struck by a stroke

It's been a funny week. Last year, every day was dominated by my mum's stroke - either in the practical arrangements of travelling constantly to Belfast with a newborn and two children, or the emotional - the sheer pain and weight of missing her. But this year has brought an acceptance, an ability to take the weight off my shoulders occassionally and live my life, even enjoy it. Her stroke has melded into our lives instead of dominating it - and living with it has become a way of life.
But there are moments when it flares again, a reminder of what is, and what was.
Yesterday my brother was over seeing my mum. He decided to wheel her round to one of her friends for a change of scenery. On the phone to him earlier, I had begged him to put something decent on her, brush her hair and put on a bit of lippy. My brother and dad are great with my mum, but let's face it, they're men. She has a tendency to look like the Wild Woman of the West in their care. An hour later he called back. He needed guidance. He had made sure she had some good clothes on and now he stood opposite her, staring into the mystical abyss that was a woman's make-up bag and he needed me to tell him what to do. So I found myself standing in my kitchen, phone in hand, directing my 46 year old brother on powder blush and lipstick.
"Is it meant to leave a brown ring around her face?" he enquired dubiously.
I'm not sure how she looked in the end, but he tried. And I love him even more for it.
And today, one of my articles appeared in the Irish Times. I had written it a couple of months ago, and I HAD written it. But still. It was a shock. To see our story in print. To see my account of my mum's stroke in a national newspaper. I link it here. http://www.irishtimes.com/newspaper/health/2012/0306/1224312843616.html
The impact of a stroke can strike at any time.

Letters of Love

This weekend, when I went up to Belfast to look after my mum, my dad had left a big box in my room. I looked inside, and found my life story. The smell of age and nostalgia mingled with tissue thin paper and ink. Every single card, every single letter, every single postcard, every single note I have ever written to my mum was inside.... stories laid bare, love notes squeezed between exploits, happy holidays, dulls days...all bound together in memory. I have written to my mum all through my life - through all my adventures, through all my education, through all my relationships, through all my parenting. And she kept every word. I spent a few hours just putting them into piles - the piles I realise that represent the phases of my life - my childhood - sweet notes of innocence and a burgeoning imagination; my year out in Pakistan and India as a naive 18 year old - full of longing for home, and excitement at the world; University - an adult emerging amid learning and independence; working life in London - lots of money requests and false starts on the job front; my two year travels - the spendour, the adventure, the romance!; and finally, my life in Dublin - my first flat, planning our wedding, our first home, my beautiful girls.
Reading them I realise how honest I was, how at ease we were with each other, how accepting we were, how involved my parents have been in my life. Not only does that box give me a unique diary of my life - in my own words, it is like a gift to me in this time as I grieve for my mum, and learn to live my life without her involvement.
I still write to her every week - I take photos of my days with the girls, and I embed them in a letter with a commentary, and I email it to dad who prints it out and reads it to her. They are slowly filling a box beside her bed - and in time too they will be the diary of this phase, and a reminder that even though she cannot be the person she was, she is still, and always will be, involved in my life.

The bearable darkness of being

It's nearly a year since my baby was born. And nearly a year since my mum had her catastrophic stroke. Undeniably the worst, saddest, most challenging, gut wrenching, heart tearing, mind wrecking year of my life. The sheer awfullness of having a 4 day old baby and loosing my mum into the depths of her mind; the sheer struggle of coping with Ruby, two other small children and trying to manage my mum; the sheer terror of this new life and the sheer loss of my old one; the sheer struggle to survive each day and get Ruby through with me was at times, just too much to bear. I have fallen apart and picked myself up so many times I'm dizzy. My two girls keep me motivated, my husband keeps me alive. When it happened, and doctors and neighbours told me my mum could live for years like this, I wanted to actually fall into the dark pit that was constantly calling me. I could not literally bear it.

But, a year is nearly here. It is still awful. It is still a daily struggle. I still have moments where the days are almost unbearable.

But, a year is nearly here. And as much as I hate to admit a cliche, time might not heal, for nothing will heal my loss, but time does make it better. Time calms the terror and finds the hope. Time teaches you to find ways to cope. Time enables you to adapt, accept, acclimatise.

Two things have happened I think. The first is me. My month in Donegal, often alone with my thoughts at night, allowed me to think, and remember, and come to terms for the first time. I had never allowed myself to accept it, because I never had a moment spare to go the dark place where acceptance is. I had my mum and Ruby, and the rest of my family to maintain. But Donegal gave me the space and time to go there, and to come back out into the light that acceptance can shine. I have let go of what was - remembering our relationship, our good times, our love like a precious treasure that will always glow and keep me warm. And I have embraced what is, my mum's condition, albeit nothing like I would want, but still my mum. Ruby is nearly a year and getting strong. I no longer fear for her survival - she is not so dependent on me to stay sane to survive. I can let go occassionally.

The second thing that happened, is that I think my mum has relaxed into her situation and perhaps even improved a little too. This weekend, I can honestly say I loved every minute of being with her. I never thought I would say that again. We hugged, we laughed, we connected. She asked me her first question since her stroke - 'how did you sleep?' And I could honestly tell her I was beginning to sleep well again.

I have written before about her amazing friends - and this weekend, we all hung out, laughed, drank wine and lifted our faces to sun. My mum was upset afterwards for she knew she couldn't talk to them properly, couldn't make herself understood, was muddled and mixed, and couldn't do anything to help, but I told her no-one minds. We all love her regardless of how she is. She has certainly loved us for long enough. I still hate that my mum will never come to my house again. I still hate she will never even go upstairs in her own house again, and potter in her bedroom. I still hate that she can't snuggle into bed with the girls and read them stories. I hate she can't tell me how she is, and ask about my life, and my family. I hate we can't share long days drinking earl grey tea and nibbling chocolates, having lunch in Avoca, or walking the splendour of Mount Usher as we always did. I hate that she can't go out and about with her friends.

But, in a year, I've accepted we must do new things. I can tell her all about my life and my girls and she will still smile. I can bring the girls to see her and watch her face light up. They can snuggle into her bed and perhaps soon, even Daisy can read to her. I can sit beside her and sip earl grey tea and show her pictures of the spendour of Mount Usher. Her friends can come round and share time, wine, memories, laughs and love.

The unbearable darkness has become slightly more bearable. I'll take life as it comes, and as my mum always taught me, make the best of what we have.

Family Friends

When you become a parent you don't think that your children will start having an influence on who you become friends with. But they do! One of my best friends is the mum of Daisy's best friend. How weird is that? Because Daisy made friends with a little girl in playschool, Ruby has Liza as her godmother. And now as Daisy ends her first year of school, I realise that some of the mums and dads I say hello to every morning - and who I will share time with for the next eight years - have slowly become friends. One a really good one. I never expected to make close friends at this stage of my life. Thought that was all done years ago.
I have always admired and envied my mum's circle of friends. As long as I have been alive, they have been around. I called them 'Auntie' and they shared every momentous and mundane moment of my mum's life, and by association, mine. They know me as well as anyone. Apart from the fact that 'The Girls' (as they still call themselves 40 years later) met every other Tuesday night for over four decades, they also chinked drinks and wrapped arms around each other at every significant event in their lives - children's births, divorces, parties, celebrations, bad days, good days and all the dramas and dilemmas that mark everyday life. There were days when they kept each other afloat and I always wished I had something similar.
But I didn't. Or so I thought. Sure I don't have the close knit circle, but I have something else. At my 40th I was pregnant so I decided to have a birthday lunch with my best girlfriends - a disparate group who I realised had also shared every moment of my life with me - just not all at once.
I realised I had a friend from every part of my life, and together they had chinked drinks and wrapped their arms around me for every significant event in my life. But, life has a funny way of keeping the circles intact, like a swirl, making circles within circles. One of the first phonecalls I made after my mum's stroke was to her best friends. Their devastation was profound and gave depth to mine. Over the last nine months they have kept me afloat. I text them, I ring and ask for advice, they call in to see me when I'm up with mum, and our lives now entwine once again, the love of my mum our common language. My mum's friends have become mine, friendship stretching generations. And as my new layer of friendships develop around the lives of my children, I hope the circles continue to spiral and my girls too will know that my friends are there for my life and theirs.

Birthday love

Today is my mum's birthday. As she lies locked in her body and mind in Belfast, for the first time in probably 15 years I won't be spending the day with her. Since I had children, she would come down to Dublin and I would take her to Avoca for lunch... we would while away a couple of hours nattering about nothing and everything, sharing each other's lunch, and always, finishing up with a 'goodie' with our cuppa. Then we would come back to mine and I'd throw a birthday teaparty for her with the girls. They would make buns and they'd sing happy Birthday till they were hoarse.

Then she would help me with Poppy's birthday party two days later, blowing up balloons, making marshmallow Top Hats, clearing up exhuberant princess spills and smiling at the mess a bunch of toddlers can make. Poppy will be four, and tomorrow's Princess Party (very important distinction!) will be her first without Nanna. Every 'first' cuts like the first cut - her stroke. A body blow, painful and bruising. The memory of last year so sharp, it cuts into the wound afresh.

But. Among all the firsts, there is also a comforting constant. The next day after Poppy, it's my Hubby's birthday. (May is the triple wammy!). He may be the one celebrating, blowing out candles and getting birthday cuddles, but I am the one that is lucky. I am the one with the best present of all....him. He looks after me, quietly, dilligently, without fuss. I've noticed him staying an extra 5 minutes in the morning even though I know he is so pressured at work, just to help me out because I'm struggling. He holds my hand in the dark of the night. He tells me dinner is gorgeous even if it looks like a bowl of cat food (lentil roast is not my forte). He doesn't take lunch so he can come home early on Monday to let me out to pilates, and never complains. He loves me. Simply and beautifully.

So I'd like to add a bit to my previous post - the sandwich filling. I am the filling. My girls and my mum are the bread. But he is the relish. He is the flavour. He is the part that makes it all worth while. Happy birthday hubby.

Pain and pleasure

We've just returned from our family week in Ballyvaughan in the Burren on the West Coast of Ireland. The family week we have every year with my mum and dad, my brother and his family, and me and mine. The family week mum and dad organised last summer before my mum's stroke. The family week that no longer involves my family. Not as it was anyway.

This time last year I was there with my mum. We pottered on wild west beaches, collecting shells with the girls, enjoying choccy buns with our tea, sitting side by side with our faces to the sun. This year, her absence was present everywhere. I never knew it was possible to feel so much pain without bleeding. The pain continues, as the realisation dawns that the trauma will not end. The trauma is constant. As my three girls delighted in the company of their cousins, the house was filled with their laughter, the laugher that made my mum's life happy. But she wasn't there to hear it. And amidst the noise of childish chatter I would be suddenly struck down, paralysed on the spot, cup in hand, children scampering around me, lost in my loss. While the world went on around me, I was still. And in my stillness I could see her. Her blue fleece walking along the beach, her white T-shirt soothing Ruby's screaming teeth, her sun hat tilted back as the sun scorched our skin as the view scorched our eyes with its beauty. A bloodless coup has taken place, not a mark on my body but my head and my heart beaten and bruised.

It was possibly the hardest week of my life after the two following her stroke, made more intense by the beauty of the landscape and the glorious weather, both of which my mum appreciated more than anything. People often use the phrase 'breathtaking' to describe a stunning view, but the beauty of the Burren is breath-giving. The expanse inflates your lungs, the beauty makes you breath deeper, sucking it in, absorbing the glory of the landscape into your bones, as if your eyes are not enough to capture it all. It gave me the strength to carry on, to enjoy the moments of pleasure as we all pottered on wild west beaches, collected shells with my girls, ate choccy buns with our tea, and sat with our faces to the sun. And feeling her with me still.

Lasting Firsts

Like everything in my life at the moment, two ends of the spectrum run in parallel - sometimes so close, the lines lie against each other, indeterminate, entwined, indistinguishable. My mum needs caring in the same way as my baby. My girls teach me as much as I mother them.

And so I constantly memorise every 'last' situation with my mum - her last kiss to me as she said goodbye after visiting me in hospital with Ruby; our last phonecall just three hous before her catastrophic stroke, how happy she'd been; our last hug; our last fight. Everyday moments in our relationship, forever now memorised as momentous.

And alongside that, all my new firsts with Ruby. Her first smile three months ago, like a rainbow after a storm. Her first giggle, a trickle that has gushed into a flood. And now, her first solid food - her surprise, my delight, her excitement, my satisfaction, from those first tentative tastes of rice, to my freezer bursting with bags of heart shaped frozen cubes of steamed sweet potato, brocolli, carrot, pear and apple. I spoon feed my mum - favourite flavours no longer lighting up her eyes, and I spoon feed my new baby, marvellous mouthfuls of taste, surprising and lighting up her face.

Different ends of the spectrum. Same love.

Grown up love

I'm so proud of them. No, I'm not talking about our girls - although they make me so proud there isn't a blog host or an internet range large enough to hold the stuff I could write about them. No, I'm talking about my other family - my mum and dad and brother. I know this is not normal. We spend most of our lives being embarrassed or pissed off, or more often than not irritated and frustrated with these strange people who are so familiar they're like our skin, yet so alien to us, they feel like a rash on that skin. And I've often felt all of those things.

Like most families, mine has had its fair share of dramas... but despite the sparks and the strifes, we've shared time, willingly and with pleasure. Despite branching out in our own lives, in the last ten years my brother and I have found ourselves coming together to holiday with mum and dad, and strangely our family strengthened instead of weakened as we married and grew. My mum was the central nervous system - the magnet which pulled us all together no matter how far apart we were. And in the awful days and nights after her catastrophic stroke, my dad, my brother and me - supported by my sister-in-law and husband - formed a vigil, a protective presence, a desperate determination that she would never be alone. As the weeks have slowly drifted into months and decisions were made, plans put in place we did so as a family - as she would have wanted. We are the family she taught us to be - strong in support, united in love.

My dad has been outstanding. He is 74 and caring full-time for my mum now. Most men his age couldn't cope on their own for a day. He cares for her - and himself and does it with extraordinary competence. I don't just mean he copes with the house and manages the washing. When I went up to visit last weekend, we had homemade soup for lunch - with homemade bread, and a stupendous homemade fish pie for tea. It was a sunny spring day so we got mum into her wheelchair and wrapped her up and took her round the park at the end of the road. The first crocuses of Spring were waving hello in the grass and we stopped to feel the sun on our faces for a moment. It was almost bearable. Because we were still together.

My mum is in a terrible place, but while she is there she is being wrapped in love. She taught us that and I hope we are making her proud. For I am proud of them - my mum, my dad, and my brother. So proud that my life has been shared with them, through the good times and the bad.

Who's the Mummy?

I've written before about that fuzzy old line that defines (or not) who is the child and who is the parent. In the last four months as my mum lies permanently entangled in her half-life post-stroke, I spoon feed her, change her, wash her and stroke her face, the line has disappeared as my actions mirror exactly those that I perform for my newborn baby. The child and parent in one.

But yesterday the line was broken again by my five year old in that 'slap in the face' sort of way. They say you should never work with animals and children, but I say everyone should have a child's perspective on life kept handy - there is no better way to see the world than through the innocent, uncynical eyes of a child. They have that ability to stand on that box and see inside and out of it. Recently I asked who or what she thought god was. "Is he the police? Because he likes to help people?"

So how do I take her recent golden nugget of observation? I asked her to stop jumping on the sofa and when that was met by a higher leap and a defiant eye I enquired as to who owns the sofa. She slapped that arguement away like a lion brushing a fly off his back with his tail. "Daddy does. He goes out to work. He earns the money. He owns the sofa!"

A very loud silence filled the space between her defiant eye and my horrified face. I decided she could never know the impact of those words. "I own the sofa too."
"No, you do nothing!"
That loud silence was now filled with the cries of sacrifice in my head - I gave up my career for you! I work so hard I can hardly stand some days.. all those organic pureed foods, all those hours of singing Wheels on the Bus, all those days of playing, all those nights of cuddles, ALL FOR NOTHING!!!!!!

Instead I put my sweetest smile on, reinforced with steel, and said in a tone that allowed no misinterpretation of who is the boss, "My sofa. My rules. OFF!"
She deferred to her better judgement and quietly left the room, while I lay stabbed and bleeding by her cutting remarks. That night at 2am, she whispered into my dreams "mummy, I need you" and I lay for a moment, tempted to say, "your dad earns the money, go wake him!" But that would have been childish wouldn't it? Instead, I pulled on my mummy face and cuddled her up and put her back to bed. After all, abject rejection and total confidence annihilation are just part of the (yes, unpaid) job description. But it made me realise that I have to step away from my post-traumatic lethargy of loosing my mum and having a baby at the same time, and reawaken the woman I am - a proud mum, an aspiring novelist and a freelance writer - and get back in the game. My five-year old daughter gave me the pep-talk I needed. The child and parent in one.

Sliding doors of life....

Even before the film Sliding Doors appeared, I often lived parallel lives. As a child, at unhappy times, I would literally live another life in my head, while my real life carried on. (Often this other life involved lots of interaction with Michael J Fox, but that's a whole different blog!).

Then, for many years, my sliding door to a different world stayed shut, the reality of my life good enough to experience in and outside my head - only occassionally would I become an intrepid traveller again as I washed the dishes, or rescued orang utans from the wild as I read The Tiger Who Came to Tea for the 63,839,586th time.

But now, I find myself living parallell lives every day. Not some wild escapism, not some far flung adventure, but simply the imaginings of what would have been, to soften the blow of what is. Three months ago my life changed for ever, for the worse. Since then I have tried to come to terms with loosing the mum I knew and adored, while learning to deal with the reality of a mum who barely knows my name and who will never share my life again. From the second hubby came into my hospital room in the dead of night to tell me my mum had had a massive stroke, my life split into two - the life I was planning and the life I am being forced to live. The last three months as I struggled with a new baby, I have dealt with the reality of waiting to see if my mum would pull through and then deal with having her settled at home, incapable of rational speech, thought or action. In my head though, I have lived through daily phonecalls, regular visits where she would hold my baby in her arms adoring her with song and praise, while sending me off to bed. I lived the experiences I knew we would have had, enjoying a cup of Earl Grey and a Butlers chocolate, showing off Ruby to strangers in the queue, reading stories to the girls. As I stood alone in my kitchen, the phone in my hand but no number to dial, I closed my eyes and pictured her coming off the Belfast train - 100 memories merged into one real moment, the smell of 'Beautiful' greeting me with her warm hug, tales of her conversations with strangers on the seat beside her keeping us company all the way home. As she walked through my front door she would say, "I love coming into this house, " and we would sit down with a cup of tea, children scurrying around us and she would be proclaiming Ruby to be the most beautiful baby she had ever seen. I lived every memory of the past to get me through the present.

And so it was at Christmas. Mum and dad were due to come down to us this year, and like every year, I was going to take Mum to the National Concert Hall, and on Christmas Eve we would all sit down to the Christmas Ham dinner and then wrap ourselves around the fire, wine glasses glistening in light of the flames, stuffing Santa sacks. In the morning, as the girls giddy with Santa surprises would be shouting "Nanna Look!" when her bed-bedraggled head curled round our bedroom door, she would sit on our bed and share their excitement. We would have a walk in the snow and then, a little drunk perhaps, try to produce a christmas dinner in the right order before finding just enough room for a couple of chocolates by the fire at the end of the night. Instead, their car did not arrive this year, bringing bags and bottles of goodies. I didn't book any tickets at the National Concert Hall. I hung up the lights and carefully placed decorations knowing they would never be seen by the person who would appreciate them the most. And when it hurt too much, I slid open the door and lived the version where their car drove up and they bundled into the house laden with love. I heard my mum say the house looked beautiful.

And on Christmas day, as my mum lay in her bed and we pretended to be merry the sliding door jammed and I could no longer soften the blow. This is how it is now. I have to organise our baby's christening knowing my mum won't be there. Plan a family holiday without her. Walk past the phone and not pick it up. But at least for a while yet, I can climb onto the bed beside her, the smell of my Beautiful rubbing onto her skin, and hold her hand. The past and the present still in tune.

a new phase

The doctor warned us this would be a rollercoaster. I've always rather liked exciting rides. Not this one. This is a ride I can't get off. But, after the desperate dips of the last few weeks, we now seem to be on the long straight stretch - and I have no idea if at the end we plummet down a horrible frightening fall, or slowly tantalisingly rise up to new heights. It's a rollercoater ride with blindfolds.

Mum is off the critical list, and has been transferred to Belfast, alert enough to know who we are and what is going on. Great for us to have a little of her back (albeit a silent, parlaysed her) but awful for her as she is trapped inside a redundent body unable to express herself other than through half a smile and two bright blue terrified eyes. On good days, when she recognises me and touches my face, I am strengthened - like my lipstick reward of old when the taste of her lipstick when she kissed me as a child made me feel invinsible. On bad days when she is lost to me, I can hardly muster the strength to keep going. I spoon feed my mother, and come home to feed my children. I rub moisturiser on her drying out skin, and come home and rub oil on my newborn's growing skin. Two ends of the lifecycle spectrum and I am in the middle.

But. I must learn from my parent to be a parent. She taught me to carry on and find the good in the bad. Yesterday my baby smiled at me for the first time, and so did my mum. A new phase begins. A long phase of development and rehabilitation. They both need me..... and those smiles will have to give me the strength. Thank you also for all your good wishes and thoughts - my friends keep me going too.....

The eyes say it all

How can one week change my life so completely? The second photo is the picture I wanted to show the world, to go with the blog I wrote in my hospital room 5 days ago when life was as perfect as it could be. Below is that blog. Then below that, is what happened when my world ended at 3am on Saturday morning, and so the first picture is the one I NEED the world to see.

For so long you have lain on my lungs and my spine, my stomach shoved under my left armpit, my bladder squashed somewhere behind my right buttock. But three days ago, they lifted you out and laid you in my arms, your head laid on my heart. For something so small, babies have an incredible capacity to fill every atom of the world around them - you are not yet three days old, yet I hardly remember life before you. You have filled every breath. My lungs are back in place, but the air in them is bursting with the smell of you. We are cocooned in our little world, the occassional visitor entering our womb of wonder but leaving us again. Your gorgeous ginger dad is delighted - his first excited words: "she's a red-head!" I'm not at all convinced but I'm not going to burst his ginger bubble yet. Daisy and Poppy, your sisters are smitten, and you are already accepting of being pulled and prodded.

I am hostage to your lips, smacking and slapping as they clasp my burgeoning breasts, sucking and searching constantly, one deep blue eye occassionally peeking at me, winking, watchful, wonderful. I'm a bit dazed, my c-section wound curtailing my energy bubble, which is supressed by your feeding needs. So dazed and bewitched am I, the Dr thinks I've been at the drugs cabinet. As he came in to see me we gazed at your perfection. My delireous smile faltered, I gasped, aghast. There was a cut on your head! How had it happened? How could I have been so careless? I was mortified, embarrassed, guilt-ridden. We quickly examined you, concern turning to confusion on his face, confusion turning to comprehension on my face.

"Ah," I said, taking a lick. "That'll be a dollop of my mum's homemade blackberry jelly." My guilty mid-night feast had been discovered.

I am getting to know you, so strange, yet so right. You are mine, and always have been. We were always meant to be and it feels like the final piece of the jigsaw has fitted into place, and now the picture is complete. I made you, but you completed me. Welcome my love, our Ruby Rose - a little gem in our garden of flowergirls.

4 days later- I am in the darkest days of my life. My worst nightmare woke me from my sleep at 3am on Saturday night, 4 days after my daughter was born, when my husband came into my hospital room and told me my lovely mum had had a massive stroke. My beautiful, vibrant mum, the woman who has shared time with me every day of my life, in person or on the phone, held me, comforted me, is lying in a bed looking 150, unable to speak, locked in a silent hell. Her eyes occassionally open and they see me. Sometimes they scream for me to help her. Sometimes they love me so intensly I feel the earth shudder with the force. In one week, I have had a new daughter whose eyes are dark pools of wonder that I have yet to discover, and my mum lies stricken, her eyes deep pools of fear and love - and a lifetime together of knowledge. My devastation is beyond my ability to comprehend, I don't know if the ground will ever be steady again.

In a week my world has transformed forever and two of the people I love most in the world are only open to me with their eyes. Somehow, I have to find the strength to be there for them both - and my girls and family. I have to look into their eyes and bring my baby forward, and bring my mum back.