they were only walked once in the week JP was in hospital. I didn’t write. I watched Netflix and listened to podcasts. And while I felt awful about it, I also had a revelation as I watched those proverbial balls drop:

If I drop, none of this stuff will be done anyway. None of it will really matter, if I’m not here.

Now, this is obvious to most people, but applying it to real life is easier said than done. After all, we live in a society where productivity is a measured of one’s worth, and burnout is seen as a prestigious accolade. In addition, we live in a wretchedly connected world where it’s normal to send and receive work emails on a Sunday evening. Messages must be answered straightaway. A quick text is less time consuming than a phone call. It leaves more time to do all the stuff we perceive to be important.

And it occurred to me, only I can truly define what “important” means. I thought to myself, if I drop dead in the morning, will they mention my Marie Kondo folding technique in my eulogy? My ironing skills? That I’m a dab hand with a Shark? (the hoover, not the man-eating, ocean dwelling mammal). I said to hell with all this, and snuggled up with my preteen in bed and watched Derry Girls.

The patient is home, and we’re all hoping for a smooth recovery. Hopefully, as things settle down, I will be more productive. I might even start writing my novel again. Maybe not today though, and I’m learning to be okay with that.

Tuesday Thoughts: Doggone Days

It’s Sunday evening again, and like a bold secondary school student, I’m sitting down after a weekend of slacking off to try and make my self-imposed Tuesday deadline. This heat, I’m sure every writer will agree, hasn’t been conducive to bursts of creativity. Yet, you might be impressed to read that I’m typing this from my brand-new office! I got a new desk, and have now moved in most of my paraphernalia: the computer and printer, my paltry collection of articles and short stories, and my trusty office chair. And this evening, I added the finishing flourish: a crate with a bed for two of my most loyal friends, Troy and Rupert. As I type, Rupert has made himself at home, whereas Troy is more suspicious of this new layout. (That’s what old age will do to you. Troy turned four on Saturday, 9 September). 

These two furballs are pains in both my arsecheeks, and yet, I can’t imagine life without them now. I had always wanted a dog. We didn’t have one at home until I left for university. He was a sparky Jack Russell. My then-boyfriend, now husband, suggested the name Fred as we already had a cat called Ginger (an homage to Fred Astaire and Ginger Roberts). Fred was an absolute lunatic. He loved his walks, but he was an absolute nightmare, as he would rather drag you around the neighbourhood than walk like a sane dog. Fred was also petrified of the Hoover – it didn’t even need to be turned on, as I discovered when his beloved ball landed within inches of it, and he refused point blank to retrieve it. Instead, he would jump behind the couch, occasionally peering over to make sure the hoover was nowhere near him.  

In 2008, JP and I had a Labrador for two weeks, who we called Lady and, after a visit to the vet’s, Laddie (the woman we adopted him from had told us that she had a pack of female puppies. Obviously, she needed to brush up on her biology!) The same week, I was offered a job with Offaly CIL, which meant that I’d be out of the house for seven hours a day. After many tears, we decided to do what was best for the dog, and so Laddie was rehomed with a lady who loved dogs and had lots of land for him to run around on. It wasn’t easy, and my heart broke doing it. I hadn’t realised it was possible to love a dog so much. I decided that I could never put myself through that pain again. 

Fast forward eleven years, to November 2019. My husband and I had been talking about taking the plunge again for the guts of two years. Our friend recommended a lady who treated her puppies like babies, and so Troy made his entrance into our world. He loved his walks, he housetrained quickly, and soon, we couldn’t remember what our lives had been like before he came along. Troy was our saving grace when the Covid pandemic hit, when everyone was scrambling to get a dog. My husband did four walking challenges (unfortunately, it gave him a bunion the size of a pingpong ball), which kept him going through these lonely times. Troy loves the sun, and relishes the sunny days stretched out in the heat. Thankfully, he outgrew his unpleasant marking phase (my side of the bed was his target of choice), although he will still climb onto the table after meals to see if we “forgot” any remnants of dinner (some of the things he’s eaten include an entire chicken roll, a Crème Egg, an entire bolognese and, most recently, a bowl of porridge).  

Troy as a baby

Troy is a gentleman. Like most dogs, he instinctively knows when you are sad and will curl up on your lap, hoping to distract you. He’ll lick your tears, he’ll jump up to greet you when you come into the house, and he’ll do everything possible to ensure that you know how much he loves you. He’s the biggest softie going. If I’m scolding Alison, he will stand between us to protect her – cute and irritating in equal measure! 

In 2021, we decided to adapt the house to make it more accessible, and thank God we did, given that both JP and I are shuffling around the place like a pair of old crocks at the moment. This meant that we had to give Troy to two dogsitters over a seven-week period. The first lady could only mind one dog at a time, and Troy didn’t know himself, being the centre of attention for the first three weeks. The second dogsitter also minds dogs in her own home, and so Troy spent the rest of the summer with his new best friend, Brid, who loved him so much that she didn’t want to give him back!  

After coming home from Brid’s place, Troy was seriously depressed. He spent the days lying in his crate like a lovesick teenager, and it suddenly seemed cruel to leave him without some canine company. I must admit I wasn’t thrilled at first by the prospect of another dog. Double the cost, double the walking, double the poo. Then my friend sent me a picture of a little ball of ginger fur with enormous brown eyes. I thought he was kinda cute, but my husband had decided that he was ours. His name was Rupert, and he was Troy’s (and our) new best friend. Double the trouble, and double the love. 

Rupert as a puppy

I’d always heard that dogs had their own little personalities, but I didn’t quite believe it until I met Rupert. He’s a nervous little thing, and highly strung. He also loves the sound of his own voice, and barks on walks for no reason whatsoever (although, through training, he is improving). Like Troy, Rupert is a King Charles, but he can run like a greyhound, as we have discovered on the occasions he’s managed to escape from the garden. Because of the barking, passer-bys are often afraid of him, but he is the sweetest thing and rarely sleeps alone, choosing instead to plop his arse on Troy’s head or bury into my knee in the evenings. He also encourages Troy to eat his food. Before Rupert came along, Troy would only eat a bite or two a day, but now, it’s a race to the feeding bowls, which are always empty by twelve noon. 

I know it sounds cliché, but Troy and Rupert are my friends. When I’m sitting here during the day tapping on my keyboard, their antics keep me amused, and I secretly envy their endless napping. We go for regular walks, and after barking at everything that moves for the first kilometre or so, Rupert trots beside his brother, taking in the sights and smells. When he finally quietens down, I enjoy those moments: when I’m alone but at the same time, not alone. 

Rupert lies everywhere that Troy does – Troy has the patience of a saint!

I honestly think my heart would rip in two if anything were to happen to either of my precious furballs. They’re not just pets – they’re family (Alison refers to them as my naughty sons). I love them to bits. And for all the words I’ve written here, everything I feel can be tied up in just two lines of poetry, by Richard A Bilby: 

“So the next time you hear the phrase ‘just a dog,’ 

Just smile, because they ‘just don’t understand’.” 

A Letter to my Sixteen Year Old Self – Tuesday Thoughts 5

Dear sixteen-year-old Sarah,

You don’t know me, but I am you, writing this from the year 2023 (no, you have not died alone at the age of 25, as you thought you would!) In fact, you’re due to turn the big four-oh next year, and life is even better than you could ever imagine, though I know it’s hard to see it now.

Right now, Sarah, you’re the “swot”, the misfit, and you don’t have that many friends. You’re lanky, clumsy and awkward, and no matter what you do, you just can’t seem to blend in. Maybe you don’t realise it now, but it’s not your destiny to fit in, and that’s not a bad thing. My dear, you’re not a stick of foundation, existing only to cover over the cracks. You were born to stand out, and as cringeworthy as it may seem now, in time you will embrace it. You will be a rock of support for so many of your peers, disabled people who, like you, yearn to live independently. You know that you’re good at looking out for other people.

Unfortunately, you’ll always be stubborn and you’ll never really take your mother’s advice, and learn to truly look after yourself. This will always leave your mental health a little fragile, something you will struggle with over the years. However, your future is so much brighter than you could ever imagine, and contrary to what you believe, you will find someone to share your life with. In fact, you will meet the love of your life on the first of November this year, the year 2000. Where? Clochan bloody House. I swear to God, this isn’t a word of a lie. You are going to be so glad your mother forced you into respite, at the ripe auld age of sixteen?! His name’s John Paul and he’s perfect (okay, not exactly; he’s from Laois, but sadly some things cannot be helped). You think you don’t believe in love? Well, this guy is going to shatter all your illusions.

You two need each other it’ll be you and JP against the world. Against the advice of well-wishers, JP and yourself become will rather close and in fact, he will be the only partner you’ll ever need. You’ll attend your grad with your boyfriend, and he will come up to Trinity College to visit you at weekends. Yes, you read right – you’re going to university. You’re a hard worker, and you’ll study English in Trinity with the intention of pursuing a career in writer (and God bless, you’re still trying). You will live independently from your parents and after burning a few pizzas, you’ll learn that you’re actually a proficient cook, able to whisk up meals out of the measliest tins. You’ll meet Brendan Kennelly and exchange pleasantries with him in Front Square, sit in lectures given by Seamus Heaney, and write essays about Shakespearean plays, all while feeling like the biggest imposter to walk through through that wooden Front Gate. I promise you that your classmates all feel like imposters too, and how I wish I could go back and whack your heads together!

Anyway, back to JP. I know you’re baulking at the idea of marrying a disabled person for the sake of it, but that’s not what’s going on here. This guy is super supportive of your dreams, as you are of his. You want what’s best for each other, you constantly encourage each other to embrace your individuality and each other’s interests. It will surprise you, as a skeptic of the institution of marriage, that you’re going to walk down the aisle in Tullamore Church in August 2010. 

You will also have a family, even though I know you’re dubious about whether you would make a good mother. Only one person on this earth could be the judge of that. Her name is Alison, who you’ve named after your mum’s favourite bluegrass singer, Alison Krauss. She will be perfect in every way. Of course, motherhood will not be an easy path and yet again, you will find yourself having to prove your ability to everyone. If I could lend you one piece of advice at this stage, it would be not to listen to the doubts of others. There is no reason why you’re any less capable than those so-called “able-bodied” mothers who can carry their children on their hips. It’s a tired cliché, I know, but love is really all that you’ll need. And her love will carry you through, and make you a better person.

You’re afraid of what the future holds right now. Many of your disabled friends have been relegated to the modern-day equivalent of sheltered workshops, but you shouldn’t be discouraged by this; there are often different routes to our destinations of choice. Besides, just because you will be lucky enough to go to university doesn’t make you better than anyone else. If you ever become privileged enough to pursue writing as a career, then you must learn to cast those prejudices aside and truly listen to those stories around you. You’ll learn so much more than you think.

Right now, you’re contemplating writing a play for the summer, in order to secure your place in TY. Just follow your heart. It will be huge. You and your friends will become so much closer. However, one mistake you’ll make for years is taking yourself and your writing too seriously. Writing is something that you’ve done forever, but you’ll hate it for a while. You’ll jack it in to try something more mainstream: office work. Yes, you’ll abandon your dreams for a while but you’ll always be led back to writing – where you’ll belong. Just to warn you – it will never make you rich. But you’ll come to accept that money is no substitute for good mental health.

And one last thing – your biggest fear will come true in just nine short years. I’m afraid that your mum will be struck down in her prime, at the tender age of fifty-one. You will be devastated, naturally, but don’t you dare wallow in self-pity. You owe her a lifetime debt of her steadfast belief in you, for her refusal to allow you to sit around and wait for opportunities to drop into your lap, for never mollycoddling you. Only when you get older will you truly appreciate the struggle that both mum and dad faced in proving your true worth to those who advised them to dump you into a home, why they insisted that you went for extra physiotherapy sessions, and why they pushed you out into the world. Right now, it seems unfair that you have to cook every weekend, or do a mountain of chores, or cycle to school every single day, even in lashing rain. But life isn’t fair, and by the time you leave college and go on to work and starting your family, you’ll realise that. And you will be filled with an irrepressible sense of right and wrong, and the strength to fight for your rightful place in the world.

So, my child, keep pushing forward in the knowledge that although things look bleak now, they will get better. Your work ethic and charming personality will win through in the end. Just be patient and keep the faith.

All my love,

39 year old me.

Forgiveness, Please!

So, where have I been in the monotony of lockdown, I hear many of you ask. Well, like many of you, I have been homeschooling and sorting out my house. Actually, that last part is a lie. I’ve been sorting out my head – after years of using this blog as some sort of replacement therapist, I started talking to a real one, a qualified one instead. If you have the money, I strongly recommend it. Even though I’ve written about my mother dying and the trauma surrounding Alison’s birth/first homecoming, I’ve never relayed any of the feelings behind these things to a professional, and now, at a time when I have far too much time to think, I decided that it was the right time to tackle my demons and get my real life back. And I have to say, it’s going far better than expected. I feel so different, and more like myself. Look, I’m even writing a blog – it’s a miracle!

We started talking about Alison’s birth and the emotional rollercoaster that came with that, the unfairness of the scrutiny we were under and how it affected my mental health to the point where I stupidly fought Postnatal Depression on my own. She responded with things like “that was hard” and “that was so unfair and clearly damaging”, which made me feel validated in what I felt. Then, at the end of the session, she sent me a worksheet – on forgiveness.

My first reaction was, “Well, clearly she wasn’t listening as well as I thought if she thinks for a second that I can forgive the feeling of being scrutinised, not to mention the subsequent three years (and probably longer, if we’re being honest) of depression.” I shut down my laptop, walked away in anger. I’m not ready to forgive, I thought. That time after Alison was born damaged my confidence, and my relationship with my husband and my child. I felt deprived of the freedom to make mistakes like other mothers. I had been subjected to excessive scrutiny, making an already stressful time, even more so.

But a couple of days before my next counselling appointment, I opened up the file again and read it. Forgiveness is not about forgetting how you were wronged, it is about letting go of anger. I realised that I had been carrying anger around for a long time, and that it was now exhausting me. I realised how, sadly, that anger led me to decide that I couldn’t face having any more children in case the same thing happened again. That anger and fear stopped me from seeking help at a time when I needed it most. Every year, I find Alison’s birthday overwhelmingly emotional because those memories and feelings come flooding back.

And I started to think more closely about the anger that I was feeling. I cannot deny that some good things have come from that anger. I started writing about my experiences as a disabled parent because of it. Many of my peers came to me for advice on starting a family and accessing services on the back of those angry words. I became involved in the (Re)al Productive Justice Project, where I spoke about my experiences with the Health services, both positive and negative, and in doing so, highlighting the physical and attitudinal barriers to parenthood for disabled people. I’ve spoken at the International Disability Summer School about the shortcomings of the maternity services for disabled parents. I’ve written blogs and magazine articles. My blog was quoted in an academic study of disabled writers by Elizabeth Grubgeld, Disability and Life Writing in post-independent Ireland. Most recently, my blog was included in a radio segment called “In the Bleak Midwinter,” which documented a range of women’s stories, some of whom had given birth in mother and baby homes. It was the first time that I considered my story to be part of a wider picture, the ongoing injustices against mothers and their children in Ireland. So I am proud of the part my story has played in this wider narrative.

However, if this stupid pandemic has taught me anything, it’s that life is delicate. It’s short. It’s so precious. And now that I am really ready to heal properly, I don’t want to waste any more time seething in resentment and pain. I want to enjoy my life. So here goes…

To the medical professionals who doubted me, and in turn made me doubt myself – I forgive you.

To the Public Health Nurse, for your scrutiny – I forgive you.

To anyone who expressed doubt when I needed your support – I forgive you.

To those who judged me – I forgive you.

And finally – to that face that looks back at me in the mirror every day, who gave your baby the jar food instead of cooking fresh, who gave (and still gives!) their kid way too much iPad time when times got tough. Who saw seeking help as a sign of weakness, who made some crappy parenting decisions (but a lot of decent ones too) – I forgive you too.

And that forgiveness feels so good.

Kids Today

Two months ago, how would we have described the kids of today?

The word ‘snowflake’ was bandied around an awful lot.

They probably had no empathy for others.

They spend too much time on their tablets and not enough time outside.

They were selfish and obsessed with material goods. Always wanting more. More toys, more technology, more games.

And now we find ourselves in the middle of a global pandemic, the biggest threat many of us have faced in the history of our existence.

School and extra-curricular activities cancelled. No visits to play centres, not even to our local playground. We cannot even visit aunts, uncles, grandparents or friends. No more playdates or day trips.

In the midst of it all, it is the kids, not the adults, who are coping so well.

They are using their tablets to keep in touch with each other, and have learned quickly how to use technology to host group calls  (I’m now only becoming used to Zoom calls). They watch YouTube for inspiration for art projects.

With no busy schedules, they have to spend more time at home, maybe picking up books that they otherwise would have had no time to read.

They use Google to learn about animals, other countries, famous people.

They want to help. They make cards for the frontline staff. They write letters to nurses thanking them.

Of course, sometimes they play games on their tablets. Maybe for longer than they should. And that’s ok too.

They are learning about the emotions that our generation of parents have been accused of shielding them from for too long. Sadness. Disappointment, Anger. Loss. We cannot give them everything they want, and they are learning to cope with that.

We are no longer raising the snowflake generation. We’re raising the generation of children who will change their world through kindness, empathy, understanding and compassion. We’re raising a generation who understand that physical and mental health must go hand in hand. We’re raising the generation that one day will make the world a better place.

And in fact, they already do. And I for one am very proud.

Post Election Manifesto (Poem)

 

You knocked on our doors wearing a smile,
Said that you wanted to talk for a while,
Assured us that you understood our pain
and that in trusting in you, we had everything to gain.
Then as the door closed with us safe behind
Did we really remain in your minds?
Could you really know what our smiles were hiding
As your manifestos through our letterboxes you were sliding?

Black eyes by a fist who wanted to show who was boss;
An empty cot owned by a mother suffering a loss;
A child who didn’t have breakfast that day;
A young man who can’t make those voices go away;
A lonely but beautiful lady who can’t seem to stop drinking –
When you were ringing those doorbells
What were you thinking?
How were you going to gain our trust
In an Ireland viewed by many as cold and unjust?

You could promise the moon and the stars
But we won’t believe you’re not running up your tab at the bar.
While you attest that things will change in your name
for many of us our reality stays the same,
We still struggle to keep the roofs over our heads
(the lucky of us that is – spare a thought for those in hostel beds),
while working our fingers down to the bone
and spending our evenings feeling overwhelmed and alone.

And that – mo chara – is the biggest problem right there –
That people these days just don’t seem to care!
Young people in nursing homes, families with nothing to eat,
Thousands of people out on the street!
For a country obsessed with unity, all we do is divide –
Never has the gap between ‘rich’ and ‘poor’ been so wide.
And it’s so hard to believe that the country is broke
When the powers that be get six-figure paychecks
(unlike ordinary folk).

So if you are in government, and you’re reading this crap,
It’s time to stop letting Bertie and Enda take the rap,
The future of this country rests in your hands
And we’re counting on you to meet our demands.
Don’t say it’s impossible, that your hands are tied,
Instead think of the tears your people have cried.
One person can’t change the world, it’s true,
But if you speak up for the voiceless, others will too
And maybe, just maybe, our faith in Ireland will renew.

 

Ten Years On

 

Ten years on,
and how should I feel
other than numb,
Dumb
Lost for words?
I remember that day
It prickles the soul –
The ringing of an office phone
The air was as grey as a gravestone.
A vital organ
Viciously removed
Left me gasping for air.
It didn’t seem fair –
Sure hadn’t we just spoken
A few days before?
It couldn’t be right
And try as I might
I just couldn’t believe
You were
Dead –
Taken by the angels, they said
As this somehow made it okay
That you wouldn’t awaken to see the next day.

Ten years on, and my heart still stops
When Carly Simon is piping through the shops.
A whiff of Samsara, the taste of a good stew
Deceives my mind into looking for you.
and I know after ten years things tend to look rosy
when in fact we both know that things weren’t always cosy
Between us. But I have learned
to abandon that baggage in the lost and found –
It can get very heavy carrying it around.

Ten years on
And I struggle with survivor’s guilt and what-ifs
The empty chair in the corner of my eye
As I slipped on the gold ring
and cooed over the bassinet.
You left when I wanted more:
one more day, one more meal, one more moment.
The anger reverberated through my bones
Resenting you seemed the easiest option
(the right thing is never the easy thing).

Ten years on, and sorrow visits automatically
Like a summer tourist on a return booking.
And I don’t want to feel anything.
My bruised heart clams up, recovering
From past wounds. Time heals
and steals
precious moments.
You are the archetypal mother-in-law,
the doting nana,
The headcase ringing me ten times a day with trivial gossip.
That remains.
Light barges through the fog,
And I hurt:
I remember.

And ten years on
I realise
You can’t be dead
If, within my soul,
You have survived.

Healing Heart

It was late October when I got a call from a fellow activist. Now I have a rule that when someone from our diverse disability community asks for help, I try to accommodate where possible. This lady was ringing me because she was due to give a talk on disabled parenting the next day, but she had other commitments she’d forgotten about. Luckily, I had none scheduled. She was to give a talk to medical students in UCD.

“I’ve nothing prepared,” I said in a panic.

“You’ll be fine,” she replied. “Just wing it, be grand.”

And so against my better judgement, with no notes with me whatsoever, I found myself on the train to Dublin the next morning. I love the train; often it’s the only solitude I get when I spend most of every other day studying, writing or parenting. However, this time I could hear my own thoughts, and I didn’t like them. How come, almost seven years later, I still felt like I’d dodged a bullet, that I’d got away with doing something terrible? Why, after all this time, and all the happy memories I’d made, was there still that little sting, that tinge of unfairness lingering in the bottom of my soul?

Why do I still feel hard done by, robbed of what should have been such a happy time for my husband and I, the memories of bringing Alison home for the first time drenched in panic and fear? And is it, in fact, a bad idea to rake over the painful details of that time over and over again?

I arrived at UCD and after several phone calls, figured out where I needed to be (UCD is huge). I was met by the lecturer, Mary, who was absolutely lovely and very welcoming. We were both nervous because we didn’t know anything about each other.

“So,” she said, after the introductions, “how was your experience of maternity services?”

“Well,” I replied, in a matter of fact tone, “the physical care I received was excellent, but the attitudes of some of the staff were… horrendous!”

“Oh, brilliant!” she exclaimed, clasping her hands in delight. “Well, not for you, obviously, I’ve no doubt, but this is the type of discussion we need to be having with our future midwives and healthcare professionals. I want you to be frank and brutal as possible. Lay it all out there, all the gory details!” I smiled with pursed lips, hoping I wouldn’t shatter like a china vase. Of course I know that in this disability game, you need to have a thick skin. Otherwise you won’t survive – simple as.

The students came in and Mary introduced me, before disappearing to my horror (I hadn’t realised that I was considered to be a guest lecturer). To put the students at ease I told them there was nothing they couldn’t ask me and that I would be honest in my answers. Telling them that I was told that I was a danger to my own baby hurt in all the usual places, but we did have a bit of craic when I told them I knew better than the Public Health Nurse about Alison’s reflux. They seemed absolutely horrified to hear that she visited us for six months solid, on a daily basis.

“Any advice for us future midwives?” came one of the questions.

“Listen to us,” I said. “You’re going to be coming out of this university with six years’ of study behind you, but at the end of the day disabled mothers are – and always will be- the experts. Very few disabled mothers decide to have a baby willy-nilly. This is a decision that we agonise over, and sadly a decision that many potential mothers don’t have the mental energy or the fight to follow through with. Don’t treat us like we’re stupid. Support us, don’t frighten us. Often we are frightened enough.”

When Mary came back in, she was surprised to see us all smiling and laughing, me most of all. I had managed to get ‘down with da kids’ and I could see that I had really got through to them. I was still in pain, but happy. I had changed minds, challenged perceptions through opening up old wounds. And those wounds were slowly healing again.

Alison turned seven on Saturday, so I have been a wobbly yummy mummy for seven whole years now. And although it’s had its challenges, I wouldn’t change it for anything. I missed her birthday as I was in college in Maynooth. On Sunday, we were asked for examples of self-advocacy, and so once again I went through how we advocated for the right to be parents. Our class was horrified, to my delight, because it confirmed to me that what we experienced was wrong.

I can’t change that experience. The comfort I can take from it, however, is that we proved everyone wrong. That we have a beautiful, intelligent daughter who made our lives purposeful and complete. Alison makes me want to be a better person every single day. She’s the one that reminds me why I speak out so much, why I hope one day that the world will be a better and more accepting place for disabled parents.

Recovering from the hurt in my heart will be a lifelong ordeal. But if I can help, encourage and educate others to make the lives of future disabled parents easier, it will be worthwhile. And hopefully, in helping others, my own soul might finally heal.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Poem: Proud

                                                                Proud

Nine years of birthdays with no candles on a cake,
Watching seasons come and go,
The days dragged, but the years flew.
And here I sit once again, with no gifts, no smiles, no hugs
and nothing new to say,
Unless you count saying ‘I miss you’
in a completely different way.

But this year, as well as the usual
Memories that make me smile,
My mind wanders to the fact
We haven’t spoken in a while.
and I need some validation,
to hear you say the answers out loud:
What do you think of me,
Do I make you proud?

I know that when I share this poem
People will say ‘of course!
How could you ever think otherwise?’
And they’ll say it ‘til they’re hoarse.
But you know I’m a cynic –
I never believe until I see –
And to be honest, the fact I’ll never know
Has really been bothering me.

Because I know I wasn’t easy:
At times, I had to be pushed,
Sometimes I was lazy,
And others, far too rushed.
I remember you there goading me,
Telling me to do my best,
and as I got older
Begging me to take some rest.

Then I look at my daughter,
Your grandchild, brave and strong,
and I realise, for all my mistakes,
She’s the one thing I didn’t get wrong.
And when she looks into my eyes
and says ‘Mum, are you proud of me?’
I realise that the answer
Will ever only one thing be.

And this brings some consolation
at this desolate time of year,
A hope that you’re looking down on me
With a smile from ear to ear.
Because though I cannot know for sure
Or hear it said out loud,
I hope you know I try my best,
and I hope that you are proud.

Happy birthday xxx