The girl who lived

The bad news began on the way to the labour room.

“What are my chances of a live baby?” I asked.

“About 30/70”, was the reply.

The date was October 29th, 1996, and I was 26 weeks pregnant.

After the birth she was whisked away to the Neonatal Intensive Care Unit (NICU), and life with a severely premature baby began. Problems on problems, diagnoses on diagnoses, crisis after crisis. I watched other babies go home, while she was transferred to the local children’s hospital.

It seemed that few people thought we would bring this baby home: an urgent baptism was advised, and we only received a handful of cards. But bring her home we did.

As time passed her medical problems eased, but the assessment of her physical and intellectual disabilities became devastating, and there was an assumption that she’d never be able to do anything, and residential was suggested more than once.

Of course, I assumed she’d be able to do everything – with the right interventions. I assumed she would learn to walk and talk, I put her name down for the same schools as her big sister, and I still have the bittersweet letter from her sister’s secondary school offering her a place. We were all wrong. She confounded all our expectations in her own unique way.

She may not walk unaided, but she loved using a walker as a child – no suitable adult one has been found.

She may not talk using words we can distinguish, but she is very vocal and expressive and definitely makes herself understood!

She may need nappies, but she also uses the toilet and is so proud of herself when she does.

She didn’t go to mainstream school, but she went to the best special school in North Dublin (I may be a bit biased).

She is not in paid employment, but is holding her own in a mixed ability transition programme for young disabled adults – no sitting in circles with a groups of docile non-verbal adults in wheelchairs listening to someone strumming a guitar. Not my daughter.

21 successful years.

21 years of smiles, pure love, patience, calmness and joy. Living in the now, no regrets, no malice, no grudges.

The girl who lived, and still lives, and who inspires me every day.

Happy Birthday B!

Smiley, B, 21 today

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And this is how it all began in case you missed it the first time round…

Born Too Soon

It was October 1996 and my then husband and I both had great jobs, a wonderful little girl, and another baby on the way. We has just moved into a beautiful old redbrick house near the City Centre. It needed a a lot of TLC, but we were young, we had plenty of time, didn’t we? Well, we got our answer just three days later when our whole world began to change.

I was having lunch out with a friend from the office when I began to feel that something was not quite right. Very quickly I was bundled into a taxi and packed off to the Maternity Hospital, briefcase in hand. There I was marched past the snaking lines of bottom-shuffling women, who I don’t think were too impressed, and straight in to see the doctor. After a couple of tests, I was told that I was losing my waters and was likely to go into labour within 24 hours. I was 24 weeks pregnant.

I remember crying and friends visiting and then….nothing. I did not go into labour and it was like the hospital did not know what to do with me. I was parked in the prenatal ward and left to wait. I watched other women come and go. For some everything went well and their babies were delivered safely. Other times I saw weeping families and did not dare ask why. Some women who were there when I arrived were still there when I left: some spent most of their pregnancy walking the hospital corridors. I made one very good friend who arrived on the ward during my second week there and we are still in touch today.

Meantime my hormones were in overdrive and I did weird things. For some strange reason the hospital catering staff only served tea, but there were two coffee machines. One dark morning, both were not working, and I went back to bed, pulled the curtains and refused to come out, until someone got me a mug of coffee. I missed my other daughter horribly, and very quickly decided that one hour a day visiting was not enough – so I negotiated day release! I only lived a 5 minute drive from the hospital so they agreed that I could go home in the afternoons once the baby seemed to be okay. Just in case you were wondering: I was a public patient and all the care up until I went into labour was fine: I was regularly checked, I was given the most disgusting injections ever to mature the baby’s lungs, and the staff were supportive and helpful.

On the second Friday there were signs that things were starting to happen and an infection was mentioned. For whatever reason, I don’t remember being given any medication for this. Soon after I started to feel mild pains – and so did my friend – and she kept my sanity intact as we struggled through the weekend together. On Saturday I asked to be checked again, but was told that I was not in labour, same on Sunday, same on Monday. The SHO (Senior House Officer) checked me on Monday morning and said again that nothing was happening. Pains continued and sleep became a distant memory. By Monday night I was miserably tired and almost felt abandoned when my friend was wheeled down to the labour ward by the SHO. So some pethidine was prescribed, and it made me feel a lot calmer. I just lay and listened to music with my eyes closed. Of course the staff assumed I was sleeping. But the pains continued to get stronger and about 3am I called for help. I was checked and suddenly people started running around, finally they were admitting that I was in labour.

Initially everything seemed to be going well, then things started to go wrong, you could see the worried faces, but as there is no agreement over what happened, all I can say is that the consultant was called in the middle of the night, no caesarean was performed, and the SHO apologised for what happened.

By the time my baby was born, there was a whole team of people in the room waiting to work on her. The shocking thing was the silence, there was no new born cry, my baby was just whisked away. “Is it alive?” I asked… and it seemed a long time before I got an answer.

Failure To Thrive

My baby weighed 875gms (1lb 15 ozs) and her Apgar scores were fairly good considering, but she was rushed straight to the NICU. Everyone left the delivery room. The drama was over, but I was still in shock. I went for a shower – the upside of no epidural – and then up to the ward. Seven pair of curious eyes looked at me as I walked in with no baby. I went to the bed, pulled the curtains, and prayed for sleep.

There was one person that I was very happy to see – my friend from the pre-natal ward, whose baby was also in the NICU. And so we went down together to see them. B was on an open incubator, she was so thin and tiny, not like a baby at all.  I couldn’t touch her, I couldn’t hold her, I couldn’t help her in any way. I felt sooo useless, yet I knew that I totally loved this baby with everything I had and I just willed her to live.

NICU was a confusing scary place.  very time an alarm went off I would panic, thinking that my child was in danger, while the staff were more relaxed. And I soon realised that alarms sounded almost continuously – you just had to stay calm. There was a whole new language to learn: apnoea monitors, sats (as in oxygen) monitors, electrolyte levels, feeding tubes. There were procedures to get used to, visiting times and the *joys* of the milk expressing room.  One thing did stand out. On the label with all her details was the phrase ‘premature footling breech birth’. I’d never heard of this before, and it was only later that I discovered the significance.

I went home after a short sleep, and fell into a new routine of home and hospital – work long forgotten.The days passed in a blur. There was an early morning phone call when things went wrong, she had a bleed, but there was no noticeable change in her. I cried, but none of it made any real sense, even after reading all the leaflets we were given. Had I done something that could have caused this? At 3 months pregnant I’d accidentally drank some day old milk in my coffee. Could that have affected her development? Or what about the sprained ankle a month later?

My eldest daughter was in shock as well but seemed to adjust faster than her parents. She was given a colouring book for siblings of premature babies, and from the very start she made a big fuss of her little sister. In those days siblings were allowed into NICU and she would sing and talk to B – she even asked for an incubator for her dolls for Christmas. Santa did not manage to find one, but he did get her a doll-sized set of syringes and feeding tubes.

Days turned into weeks, and I watched the other babies pass out my daughter: they were promoted to a lower dependency room and my friend’s baby went home. We weren’t really told why B was still in NICU, just that she wasn’t thriving. There was only one thing obviously wrong: her right hand was twisted, but we could live with a damaged hand. We were just so glad that she was alive.

Around this time, we were called to a meeting with a neurologist. Most of what she said went straight over my head. I was just so tired and scared for my little baby. The neurologist mentioned cerebral palsy, in a very casual way as I recall. She just dropped it into the conversation. Again it made no sense. All I knew about cerebral palsy was the film My Left Foot, and surely B wasn’t like that.

In the meantime I had to plan for Christmas. It needed to be special for both of my children. Santa even found his way to B’s incubator and left a little teddy for her. I bought the smallest Christmas dress in the whole of Dublin –  it was for a 5lb baby and reached nearly to her ankles. We all visited, and took turns in holding her carefully, to avoid dislodging all the tubes and pipes: she was still so small and fragile.

Foolishly I made a pact with, well whoever is listening up there, that if B reached 3lbs by Christmas Day, then everything would be okay.  Sadly, she didn’t….

Living in the Hospital

After Christmas, everything began to look more hopeful. B was promoted from intensive care to high dependency, and began to feed and take bottles – my milk dried up after 6 weeks so breast-feeding was not an option. She still had breathing problems, heart irregularities, possible sight problems, and electrolyte imbalances, but apart from that, all seemed to be going well. Three weeks later she was moved to the Paediatric Unit, usually the last stop before home, where babies get used to a routine of sleeping and feeding. But not my daughter. New problems emerged. Spiky temperatures that did not respond to antibiotics. Wet nappies but mild dehydration. She was so small and placid that I missed these signs, I was not aware that anything was wrong. But I have to try not to think about how much she might have been suffering: she would have been dehydrating between feeds, how horrible is that for a tiny baby? It seems that the nursing staff were baffled too. It took a weekend locum to spot the symptoms of a rare and dangerous condition – diabetes insipidus – and within hours she was transferred to the local children’s hospital. I don’t know who the locum was, but she probably saved B’s life, or at least prevented her disabilities from getting worse.

And so began two years when the local children’s hospital became our second home. During that time B’s life hung in the balance many many times and we never strayed more than a 30 minute drive from the hospital. I don’t think I could say a bad word against the place. Her consultant always looked on the bright side – “just don’t let her drink too many pints of Guinness when she’s older, and she’ll be fine,” – and worked with me to bypass hospital admin: he let me type up urgent letters and faxes. He would sign and stamp them and I would get them in the post. Even now she is remembered by hospital staff and on the very rare occasion that we visited A&E in later years, someone always came down to say hello.

The ward was a narrow corridor with lots of tiny rooms, one for each child. Room for a cot, a chair, a washhand basin and little more. Utilitarian, they made me think of monk’s cells. It is the sound of the ward that I will always remember: it was never quiet. Even when the babies stopped crying, there would always be the beep beep beep of the equipment, the urgent alarms on the sats monitors*, the whoooosh of feeding and suction machines, and the low murmur of nurses’ voices.

The saddest part was that some of the babies had no visitors. Perhaps their parents found the problems facing them were too overwhelming. I never knew:  it was not spoken about.

But even with all the fear and worry, for me it was a place of hope. A place of transition. Another step on the long road home.

For two months the wonderful doctors and nurses battled to stabilise our tiny baby. Bloods were taken almost every day, until she looked like a junkie and became terrified of anyone in a white coat. She enjoyed her bottles, but problems with reflux and breathing were on-going, and I still remember the day when she choked on her milk and I screamed as she turned purple in my arms. Staff came running from all directions and whisked her off to be resuscitated. I have never been so afraid in my life and my eldest daughter had to go home with her play-school teacher that day as I was in no fit state to drive.

Yet at the end of March it was decided that we could try and manage her at home. Lots of training was provided, and a huge box of equipment and medications. Everything had to be carefully recorded and monitored, including her input (everything she drank) and output (wee and sick) and I had to weigh her every day.

I was so happy to have her at home and took her out everywhere in the pram and proudly showed her off, even though she looked a little odd, with her huge head and her tiny arms and legs. She was happy too, and she showed it: a few days after she came home I was cuddling her in the rocking chair after a feed when she looked up at me, opened her eyes wide and the most glorious smile lit up her face. I burst into tears. I had not known if she would ever smile, so it was just amazing. Once I stopped crying I picked up the phone and rang my Mum. Then I cried again!  In that moment I really believed that everything was going to to be fine….

And, of course, it was.

 

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Reasons to be cheerful 26.10.17

I’m still digging my way out of the disability trenches here, but I’m confident we’re on our way back to our version of normal life. So that’s my first reason to be cheerful. Getting us there – on top of everything else – is keeping me very busy indeed, so I only have a few reasons to be cheerful this week…

…I’m continuing with my #onedailypositive Instagram posts and they really help to lift my mood. As you can see, they include a celebration of all things Halloween, getting to my Zumba class again, and a new housing development that looks interesting as it offers the tantalising prospect of a home that would be totally accessible for my disabled daughter, and the chance for me to sleep in a bedroom instead of the kitchen!

#onedailypositive #R2BC 27.10.17

…I am getting good emotional and practical support from our much maligned disability services.

…Another young adult on B’s day programme has befriended her, and was helping her to play the guitar this week: my heart just melted hearing that.

…I made time to straighten my hair for the first time in 6 weeks as a bit of self care, and I hope to get it trimmed soon too.

That’s it for this week. Head over to Lakes Single Mum for more.

 

Ophelia in da house

Outside Ophelia wreaked little damage in our sheltered corner of Dublin – one reason to be cheerful this week – but inside the storms have continued. I’ve battened down the hatches and bought in extra supplies (lots of treats!). Gym membership has been suspended, running plans put on hold, and even my disabled daughter’s 21st birthday party will now be a low key affair. It is scary how one storm can threaten to destroy so much, and all you can do is look for help, sit tight and hang on.

Sorry for the lack of cheerfulness there, but for me, these weekly posts are also little updates on our lives. And there are some reasons to be cheerful too:

…A job was tweeted at me. I may not be in a position to do anything about it, but it was a real boost that someone thought I would be a suitable candidate.

…I’ve begun a #onedailypositive post on Instagram to help me get through this – I borrowed the idea from fellow blogger Chickenruby.

#OneDailyPositive

…A huge reaction to an old post I revamped for #WorldMenopauseDay.

…Christmas treats like these in the shops, and now in my house too!

Tesco Salted Caramel Nut Collection

…More therapeutic walks with wonderful rewards, like this view from Bray Head in Co. Wicklow.

View from Bray Head

So that’s it for this week, head over to Lakes Single Mum for more.

 

Why middle aged women wear cardigans

Today is #WorldMenopauseDay and I consider myself an armchair expert as I’ve been stuck in this unpleasant life stage for MORE THAN TEN YEARS! Don’t worry, dear reader, this only happens to a very small number of women.

Anyway, moving swiftly on, I’m sharing something I wrote elsewhere, with a few new additions. I hope it doesn’t scare you too much…

You see the menopause is a bit like childbirth, but without the possibility of a baby once you’re done. Some sail through it with no symptoms and no problems. Some stoical women just get on with life. Some are saved by HRT. Some swear by this potion, or that regime. The rest of us just drink wine. Even though we know it makes our symptoms worse.

Possible Symptoms

(These have been most of mine, I’m sure there are many, many more. One of my friends just blames everything on the menopause. It’s easier that way)

…Severe headaches

…Aching joints

…Night sweats

…Exhaustion

…Confusion

…Irritability

…Anxiety

…Depression

…Memory Loss

…Wrinkles

…Weight Gain

…The Hot Flush.  Queen of all the symptoms.

They will remind you of labour contractions, as they build like a wave…

1. You start to feel irritable.

2. Your ailments become ten times worse.

3. You begin to feel dizzy.

4. You have to stop or slow what you are doing.

5.  You can’t think, you just have to try and breathe through it.

6. You start to heat up, it prickles and burns.  Then you start to sweat.  A scarlet flush may creep up from your chest.

7. Just when you think you can’t take any more, it all fades away.  Until the next one.  Which might be 10 minutes later.

The pluses

It took me a long time to think of these…

…Bigger boobs (whether you want them or not!)

…No more periods.

…A final farewell to spot cream.

…No more fiddling around with bits of rubber.  Or whatever it is you use.  Except you can’t do that immediately, or you could end up with a ‘change of life’ baby.  It does happen apparently.

…You can do as you please, and dress as you like.  Believe me, unless you’re Sharon Stone no-one will care any more (with the possible exception of any kids you may have), and there’s a certain freedom in that.  Time to embrace your inner eccentric!

What you can do

Well I tried everything.  HRT was wonderful, but did not agree with me.  I spent a small fortune on fancy supplements and special foods, none of which made any difference at all.  In desperation I even bought a ‘magic’ magnet that you put in your knickers….what was I thinking?

What does help

HRT: a miracle for some.

Exercise: even though you won’t feel much like it.

A healthy diet: sounds boring, but you’ll probably want to eat more healthily – munch on a burger and it will sit like a rock in your stomach, weighing you down and making you feel worse.

Friends: more important than ever.

Laughter: you just have to laugh at it all.


A little of what you fancy: whether that’s wine, chocolate or crochet.  Anything to keep sane and provide a little distraction.

The great outdoors: perhaps that is why gardening is so popular with older women?  More than ever I crave fresh air and sunshine.

Antidepressants: Sometimes these really do make a difference.

Makeup: the long lasting stuff

Ice packs: the highlight of House of Cards for me was when Claire stuck her head in the freezer as she felt the heat rising.

Clothing: Denim and black hide a multitude of sweaty patches! So do patterns.  Avoid flimsy fabrics and invest in cardigans and anything else you can wriggle out of quickly!

Breathe: Learn to breathe through the hot flushes, and that will stop you panicking. 

There are many people who harp on about the menopause being natural.  So are lots of other horrible things: it doesn’t mean we have to put up with them.

As for me? Well I keep reminding myself that while the menopause is annoying, embarrassing and exhausting, it’s not a disease and it’s not going to kill me, so things could be a lot worse. I’ve managed to shift most of the weight gain through diet and exercise, and some of the other symptoms have lessened over time, apart from the hot flushes. In the meantime, I will just keep adding to my collection of cardigans…

What’s A&E REALLY like?

The media coverage of the A&E crisis meant that I’d begun saying I’d rather die at home than go there. It sounded like my idea of hell.

So it was with much trepidation that I headed to that exact place on Friday morning with a patient.

Imagine my surprise when I arrived to a quiet, clean and half empty room. All was calm, and we were able to sign in straight away. They forgave the lack of a GP letter, and told us we would be seen as soon as possible.

We we’re triaged after about 15 minutes.

Then the wait began.

Would it be 1 hour, or 48? Who knew?

I was barely able to use my phone, so I spent most of the morning observing those around me: the family chatting and laughing in the back row, the young woman talking loudly on her phone and sharing the details of her life with the rest of us too, one person in tears, and another asked to leave and told to visit her GP instead. Visitors wandering in and out of the door, stressed going out, smoky smelling when they returned.

Gradually the seats filled up and you could feel the stress building in the room. Some – just a few – were called through, and did not return.

After three hours I was getting antsy, from lack of information and lack of coffee. Perhaps we’d been forgotten….

I don’t use A&E, so I was unsure of the etiquette. Can you ask where you are in the queue? Or is that just using up valuable staff time?

Just as I was about to try it, the patient’s name was called.

Off we went through the double doors.

First stop was the emergency consultant. The story was told, tests were done. Then more waiting.

Then we met with a specialist in a consulting room. More conversations followed, a plan was prepared, and finally, FINALLY, we were able to pop down to the cafe and get some coffee.

After 8 hours, we were allowed home.

The day brought into sharp focus the fragility of my support system, and I am hugely grateful to everyone who provided practical help and on-line support too.

It also made me wonder about simple changes that could surely make the A&E experience much less stressful.

Like a sandwich trolley or mobile shop that could visit every hour with coffee, tea and healthy food (not like the crap in the vending machines) as well as other useful items like tissues and newspapers.

And why oh why has no one invented an airport style electronic update board – surely everyone could be given a number when they arrive, and then being able to track their place in the queue would alleviate some of the stress? If it works at busy pedestrian crossings, surely it could work in A&E?

Saying all that, the staff actually were as lovely and caring as everyone says, and my opinion of A&E has improved a little. My fear of being taken there has reduced. But then we didn’t head down there on a Saturday night…

 

Reasons to be cheerful 12.10.17

I cannot tell you how badly I need to find reasons to be cheerful this week, and yet when you look for them, they are always there…

A weekend so packed with activities that there was no time for my disabled daughter B to watch her favourite Britney DVD. I can’t say I minded too much…

Saturday began with another Rabbits and Runners Event in Malahide. This volunteer group provides supported walks and runs for children and young adults with special needs, disabilities and autism.

Rabbits and RUnners

Then there was drama, closely followed by the Rainbow Junior Arch Club.

Sunday included a little light shopping in the morning followed by a trip to the Busker Fleadh, a free event (we love those!) in nearby Smithfield plaza with a huge variety of musical performances. B loved it, of course 😍😍 especially as we met one of her long time friends…

The Sunday Times book section is one of my favourite reasons for getting the Sunday papers – I never get around to reading most of the books that sounds interesting, but I learn so much from reading the reviews, which often include fascinating anecdotes about every subject under the sun.

More walking with one of my other children means a few more photos like this one and happy memories of beautiful places around Dublin.

Rush

Finally on Tuesday I managed to get to most of my Zumba class, good for my mood, brain and pocket: because it’s free!

So those are my reasons to be cheerful for this week, hope you have some too, and head over to Lakes Single Mum for more.

#Budget18 – Loose Change or No Change

I didn’t listen to the budget, I can’t stand the usual self congratulation on apparent economic achievements that rarely seem to improve family life here.

My disabled daughter will be better off by €5 a week, as she will benefit from an increase in the disability allowance. That will probably be swallowed up by her contribution to the household energy budget, as electricity and gas prices are forecast to increase substantially in the next few months.

Apart from the €5 loose change, there was very little in the budget for disabled adults.

To find out the details, I watched a video issued by the Irish Minister for Disability. He’s getting an extra €75 million, and his stated priorities are emergency places, respite places and ‘day care’ for school leavers with intellectual disabilities. Also the upcoming Justice Budget will apparently include enough funding for the Decision Support Service for disabled people. None of these announcements fills me with joy.

Currently my severely disabled daughter B has a great adult day programme of activities, but it is only guaranteed for another 12 months.  The Minister is promising more adult ‘day care’. Excuse me? My daughter does not need an adult crèche, Minister. That may have been a slip of the tongue, but it shows the mind set that is out there. A mind set that HAS to change if disabled people are to be valued as equal members of society.

So no change to that worry.

Emergency places are welcome, but for all the wrong reasons. They are the last resort to prevent adults with disabilities ending up on the streets if their carers die before them. Ideally there should be life time planning with a gradual transition from family home to some kind of independent living. The spectre of ’emergency’ placements means ripping people from their family homes, from everyone and everything they know and putting them in the care of strangers. I dread to think what that would do to my daughter, who would not understand why such a terrible thing was happening.

In the current situation more respite places would be welcome. But based on past policy decisions, it is unlikely that suitable places for those with complex needs like my daughter will be developed. She has had no respite for years. She needs it. She needs to feel safe sleeping away from home, and confident that others can meet her needs. For me, lack of respite means I’m missing an important disability conference next week and the first wedding on my side of the family for 30 years in early 2018. And most family carers would have similar stories to tell.

So probably no change there either.

On the decision-making service, I understand how important that is for most disabled people, but I’m not convinced that it will improve my daughter’s life given her lack of communications skills – instead I see it taking up time that could be better spent actually doing activities that she enjoys.

No positive change there either.

So excuse me if I’m not dancing with joy this morning. My daughter received a bit of loose change, but no real change for her, or for other adults with disabilities.

 

The week my daughter broke Twitter

Me and B

Obviously we’re not talking about Obama-style twitter breaking, but I’ve never experienced anything like it.

It was just an innocent little tweet looking for some advice. I thought I’d get maybe half a dozen retweets, and hopefully a few replies.

This is what happened:

Breaking Twitter

It even trended for a while, and I was actually quite nervous about a tweet of mine being seen by so many people, and nearly deleted it. But so far I’m glad I didn’t, and I have to say a huge thank you to everyone who got behind my dream for my daughter’s birthday.

With all the bad press given to social media, wouldn’t the response restore your faith in humanity?

I received lots of offers, advice, ideas and information. So many that I’m still busy with replies, messages and phone calls to choose the best option.

Then all I have to do is organise a spectacular party to match the fabulous dress and fancy wheelchair costume. And that’s a very cheerful prospect indeed!

Linking up as usual with Reasons to be Cheerful, hosted this month by Lakes Single Mum.

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