Rebecca Walz: Okihiro Syndrome: “It’s not a disability, it’s just a difference”.

(photographs and image courtesy of Rebecca Walz)

Meeting others who can pass on non-judgemental advice and humorous anecdotes from their personal experiences is a welcome treat.

Every now and again, we meet people like Rebecca Walz, who astound us for all the right reasons.

After meeting Rebecca, I couldn’t help but feel inspired by her positivity, resilience and her wicked sense of humour.

Rebecca Walz speaks about the rare disorder, Okihiro Syndrome

Originally from Stuttgart, Rebecca has lived in Ireland for ten years and lives in East Cork with her partner, Nicholas and their four-year-old son Caleb. The child care assistant was diagnosed with Okihiro Syndrome. Caleb has also been diagnosed with the condition.

Okihiro Syndrome may also be referred to as Duane radial ray syndrome. It is a rare inherited disorder characterised by impaired control of eye movement (the Duane anomaly) and bone abnormalities in the hands and feet (radial ray malformations).

“My symptoms are the non-functioning thumbs. I was born with thumbs but they were attached to the index finger. When I was eighteen months old, the surgeons in Germany removed the thumbs and turned my index fingers into thumbs. I also have different shaped kidneys and I have hip dysplasia which is most likely part of the syndrome. Doctors don’t really know much about that but I’m in contact with other people in America who have it and some of them have hip dysplasia as well or problems with the end of the spine.”

Living with a limb difference – “We all have something different about us”.

Growing up with a limb difference affected Rebecca. Now, as an adult, she has a different outlook.

“When I was young, I was very conscious about my hands. I used to hide them. Even though you might not see the amount of fingers, you notice that it looks different. My thumbs don’t look like normal thumbs. They don’t move like normal thumbs. I do things differently so I was very self-conscious about that. Now, to be honest, I really don’t care anymore. People can think what they want. What bothers me sometimes is, if people do stare and then they just look away. Just say something. It’s no big deal. I think most people with hand or leg differences don’t have a problem. They’d rather you ask, because, why not? We’re all different. We all have something different about us”.

“I don’t like saying I can’t do it. I just have to do it a different way”.

Rebecca has adapted and found her own ways of doing things.

“I try to do everything that other people do even though, I can’t do the fidget spinners. I don’t have enough webbing space for that. I tried it out but it didn’t work. Generally, I try to do most things. I write differently. I use my baby finger and middle finger for pincer grasp”.

“I adapt and most of the time, I feel I just have to practise it. I don’t like saying I can’t do it. I just have to do it a different way. Like, tying up balloons. When I started my work experience as a childcare assistant in Germany, that was one thing I found really hard, tying up balloons, but I needed to do it so I had to practise harder. I can do most things”.

“The hip dysplasia does affect me because it’s quite painful and I probably will need a hip replacement in time but I’m not thinking about that at the moment.”

Reaching out to others

Because Okihiro Syndrome is so rare, the family do not know of other Irish people with the condition. Via Facebook groups, they stay in contact with two families in Ireland who have children with limb differences. This has been a great support to Rebecca and Nicholas.

“It’s nice, especially when you look for someone, like a surgeon or a doctor. You want some kind of reassurance that there is someone there who can do the surgery fairly well. In Ireland, there seems to be one surgeon at the moment. He operated on Caleb’s hand and he seems to be the main surgeon here so it’s nice to share the information that you have”.

R and C

Caleb the brave

At two years old, Caleb had surgery at Temple Street Hospital on his right hand. Some of Caleb’s symptoms are like Rebecca’s but he also shows symptoms of the Duane anomaly.

“He cannot move his eyes outwards. He has to move his whole head wherever he wants to look. He finds walking stairs very difficult because of the vision. His hands are more affected than mine. His right hand has his radial bone missing, it’s shorter and it curls in and his fingers are stiff and he has no thumb on the right. On the left, he’s like me. They operated on him and made him a thumb out of his index finger.”

Rebecca explained her worries surrounding Caleb’s condition.

“I don’t see him as disabled. I’m not disabled. We’re different but I don’t see it as a disability as such. The health issues that come with it are very worrying.”

“Sometimes I wish someone could tell us that it will be fine but you just don’t know what the future brings. They say he could have autism as well. We are waiting for an assessment. But it’s hard to know, is it caused by the syndrome or not? If someone could tell us that very clearly, that would be nice.”

At four years old, Caleb is not fully aware of his condition. He is like any other pre-school child.

“Caleb doesn’t really notice it as such yet. For him, his dad is the outsider it seems because he’s got five fingers and we have four. He never mentioned it before that he has noticed things like that. Even though he knows. I told him that we have four fingers and that the doctor made him a thumb but he doesn’t seem to care about that.”

“He’s totally into cars. Absolutely obsessed with cars. He is very into teddies at the moment, loves the sand play and the beach and swimming”

Don’t be shy. Just ask

Rebecca wants to encourage people to ask about her limb differences and would like to connect with other Irish people in a similar situation.

“People don’t need to be shy about it. Children are sometimes better. They come straight up and ask straight away but I don’t like when parents say “Hush Hush”. That’s more hurtful than saying, “look, what actually is different about you?” There’s nothing wrong but there is a difference.”

“I would like to know if there are any other people around who we could connect with, even if they just have the same symptoms, not just the same syndrome, so that Caleb doesn’t grow up all on his own. Because I grew up and I never knew anyone with a hand difference and for him, I’d like If he can grow up and see that “Look, it’s ok”. I wish that for him in the future. That being different is ok.”

Rebecca sums up her message beautifully and succinctly.

“It’s not a disability, it’s just a difference.”


Mama Long’s Unguided Guide to Gardening – Part 2

In February, I gave my step by step guide as to how I threw bulbs and seeds into the ground in my garden in the hope that I shall have a summer garden like my late Nana Halpin’s. Her garden was spectacular, year after year.

nana garden

So, here we are, May 8. In March, I took a pick axe to my front lawn in an attempt to dig a humungous flower bed. I must say, I was quite proud of my efforts. 400l of topsoil later, I was ready to plant a few shrubs and dig trenches to toss some seeds and bulbs into. This is where we are in May.

front garden 1

WHAT THE FISH MAN!!!!!! This is NOT what I envisaged in my mind’s eye! And I am not sure what is a weed and what is a flower!!!!!


I think that’s a weed. But I’ll leave it in, just in case.

Every morning, like a geeky Granny, I peer out the window to check the progress of my bulbs growth.


“How’ye lads? Not sure if ye are flowers or aliens?”

Few rocks in the photo there and some loon’s shadow. Ignore them.

So, at least things are growing. Sporadically, yes. Weeds, in places. I am holding on to the hope that by July there will be colour in my garden. Otherwise, I’ll have to go down to the garden centre and buy a truck load of little pot plants and stick them in the ground!

There is one plant that is growing exceptionally well though 🙂

great growing


Ways to cut down on the financial cost of fear in parenting.

I bought one parenting book when I was pregnant. A “ baby bible” of sorts written by a renowned parenting “expert”. I read the first two chapters, flicked through the remainder of the pages anxiously before deciding that the best thing I could do with this “expert advice” was to chuck it in the nearest bin.

I didn’t toss the material aside because I felt I knew better. I knew absolutely nothing about the “correct” way to ensure a baby settles into a good sleeping routine or what’s the best way to ensure a satisfactory belly burp. As I looked at the glossy cover of my now obsolete purchase, I did know that I had succumbed to two things; the power of marketing and fear.

So, I did what all good nerds do. I went to my bookshelf, remembering that I had another book that contained information about “the perfect parent”. This book was to become my go-to guide whenever I felt overwhelmed by the challenges of motherhood.

“Freakonomics” by Steven D. Levitt and Stephen J. Dubner – Chapter 5: “What makes the perfect parent?”


Levitt and Dubner discuss the contradictory advice given by parenting experts and the effect this has on new parents. By the expert sounding so sure of themselves and taking a firm stance on how an issue should be addressed, the expert engages with the reader’s emotions. Levitt and Dubner go on to state that,

“No one is more susceptible to an expert’s fearmongering than a parent. Fear in is fact a major component of the act of parenting”.

Damn right, lads! The fear starts before baby arrives. Fear surrounding labour and meeting baby.

“Will the epidural cross the placenta and affect the baby? What if the baby hates me?”

There’s fear about feeding.

“What if I can’t breast feed? What if I don’t want to breastfeed and people judge me? What if I do want to breast feed and people judge me?”

Don’t forget the health and safety fears.

“We’ll have to bubble wrap all the furniture and move into a bungalow so the baby doesn’t hurt herself! And no more hot drinks for fear of burning small hands!”

Industry smells this fear and senses your credit card vibrating with excitement because the fear is accompanied by the need to show how much you love baby. New fear-filled parents! Welcome to the manipulative and over-priced world of baby equipment.

Need a car seat, of course you do, you can’t leave the hospital without one. The midwife will actually keep the baby in the CUMH until they are old enough or tall enough to sit in a car without a babyseat if you don’t buy the latest, newest model on the market. You could buy other models which meet EU standards and are just as safe but this one is the best for your baby

Decorating the nursery, well, you could buy a chest of drawers from any furniture shop but that won’t reflect the depth of the love you feel for your baby, will it? And look, this one has drawer knobs that are shaped like teddy bears so you will get absolutely no use out of it afterwards.

Out and about, you’re going to need a stroller. You could get an average buggy but you’re not going to be an average parent, are you?. You need a vehicle for your infant that represents your lifestyle. Cup holder for your little one’s babychino. Built in ipad holder. Seventy five gears plus enormous wheels for off-roading terrain. When you arrive at playgroup, you’ll arrive in style and your stroller will need its own parking space.

And it doesn’t stop there. Now, we have to learn how to parent. Thankfully, there are more glossy books available on parenting that contradict each other in their advice that we may purchase at all leading bookstores across the country. Sometimes these parenting experts are on the tv, guiding us on our parenting journey from toddler to teen.

“Set the Skybox to record, for God’s sake! We might need those pearls of wisdom in eight years time when she is ten years old!”

So, as a non-expert, here’s my two cents worth.

When it comes to buying for baby, if you are on a budget, check out and groups on social media that sell preloved baby equipment. If you want to buy new, wait until the end of a season line and buy a new item on sale. If you like an item in a store, compare the price with an online competitor to ensure you are getting the best deal.

Buy the bare essentials for your newborn. People will give you a lot of gifts and a lot of pre-loved items. As old fashioned as it sounds, babies really just want to be fed, dry, warm and loved.

Whichever way you choose to feed baby, breast or bottle, is fine. If you need support while breast feeding, don’t be afraid to ask for it. Grab all the support you need from breast feeding counsellors and parenting groups like Cuidiu. Likewise, if breast-feeding doesn’t work out or if you choose not to breast feed, don’t feel guilty. Do what you feel is right for you and your family.

Seek advice from an expert for matters that affect the health and well-being of your family, such as support from a GP and support groups if you or your partner may be suffering from post natal depression etc. Seek advice when you feel that you are unsure and you could do with some guidance from other supportive parents and from family. They’ll give you advice for free so it will save you a few Euro and you might even get tea and a biscuit with a nice chat.

Above all, believe in yourself and trust your instincts.


Overcrowding in Leeside hospitals: some possible long term side effects

I wrote this article on 18th April 2017. It was published by “The Evening Echo” on 2nd May 2017.

Whilst driving my daughter to creche this morning, I heard a report on the radio about overcrowding at Cork University Hospital. Mary Rose Carroll from the INMO spoke about the lack of capacity and resources at the emergency department at the CUH and stated that a review of how care is being delivered in Cork hospitals needs to be carried out.

This lead me to think about my daughter’s experience in a Cork hospital’s emergency department a few weeks ago. I also began to question the possible long term effects that a failing health care system could have on Irish society.

My two year old daughter fell and hurt her right foot and was unable to stand on it. It was obvious she was in distress so we brought her to SouthDoc that same Saturday evening. The GP explained she may simply have sprained her ankle or there may be a fracture or a broken bone. We were given a referral letter and told to bring her to either of the emergency departments at the CUH or The Mercy. 

From here began a series of unfortunate events. The GP advised that on a Saturday night, the accident and emergency departments would be busy and would be dealing with traumas that may be unsuitable for a young child to be around so it might be better that we wait until Sunday morning.

On a Sunday morning, one would think that my daughter would have been assessed, x-rayed and treated in the space of approximately two hours. Her injury was straight forward and easy to treat.

We spent six and a half hours at the emergency department with a toddler who was tired and sore. She received good care and attention from the staff on duty but it was obvious that the emergency department was under resourced. My daughter left with a support bandage on her leg. We were told that the radiographer did not get a chance to report on whether or not she had a fracture or a break and that we needed to come back with our daughter on Monday morning to be reassessed when the radiographer’s report was available.

On Monday morning, we returned and were told my daughter had a fractured foot and that her leg would need to be set in a cast for three weeks. My two year old daughter waited two days to receive treatment for a straight forward injury.

I was not unhappy with the care my daughter received from the medical professions that we dealt with. They cared for her as best they could with the resources available to them. It seemed to me that there simply weren’t enough medical staff available to treat patients. The emergency department seemed to be running on a skeleton staff who were stretched beyond their limits.

In any organisation, if employees are demotivated and over-stretched, they look elsewhere for work. The medical talent in our country will leave and seek employment opportunities abroad. We may end up in a situation where there is a lack of consistency and continuity of expertise in our health care system.

What concerned me was the expectation that I accept that my child should wait until the next day to go to an emergency department because on a Saturday night, she will probably not be seen. Why did I accept that this was normal or standard?  One could argue that we could have brought her to a private clinic and that she would have been seen and treated within an hour. This does not address the issue. If, as a country, we flood the private health care market, we marginalise those who cannot afford to pay for health treatments. We will become like our neighbours in the U.S., where those who “have” are entitled to lead healthier lives than those who “have not”.

If there is a large increase in the volume of Irish people opting for private health care, waiting lists and treatment times will inevitably increase in the private health care sector. We will simply be shifting the problem from the HSE to private healthcare providers resulting in a rise in the cost of healthcare insurance premiums. The “squeezed middle” may be squashed even further and public hospitals will be under-resourced even further than they are now.

Our experiences raised other questions in my mind. If one of the major training hospitals in Cork City is under resourced, what experiences are people who attend emergency departments in regional hospitals having? How resourced are hospitals in smaller towns across Ireland? Has the health of the people of rural Ireland been forgotten?

 There is no doubt that a review and appropriate actions need to be urgently carried out to help solve the crises in Cork hospitals, and not just for the short term.


“From the farmyard, to fitness, to the catwalk” – my wonderful friend, Catherine.

One of my earliest memories of my friend Catherine is a song we learnt in senior infants in national school. “Two little boys”, by Theodore Morse and Edward Madden. 

“Two little boys had two little toys,

Each had a wooden horse.

Gaily they played, each summer day,

Warriors both of course…”

The song tells the story of two boys who are friends in childhood. Jack breaks the head off his horse so that Joe shares his horse with him, explaining he would never leave him to cry. Years pass and the boys grow to men and go to war. Joe is wounded, falls off his horse and is rescued by Jack. Jack proclaims that he would never leave his childhood friend to die.

Two little girls; ebony hair; blonde curls

Senior infants, St. Michael’s National School, Upper Glanmire, Cork, 1986. Tiny people shuffling on miniature white chairs. On the wall, over the coat hook, our teacher had a picture of a giant with a grizzly beard, his head surrounded by dirty dishes and pots and pans. She told a bunch of five and six year olds a story about how the giant never cleaned his house and everything was dirty and messy and he could never invite people to visit him. She may have been trying to stress the importance of personal hygiene into our ever developing brains, but at five years old, I’m pretty sure I was thinking about asking Catherine a very important question once the bell rand at 2pm.

“Catherine, can we play in your house today? Cos I don’t have a farm. And your Mammy makes nice apple tarts. And can we feed the calves?”

As little girls, we spent hours playing on the farm, feeding the calves, jumping off hay bales, discussing if we took the tractor for a spin up the back field, would we get caught?

At sleep overs, Catherine’s Mum would insist we said our prayers before bed. Kneeling at the bedside, we would giggle uncontrollably while “counting” the number of “Hail Mary’s” we had recited. I can clearly remember Catherine’s Mum exclaiming,

“Catherine, the number seven doesn’t come after the number two! You girls need to say all ten Hail Mary’s. And stop the giggling!”

The fact that Catherine’s Mum was smirking while trying to contain the energy of two nine year old girls made us giggle more.


(Confirmation day – 4 May 1993)

Two teenage girls, paths begin to diverge

Our paths diverged after primary school because we went to different secondary schools. Luckily, we lived close to each other (approximately six fields apart) so on weekends, we would walk halfway to meet each other. One Saturday afternoon, aged fourteen, Catherine was waving at the bottom of the lane that lead to her house. She was giggling already so I knew she had something important to tell me.

“Wait until you see what we got at school on Friday!”, she said

We raced towards her house.

“Tell me what it is! C’mon!, I said.

“No. I’ll have to show you. It’s so funny. C’mon, let’s run faster”, said Catherine.

That Friday, everyone in Catherine’s class had been given a little goodie bag. Catherine had hidden the bag under her bed. Retrieving the bag, we ran into the bathroom and locked the door. Through giggles, Catherine whispered,

“We had a talk on sex and stuff like that at school. Look what the teacher gave us!”

Did we fill the condom up with water and pretend it was a water balloon? No. That was of no interest to two 14 year old girls. Did we discuss that sanitary pads look like nappies for adults? Nope. We were more interested in the bullet shaped piece of cotton that we had delicately placed on a towel on the corner of the bath.

Watch this!”, said Catherine.

She filled a large glass with water and threw it over the tampon. It expanded to about three times its width.

God, that can’t be good for ya! How do you get it out afterwards if it goes that soggy?”, I asked.

Our peals of laughter must have been heard. Catherine’s Mum ascended the stairs, knocked on the door and asked why we had locked ourselves in the bathroom.

“We’re grand Mam. Irene got a thorn stuck in her hand so I’m taking it out with the tweezers”.

Cue more giggling.

Two young women, making their own ways in life

In my early twenties, I moved abroad and started to build a life overseas. Whilst I didn’t speak to Catherine every week or every month, I never worried that we were drifting apart. I knew that when I came home to visit that we would pick up where we had left off and the giggling would recommence. So, what was my friend doing whilst I was away?

Catherine’s fitness journey

My fitness journey began about eight years ago when I was fed up of smoking and eating junk most days of the week. My fiancé, Niall, encouraged me to begin slowly and with his help we began walking regularly. This gradually moved to light jogging. It was a slow process but with an improved diet and no cigarettes, I began to feel better and fitter day by day.

The next stage began when I started to include a walk every day for half hour on my lunch break. I was determined to live a healthier lifestyle. I gradually built up my fitness and this lead me to have the confidence to join a local gym. At the time, I would have laughed at you if you had told me I would go on to do two relay marathons, three half marathons and five full marathons .

Niall and I began to compete in local road races. We ran most weekends and this lead us to run as a relay team in the Cork marathon in 2010. I was hooked! The crowd were amazing and the sense of comradery was palpable. After that relay race I was confident enough to try to run faster. My fitness peaked in 2012. Training got more intense as I knew I was going to do two marathons in 2012, the Cork marathon in May and the Dublin marathon in October. Oh, I forgot to mention that I was also getting married in July! At the time people were telling me I was crazy trying to do this all in one year but I loved having a goal and anyone that knows me knows how stubborn I can be!

There was days when I was thinking “why am I doing this to my body?” I was training 6 days a week, up to 20 mile training runs at the weekend and I was also on a strict diet. I’m not the best chef in the world so I would have been lost without my mother and husband. I do a mean salad though! It was worth it in the end because I finished the Cork Marathon in June, got married in July and  then completed the Dublin Marathon in October. All the hard work during the year had paid off and I was so proud that I achieved what I had set out to do. It was such an amazing feeling and to see my family and friends at the finish lines.



(Niall and Catherine)

Fitness and pregnancy

My biggest challenge was yet to come when we discovered that I was pregnant. It turned out that I was six weeks pregnant when I completed the Dublin marathon. Obviously, I didn’t realize at the time but, thank God, our baby was fine and we have beautiful little girl who can claim that she has already completed her first marathon!

During my pregnancy I never stopped training. We sought advice and the doctor was happy for me to keep spinning up to the due date. I got much encouragement but many dirty looks also. But Niall and I had researched the benefits of keeping fit and it all worked out. Our little girl hasn’t stopped moving since she came into our lives.

What happened after pregnancy?

After all had settled down and our daughter started to settle, I began to train again. I was becoming bored of road running and my joints were starting to creak so I called it a day. I set myself a new challenge. A twelve week fitness challenge was designed and it became a short term goal. I wanted to reduce my body fat, get leaner and step back from the extreme cardio training which I had become accustomed to. I decided to focus on weight training and diet.

This was a very difficult challenge for me. With a full-time job and an energetic toddler, it was difficult to find the time to train every day. However, I always managed it thanks to the great support I got from Niall.

A typical day during that 12 week program started with training and ended with training. The most challenging part of it all was my diet and sticking to it. Again, I must thank Niall because he helped me prepare my food some nights when I didn’t have the energy and he helped keep me on track. Luckily, as I was completing this challenge, Niall won a competition on Facebook with “Shaun Barry Photography” and he kindly gifted it to me. I now had an extra incentive to achieve my goal. It drove me on to complete the program.

C Shaun Barry

(Catherine with Shaun Barry)

Coming towards the end of my program I kept in contact with Shaun Barry Photography and updated him on my progress. He wanted to produce professional looking photographs and was only willing to take photographs of dedicated models. At the end of the challenge I took part in my first photo-shoot with him. I absolutely loved it!  After working so hard for those twelve weeks, it was such a lovely feeling to see the results in the images. It gave me a feeling I never experienced before and I knew I wanted more of that buzz.

c photo

How did you become a model?

After some weeks had passed, I still had this feeling that I needed to do something about it. I felt so passionate about it, so Niall suggested that I send the images into a modelling agency and, as he said, “what have you got to lose?”

It’s something I have always wanted to do but never had the confidence. Since having Niamh I’ve gained a new level of confidence. I want her to be proud of me and set an example to her – that you can achieve your dreams if you put your mind to it .

I sent my images into a Cork Agency called Lockdown Model and PR Agency and I haven’t look back since. It has opened up so many doors for me and it’s one of the best things I have done . Since signing up with the agency I have worked with RTÉ, Wave break Media, Vanilla Boutique in Fermoy, Crowley’s Opticians in Cork City, Sarah Keary – the Make Up Artist and so many more. I really love modelling and I would encourage anyone to follow your passions and try to live out your dreams. “Sure what have you got to lose?”


C today

(On “The Today Show with Daithi and Maura)

My own thoughts

I am extremely proud of my friend, Catherine. Not only has she worked exceptionally hard to improve her levels of fitness and achieved her goal of becoming a model, she has done so in a healthy way. She has not sacrificed her health or her sense of self.

Her message of achievement is not about striving for the ultimate body beautiful. It is focussed on believing in yourself, believing that you are worth investing in. That if you have a dream or a goal that you can realistically achieve, you should go for it.

In achieving our goals, we need support along the way. None of us can make it through life unsupported. To help each other, we should inspire and empower. There is no room for jealousy or envy. It doesn’t help anyone to grow and to blossom in life.

There is far more power in positivity.

Well done, curly haired girl. Your friend, always, little black haired girl xxx


 Childhood friends xxx

An interview with Vera Twomey

Photograph courtesy of Vera Twomey

At the beginning of March this year, Vera Twomey walked over 250km from Cork to Dublin, for the second time, in an attempt to persuade the Oireachtas to approve legislation that will allow  her seven year old daughter, Ava, and other patients the use of cannabidiol (medicinal marijuana). Ava has a rare epileptic condition called Dravet’s Syndrome and can have up to twenty seizures a day.

In my last article about Vera, I referred to her as “The Lioness”; a woman who “rises above the rhetoric”. A month on, I have been thinking about how Vera, as a woman and as the mother of a sick child, really feels.

Like me, I’m sure there were thousands of people, caught up in the story of this powerful woman who was walking to the capital city to confront the Minister for Health head on. Gathering followers along the way, determined to do anything in her power to help her child. Characteristics that great literary or movie heroines are made of.

But, what happened after the walk? What happened to Vera and her family when we all went back to our normal lives? It is all too easy for us, as by-standers, to get caught up in the power of the story.  So, I thought I would ask her about how she felt, both as a woman and a mother.

Interview with Vera Twomey: Monday, 3 April, 13.08pm

I spoke to Vera on the phone. I asked her how she felt about having to both campaign for better medicinal treatment for Ava along with caring for Ava and for her other children. She explained that she gets on with her day to day life and tries to cope as best she can.

“If I think about it, tears will start to flow”.

Vera spoke about the support she and Gino Kenny, TD, had received on the walk. People from all walks of life came out to wish her well. It seems that the message Vera was carrying from Cork to Dublin resonated with a huge percentage of Irish people. Vera spoke about how well-wishers said ‘it could be me; it could be my child”.

The losses attached to being a full time carer and a campaigner

As adults, the majority of us, have watched a loved one suffer through illness. We may feel helpless, unheard and isolated. We place our faith in others to guide us through and decide upon the medical care that our loved ones need. We may feel we have no control.

I thought about Vera’s situation. Not only is she looking after a little girl who needs a lot of extra care because she has a serious medical condition, she and her husband are not adequately resourced to do so in this country. Dravet’s Syndrome is a rare condition. There is very little support available to the family in the form of groups and they have the added job of campaigning for access to medicinal cannabis which they believe will significantly improve the quality of their daughter’s life.  Vera spoke about how caring for a sick child has affected her social interactions.

“Life becomes small. We have no social life because we aren’t reliable to be able to come to an event that we might be invited to. And people understand that because Ava is very sick. There is a lot of isolation and this can be damaging to your own well-being”.

The meeting with the Minister for Health

Vera spoke to me about the proposals and options discussed with regards to Ava’s future care. She explained that some proposals were not an option because Ava cannot travel abroad for treatment because she is too ill. I asked her how she felt about being expected to travel abroad for treatment,

“My daughter should be treated in Ireland . She is a very sick child. It’s as if Ava and people like her are not important enough to be treated in Ireland. In their own country.”

Vera spoke about the “Compassionate Access Program” that was offered.

According to the European Medicines Agency,

“Compassionate use is a way of making available to patients with an unmet medical need, a promising medicine which has not yet been authorised (licensed) for their condition.

A medicine can be marketed in the EU only after it has been authorised. However, it is sometimes in the interest of patients to have access to medicines before authorisation. Special programmes can be set up to make these medicines available to them under defined conditions. This is known as ‘compassionate use’.

Compassionate use programmes are co-ordinated and implemented independently by EU member states.”

In Ireland, the compassionate access program allows patients who suffer from MS, certain forms of epilepsy and cancer to be treated with pharmaceuticals derived from cannabis. Epidiolex was offered to Ava as a trial two years ago. Vera explained that they were excited at first when they heard about this option. However, when they researched the trial results, Vera said that one child had died during the drug trial and that the side effects from Epidiolex, according to Vera, are very severe. They can include sleep disturbance, extreme loss of appetite, drooling, nausea, change in behaviour and other side effects. Ava has been prescribed eleven anti-epileptic drugs in her short life and none of them have been successful in treating her condition.

Tetrahydrocannabinol (THC) or medicinal cannabis is illegal in Ireland under the ‘Misuse of Drugs Act’ because it is derived from the cannabis plant. According to Vera, under the compassionate access program, Ava and people who suffer from chronic illnesses like her, cannot access this treatment in Ireland unless legislation is changed.

“Legislation is the only option and it’s the right option. To put the decisions into the hands of consultants who have the proper authority to administer the drug. They can decide if the person is a suitable candidate.”

After the meetings

Vera spoke to me about how she felt after the meetings were over. She said she sat on the steps outside the Buswell Hotel in Dublin and cried on the street. She was humiliated.

“There was no dignity in how I was treated. I conducted myself as best I could. I was open and reasonable.”

She then went on to tell me that a Garda approached her with a cup of tea and offered her some kind words. Throughout our chat this afternoon, Vera spoke about the kindness and compassion of the general public. How ordinary people have showed her and Ava support and how this helped her realise that other people needed to be heard just as much as Ava did.

The effects on a family

Vera has a loving husband and three other children, Sophia, aged 5, Michael, aged 4 and Elvera-Mae, aged 2. My own daughter is also two years old so we spent a few minutes giggling and regaling stories of their toddler antics. I asked Vera how she felt about being away from her other children whilst campaigning for Ava.

“I am trying with all my soul to get what Ava needs but I can’t sacrifice my other children. If we had to go abroad, the family would be divided.”

We spoke about how fast our children grow. How every day, a toddler learns something new, speaks a new word, scribbles on a new wall. These are things a lot of us take for granted. Listening to Vera, I realised that she was missing some of these developmental moments in her other children’s lives because she is not adequately supported and she feels forced to campaign for adequate health care for her child.

My own thoughts

Whilst listening to Vera, I was struck at how balanced and articulate she sounded, given the fact that her life must be filled with stress and worry.

Whilst we were talking, her landline rang. It was a journalist. Vera was explaining the next walk for Ava and others who would benefit from medicinal cannabis. I thought about how many balls this woman must be juggling in life yet she still remains diplomatic. She strikes me as being an intelligent and compassionate person. A true and honest leader.

I thought, “How would I feel if I were in Vera’s shoes?”. If my child were desperately ill and every avenue pursued was blocked? If every time I articulated my points with research and back up, my voice was not heard by those who could instigate change? I wondered if I would have the personal strength to keep going?

I admire you Vera, for your honesty and your sincerity. I admire your power as an intelligent woman and as a mother.

I hear the strength of your message.

I hear your voice.

How to support Ava and Vera

A walk is being held in Cork on 22 April at 2pm – “Justice for Ava and justice for all”.

Visit the petition page at:

Support Vera via Facebook: “Hope for Ava”; “Vera Twomey”

Deirdre O’ Keeffe – an aspiring poet

(photograph courtesy of Deirdre O’ Keeffe)

As someone who loves to write and who is still learning the craft of writing, I love to read the work of other writers. So I was excited when I received a message from Deirdre. She asked if I would be interested in reading a poem she had written about a young, homeless girl.  

Deirdre lives in Mayfield, Cork. She is married and has two grown up children. Creativity must be in her DNA because she worked as a dressmaker for twenty five years. After her career as a dressmaker, Deirdre worked as a cook at Marymount Hospice.  

During her time at Marymount, Deirdre told me that she met people who greatly touched her heart and she was inspired to write. 

“I read a lot of everyday happenings. Bullying really upsets me as I feel there’s not enough done about it. I genuinely care about people and what happens to them and how they are perceived by others.” 

I wanted to know who inspires Deirdre to write. 

“My friend, John Lynch, writes poetry very quickly. He has inspired me. I love the work of Helen Steiner Rice. I’ve always been an avid book reader and believe the greatest gift I was given was my sight”.  

Deirdre’s poetry 

Deirdre was inspired to write the poem “Homeless” while working as a volunteer in the Marymount fundraising shop. Whilst working there, Deirdre said, 

“I met lots of homeless people. I know many have started out like this girl”.

 Homeless: By Deirdre O’ Keeffe

I wander the streets with my head down;
Without a smile or a frown;

I’m just existing.

This is, now, my life.
My dad has found a new wife.
I’m not wanted in his new life.
I’m just in their  way.

 They had two more children.
I wasn’t welcome to stay.
I packed up my things,
And took one last look;
My old life now;
a closed book.

I had no one to turn to
And nowhere to stay.

I walked the streets that very first day.
I went to the shelter
Hoping a bed to get.
I was too late.
I’m going to get wet.

I stayed in a doorway
In the damp and the cold.
I was now on my own,
Just 15 years old,

 I‘m really scared
Out of my wits,
Trying to mind
My precious few bits.

People passed and people stared,
I felt so alone and no one cared.

Where can I go?
What can I do?

Is this really the life I was destined to live?
I always thought I had something to give.

It’s now a year and a day since this dreary existence began 
I want a home and someone to care.

I’m willing to work, to make a new life;
I’ve even considered becoming a wife.

Will someone, please, give me a chance?

So, remember those of us on the street.
We need your help to get on our feet.
Think of us that sleep in the door.

We could offer so much more.

When you give some bread and some tea.
Will you be thinking “This could be me?

So many hopes.
So many dreams.

Life is never what it seems.

I have read a selection of Deirdre’s poems. She writes honestly and directly and with a deep sense of compassion for others. She writes about current affairs issues such as homelessness, bullying and autism. 

“I think as I’ve got older and my children have grown up, I’m very aware of topics like those that I’ve written about.” 

My own thoughts 

Writing is a rewarding, yet lonely activity. It requires self discipline and self motivation to sit and write. It takes courage to share your words with others, especially when you are an unpublished and unknown writer. What if people don’t like what I wrote? What if people laugh at my work? Maybe I should keep my work in the drawer for a little while longer? 

Thank you for sharing your words with me Deirdre and for allowing me to share them on my blog. I now have beautiful images in my mind of other aspiring writers, like you and me; writing on scraps of paper when an idea springs to mind; people writing creatively to express themselves in an increasingly stressful and divided world.  

When next I procrastinate about writing, I shall reach for these images to act as a motivation.  

Deirdre is continually working on her poetry. I hope that, one day, she will share her work online so that I can share links to her work on “Her voice from the kitchen window”.

Her voice from the kitchen window – interviews with people (mainly women, but not exclusively) to inspire and empower

(Image courtesy of Jinga Life – Instagram  – March 24 2017)

I shall be posting a series of articles where I have interviewed people that inspire and empower those around them. People that go about their day to day lives without a spot light shone on them. People who, I believe, are not fully or fairly represented by mainstream media but who make the world a brighter and a better place in which to live.

We live in a world in which we are bombarded by sensationalist headlines and divisive messages. Our senses are attacked with contradictory images of what society represents; highly polished, perfect people with perfect lives versus people who are a so called “drain on resources”. I watch the news sometimes and I feel dismayed, confused and angered. Have we lost all sense of balance in Western society? Have we forgotten who we truly are?

Then, I look around at everyday people I meet on a daily basis and my faith is restored. I am reminded that the majority of people are doing their best and trying their hardest. Without recognition or fame.

I have decided to write about these people. One may call me an idealist, thinking that we are surrounded by good, that I am being naïve. If one calls me an idealist, I say, “Thank you”. Striving for ideals is what has promoted and encouraged change throughout the course of history.

I am greatly impressed by the positivity, creativity, empathy and entrepreneurial spirit of people I meet from all walks of life.

I would like to write about this and celebrate such wonderful diversity.

Dear Mama – Thank you

For my mother, Judy Halpin, who I love with all my heart

Dear Mama,

In honour of Mother’s Day, I want to say “Thank You”.

Thank you for never raising your hand to discipline me. Your “Scary Mama Stare” was enough to stop me in my tracks. After the stare, came the explanation as to why my behaviour was not acceptable; firm but always kind.

Thank you for smiling when I wrote my name in huge capital letters on the wall when I was six years old and I told you that “the baby did it”.

Thank you for encouraging me to play with the little girls who were visiting our neighbours when I was eight years old. For seeing that I was nervous about asking them if I could join their game. For asking if I had a lump in my throat. For explaining that the lump would disappear when I went up to the girls and said “Hello, what’s your name?”

Thank you for asking “How was school today?” For the memories of us sitting at the kitchen table with a cup of tea and a glass of milk; my legs dangling off the chair whilst I recalled my day’s adventures.

Thank you for believing me. When I punched that boy at school who called my brother a horrible name, you understood my intentions. For explaining I must not fight with my fists but instead fight with my voice and always stand up for what is right.

Thank you for saying it was okay to be shy sometimes. That it was okay to be quiet. That when I wanted to speak, my voice was as important as everyone elses.

Thank you for standing up for me. When the principal at school made unfair comments about my dedication to my work in front of others and I felt embarrassed and upset, you drove to school and demanded to speak to him. You did not shout hysterically or lose your temper. You articulated your points with intelligence and dignity. Mama Bear schooled the school teacher.

Thank you for the glass of warm milk you gave me while I cried in bed when I was seventeen years old. For stroking my hair after my first love had broken my heart. For explaining that, in time, I would neither love nor hate him but wish him well.

Thank you for treating me and my brothers equally. For instilling in me the idea that I, as a female, can achieve as much as a male.

Thank you for letting me make mistakes. For allowing me to fail. For being there afterwards to help learn from my mistakes. For never judging me. For helping me realise that failing does not make me a failure.

Thank you for loving me when I did not love or like myself. For pulling me from the depths of despair and supporting me until I was capable of standing and supporting myself.

Thank you for loving my baby girl unconditionally. For being a wonderful Granny. For your advice and for never judging me as a new parent.

Thank you for always being my mother. Thank you for being my friend.

I love you Mama. Happy Mother’s Day.



My journey from miscarriage to pregnancy

“You’re still young. You have lots of time to fall pregnant”.

“Your body got pregnant once. Okay, it didn’t go to plan, but at least you can get pregnant”.

Stop! Please, stop it! Enough!

That’s what I wanted to say to the well meant advice and anecdotes. But I didn’t. I muttered the obligatory phrases a lot of women who have suffered the trauma of miscarriage do,

“I know”.

“You’re right”.

“Ah yeah, definitely. Definitely”.

Loss and grief attached to miscarriage

A few weeks after  miscarrying my first child, I felt like I was in a fish bowl. Looking at the world I once knew, hearing familiar sounds muffled by introverted grief. My logic understood that people meant well and that their comments were sincere. They came from a good place. Part of me deeply appreciated that people cared. Part of me hated that they didn’t seem to fully comprehend my sense of loss at that point in time. People were telling me that miscarriage was common but few people were talking about the grief attached to my loss.

Miscarriage is a bereavement. It is a private mourning for a person you never knew and for a person you will never meet. It is a grieving for a lost love who will never know that you loved them and that you will love until you take your last breath.

Trying to move forward after miscarriage

I was in my thirties when I lost my first child. Naturally, when I met new friends, some would ask,

“Do you have any children?”

My heart and mind said,

“Yes, I have one little star or soul or raindrop floating somewhere in the universe. I have a tiny winged angel in heaven”.

But I couldn’t say that. I simply said,

“No, not yet. Maybe one day, when I’m bigger”.

My husband travelled to his home, South Africa, for a friend’s wedding. He was asked the same question by numerous people,

“When are you guys going to have kids?”

He had also suffered a loss. A loss that he had kept a secret. Internally, he thought,

“If they knew what we’ve been through, would they ask such a question?”

But, he was polite, answering,

“Not yet. We can barely look after ourselves. Maybe we’ll get a dog first”.

I know people were only making conversation and taking an interest in our lives but when grief and emotion after miscarriage are so raw, these questions, unintentionally, rub salt into a slowly healing wound.

My pregnancy after miscarriage

Fourteen months after miscarrying my first child, I fell pregnant with my second. I was both elated and riddled with anxiety. What if what happened before, happens again?

Reaching the ten week mark

I lost our first baby at ten weeks. Symptoms of miscarriage began. A scan showed no heartbeat. At the beginning of my second pregnancy, I thought,

“If we can get to week ten, that will be such an achievement”.

We got to week ten.

At week twelve, I had a scan. My own heart was beating ten to the dozen. I was excited and scared for what I would see on the sonogram. There was a baby with a galloping heartbeat. I thought,

“Now, little heart, you keep beating for at least another ninety years. Mama will do her best to grow you”.

Week twelve and beyond

I won’t lie. I found pregnancy really difficult. I was anxious and worried that something might go wrong. I was scared of giving birth. In truth, I was petrified. When other women told me their birth stories, I mentally told them to “Shut it”. I didn’t want to hear their labour room war stories.

But there was a part of my pregnancy I really loved. I would come home from work, put on my giant fleece pyjamas, sit on the couch and talk to my bump. Just the two of us. The pea and the pod. Those quiet moments, where no-one was talking and baby’s foot gave a kick are still tattooed securely in my mind. Those images still act as a sanctuary in my anxious moments. Images of hope and possibility when once I thought possibility was lost.

And after the rain comes a…

My beautiful baby girl was born on 2 April 2015. She made it into the world. My rainbow baby.

What about baby number one?

I don’t have a gender to assign to my first child because I lost him or her early in pregnancy. I don’t have a face or a name. The raw feeling of loss has eased considerably over time. But I think about that baby often. I look at my daughter who is nearly two years old and I imagine what her older brother or sister would have been like. I think about my first because I know that I am the only person who will ever truly think of him or her. And, you know what, that feels like a healthy thing for me to do. I feel positive when I acknowledge my loss.

Some closing thoughts

Whatever your journey is, whether you have miscarried, whether it is taking longer than you expected to fall pregnant, whether you are undergoing fertility treatment, whether having a baby is not a possibility and you are looking at other options; the emotions and feelings you are experiencing and living with are valid.

To survive in life, we all wear masks. But the masks need to come off sometimes. Don’t be afraid to reach out to people who love you and ask for their support and kindness. Don’t be ashamed to contact support groups or agencies if you feel this may help with what you are going through.

None of us can get through life unsupported. Acknowledging the truth of your individual situation can be daunting and scary but it can also be cathartic and powerful in the long run.

Your trauma and your feelings deserve to be heard in a safe and supporting place.

All too often, miscarriage is not acknowledged as a true loss. We are only starting to speak about miscarriage in public forums, mainly via social media or specialised support groups. Miscarriage is a loss. This loss causes grief. All grief deserves appropriate care and support.