Parenting in my shoes – My child has a clearly visible birthmark

Christine from Dublin is 37 and married to fellow Dub, Stephen. They have one child, Elizabeth who is 15 months old and Christine is just over 5 months pregnant with their second baby.

Little Elizabeth has a visible strawberry birthmark in the middle of her forehead, which has resulted in  plenty of stares and other unwelcome reactions from others in public.

Here Christine talks to me about coping with these reactions, her future worries for her daughter and how it feels to be the parent of a child with a prominent birthmark in an age that’s obsessed with appearances.

The pregnancy…

I found out I was expecting in December 2016 and had a really normal pregnancy (although I had nothing to compare it with!). I had morning sickness up until about week 14 but nothing severe, mainly nausea. I was able to continue with work, had normal blood pressure and attended the ‘Domino’ Scheme where my maternity appointments alternated between my GP and Midwife. I’m quite tall so Elizabeth had plenty of room to stretch out and it was quite late in the pregnancy before I had to start wearing maternity clothes. So all in all pretty much the dream pregnancy!

My due date was the 27th July so when I started having twinges on the 8th July I presumed they were Braxton Hicks and honestly thought I’d have another 5 weeks of pregnancy ahead. Even so I’d also had a bit of “show” that week so my husband, Stephen said let’s get the hospital bags in the car to be on the safe side (like, how thick was I when I look back on it!!). I went to work that day, came home, got changed, and went out for dinner with my friends, all the while Elizabeth was planning her big entrance. Stephen collected me from town and I went to bed around 10 or 11pm. I was restless and was starting to realise that the twinges (contractions you fool!) were getting more intense and were actually quite regular until pop went my waters at 1am. We started timing the contractions then and realised it was time to hot foot it to the Rotunda. I arrived around 1.30/1.45am and was assessed as being 2 or 3cm so we had “plenty of time”. There was no delivery room available so we waited in the public waiting room and then the assessment room until eventually it was time to head upstairs. I got to the delivery room at 4.03am and promptly asked for an epidural however, the next words from my mouth were “I need to push” and Elizabeth arrived at 4.16am on Sunday 9th July weighing 7lbs 7oz. A squidgy little bundle of amazingness.

Early indications…

There was no indication at all beforehand and in fact, there was no birthmark visible when she was born. The Haemangioma (also known as a Strawberry Birthmark) appeared as a tiny red dot when she was around one week old.

First impressions…

Elizabeth had some broken blood vessels around her eyes from the delivery so I presumed that this new red dot on her forehead, between her eyes, was something similar. She had a really faint, small red dot on her stomach too and the “stork mark” on the back of her neck which I think is fairly common. I don’t remember being concerned initially, it was so small and I had no clue what it was so I guess I just assumed it would disappear. Over the weeks as it grew we were obviously concerned but were reassured that they were common and that they tend to disappear themselves.

Baby Elizabeth 1 day old

Medical opinions…

It was the Public Health Nurse that visited us at home that first took note of it and advised that we keep a check on it. It’s amazing how quickly they grow and week by week it started getting bigger and bigger. We started to research them through “Dr Google” of course but there is a lot of mixed information and when we visited our GP he said they were common and didn’t seem worried by it.

Historically the “watch and wait” approach is taken with Haemangiomas and with us being completely naive and uneducated about them, that’s what we did. We waited and watched as it continued to grow, and grow. It was at Elizabeth’s 3 month check up with the Public Health Nurse that things finally got moving. The Nurse was not at all happy with what she was seeing and recommended I push for a referral to a dermatologist to get it checked. Some Haemangiomas are slightly raised red areas but Elizabeths is “mixed” so has the red part but also has a large bump underneath that makes it more pronounced.

Our GP referred us to Temple Street straight away but we were initially told it could take a year to get an appointment. From what we had read online this was fairly useless as haemangiomas grow quite rapidly up to age one before they start to recede. We decided to request a referral to the Private Clinic instead and were seen by Dr Fiona Browne within 2 weeks. In fairness to Dr Browne she said that even if we had been referred to her on the Public list she would have prioritized Elizabeth because of the location of her H (being close to her eye the skin is thinner and susceptible to ulcerating/scarring plus there was the possibility of her eyesight being affected). So we saw Dr Browne and within a couple of days were back in Temple Street to undergo tests and start treatment. Elizabeth takes an oral medication called Propranolol twice a day. It’s a beta blocker so her blood pressure and blood sugars were monitored in hospital during her first dose and we have monthly appointments now to get these checked and also to get weighed and have her dose altered as she grows bigger.

Not all babies with haemangiomas’s are given treatment, it can depend on the size and location of them but usually if they are large or near the eye, mouth or nose, treatment will be given.

The reactions of others to Elizabeth…

It varies but the most common reactions are:

Ignoring it, shock, telling a story about someone they know that has/had one

Elizabeth at 2 months

Its impact on my experience of parenthood…

I can’t express how much I adore Elizabeth. She made me a Mammy. Something I didn’t really know I wanted to be until I had her. She has the most beautiful blue eyes and a little button nose and squishy cheeks. She loves animals, bubbles and going to the park. She’s amazing. Most days I don’t even think about the birthmark. It’s a part of her and a part of what makes her unique and individual.

Except some days there’s that “if only” thought that pops into your head. If only she didn’t have the birthmark. If only it was somewhere else and not in the middle of her forehead. If only we didn’t have to spend every visit outside the house waiting for a look, frown, stare, question, comment. If only we could have baby photos without it. If only I wasn’t such a horrible, superficial person and could just ignore it. There are a million and one things that she could have that are a million times worse…

The treatment plan…

So, the disappointing thing for us has been that the Propranolol which is a miracle medicine for so many people has had little to no effect in shrinking Elizabeth’s H (it’s as stubborn as she is!). In saying that there’s no way for us to know how big it could have grown if she hadn’t started taking it so in fairness, at the very least it may have stopped her H from ulcerating or affecting her vision.

We visit the Dermatology Dept. in Temple Street every 4 weeks. The Nurses and Consultants there are brilliant. They check that Elizabeth’s blood pressure and blood sugars are normal. She is also weighed to make sure she is on the correct dosage of Propranolol for her weight and for now that’s the treatment we’ll continue on until we make a decision about whether to seek to have it surgically removed or leave it to see if it will involute naturally.

The hardest part of having a child with a visible birthmark…

In some ways I think this will change over time but the silent looks are probably the hardest thing to deal with. Should I ignore them? Should I pull people up on them? I always try to catch the eye of the person and give them the big smile if I can. It’s funny how this sometimes takes them off guard and they realise they have been “caught out”.

Worrying about what to teach Elizabeth to say as she gets older and making sure we instil her with enough confidence to ensure she’s not affected by future comments is another thing I think about a lot. It’s not something that we want to make a huge issue of but at the same time, it’s there and we’d be stupid to think that it won’t be something that she’ll become more aware of as she grows up.

Thoughtless comments…

Kids are great and much more open about asking about it (much to the mortification of their parents which makes me laugh). I always try to tell the kids a little bit about it before the parents embarrassedly whoosh them away.

Kids comments

“She has a big red lump on her head”

“What’s that thing on her head?”

“Is it sore?”

“Eurgh” followed by recoiling in horror dramatically

Adults comments

“What happened to her head!?”

“Did she fall?”

“God love her”

“You must have gotten a terrible fright when you saw it”

(The parent of the recoiling child above) “That little girl won’t be bold again will she, her Mammy gave her that because she was bold” – I’m not sure why I didn’t tell that man to STFU actually.

To be honest a lot of the worst ones are the “looks”. I think if someone comments it’s easier to open a conversation and explain what it is but I get really upset sometimes when we’re out and I can see someone up ahead clocking it and then proceeding to stare with a frown on their face as they get closer.

I often say it’s like they don’t even realise that they are staring at a human baby like she’s an alien or a curiosity (OK and now I’m crying, sorry). I have left our local shopping centre in tears because of the stares. There are days it doesn’t bother me at all and then there are days when I feel like shouting at people. Sometimes I think about getting leaflets printed with an explanation about haemangiomas and keeping them in the buggy so I can hand them out to the people who stare…

Elizabeth with Mum Christine

Elizabeth’s prognosis…

Generally haemangiomas grow rapidly until age one and then start to shrink or involute naturally. The involution is very gradual though and could take up to age ten. The Propranolol usually speeds this up but in our case this hasn’t happened.

We have been offered steroid injections as a next step but Elizabeth would have to go under general anaesthetic for these and we have decided that as the haemangioma is not growing or causing any complications with her eyesight, we’ll hold off getting these done. There’s also no guarantee they will actually work.

For us, it’s looking like we would have to leave it and just continue with the Propranolol and see what happens or we could decide to have it removed. Again, this would be under general anaesthetic so not over the moon at the idea but I think if we do decide to go with the surgery it’ll be before she starts school. This plays on my mind a bit though. Who would we be getting it removed for? Elizabeth? Ourselves? Other people? The kids in school?

Elizabeth aged 1 year

My fears for Elizabeth…

Thankfully she’s too young now but as she gets older my biggest fear is for when she starts to notice people looking at her differently or understands the comments. School is obviously a big worry too although younger kids are generally more accepting and once you say “that’s her strawberry birthmark, it doesn’t hurt and will disappear when she’s older” that’s basically that for them!

I think part of my fear is that we equip her with the strength of character to be able to respond confidently to any queries or remarks herself if/when the time comes… All anyone wants is for their child to be happy and healthy.

If you meet us…

Personally I prefer to be asked about it. It means I can explain what it is and educate people a little bit. We meet lots of people that have experience with them and tell us the stories of their sisters, friends or neighbour who had one on their arm, leg, head and it just disappeared. But for every one of these people you meet more, just like us at the beginning, who don’t really know what it is or anything about them.

Advice for other parents in the same situation…

One of the best things that happened to me was when I came across a couple of Birthmark Support Groups on Facebook (Hemangioma Parents Group and Birthmark Support Group). Thousands of parents of babies and children with haemangiomas, some bigger and more complicated than ours and some smaller. Some on topical treatment, some on oral medication, some having surgery and some deciding not to treat at all. No judgement, no staring, just understanding and support.

Knowing that we weren’t the only people out there with these feelings and worries, and coming across so many other parents who felt exactly like we do was amazing and a huge relief to me. It gave me a lot of perspective, took away some of the guilty feelings, and gave me more confidence in handling comments when we’re out in public.

I would recommend any parents of a baby with a birthmark to ask for a referral to a Paediatric Dermatologist who can assess it and then help you decide whether to treat it or not. You don’t have to just watch and wait.

 

 

Parenting in my shoes – I am a single parent

Ellen is a 37 year old single mum of 3 children – two boys and a girl aged 8, 6 and 4. She’s originally from Kilkenny but moved around for about for about 14 years before coming back to her home county when her relationship broke down.

Ellen is a qualified Health Care Assistant and Beauty Therapist but right now is a stay at home mother. She spoke to me about some of the difficulties and rewards of single parenthood – the challenges we often don’t think of and why we should be mindful of our language.

 

Meeting my ex-partner…

We met online when it was still very much taboo. When we told people they were shocked. Our relationship progressed quickly and we moved in together after 3 months. The joke used to be that I moved in one weekend and then never left. We were engaged but never got around to getting married.

I was actually 5 ½ months pregnant on my daughter when the relationship came to an end. The boys would have been 2 and 4. A very young family.

The emotional impact of the break-up on me…

I knew I was doing the right thing but it didn’t make it any easier. I was so sad for my children. I was sad for him and I was sad for me. Paired with being pregnant I was an emotional wreck and my family were amazing. My sister was just out of this world.

I never needed to worry about the boys being taken care of on the days that I found it hard to function because she was always there. There was also the worry of what was to come. How would I support myself? Where would I live? Would I be able to cope? Taking one day at a time is difficult when your world has just fallen apart.

And on the children…

Thinking back, the fact that they were so young meant that they just got on with things. Of course they were sad and we had tears but they adjusted very quickly. I was always honest with them. I never gave them false hope or made a promise that I couldn’t keep. I met with a child psychiatrist and took advice on how to deal with explaining the separation to them. She advised that you tell the truth in child appropriate language and that’s what I did.

Ellen and the kids

The impact on my career…

At the time I was training to be an Intellectual Disability nurse. I had to stop. I had no way of getting from Kilkenny to Dublin because I had no car. I think I probably wouldn’t have been able to continue even if we had stayed together but at the time I felt that everything that was going wrong was a direct result of my decision to leave.

The most challenging aspects of single parenthood…

I think this would be different for everyone based on your personality and your strengths. For me it’s maintaining my energy levels to get everything I need to get done. I have suffered with depression and the lethargy that goes with that can be debilitating at times. I try to get as much as I can done when I’m feeling good.
Finding somewhere to live was a massive challenge. Even though I qualified for support there were no houses to be rented. I was lucky to be with my Mam but I felt enormous guilt that the decisions that I made in my life were affecting others. I wanted to leave not because I wasn’t welcome but because I felt it was unfair to her.
I did get a house and it was the best feeling in the world to be able to have a home for my family.

The bits people don’t appreciate…

I’ve seen a lot of mothers lately saying things like, sure he doesn’t help I might as well be a single mother. Or people who have spouses working away saying that they are like single mothers.

I appreciate when you do all the hard work that you may think it’s the same thing but the one aspect of being a single mother that people don’t
realise is that sometimes, in some cases, you not only have no physical help but you may have somebody actively working against you. Waiting and watching for you to drop the ball. It can be very draining feeling animosity continuously.

Negativity, prejudices and assumptions…

A common question I get asked is if all three have the same father? This just proves to me that the stereotype of the single mother who pops out kids to get houses is alive and well. I can’t say that I have had it aimed directly at me but I do feel it when you see things in social media about single mothers. Why did you have so many children if you couldn’t afford to support them? I had my life planned out. I was being supported to rear my children and things just went wrong.

The last thing I thought I was ever going to be was a single mother of three children. I do feel the need sometimes do fight against the stereotype which is just ridiculous. It’s just more pressure I put on myself.

My support network…

I have amazing family. My parents and sister and aunts and uncles are all hugely supportive. The kids are so lucky to have them around. I’m not sainting them. We drive each other nuts but I’d be lost without them.

Sharing the load after a bad day…

Ah with who else but the aul mother! She has always been my best friend. I have such a renewed respect for her now that I’m a mother myself. She is a rock even though she doesn’t realise it herself.

Managing loneliness…

I am not lonely I have great friends and family but sometimes I sit and I think I would love to meet someone to share some experiences with. In another breath I’m terrified of all the complications that come with that. If they have kids and an ex and I have kids and an ex and …… well it’s a lot.

What would make the biggest difference to me…

I think this is the same for all families regardless of their composition. financial security. I would love to be able to give my children experiences that they’ll never forget. Unfortunately all the basics take priority and there are many months that there isn’t enough in the pot to do the fun things.

What I’m proudest of…

At 38 weeks pregnant on my second child I was referred to the psychiatric
department of Port Laois Hospital. I did not want to continue living. I wanted to close my eyes and for it to be all over. So when you ask me what I’m proud of…. It’s literally everything. I’m proud that my children are healthy and warm and feel love on a daily basis. I’m proud that although I have blips I’m still going.

Final thoughts…

Other mothers say to me, you are amazing I don’t know how you do it, I wouldn’t be able to cope. I always answer the same way. Of course you could because you would have no other choice. Women are amazing and resilient and adaptable and have been blessed with a bottomless pit of love for our children.

That’s what keeps you going. Sometimes I think I’m luckier than people with partners. I get two nights a month that I’m child free and I don’t have to share the remote after they go to bed. I’m on to a winner!

Ellen’s children

 

Ten things you may not have known about me..

  1. I was a volunteer with the Irish Coast Guard for 11 years and having to retire broke my heart – unfortunately seven children and being a volunteer with the emergency services don’t mix. I absolutely loved it and met and made friends with some of the most amazing people on this planet. I’m not sure people realise how truly dedicated Coast Guard volunteers are or the demands that being a volunteer place on their families too. I hope one day – if life ever settles down and manageable chaos returns – that I can rejoin.
Me with my former Coast Guard colleagues Stephen and Asa
  1. I play the accordion and my claim to fame is that I played it at Croke Park as part of the half time entertainment during a match once (actually now that I come to think of it, it was probably pre-match – in fairness, it was a long time ago and the size of the crowds were rather intimidating!)
  2. I was an absolute football fanatic growing up. My room had football wallpaper and curtains and the walls were covered in posters of my favourite players. I wasn’t into the typical teenage girl magazines, preferring to buy “90 minutes”, “Match” or “Shoot”.  I used to play for a ladies football team back when it was less common – ( however, playing and being any good at it were two very different things as I proved.)
  3. I wanted to be a sports journalist when I was at school. I had the option to study journalism but instead went to UCD where I met my husband. The rest is history – and kinda current as it turns out, though I’ve yet to write about sport….
  4. I taught Maths and English many years ago. I have yet to convince my children however, of the beauty of non-subjective maths!
  5. I am a huge Michael Jackson and Queen fan. One of my children’s middle name is Michael because of my fanaticism. My husband is very embarrassed by this fact – but he relented having just witnessed the spectacle of childbirth. He tells everyone however that the name Michael is after an uncle.
  6. I lived and went school in America for a period in the late 80’s/early 90’s when my parents emigrated. I haven’t been back since. But it’s on my bucket list.
  7. I was pregnant at some stage of every year from 2000-2015. Multiple miscarriages however, meant that every pregnancy, sadly, did not end with a baby.
  8. The world of boys was all new to me. Although six sons and one daughter make up my brood – I come from a house of four girls! I am now well-adjusted to the world of farts, underpants- resistance and wee puddles by the toilet
  9. Oooh and another claim to fame I’ve just remembered. When I was about 14 I was in a TV ad for sausages. The ad however, was only broadcast in parts of Asia and Africa. For transparency purposes I feel I should add that I do not like sausages. 😂

 

I’m up for an award and I need your help!

So ahem, cough, cough, (and more awkward coughing…)

Mama-tude is up for Best Parenting Blog at the Boots Maternity and Infant Awards and I would be eternally and incredibly grateful if you could vote for me  please. It only takes a couple of seconds – just click on the orange button below (and then click vote for this product)

Thank you SO, so much in advance

 

Jen x

 

 

Taking the Hotter Shoes test!

You can take the girl out of the high-heels, but you can’t take the high heels out of the girl – or so the saying goes, well at least so I reckon it should go!

I’ve always loved my high-heels – the higher the better generally. They’re a wardrobe staple in my book, so when Hotter Shoes got in touch to see if I’d like to try out a pair of their shoes I wasn’t sure I’d find something that could convince me to abandon my usual style. Looking through their brochure however, the magpie in me was immediately drawn to a rose-gold pair in their Gravity range.

rose-gold gravity shoes

The  Gravity range are described as having “breathable, perforated, sleek leather or velvet nubuck uppers, with padded collar and tongue and cushioned insole for all-round comfort and support”. Reading this and given what I’d heard on the grapevine about the Hotter Shoes range, I had high expectations of comfort. I’ll be honest – they didn’t disappoint. Not only were they as stylish in reality as they appeared in the brochure, they immediately felt incredibly comfortable and supportive without any wearing-in period – a definite first for me.

The change in style was spotted immediately by my nearest and dearest and everyone who saw them complimented my shoes. My father-in-law even went so far as to say I seemed more balanced in them now that I wasn’t “tottering about”. The jury is still out on whether or not I should accept that particular “compliment”!

so comfortable!

Hotter Shoes not only very kindly gifted me a pair of shoes to try myself, they’ve also given me a pair (which can be chosen from either the Brooke or Gravity range) to give away to a lucky Mama-tude follower. So if you fancy a new pair of stylish, incredibly comfortable  and according to my father in law, balance-enhancing shoes* then just come on over the Mama-tude Facebook page to try your luck. And remember, if you’re not in you can’t win!

*  My father in law *may not be an expert in determining what are balance enhancing shoes

*My father in law is definitely not an expert in determining what are balance enhancing shoes

But I thought I’d test his theory anyway…

Testing my father in law’s balance enhancing theory!

 

Parenting in my shoes – I am a stay at home dad and carer

Alan was born in England to Irish parents and was eventually adopted by an American couple. When his sister tracked down their birth mother, he moved to Ireland where he met his partner  and her two children from a previous relationship. Together they went on to have two more children.

Life threw some curveballs their way which meant Alan had to give up work and become a stay at home dad and carer for his stepson. Here he talks about the realities of a gender role reversal and the challenges and rewards of being a carer.

Alan, his partner and family

Becoming a carer…

I am carer for my stepson, who has a diagnosis of Autisim, ADHD, dyspraxia, a specific learning difficulty (reading) and tics. 

It was during the pregnancy of my son that a couple of things happened resulting in me becoming a Carer. My partner has epilepsy and vitamin B12 deficiency. At the time I was a supervisor on the night shift at Paddy Power. The pregnancy caused my partner to take more, and potentially harmful to the baby, seizures. I was having to leave work early and miss shifts We also got the diagnosis of Autisim, ADHD and Dyspraxia.

Paddy Power were brilliant and allowed me time off, stepping down as supervisor and onto a fixed shift pattern. Sadly this didn’t work out and we made the decision for me to leave work and become my stepson’s full-time carer.

The reactions of others…

To be honest I don’t tell people. With the exception of close friends. If I’m asked what I do for “work” I just reply Carer and they assume I work in a care home. I’m not sure if this is to avoid possible negative responses or more to do with the fact that I might still not have fully adjusted to the fact I no longer “work” for a living.

What my role as carer involves…

My role as his carer is no different than my role as his step father. With her Epilepsy and therefore Mr being able to drive it means I’m the main person who takes him to the many appointments he has. Occupational Therapy, Psychology, Behavioural Groups, Paediatrics to name a few. I will also be the main contact point for the learning support teacher at school.

The most challenging part of being a carer…

The most challenging thing is that you are on call 24 hours a day! I know this is true for all parents, but when Buddy (Alan’s biological son) goes to school there isn’t the thought “he was off form his morning, am I going to get halfway to the supermarket before I get a call that there’s been an incident and I have to turn around?”

There is also the mountain of paperwork that a child with additional needs generates. Ensuring that there is no double booking of appointments between him and anyone else in the family. Trying to fit them around the subjects he enjoys or needs extra help with and can’t afford to miss. As well as keeping on top of prescriptions, medicine for the school nurse or SNA to give him at 3pm.

The upsides…

The positives are that I’ve not missed a single sports event, school play, parents evening for any of the children. I’ve also seen every first. Step, tooth, word, day at pre school, Junior Infants and Secondary school. Many of which I’d have missed had I still been doing the job I was.

My support…

None whatsoever. It’s just the Mrs and I. My parents live in the US and we barely see her family, never mind get any help from them.

The thing that would make the biggest difference…

Finances. It’s a struggle making ends meet each month. My parents have seen the grandchildren a total of 4 times. They are too old to travel that far and it took 3 years of saving for us to afford to go over to see them.

My advice for other parents who are carers…

Find something that is just yours. An interest, hobby or a friend. I have twitter and my blog. I have a group of online friends that I chat to most days as well as a parenting group run by a number 1 best selling parenting book author! 😉

My partner has a couple of close friends, who also happen to have a child on the Spectrum or being assessed that she goes to for the chats and a cuppa.

Alan, his sister and family

Parenting in my shoes – I was a teenage mum

​Tracey Smith 36, is from Mayo and is mum to 5 children – Chloe (16), Identical twins Cian and Jamie (7) Callum (3) and Angel baby Grace, who passed away at 28 weeks in 2014.

Tracey is married to Kieran, her college sweetheart, and they’ve been together for 18 years. Early in their relationship,  Tracey  discovered that she was pregnant. Here she chats with me about coping with a shock  pregnancy and discusses the realities of life as a teenage mum.

Meeting my partner…

We got together while we lived in our student accommodation, it was your typical college house, people up all night, no food in the fridge, doors hanging off the hinges…nothing has changed much except the people we live with are younger, smaller and make more of a mess! He is from Cavan but I have never held that against him…much! He was a builder and then when the recession hit he trained to be a chef! I work part time as a marketing manager for a pharmacy chain and I am most proud of graduating with a masters a couple of years back!

Finding out I was pregnant…

So 2 months after myself and Kieran started going out together I wasn’t getting over my hangover from that Karaoke final I was in even after a few days…eventually I went to the college nurse and the strip turned pink. I had just turned 19 and I was in first year of college…we didn’t know each other that well, so it was all well overwhelming. I had really bad morning sickness from the minute the strip turned pink. Being a poor college student didn’t help things. I told my room mate and my house mate and no one else knew.

 

It was April so I knew I didn’t have to go home for another month. I was in complete denial looking back. I moved back home the end of May and got a part time job, I didn’t do my exams at college and I still hadn’t told my parents.

Hiding our news…

We had made the decision to continue the pregnancy earlier on, but I concealed it until I was 6 months. I spent the whole summer getting bigger and they were none the wiser. I was quite thin so I often wonder how they never noticed. When I was over 6 months I came home from work one day and my mother had found my pregnancy bible. She asked who did it belong to and I had to admit the truth.

 

She didn’t speak to me for a week.

 

I told my dad that evening and he came up to my room and told me everything was going to be okay, I was shocked he was so accepting. That day my brothers and sister also found out, I was the youngest in the family and the first one who went to 3rd level. I had a lot of expectation on my shoulders.

How others treated me…

Kieran was supportive from the beginning whatever I wanted he was happy with. My mother was very disappointed, my dad was sad for me. The consultant and midwives definitely treated me differently because of my age.

The initial impact…

There was no immediate impact because we concealed the pregnancy for 6 months, Kieran found it hard to tell his parents even at that stage. I was about 8 months when he eventually did tell them. I had moved home as college had finished up and Kieran was doing an apprenticeship in Limerick at the time. I had planned to take the year out and return to college and repeat my first year, we had planned to go back to Letterkenny together.

 

I lived at home when I had Chloe. Kieran had finished his apprenticeship but was back living in Cavan. It was tough. I felt very alone. Chloe was born on 23rd December so I spent Christmas Day in hospital.

 

I had mam and dad but as good as they were and helped when they could, they were of the opinion Chloe was my baby and my responsibility.

 

Kieran travelled down at the weekends and I loved to see him arrive. We had no time on our own though as my parents home is very small terraced house, there are no spare rooms or places to escape.
New mum Tracey and Baby Chloe

The realities of being a teenage mum…

I found being a young mum worse at the weekends or during holidays when my friends came home. My Friday nights consisted of baby baths, colic and the Late Late Show with my parents, I was just 19 so I found this incredibly hard. I became to resent the freedom my friends had and the freedom I know longer had.

Comparing motherhood, first and second time around…

I actually think being a teenage first time mum was much easier than when I became a mum of the second (third) time (twins!), I was much more nervous as an older new mum. Everything scared me. The Naivety of being 19 and a first time mum made it easier to adjust to having a baby. I had a lot more energy!

Trying to juggle it all…

I went back to college when Chloe was 9 months and brought her with me, we lived on our own in an apartment. Unfortunately with full time child care and rent and being on a student grant and Kieran’s apprenticeship wage (he was in Dublin by this stage on his next placement) I found it financially too tough. I had to drop out and return home, again. That was tough, I found it very hard to pick myself up after that.

 

When I was 23 I returned as a mature student, Mam looked after Chloe was was 3 years old and I went on to graduate with a business degree, the same year myself and Kieran got married.

 

I went on to do a masters in 2015 because I still wanted to prove something…to who… I don’t know!
Tracey’s wedding day

The parts I found the most challenging…

Looking back the most challenging part was losing my freedom, losing a little bit of myself and being a mum when I was still growing up myself.
The best thing was growing up with Chloe, she will be 17 at the end of the year and we are more like sisters than anything. We look alike, we like the same things, we kill each other but she LOVES the fact her mum is so young.

The support teenage mums need…

I think teenage mums need support for developing their skills, re-training or finishing their education. More creches in colleges, subsidise childcare for younger parents who may not be in well paid jobs etc.

Advice for other parents…

I often think about what would I do if Chloe turned around and told me she was pregnant. What I would say is, don’t yell, shout or become silent. You may want to and that’s normal, but don’t let them see this being your first reaction. Hug them, tell them its going to be okay and let it sink in. Then ask questions. Find out where their head is and if their partner is supportive.

 

Listen to them. Let them lead. They will need you but for now, let them talk.
If they decide they are continuing their pregnancy, remember…It is not the end of the world being a teenage mum, your life is not over. Things just take a different path, it maybe a harder, rockier path initially but it does straighten out and eventually rejoins the path that you had initially wanted to follow. Things always work out.
Tracey and Chloe (16)

Me, now…

I started up my blog in 2016 as I was at home with the kids and writing was always something I wanted to do. I mainly write about the kids and beauty, funny and sad whatever is on my mind!

Parenting in my shoes – I struggle with my mental health

Ruth is  mum to 5 year old Aidan and 3 year old Sarah. She’s from Meath, married to Galway man Mike and lives in Kildare -( practically cosmopolitan ;-)!)

Ruth was formerly the Deputy Sport Editor of the Leinster Leader but when the children came along, juggling family life a with a need to be pitchside at weekends proved an enormous challenge. She now works as an editorial designer for the Iconic Newspaper Group

Ruth suffers with anxiety and spoke to me very honestly about the realities of coping with parenthood while struggling with her mental health.

Ruth and Aidan

Realising there was a problem…

It’s hard to pinpoint, because I really only admitted it to myself about three years ago. I think it all started when my father died almost eight years ago. I don’t think I grieved for him properly and it all stemmed from there. In October 2016 I finally sought help and was diagnosed with a stress and anxiety disorder.

How it materialises…

When I don’t have it under control I’m an absolute mess. I stress about everything and I mean everything! I would have an idea of how a day would have to unfold in my head and if it veered off course I really couldn’t cope. I can also be quite obsessive about things at my worst, while I would have real trouble with having any sort of patience.

A lot of people think anxiety is all about being scared of  being out in public, and while social anxiety is a problem for many, it’s actually not a problem I have. My problem was literally being on edge all of the time but I always put on a brave face in public and was always social.

How becoming a parent exasperated things...

The one thing a parent needs in patience! Also children rarely do what you want them to do, so that loss of control was very, very hard to deal with.

The effect on my family…

It’s fine now but before I got it under control I really don’t know how my husband put up with me. I was paranoid and always thought I had done something to upset him when I actually hadn’t. However there was plenty of times I did annoy him with my obsessiveness about keeping the house clean.

I also made life hard for the kids, particularly Aidan. I gave out to him for just doing normal kid things. I’d often freak if he spilled a drink or knocked food from the table. When I think back now, I was a nightmare. My behaviour definitely affected him but, as a family we have worked on that too and he’s a happy go-lucky five year old now, thank God.

I do worry that my stress and anxiety will become a learned behaviour for them.

How I cope…

By taking my medication!! Medication might not be for everyone but, for now, it is for me. I have ceased taking it before and did well for a while and then, out of nowhere, all my stress and anxiety returned and I just couldn’t do it all over again. Now, I don’t feel anything but normal, I just feel level. I don’t sweat the small things, I don’t worry half as much as I used to and I am able to relax.

The children’s awareness…

They can’t not notice. Obviously they are too young to know exactly what’s wrong but don’t kids always pick up on their parent’s moods? 

I don’t tell them, they are too young. However if I step out of line with the giving out I will always say sorry to them. I think that’s important.

My support…

My husband first and foremost. I think if the roles were reversed I would have thrown him out years ago! He is the most patient and supportive human I know.

Being open about it…

I’m not ashamed of it. It’s part of me so why should I hide it. I wrote a blog post on it and the response I got from other women who felt the exact same way was staggering. If even one of those women sought help having read my post, it meant sharing my mental illness was worth it.

I think some people are slightly taken aback about just how open I am but for the most part, people are fine about it.

The positive it has added to my parenting journey…

I’ve learned to be calm and stop rushing all the time, which the kids love now!

Unhelpful comments…

When people used to tell me to calm down! It was like a red rag to a bull for me! I so desperately wanted to calm down but no matter how hard I tried, I couldn’t.

Advice for other parents going through similar difficulties…

Talk to someone, be it a partner,a friend or even a stranger. When you open up about how you are feeling it will all just come out of you and then you can discuss what route you want to go down in terms of getting help. And remember, it is nothing to be ashamed of.

How to support a friend who is struggling…

Take the person out of the situation that is stressing them. Take them out for dinner or drinks and chat, chat, chat and laugh! Don’t they say laughter is the best medicine!

My favourite thing about parenthood…

Hearing my two babies laugh. My son has the heartiest laugh you will ever hear. I sometimes stand back from the bathroom door when they are in the bath together. They think I am not listening and the two of them are always roaring laughing together as they splash each other. It’s the one thing that will instantly lift my mood.

Ruth and Sarah

 

Parenting in my shoes – My child has a life-limiting disease

Geraldine from Galway – the proud mum of three uniquely different and full of fun boys – married her husband on the TV programme, “Don’t tell the Bride”, back in 2012.

She is a writer, but life is not as simple as that – in addition to being a writer she is an advocate,doctor, dog-walker, mum and full-time carer for her eldest son Ethan who has a life limiting condition.

Here Ger talks to me about the realities of being the parent of a child with a terminal disease, how overwhelming it can be, her worries for her other children and the support that she really needs.

Realising something was wrong…

Ethan was diagnosed in March 2008 . Ethan was born in 2002 and from 2003/2004 , we knew something wasn’t quite “right” with our little man .

Ethan was hitting every milestone early but suddenly at the age of 18 months he began to lose words or forget how to make his favorite jigsaw puzzle. At first we thought it could be an “off” day but then it happened more frequently and he began to get chest infections every other week .

Seasons didn’t matter, he was sick with a runny nose almost the whole year round . He didn’t look like us or any family member and he was toe walking .
His belly was sticking out while he didn’t seem to be able to straighten his fingers .

For every new word he learned, he lost three. He didn’t seem to be able to hear us. He’d often sit and stare out the window shouting at nothing. His hearing was the first thing doctors zoomed in on and often used his hearing loss to explain his unstable walking .

The second thing was behaviour and we were told that Ethan has Sensory processing issues along with a mild learning disability and possibly Autism ; we agreed with all that but believed that there was more , something else wasn’t quite right .

After years of begging the doctors to listen to us , finally in February 2008 we were heard . A wonderful doctor sat down and let me talk and talk about all my worries – that doctor had little choice but to listen as I had refused to let Ethan have another set of grommets inserted when clearly they were not helping him hear . I caused holy war and finally got the right doctor ( up until then I had only access to an ENT doctor who just thought all Ethan’s symptoms were hearing related along with my “over anxious young mother ” nerves !)

Ethan was finally diagnosed with Hunter Syndrome two months shy of his 6th birthday .

Handling the news…

Well, how can any parent understand when the doctor tells you – “You won’t have him for long ,go home and love him. ”  Our old world ended that second ,that minute ,that hour …

Nothing was ever going to be the same again – that is all I really understood that day.

Hunter syndrome and the prognosis…

Hunter Syndrome is a rare genetic syndrome . It is progressive.  There is no cure . The body is missing or has a damaged enzyme which is in every cell of the body . This enzyme helps breaks down waste in our body (not poop , FYI !) .

Without the enzyme the waste has nowhere to go ,so it builds up and up until there’s no more places to store it . As it builds it affects every single thing in the mind and body . Then when it’s finished the person generally passes away , by then Hunters has taken everything from them …speech , ability to eat, walk , communicate … absolutely everything .

Hunter Syndrome does have a treatment which helps slow down the progression of the syndrome , but that only works for so long – you’re basically buying time .

There is a possibility of a cure and ongoing research but for our son, it is too late.

The impact on Ethan’s life so far…

Ethan now has a peg for medications . He is on a special diet of blended food. He uses thickener through his drinks . His speech is all but gone and he’s losing his ability to walk and eat .

Yet he smiles and laughs and tries his best to sing and dance still.

And the impact on ours…

It’s devastating to watch your child fade away . It’s an eye opener, a reality checker and a perspective maker. It’s changed us profoundly . It’s given me life and broken my heart a million times over.

Our support…

For a long time we had sweet feck all! We did have a family support worker from 2010 for ten hours a month. This was to be taken off us in 2012 but I fought tooth and nail to keep him as he adores Ethan and is very much part of the family now.

Temple Street Children hospital have always been excellent at trying to get us supports and help here in Galway but up until 2013, we were getting no Respite and no outside help , only ten hours a month with the family support worker.

We’ve two other boys and we have to give them a childhood too , without help , that’s very difficult .

Currently we have respite , home help and Lauralynn

LauraLynn and the struggle to accept our need…

LauraLynn and much more support ( more respite ,home help and social worker, community nurse, public health nurses…) all came into the fold last year as Ethan had a rapid decline . He lost the last of his speech and became very violent .

We thought we were going to lose him. LauraLynn stepped in to offer support for Ethan and us , our family.


I was afraid of LauraLynn because the word “hospice” is attached to it . I didn’t want to go and refused the first time it was suggested. I felt it meant that I was ready to let my baby go – I’ll never be ready .


But with a bit of support from our medical teams here in Galway and Dublin we ventured up late last year.


It was surreal. It was heartbreaking . It was beautiful.The staff are amazing .
 We haven’t been back since due to ill health and getting the time off to go there(husband works outside of the home)  but we are due back in June for a few days – this time all of us .


I’m anxious about my other two boys experience there ; I am sure that they will find it hard but also helpful , as there will be a team for them too so they can talk and play freely .

Ethan

 

Coping with it all…

I didn’t for a long long time. I was great at locking Hunter Syndrome away in the back of my head during the early days .

But Hunter Syndrome didn’t break it’s promise to me – it did take and still does take and take from my son,  so I had to face it .

I’ve had a lot of counselling and recently I have turned to mindfulness -which I have found to be brilliant for me . I have severe panic attacks and suffer with anxiety, stress and everything you’d expect a parent of a dying child to live with – but I am managing it as best I can.

I also writeI made a little dent for me and my style of writing. I have found my niche and my soul finds peace behind the computer screen while my fingers dance over the keyboard.

The highs along the way…

Ethan.

The people I have met .

The kindness I have been witness to.

The families that live this life along side us , whether they are in Ireland or New Zealand !

Ethan getting a courage award, a make a wish trip and his pending 16th birthday celebrations .

The funny stuff Ethan did when he was younger .

Ethan’s laugh .

Ethan’s ability to bring out the goodness in people while calling them a Ballio – let me explain that a little – when we were told Ethan would lose his speech ,we stopped correcting the curse words he used and to this day he still uses the word Ballio which is the B word .

Simply put Ethan has been the greatest high through the diagnosis.

And the lows…

Hospital machines , watching them ,praying for the stats to climb up so my son doesn’t need to be ventilated.

March 2008 – the day I really heard how deafening silence can be .

Ethan’s violent outbursts especially when he’d hurt himself. I’d take the kicks, punches , pinches over and over rather than to see him hurt himself.

Ethan being sedated for his own safety.

Coming to realise that Hunter Syndrome will win this.

The support I need…

Help for my two younger sons . I worry about their mental health.
Mental health check up for us , Ethan’s parents and extended family members.  When we ring regarding Ethan’s needs be it a huge thing or something small , I wish we didn’t have to go on a damn list.

Yes I’m asking for special treatment. I wish we didn’t have to reapply for medical card or for Ethan disability benefit , I really think families like ours could do without that stress . Once a child is deemed terminal everything should be automatic , I shouldn’t have to prove he’s not cured …ya know ?!

I do wish those who don’t know about Ethan’s condition wouldn’t wait to give us the supports we need until it becomes a crisis ; for example I have been asking for a home adaptation for two years now which has now hit a crisis point as Ethan is no longer able to sleep safely in his bed at night , but we still have to wait for all the paperwork and  approval before they city council even think about building a downstairs bedroom and bathroom. This was the stress I was trying to avoid , I thought if I applied in plenty of time it would all be there for when Ethan needed it but alas that is not what happened due to I believe a lack of understanding of the word ‘progressive’ in Ethan’s syndrome.

My advice for parents whose child has received the diagnosis of a life-limiting condition…

My advice would be to make memories .
Ask for a good social worker , an experienced one who can fill out all the forms and just get you to sign them – trust me giving up a job will be the first thing you’ll do ( I did)
Know the law regarding the state’s obligation to your child.

Take a mindfulness course , give it your all , it will help .

Remember that life no matter how sad, is for living. Enjoy as much of it as you can while you can .

It is perfectly fine to shut yourself off from the world , just remember to open a window, even on a bad day.

I will leave you with a quote which really sums up what it is like living with a child who has not only special needs but is terminally ill –

“You are now in a secret world. You’ll see things you never imagined; ignorance , rudeness and discrimination …but you’ll also witness so many everyday miracles and you’ll know it. You won’t think a milestone is just a milestone , you’ll know it’s a miracle. You’ll treasure things most wouldn’t think twice about . You’ll become an advocate, an educator, a specialist and a therapist but most of all, above all this , you’ll be a parent to the most wonderful child’ –Written by me (Ger Renton)

Ger and her boys.

 

 

 

 

 

Teenaging in my shoes – I have Cystic Fibrosis

Benat like most fourteen year old boys loves computers and tennis. Unlike most fourteen year old boys however, his daily routine involves medication, physiotherapy and blood sugar monitoring –  because Benat has Cystic Fibrosis.

Ireland has the highest incidence of Cystic Fibrosis in the world and here Benat talks to me about the realities of living with this incurable disease.

Benat

What Cystic Fibrosis (CF) is …

CF is an inherited disease that primarily affects the lungs and digestive system, it causes mucus to build up in the lungs and you tend to get frequent chest infections over time.  I got diagnosed with Cystic Fibrosis (CF) when I was 19 months, which is quite late because they now diagnosed CF at birth.

Current treatment..

There is currently no cure for CF and the life expectancy for this awful disease is about 38. There are currently two drugs approved for Cystic Fibrosis here in Ireland to help prevent CF getting worse called ‘Kalydeco’ & ‘Orkambi’ these are not cures so they don’t stop all the symptoms of CF.

What the infamous Orkambi drug has meant for me…

Just over a year ago, here in ireland Orkambi was approved for patients aged twelve and up. Before its approval I was thankful enough to be on the Orkambi trial. That meant I got a head start on this amazing drug.

I started the Orkambi trial in January 2017 and I was expecting it to work straight away (which was not the case).

Orkambi for me took a good 6-7 months to notice changes such as my weight – my weight went up by approximately 16kg!

I grew a lot taller, I now have a lot more energy and better overall health.

My lung function has gone up also by a good 4-5% since taking Orkambi. I haven’t needed to go into hospital for anything other than my routine 4 monthly appointment. So I would say for me, Orkambi worked in a slow way but made me so much better

How Cystic Fibrosis impacts my life…

CF impacts my life in different ways, for example, every day I must take Nebulisers, Tablets (25), Inhalers, Airway Clearance, Exercise, Insulin, Manage my blood sugars.

Every day I have to be careful of who is well and who’s not. With CF, if I’m near someone who is sick I can very easily pick up whatever they have if it’s a cold or a bad cough. So I’m always wary of who’s well and who’s not.

 The biggest misconception…

I would say one of the biggest misconceptions with CF is some people are afraid they’ll catch CF. It’s impossible to catch CF because its is a genetic disease that’s inherited from both parents.

 One thing I wish people knew about CF is that we may look fine on the outside but you don’t know what’s actually happening inside.

How my friends react…

When I tell my friends I have CF, it’s quite funny because most of them have never heard of it and are always interested to know about it and there always very supportive.

Not letting it restrict my dreams..

My hope for the futures in to go into media particularly TV and Radio.

Benat – living the media dream!

To learn more about Cystic Fibrosis visit Cystic Fibrosis Ireland here