Are you shocked at the idea of sleeping in the kitchen?

This is a post about middle class privilege, I accept that. But life is not always easy even when you’re not homeless, or desperately trying to find somewhere safe, secure and affordable in the private rented sector.

I know how lucky I am, but I do find life difficult, and it’s only going to get harder as I hurtle towards retirement age. Oh wait, I’m a lone parent carer, so there will be no retirement, and no State pension either.

My current home is no longer manageable, and I got very excited last summer when I saw that a development of new bungalows was being built within commuting distance of my disabled daughter’s adult service. I got to see a sneak preview of how the interiors are likely to look yesterday, and unlike my current home, everything will be flat, spacious, open plan with wide doors, warm, secure, easy to clean and maintain. I also got told that all the bungalows in the development have been appropriated by the local council for social and affordable housing, so I can’t buy one. Do you know how often new reasonably affordable bungalows are built in the Dublin area? Almost never. I totally understand that the people on the local housing list are in greater need than we are, but does the local council need ALL the bungalows? Because if something doesn’t change I’m going to burnout eventually and then the State WILL be left with a hefty annual bill for my children’s care. But does anyone join the dots? It seems not.

To rub salt in the wound, there’s an article doing the rounds today about the 13 most depressing rental properties in Dublin that highlights the unacceptability of sleeping on a sofa bed in the kitchen.

Because that’s what I have to do now. To make sure I wake up and get up to meet my daughter’s needs during the night. And I was very grateful to the friend from whom I bought the sofa bed too.

But it’s not really sustainable long term. Or perhaps you think it is?

After all, I’m only a carer.

new home, disability
B was very taken with the house we saw yesterday that illustrated what the bungalows would be like

 

 

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Scraping the barrel

We need help. We’re not coping. But with one exception, we’re being ignored. Just like so many other families with disabled dependents. I’m sure I’ll manage to keep going, so long as the universe doesn’t throw any more curved balls in my direction. And perhaps so long as I keep doing my reasons to be cheerful and reminding myself of the good things, even when they’re very small. So here goes:

…My annual panic over the fire warning about Christmas trees is finally solved thanks to finding a shop selling stands with a built in bucket for watering (from Woodies DIY if you’re interested and live in Ireland).

…A nasty looking ‘mole’ turned out to be something much rarer – and completely benign – when I got the biopsy results this week. It was actually a bad reaction to an insect bite!

…With a bit of help, I’ve cleaned up the house for Christmas.

…A simple trip to a local shopping centre was magical for my disabled daughter, she was overjoyed with the Christmas music, the lights and sparkly decorations. Her happiness was infectious.

…For the first time in years, I made an apple pie – on request – and apparently it was good.

Check out Lakes Single Mum for more reasons to be cheerful, and I hope you have a good week xx

R2BC-badge-2016-1024x683

 

Feelings

It’s almost 6 o’clock on a shivery dark Friday evening, but I’m getting a few hours break from most of the crises piling up, like a stone wall I can’t climb over. Right now, I’m can lean back in its shelter and try to get my breath back. Try to breathe evenly, to feel the stony weight leave my shoulders for a while.

I’ve been firefighting without a real break for 2 1/2 months, and its taken a toll. Things are slipping, things haven’t been done, people forgotten, time has rushed by, and also dragged, as little progress has been made in so many areas. So many things are still the same. And I’m so so tired.

I was called to a meeting about me last week. I thought I was going to be admonished, perhaps for not being a stricter mother. Instead it was supposed to give me support and a space to talk about my feelings. But I couldn’t think what to say. I think my feelings are buried very very deep at this stage, and even I can’t remember where. Mostly I just feel numb. It gets me through. Any other feelings just get in the way of functioning. Especially the angry ones! Therefore they are not useful and get stomped on as quickly as I can manage.

Except now?

I’m going to have to get back to the chores in a minute, but I’ve realized I am feeling something right now. I’m feeling lighter. And that has to be good, right?

Stress, steps, signing up and a surprise

Stress

Let’s just sprint through the bad stuff: life is still stupidly stressful: even my eating and sleeping is now affected (this almost never happens!). I’m lucky that I’ve been offered counselling, but emotional support will not improve things, it’s action and solutions that I need, so I turned it down.

What to do? Well when you can’t fix the big problems, you take control of the little ones.

I may not be able to fix the house, but I can mop the floor.

I may not be able to get all the services that my children need, but I can help them make positive progress every day.

I may not be on top of the special needs and household paperwork, but I’m keeping the lights on at least.

I may not be able to go to the gym right now, but I’m running to appointments if I’m the only person attending.

I may have just tripped in the hall due to tiredness and stress, but my parachute training kicked in, and I fell beautifully and only have cuts and bruises to show for it!

I may feel that I can’t cope with it all, but there’s always self care – today I plan to combine an essential trip to the pharmacy with a nose around the new local M&S food store that opens today 😍

Steps

Christmas came early this week: Back in July I backed a Kickstarter project for a budget smart/fitness watch and my ‘gift’ arrived a few days ago and since I needed a boost, I opened it then and there. Of course I haven’t had time to suss out exactly how it all works, but I am enjoying some features: having the weather on my wrist, being able to turn off alarms without dashing for my phone, and most of all the revelations about the amount of activity I do: It seems I manage more than 20,000 steps every day without doing very much at all. I did wonder if the watch was counting seconds not steps, but the numbers do stop increasing if I sit down. So every time I think I’m being lazy, all I have to do is look at my watch and it gives me a little boost.

Ticwatch S

Signing Up

Yes I know I have ‘a lot on my plate’, but when I was invited to a meeting and asked to join a Human Rights Committee that only meets 6 times a year, I couldn’t say no. I was like a puppy with a new toy at the first meeting because it will let me use my skills, do something I’m good at, and give me the chance to feel useful again.

The Surprise

After taking part in the launch of the debut novel by writer and blogger Nicola Cassidy, it was a wonderful surprise to get a signed copy of her book December Girl in the post together with a few goodies. So far, this historical novel set in Ireland and London is a joy to read, with a feisty heroine whose story make you want to keep reading. If only I had more free time!

December Girl

So that’s this week’s update and reasons to be cheerful, head over to Mummy from the Heart for more.

 

 

 

 

The Princess Party

On Friday afternoon it was just another ordinary school classroom. Twenty four hours later, it had been transformed into a magical grotto full of light and colour, music and balloons, a candy cart and the sweet smell of cake. A wonderland fit for a princess. My princess. It was finally time to celebrate her 21st birthday.

And celebrate we did. With plenty of music and dancing, a gorgeous cake, family and lots of lots of friends, old and new. There wasn’t even time to take many photos: we were all too busy having fun.

(Most photos have other children in them so cannot be used here)

Why a school, you might be asking? Why not a swanky hotel? Well the school is home to the Rainbow Junior Arch Club, so it is familiar to B and has everything she needs, including a Changing Places Toilet. It meant all the children from the club could easily attend, as well as many former club members who are all grown up now, just like B. And finally because the school said yes to my request and I am very grateful to them for that.

As I wrote last week, with everything else going on at home, I could not have made this happen alone. Once again I asked for help, and once again my friends responded. I won’t name them on here, but they know who they are. And I hope they know how much I appreciate everything they did, from finding my daughter’s costume to making the invitations, to decorating the room and making sure everything ran like clockwork on the day, so I could spend the time  with B, making sure she had the time of her life….

It’s an afternoon I will never forget and the best reason to be cheerful I’ve had in a long long time.

R2BC at Mummy from the Heart 

Celebrating carers who always put others first is a dangerous message

Once again I’m seeing red at the headlines around the Carer of the Year Awards. Always putting others first is not a good long term strategy. I know women who’ve died young because they were too busy caring to get their health needs met, let alone anything else. If you’re a carer for life, as I am, you have to look after your physical, mental and emotional health in order to keep caring without burnout. But these constant media messages about selflessness put huge pressure on carers not to look for help, and relieve society of the guilt they feel about not offering it — with some exceptions, of course.

As I am totally overwhelmed right now, I am going to recycle another old article, that says a bit more on the same subject, with apologies to the organisers and to those who do enjoy these awards.

When you become a carer, everything changes. Not just your own life, but society’s expectations too. No matter what you were like before, you are immediately obliged to take on saintly qualities and become endlessly patient, loving, energetic, unselfish, undemanding and uncomplaining, with a beatific smile permanently plastered on your face. Don’t believe me? Look at the Carer of the Year Awards. Now obviously I have huge admiration for the winners, they manage the most challenging situations and care for the longest number of years. But what do these awards say to the rest of us?

Keep your head down, keep caring and if things get really tough, you might get a day out at an awards ceremony in 30 years time.

Don’t complain, don’t look for help, there’s many people who are much more deserving than you.

You made it through the day? Congratulations on “surviving”.

Having special children makes a family special (well actually it’s made me cross, fat, sick and tired).

You think your life is difficult? Well guess what, it’s going to get harder and you will still be expected to keep going.

“I’ve learned that you can keep going long after you think you can’t.” Except when you actually can’t.

Yep, these are the messages that we hear all the time. They may help carers to keep going, they may find them inspiring. I understand that, I really do. But sometimes they just make me feel like screaming…

In the words of the song, Is That All There Is?

Is getting through another day all that we have to look forward to? Well I think that carers deserve better than that. I want more, both for me and for the other carers that I know. Somewhere out there are carers whose lives do not resemble those of the award winners. I want to hear about them.

Where are the stories of carers who have made a conventional success of their lives? 
Who have careers, who set up businesses? 
Who live in nice homes, enjoy hobbies and nights out, have great respite?
Whose children are settled in quality residential care, and who don’t feel guilty about it and are not ashamed to say so as they know that they’ve made the best decision for their family.
Who go on holidays, for goodness sake? 

Yep, maybe they needed a lot of help to achieve these things. So let’s celebrate the people who helped them. The services that make a difference. Let’s tell the world that many carers need that help, very very badly. They are not bad people. Everyone has a breaking point. Congratulations if you haven’t reached yours yet. But do not judge those who have. It could be you tomorrow.

 

 

Unpalatable truths

I was so sure I was on the right path. The future I had sketched out for myself and my disabled daughter was starting to take shape in real life.

Perhaps planning and hoping too much is a bad idea?

The ongoing two month crisis here and the gentle comments made to me this week mean I have to face some unpalatable truths, and reevaluate everything about this family’s future. So I’m beginning to sketch out alternative plans and reaching out for advice, but as I no longer write about all the issues affecting this family, I can’t tell you any more on here.

So I thought I had no reasons to be cheerful this week, but there at least some reasons to be grateful…

…I got to most of my Zumba class again – the one chance I get at the moment to completely switch off for a while.

…That hour between 5 and 6 pm when my eldest daughter arrives home from work, and we talk about normal stuff and laugh at the crazy bits too.

…My friends who rallied round to help with a very special event happening later today. It is not an exaggeration to say I wouldn’t have managed it alone. THANK YOU SO MUCH.

R2BC at Mummy from the Heart 

What I would tell that frightened new mum of a 26 week baby

I know you’re shocked and stunned, I know this seems completely unreal. I know you think this is a nightmare and you’re going to wake up and find that you’re still pregnant.

Preemie, #WorldPrematurityDay , 26 weeker,

You need to know. This is real.

That tiny scrap attached to tubes and monitors that ring and beep and flash. That’s your newborn baby. And yes she’s fighting for her life. But she’s going to make it.

Your life is going to change utterly, but in many ways it will be so much better, and you will change too. You will face challenges that you never expected and find strength that you never knew you had. I won’t lie to you: there will be battles ahead. With an indifferent state and an uncaring bureaucracy. But you will find help, you will find support, and most of all you will find friends, old friends who stay in your life and new friends in the same situation.

Her suffering in the hospital will end, because she will be stabilised and they will find a combination of medicines to treat her. Those bitter tears you cried with despair at not knowing how to help your daughter will be replaced with smiles of joy when she smiles at you every morning. You have the internet now, and there is lots of advice and support groups that can help. But you still might try desperate treatments. You might visit healers who live on remote mountain tops, travel abroad with a hired oxygen machine for specialist help, consult every type of therapist until you can’t take any more disappointment. You look at adults with cerebral palsy and wonder which one your daughter will resemble. Do not worry, she will look like herself.

Are you even wondering what you want for her on her 21st birthday, right now when all you want is for her to live?

To be happy?
To fulfil her potential?
To be kind and affectionate?
To be patient?
To be sociable?
To enjoy life?
To live the life of a young woman and enjoy music and dancing, shopping and friends?

She is and she will.

It’s going to be different, but it’s going to be okay.

B, all grown up, premature baby, #WorldPrematurityDay

(This is a revamped old post)

 

Reasons to be cheerful – the 21st birthday edition

I’m not feeling particularly cheerful as I type this at 5am, cradling my dying phone in my palm, and listening to the latest set of worrying noises from the world’s weirdest fridge, and wondering why my disabled daughter cannot sleep. But I know I have much to be grateful for – all the usual things: I still seem to be healthy, solvent and secure. Not so much my children, but helping to make that happen for them is part of my role, isn’t it? Though it’s a lot harder than you’d think from all those photos of gooey eyed babies and happy families. But I know they exist too, in real life, and, like a drowning woman, I cling on to the raft of success stories, in my battle to escape from going under, as well as the good things in my own life.

So here’s two week’s worth of cheerful news:

Reasons to be cheerful 9.11.17

My disabled daughter B celebrated her 21st birthday – the celebrations at home were low key, but she got some gorgeous presents, including a night out at the cabaret spectacular Light It Up, which gave me the welcome opportunity to dress up for once!

A shopping trip to help B spend her birthday money – mostly buying clothing and wheelchair accessories as I’m trying to wean myself off bringing her out in her (practical) buggy as she is fully grown up now. Her fabulous new waterproof GaryB wheelchair blanket should help with that transition.

Another Parkrun with B and we both made more friends on the way round.

It’s only taken 21 years, but I finally managed to shower B on my own on a weekday morning and have her completely ready when her bus arrived (her morning help was on holiday for the week). This was only possible because I didn’t have to get anyone else out of the house that morning…

Hopefully you can find lots of reasons to be cheerful this week too.

R2BC at Mummy from the Heart 

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

—————————–

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.