*Mary is 37 years old and married to her husband for the past 8 years. They have a 3 and a half year old daughter who means the world to them. Mary works outside the home in a job she describes as not stressful in itself but that has very limited flexibility with employers who are not very understanding when it comes to needing time off – even if her daughter is ill!
Mary finds motherhood incredibly difficult and even goes so far as to describe herself as “not a typical mother”. Here she talks to me about why sometimes she hates being a mother, her difficulty with social media reflections and why she wishes people wouldn’t shame those who don’t conform to type.
I had the perfect pregnancy. No sickness at all. My daughter was born 3 days after her due date. My waters broke naturally in the middle of the night, but labour failed to progress, and I ended up being induced. That didn’t work either, so I had an emergency C-Section. It was very traumatic. For medical reasons, I needed a large amount of pain relief in a very short amount of time. This meant I had really frightening hallucinations after the birth, which left me traumatised, so bad that I ended up having to give my daughter to the nurses for 2 nights as I couldn’t manage. The nurses in the hospital were not very helpful. I was in extreme pain after the c-section. I kept telling them that something wasn’t right, but they fobbed me off by telling me – “its normal after major surgery”.
However, it turned out that I had a problem with my bowel from surgery. A small procedure sorted it out, but I ended up in hospital for about 10 days. I cried every day, but I put it down to the ‘baby blues’.
When baby came home…
On the day we brought baby girl home, I was terrified. I told my husband ‘we need to give her back, we’ll give her up for adoption’. I was dead serious. He laughs now, but at the time I was terrified. I was totally and utterly overwhelmed.
My husband had no extra time off, so he went back to work almost immediately. Every morning when the door would close behind him, I felt so alone. I could see the day stretching out ahead of me, and I would think ‘Another day of this. Another day of being a terrible mother, of struggling through the day, praying for a break’.
I genuinely believed that I was awful at this ‘mothering’ thing. I took things one day at a time, but I hated it. Hated being at home with this newborn who never settled. Hated being such a failure – feeling like she deserved so much better.
I always say that I ‘parented by numbers’ when she was a baby. I fed her at regular intervals, put her down for naps, cuddled her when she needed it, but I couldn’t enjoy it.
Self-loathing set in very early. I would tell me husband ‘that baby won’t settle. She hates me. She doesn’t want me, she wants you/your mother/my mother/anybody else’.
I was frightened all of the time. Frightened about the future. Frightened I couldn’t bond with baby. Frightened my husband would resent me for how I was. I really believed that what I was feeling was real. I believed that I would never bond with Baby. I believed that what I was feeling was just because I wasn’t good at being a mother. My low self-esteem allowed me to feel like that.
As time passed…
As the months went on, baby thrived. She really did. She was a happy, contented, well-fed baby. All developmental milestones were met. I knew I should feel lucky, but I never felt happy.
I even returned to work a month early, which (probably) contributed to having a nervous breakdown a year later.
It would seem obvious to most people, but I had severe post-natal depression. It only got diagnosed when my daughter was maybe 1.5 years old.
I am lucky to have support, even on the days when I didn’t want it. Even on the days when I resented those around me for having a better relationship with my daughter than I had. My mother-in-law was fantastic. My husband was fantastic. Without him, I wouldn’t have got through this.
I still have panic attacks and anxiety. I am still taking anti-anxiety medication. I have to be strict with myself to take 30 minutes by myself every day.
The anxiety has brought on Irritable Bowel Syndrome (IBS), and that is tough to manage on a day-to-day basis.
If I’ve had a stressful day, I get crippling stomach cramps. I have to get help to look after my daughter. I worry all the time about how I’m going to take care of her if I relapse.
My daily routine…
We get up between 6.30 and 6.45am every day, usually my daughter wakes us.
Husband leaves for work at 7am.
I get daughter ready for school, and drop her to the childminders, who then drop her to school.
I have to be home for 5.30pm every day to collect her. We go straight home and I bath her, give her a light supper and put her to bed for about 7.30pm.
Husband gets home just after that. I spend the rest of the night preparing dinner, lunches and getting everything ready for the next day.
At about 9.30pm, I usually take my 30 minutes time-out with a book, which invariably leads to sleep. Thankfully!!
(No quality time mid-week. Poor daughter only gets an hour with us in the morning, and another short while in the evening before bed).
She is quite a demanding child. Very difficult at times. Most of her behaviour is typical for her age, but she is very clever, and knows how to pull strings/manipulate us. She knows we’re tired. She knows that Daddy is a soft touch.
My little girl…
My daughter is a lovely child. She is extremely intelligent, but quite a quirky child. She says the strangest things – words/phrases/sentences that are beyond her years. She hated hugs and kisses, etc until the last maybe 6 months. Now she is very affectionate.
I do feel that she has sensory issues, but it was been a struggle to get any kind of assessment from health professionals. They say her needs are not severe enough to warrant further investigation at this stage. However, I feel she at least needs some Occupational Therapy, or other kind of Therapy, as she has extreme tantrums/anger/behavioural issues.
Her tantrums involve her screaming at ear-piercing level, sometime for 30 minutes. Lately, she throws things across the room when she is angry. On the bad days, when she’s tired, etc, we sometime avoid bringing her anywhere where she might get overwhelmed. That’s how we manage our own stress, I suppose. When we just can’t take another tantrum because we’re exhausted, we have to think carefully about where we go as a family.
It has gotten slightly better the older she gets, she is less sensitive to certain places , but when she was aged 1-3, I couldn’t bring her to indoor play centres (Too noisy ,too much stimulation), restaurants (She hates being tied down or strapped in to high-chairs, etc), or any organised activity where there would be loads of kids. It was all just too much for her.
Now I feel like the luckiest woman in the world, when it comes to my daughter and husband. She and I have the loveliest bond. I can’t wait to get home from work every day just to see her smiling face. There are days when I think I’ll never forget what I went through. But there are also days when I feel like I can take on the world. Because going through it makes you tougher when you come out the other side.
I often wonder would I be this stressed and anxious if the birth had been less stressful, and if I felt supported in the immediate aftermath during my stay in hospital. Neither my husband and I slept for those nights I spent in hospital. Because I was in pain, and probably a bit demanding, and because they had to look after baby for me in the hospital, I just felt that the nursing staff treated me horribly. They felt that I was a trouble-maker. At least that’s how they treated me. They even conducted a ‘questionnaire’ on me one day – they got one of the lesser known managers of the ward to pose as an ‘Independent’ Auditor of their services. I only discovered some weeks later when I met the Obstetrician that the ‘survey’ did not exist. He had never heard of this lady, or the audit she was purporting to carry out!
They also told me that I would not be able to care for a baby when I got home. That I was oblivious to how hard it was going to be. Why would a nurse professional tell a new mother this??? When I started crying, they told me they thought I “almost certainly had mental health issues”. They even asked me if I would consent to a Psychiatric evaluation before I was discharged.
Believe me, although I was depressed, they definitely made me worse. They also only conducted these little chats/interviews/audits on me when I was on my own. They always waited until my husband had gone home.
Anyway, I feel that the situation in hospital made an already life-changing time much, much worse.
I also feel that new mothers should have counselling offered to them in the weeks after they give birth. This may help to recognise PND earlier.
I also didn’t feel that the Public Health Nurse was much good. She was covering for another PHN, and seemed like she didn’t have much time to spend with us.
However, I really feel that society has us conditioned to believe we must be ‘perfect’ when we have a baby. That we must do things a certain way, and no way are we supposed to complain about the experience. No way are we permitted to talk about how tired we are. No way are we permitted to say how little we’re actually enjoying the ‘precious time’ with a newborn.
Before “becoming mum”…
I was a fiercely independent person before I had my daughter. I loved my own space, I loved being able to flit off on a weekend away anytime I like. My whole life was impromptu lunches, impromptu nights out. I thrived on the last minute-ness of it all.
Then along came baby. Maybe it was because I wasn’t what you’d call a ‘young’ mother. Maybe because I had reached my 30s, I had it all worked out, or so I thought. My husband and I were settled, we had a lovely life, we had our own little bubble of nights out, romantic nights in, trips abroad, etc. And then overnight, it all changed, and in the most traumatic way possible.
Now don;t get me wrong – we LOVE LOVE LOVE our girl. But that doesn’t mean that I don’t struggle. Every. Day.
I’m not a typical mother. Sometimes I hate being a mother, but thankfully those days are few. But I’m not the mother gushing about her kids. I’m the one talking about my struggles. And that’s not the done thing in this country.
Having another child…
I am TERRIFIED of getting pregnant again. I wouldn’t be the pushover and the nervous mother I was, but I would be terrified of getting PND again. However, I think I’d still do it if the urge was strong enough.
My advice to others who feel the same…
Talk to your GP. I am very lucky in that I found a wonderful straight-talking GP.
Also- if someone told me that they felt like I did – I would tell them in no uncertain terms that they were wonderful. That their baby loves them, just as they are. I would tell them to talk to their GP, and I would even offer yo mind the baby, or go with them to the GP.
Women need to talk more. But not about how perfect their lives are. About how shit they are feeling.
And we need to stop shaming mothers who don’t conform to this perfect stereotype. Social Media is a useful tool when you’re at home with a newborn and you’re lonely. However it is also dangerous, when all you see is images of perfect mothers holding perfect babies.
I was TOTALLY and utterly unprepared for motherhood. Ante-natal classes should show you pictures of a c-section scar, pictures of a baby with poo running up its back. They should prepare you more for the fact that your life is going to irrevocably change, at least for 2 years or so.
*Mary’s name has been changed to protect both her and her family’s identity.
Lenore ,who is married to Ian and lives in Cork, is a mum to six children. She is currently a stay at home parent but describes herself as a “Jack of all trades” in her younger days,having previously worked in childminding, sales, marketing, run her own business and built up a successful Facebook page – amongst other roles.
Two miscarriages and a work-life balance that saw Lenore working excessively hard for very little return resulted in her making the decision to stay at home full time with her children. Ian supported her decision completely and Lenore says it turned out to be the correct decision due the unexpected turn family life took..
Realising something was “different”…
I think as weird as it sounds, I was anticipating something when pregnant, I remember being very upset and not being able to put my finger on it. Bodhi had hearing loss from birth which was detected within 24 hours of him being born and he was also admitted to the neo-natal unit with suspected sepsis and basically whipped from me in the ward which was very upsetting. At the time I thought that was what my instinct of being upset was about – and maybe it was.
Up until the age of 12 months he was back and forth regarding his hearing to various departments and he had recurring ear infections. He reached all his developmental milestones and was a very happy baby. Around the 12 month mark I mentioned to the GP that he was twirling his hands when sitting in the high chair but she passed it off and I thought no more of it.
At 18 months he begin hitting his head and screaming, which I again brought up with the GP, but as we were still not sure what was going on with the hearing loss, we just presumed he was frustrated with regards to not being able to hear properly. We had a bit of a fight with regards to opinions on what to do with his hearing up until the age of 2 and a half. It was after seeing a ENT consultant for a second opinion when Bodhi was 2 that he also suggested something else may be at play. He had an operation at the same time, the effects of the general anaesthetic affected his sleep for six months after and he just screamed constantly.
We were at our wits end with nowhere to turn. Around this time, when Bodhi was 2yrs and 7 months old, we brought him for a private assessment in Dungarvan and the psychologist, Laura Regan Morrissey, diagnosed autism and sensory processing disorder.
When we suspected autism we reached out to SHINE autism centre in Carrigaline who were a huge support, Kieran Kennedy called to our home and we found out more information in that one hour with him than in the two years previous. He suggested things for us to be doing, who to go to for an assessment, what to apply for in terms of schools and allowances. He advised us of our rights which we had no clue of and we spent the next few weeks in a haze but got the appointment with Laura fairly quickly.
By having this assessment done it gave us access to getting home tuition for Bodhi which was the beginning of his amazing journey. Unfortunately at the time we didn’t realise that a private assessment did not gain us access to school waiting lists or placements and we still had to wait for our HSE assessment in order to gain access to schools.
Waiting for HSE assessment…
We were very lucky as a human rights and civil law solicitor based in Dublin, Gareth Noble, reached out and lobbied on Bodhi’s behalf. At the time he had taken the HSE to the high court regarding the delays in their assessments for other families. We had also just been refused two school places at the time based on having the wrong report so Gareth fought with us and he sent a warning shot, so to speak, to the HSE in the April 2017 and gave them a date as to when the assessment was to be carried out.
The assessment was done and the report was in our hands by the end of May 2017 at which time we had missed the deadline for school placements but we were blessed in being able to attend SHINE, not without a fight mind you as the SENO at the time wanted Bodhi to attend an early learning unit in the city and travel by cab each day. This is the same child who would at the time vomit if I left the room due to anxiety and to this day will get very upset if I get out of the car and walk around to put petrol in or wake in the middle of the night and be frantic if I am not present.
I had to fight to not accept this place as it wasn’t suitable to his needs but it was a hard battle. I think though it prepared me for the many more battles that were to come and that still keep coming!
My feelings upon diagnosis…
Heartbroken and relieved if that makes sense. Heartbroken as we were completely ignorant to the idea of autism, we had a perception of the idea of it in our minds from media, films and the typical stigma of what you think it will be like.
Relieved because now I knew what we were dealing with I could throw all I had into getting what he needed done. I will take a day or two to be very upset or angry and wallow in it. Then I say, right I have a choice here to get bitter or busy and I get busy, so that’s what I do.
I think Ian struggled a bit more as Bodhi is the only son and I guess you have expectations of what you will do with your son and it hit him hard at the time, that this may not necessarily be the case, that Bodhi may not play rugby or want to go to matches and its a hard pill to swallow. If you asked Ian now though he wouldn’t even bat an eyelid at it, he says it is what it is, they just make their own things to do as a duo now and follow their own rules. He says we will deal with whatever head on and he is right, our motto is “just keep swimming”.
Awaiting state supports…
We haven’t been offered any supports yet. There was one meeting we were invited to which was an introduction about living with autism that we could ask our family to attend also – both of our parents and my sister went too.
It was down to us to determine what we would throw money at therapy wise to help Bodhi progress. It`s very hit and miss as therapies cost a lot of money and you don’t want to be spending money on things that won`t work, then how long do you stick at it to decide to continue or give up. Where do you draw the line?
It was only when Bodhi started Sonas Junior school for Autism this year that we have been able to access supports that are provided within the school. So since September alone there have been maybe five information meetings by the Speech and Language Therapist in the school and a possibility of attending a course that I have been trying to get on for almost 3 years now.
Our support network…
The biggest supports have been people like our families, our parents and sisters who all live locally and help out if they can. They all work so they don’t mind the kids regularly or anything like that but can fall in when it`s an emergency which is great. My friend Aileen who calls regularly to see the kids and have an actual conversation with me. People like Alma in SHINE centre for autism, the home tutor we had for Bodhi, Elaine. Bodhi’s teacher Eimear, Valerie of Tony the Turtle, Sharon of Autism Radio.
Other parents have been a lifeline in a very isolated and lonely world, they are the ones who get it and also offer hope as they may have a child a year or two ahead of you so you look to them to see the possibility of what could come in time. I have friends who have blogs and I have friends who are just parents and I tend to turn to each of them for different things. I find that groups and pages can be a curse and a blessing, you are already stretched to the max energy wise and are drained in general so I have to put a bit of distance between negativity and myself or I will feel worse and it’s just not good for my own mental health. My take is, I do things through humour and wit and if I get mad or upset, I blow a gasket and get on with it and it’s over with. I cant sit in it or be scrolling through things that make me feel worse, I had to do a serious declutter of accounts I was following for this reason. You need to get selective of who you allow into your space and who you give your very limited time to.
The impact of Bodhi’s diagnosis on the rest of the family…
I would say from the age of 2 to 3 it was pretty full on and we couldn’t see the wood for the trees. He was very frustrated, there was no speech and a lot of screaming, couple this with a newborn at the time and Bodhi not sleeping and it was a very tense environment for a while. Oh and the guilt, the guilt that comes with not dedicating time to your other children and you are very conscious of every thing you do not effecting them or having them resent their brother, if that makes sense.
He is now four and things are very different, he has some words, he can communicate with us, he tends to gravitate towards the different five sisters for whatever he needs at the time. He is quite the Don Juan. He can be found in the middle of a group of teenagers now and has no issue introducing himself to a group of Spanish female students or a leggy blonde in the ATM queue.
I think his diagnosis has opened all of our eyes in a positive manner, the kids are more aware of others with special needs, we are all way more accepting and in turn it has introduced their peers to autism and what it entails. When you come to my house you could be faced with a child who is giving you a hug, one who refuses to wear clothes or someone who has fired something that has just missed your head by half an inch. It certainly keeps the family home on its toes anyway. We all have become much better at understanding cues and reading into triggers which may upset him or cause a meltdown. We know what to do which helps him calm down and now that he can use a prompt such as “I want…..” it helps reduce the screaming a lot.
I think it was harder for our parents too as this was their first time dealing with autism, its tough, you cant just have a birthday party, you cant just have people call to your house unannounced, you cant just buy him a toy for Christmas, he doesn’t understand who Santa is, he has no clue what presents are, if you have a cake with candles he assumes its his birthday and doesn’t understand we all have birthdays! Bodhi has a huge issue with eating and anxiety and is waiting to see a psychologist regarding this matter so it’s very hard to bite your tongue when someone makes a remark like “he will eat when he is hungry” or keep on and on at him asking him “do you want some chicken? do you want a banana? do you want an apple?” it’s like for the love of Christ would you stop, we have a limited list of what he will eat stop asking him!!!! We have a routine for him and if you go off course it throws our day into chaos long after those who have called have gone.
The impact on me…
I would like to think that it has made me a better parent. I am definitely the one who understands him the most and who can read a situation in a few seconds and can determine whether its a good or bad idea. It is very hard at times, to be a different parent to six children who all have completely different needs. I find I can be so tired and drained from having to fight for every bloody thing for Bodhi and the kids in general that I can be wiped out and a bit snappy or just maybe not having as much energy as I want to be able to do things individually with them but it is something I am trying to make more of a conscious effort with. Some days you would literally need to divide yourself into seven to keep them all happy, husband included!!
It`s tough to not just be able to get up some days and say we will go for a spin, or we will go for a meal, the cinema, to a family event – these are just things we cant do altogether and that I find really hard. Routine is paramount with Bodhi and if something is on that the girls want to go to it will be either Ian or I will go with them and the other will stay home with Bodhi and the smallies.
I always say I look forward to the day we can have a holiday together and then I think “sure my eldest will be 18 in two years, the time has just gone”, so maybe the reality is we may never have a family holiday together and that makes me quite upset then. I have to try and take things day by day and some days hour by hour. I lost my cousin and best friend in June, six days after the birth of my youngest, two weeks after that we moved house that we had spent the previous six months renovating, so I am trying to deal with a lot and not crack, trying to get out of the house each day for a 40 minute break is what is needed recently! That and a lotto win for a holiday and a stress free Christmas and the money for private assessments for the three in the family who are waiting, at €1400 a pop!!!
When Ian is off he lets me sleep in though, those mornings are what gets me through a lot of days when its all a bit too much, I am a night owl, I do all my thinking and writing at night, its not unusual for me to be at it still at 2am as I find the dead of night the most peaceful time to do my thing. Ian could sleep on a clothesline then and can be asleep in 30 seconds where as it takes me about 45 stretches, 32 pillow turn overs, room at a certain temperature, lights off and a human sacrifice to the Gods to get to sleep. If someone cries or moves then its me that is suddenly sitting straight up wondering what the noise was where as a marching band can walk through the room and Ian wont even hear them. So I find I need my sleep then in the mornings and am a cranky bitch where as Ian is full of the joys of Spring, another reason why he is the yin to my yang haha
My fears for the future…
I think that whatever I put energy into will come into fruition so I don’t like to look at it as fears really. I want to focus on him being the best that he can be, we always want to ensure that he can live independently and you do wonder what will happen when you are gone, who will look after him, will it fall to one of the girls? or then again the rate he is going he could be the one looking after all of them. He never ceases to amaze me!!!
And my hopes…
That things change in Ireland – the system, the wait list for assessment and services, the lack of school places, the disregard for our children in general and the way that they aren’t a priority. I hope that this all changes and we are the generation of parents who get off our asses and do something about it on their behalf and we achieve something for them and the kids with autism who follow.
I just want Bodhi and all of my children to be happy and healthy, anything else is a bonus. I can`t wait for the day where we he and I have full blown conversations and we can have some adventures as a family which I know will come in time.
The most frustrating things…
The delay and lack of services, support and help. The lack of school places and the way you are completely disregarded. I was completely oblivious to autism. I always say it’s very similar to Harry Potter, you suddenly are part of this whole new world you never knew existed, Hogwarts is suddenly real, you are a wizard, you are now aware of other wizards, there is a secret nod in salute when your people see and recognise what you are going through, we have all the muggles who are totally unaware of our world.
The ministry of magic is the HSE, you cant figure out if it`s there to help or hindrance your journey and the dementors are the assholes in Government who take the pay rises and benefits while sucking the life out of the rest of us.
We know the money is there, we know that they can spend money on absolute ridiculous events like the Pope`s visit, or when Prince Charles and Camilla came to Ireland. Yet you are trying to tell me we have no money for hiring people to tackle the assessment lists which parents are now waiting three years on to be seen. That they cant hire psychologists and therapists to provide the services that families are now waiting up to five years to even get called for. They promise 20,000 SNA placements but fail to mention the bells and whistles attached to this and that they are all imaginary positions it seems.
How they can pull money out to build new schools but its a problem to fund a unit. Our kids are treated like a hindrance and are being denied their basic human rights to an education and that is what really pisses me off and gets on my wick when you can see that those in the position of power don’t give a shit, they are just biding their time to cash in on their pension.
I also notice that there is also a lot of negativity being focused out of mere frustration in the wrong direction or targeted at the wrong people entirely. The parents are getting stuck in one another over things and there is acliquey mentality that I just cant be dealing with, you either take me or leave me, you know I will do anything to help anyone but I stay in my own lane and am focused at the task at hand. People will criticise you as your child isn’t autistic enough, because he looks cute and autism isn’t cute for everyone, they will be pissed off at you for doing something and pissed off at you for not, you cant win and I find that kind of bitchiness within the same circle of trying to all achieve the same thing very frustrating.
And now my toddler is showing signs…
We were told in Sept/Oct that she would be seen by the Area Medical Officer (who basically meets with us to determine whether an assessment needs to be done, so its not even an assessment, more bloody red tape) within six weeks. Now apparently they are busy with HPV vaccinations and it wont be until Jan/Feb that they can now see her. She is on the assessment of needs list which is basically a three year wait and we have applied for Early Intervention.
Our other alternative is contact the solicitor we used for Bodhi, which I have and also make an appointment for her to be assessed privately which we have to do as I cant sit around and wait for someone to help us, the reality of it is, they wont and Indie will be the one who suffers. I have seen what can be done between the crucial years of 2 to 4 with Bodhi and I am going to push that we do the same with Indie and I wont accept anything less. I have done this dance before so I know what to expect now. A private multi disciplinary assessment can cost anything between €1200-1400 and the next appointment available is not until March as the team that carries out these reports are only allowed do one a month. Again more red tape and horse shit within the system but that is where we are at right now. I am in contact with our case officer and she is aware of our circumstances and has assured me she will do all she can to help.
My other children…
I have two others waiting on assessment of needs 18 months now for anxiety and sensory issues, which are also a pre-cursor under the ASD spectrum. I have learned so much in the last two years but basically girls in general present differently to boys and they would not have the typical traits, they would not necessarily have the developmental delay or speech delay. Their concerns or red flags normally would only be raised in school as the issues start to manifest in social settings and girls are the best at masking and acting a certain way in school and completely differently at home. Similar to holding a bottle of coke in your pocket all day and then arriving home and opening it and running for cover.
I also have a child waiting on CAMHS for two years and has very bad panic attacks, anxiety and depression. CAMHS tell you then if you are “that worried” take your child to A&E. The supports in this country are the absolute pits.
We did some sessions of art therapy and counselling which I personally found to be very hit and miss. Its very much a case of having good and bad weeks and having to go with the flow. I know and see the triggers and it is down to me to be their safe place and as long as they keep opening up and talking to me then we are good and things can be sorted. We can always sort things, one breath at a time and one day at a time. In the meantime I keep lobbying on their behalf to get what they need, the irony of it is if you don’t apply within the system if they needed any supports down the line in school they would have to start from the bottom all over again where as if they are in the system the hope would be the help would be there quicker. You would think……
How I cope…
My blog, my writing I find it very therapeutic and a release and I feel there is a bit of mutual healing going on, I get it through writing and releasing and someone else gets it from reading and realising there is someone else out there in the same boat. Other people liking my posts and supporting my blog helps pull me through too as it acknowledges that I may be doing something good and on the right path for me. At times the Evening Echo will ask me to write a piece, Mummypages, The Sun or Image.ie may pick up bits and recently someone in TV reached out to talk to me, so I literally have no idea what I am doing but I am trying to wing it, whether it`s being a mom to six, writing, autism, being a wife, a friend, a daughter, a sister, an advocate, I am winging the lot!!
Ian and I like to have nights where we stay up until 5 or 6am having a few drinks and putting the world to right and those nights help us both cope considerably, although the hangovers don’t help me cope at all at all!!! Getting too old for the recovery period one night out now entails!
The single thing that wold make my life easier…
Money. As stupid as it sounds, it would take the edge off considerably, Ian could be home full time too helping me with the kids, although that novelty would wear off after a few weeks and he would be hoovering the deck outside!!
Money would help get us access to the assessments we need, the therapies all the kids require which we have to pick and choose over who gets what which is a terrible place to be in at times. The mortgage and the bills are taken care of, we could even get one car we can all actually travel together in as one family, oh and a family holiday, we have a communion coming up, have lots to do in terms of renovation still, would love to try and fundraise money to get an autism assistance dog for the kids as we live near the beach and I always am on edge in terms of safety. We always have a birthday or event coming up and I am trying to pull it together money wise what to do for who and Christmas is no different now, you feel you are robbing Peter to pay Paul yet Ian works his ass off and takes every hour going and can sometimes do 6 x 12 hour shifts in one go, he literally works every hour going to pay the bills and make sure we are all taken care of and you know it is what it is, we are very lucky and we wouldn’t change our lives for the world but sometimes it would be nice to have a bit of money there to be able to just go shopping on a whim or pay someone to mind six kids so you can get a weekend away, go get your hair done, do a food shop without budgeting, simple things!!
My advice to other parents…
Reach out to other parents, find blogs, support groups that are local to you, don’t isolate yourself, educate yourself, don’t get bogged down in information, follow your child’s lead and your intuition, don’t be afraid to challenge professionals as nine times out of ten they are acting from a manual they have been taught from and aren’t living with autism 24/7, don’t be afraid to speak your mind and out for your child, you may be the only one who will. Be selective about who you follow and what you read, make time for yourself and always have hope. The reason I set my blog up was simply for this reason alone, I had no one to turn to, I wanted to document our journey and milestones so people could see the progress and that there is hope. I also wanted to do it through humour, wit and in a warts and all kind of way. At the end of the day autism isn’t the problem, the lack of services and supports out there are!!
Maybe that if anyone knows any one who is facing an autism diagnosis to send them my way, I am not saying I know all the answers but I can certainly point them in the direction of who can. That is what its all about lending a hand to those who are coming up behind you so they in turn can do the same. If others in power wont help us then we have to help ourselves!
Susan, originally from Sligo but living in Cavan is a 38 year mum to 15 month old Alex and brand new baby girl, Chloe. Susan is a stay at home mum now but prior to having her children she had mainly worked in Montessori.
After the birth of her son Alex, Susan struggled with postnatal depression (PND). Here she shares her deeply personal experience of PND and explains why, even now, an element of guilt remains with her.
Pregnant with my son…
Overall my pregnancy was good, no major concerns or complications. A rise in hormone levels however did cause a lot sleep issues, where eventually I had to learn to sleep sitting up. Coming from someone who could not function on less than eight hours sleep at night, this was a challenge. I was quite sleep deprived before he was even born and somehow thought I was prepared for all the sleepless nights to come.
The birth was quite quick. He was born 10 hours after I went into labour. It did become difficult in the end as I had trouble pushing him out. After an hour of pushing I had to have an episiotomy. Soon after that it was obvious he still wasn’t coming and he had to be suctioned. Within minutes the doctors noticed his breathing was very fast and initially thought he was distressed but by later that afternoon he was in an incubator in ICU. After days of test I was told he had been born in congenital pneumonia. He spent 48 hours in an incubator then a further 5 days in special care.
He was born on a Monday morning and I knew by the Wednesday having suffered from depression for years and through my pregnancy that the way I was feeling was not just ‘the baby blues’ or depression – it was far more than that. I was due to be discharged on the Wednesday but my stitches had burst and I was put on IV antibiotics for 48 hours. As upsetting as I found it, I was also glad to not leave my son. We lived an hour from the hospital so it was a comfort to me to have him one floor down.
How it manifested…
Initially I felt both numb and emotionally overwhelmed. I would sit and look at him in the incubator and think ‘is he really mine, did I just have a baby?’ In some way I felt completely disconnected from him but knew we needed to bond. There was so much going on with different tests, some of which I wasn’t allowed to be there for, that I just could not process anything – all I could do was cry. I felt so lost and lonely, like no one else would get how I felt, yet I knew there were plenty of woman out there who could totally relate and understand.
Somehow though when you’re in that situation at the time you feel you’re the only one. Over the next few months, I experienced feelings and behaved in ways I never thought I would. My need to control everything was overwhelming. I was not me, I was living someone else’s life. I became someone I didn’t recognise and had no control over my thoughts or emotions. It was one of the worst times on my life yet it was meant to be the happiest.
Hiding my feelings…
My mum and husband had noticed before I left the hospital. I hid it from everyone else, afraid I’d be judged for how I was dealing with motherhood and decisions I made or even things I would do in relation to my baby.
My mum and husband were my greatest support. They were amazing. Mum stayed with us for weeks after my husband went back to work and honestly without their love and constant support I don’t know how I would have got through it.
My lowest moment…
To be honest I had quite a lot of lows but the one that stayed with me the most was the overwhelming feeling of wanting to get in my car drive away and never come home. I never wanted to hurt myself or do anything serious, but I felt like I couldn’t be a wife anymore or the mum to my son. To me they both deserved better. I had myself convinced they’d be fine on their own and my husband would get more that enough help from his family.
How PND affected my relationship with my son…
For months after I found myself looking at him and not recognising him as mine. I was afraid to hold him, to love him, to be his mum. I did my best to bond with him because I knew how important it was, but felt bad for missing out on that first week of his life where I didn’t get to hold me much.
It took a long time before I started to feel like a mum and to even enjoy him. As hard as that is to say, my for the love didn’t really start to grow till he was almost a year old, even though deep down I knew I loved him with all my heart.
How PND affected my relationship with my partner, family and friends…
Throughout all of my post natal, my husband was my rock. I always knew I had a good man but I realised it more as time went by, however good or bad my days were. He was always there to hold me, to support me, and even backed me when I’m sure at times my idea of handling things seemed crazy.
He never once questioned me and I will always love him for that. I was also very lucky to have my mum stay with me during the week when my husband went back to work. She was not just my mum but a friend I needed to just be there, I’ve always had a great relationship with her and I feel blessed to have her in my life.
Within a couple of weeks of coming home I asked my GP to refer me to counselling.
I had been referred to my local health centre to speak with a psychiatrist. Unfortunately I could only be offered 30mins every 3weeks which I thought was very poor and not really of any use to me. I thought how that restricted time could not possibly help me process everything that was going on in my head.
I could not afford to go private at the time and made the decision not to continue but to work on my mental health at home. In the past I have had a lot of counselling for my depression and took what I learned from those sessions to deal with it all. Slowly over time and with the support I had around me I was able to work my way back of the dark place I was in.
I had cut myself off from the world, including close friends and family. I felt it was easier to not talk to anyone rather than having to talk about what I was going though. I was ashamed and afraid no one would understand.
It was at least twelve months after he was born that I honestly started to feel like me. A year before I believed I was doing a good job, felt happy and that yes my son deserved to have me as his mum.
The fear of relapse…
Yes the thought has come into my head every now and then. I’ve often wondered if it did happen again, would the same thoughts and feelings return, will I recover as quick, or how it will all play out. But then I stop myself and think it may never happen again and even if it does, I’ll be ready to take it head on.
Having more children…
I’ve always wanted to have more than one child, and even when things were very bad I kept telling myself, I cannot let this experience stop me from having my family.
One week ago I gave birth to a beautiful baby girl, feeling completely free of post natal there is no comparison in how I feel towards my daughter. I look at her and I know she’s mine, there are no words to describe the love I feel for her and I am not afraid to be her mum.
With that however comes a sense of guilt towards my son. Guilt that I although I knew I loved him I couldn’t feel it. I missed out on so much bonding in the first few months, it’s a part of my life I wish I could change but can’t. I know the guilt will ease in time and I know that my son feels very much loved by me. Now that I am in a much happier place I can move on with my family and love every bit of being a mum.
Advice for other women going through the same thing…
I’m honestly not sure what advice I could give, I can only share what worked from me. I would encourage any woman to talk to someone when they are ready. I found writing about my journey starting from when I found out I was pregnant the most effective way of processing it all and to help me move on.
There is nothing to be ashamed or embarrassed about. We need to speak out more, have our voices heard and create an awareness that will encourage more women to come forward and share their story so we can all help each other through it.
Ranae, who lives in Dublin, is a 30 year old actress, singer and writer who has a particular interest in natural health. She’s married to Audrey, a freelance assistant stage manager currently working in the Abbey, and together they have one daughter.
Ranae is pregnant with with their second baby and here she talks about the life as a same sex parents, why she chose to carry both their babies and the reactions of other people to her family.
Meeting my wife…
We met in Bull Alley Theatre Training college 11 years ago. We started dating a year later- next week it will be our 10 year anniversary. We got married 2 and half years ago. We waited until it was legal in Ireland. There of course was the option of going abroad to marry, but we always said, if we can’t do it at home, then we won’t do it at all. So we were thrilled when it passed in 2015.
The baby question…
Since day 1 we always knew we wanted kids. We both come from huge families and are both baby mad. It’s a natural thing for us both. We’d have 10 kids if we could afford the IVF!!! So yes, we’ve always been on the same page about that. Deciding how to do IVF and when we decided to do Reciprocal IVF, was always a joint decision and we always trust what the other has to say about it. With something like IVF you have to be 100% a team. It’s such a hard process, I can’t even imagine if you were at odds over it.
Who gets to be pregnant…
We made this decision very naturally together. I have always wanted to be pregnant and to breastfeed, whereas Audrey had no desire to go through pregnancy if it was at all possible to avoid. Besides that, her work is a lot more stable and wouldn’t make sense for her to be the main stay at home parent. It just made sense this way for us. And it has worked so beautifully. I can’t even describe how beautiful it is to have carried our baby and then see every day a little mini Audrey. The 3D scan picture of baby number 2 looks identical too. It’s so precious.
Whose eggs to use…
Because we decided that I would carry our babies, we thought ‘wouldn’t it be cool to use Audreys’ eggs?’ We didn’t even know it would be an option. Way back when we first were dreaming of these things we didn’t realise there was an actual name for it…Reciprocal IVF or Shared Motherhood. When we started looking into it, we found it was one of the most popular ways for female couples to do IVF. Well the most popular in basically every other country besides Ireland, where it is not legal/not legislated for.
Choosing a sperm donor…
This was done through the clinic. Because we were forced to seek treatment abroad, in a lot of Europe the only option is for anonymous donors. So our donor was anonymous and chosen for specific features to match as closely to my own. That how donors are usually chosen, to match the features of the non genetic parent (in this case, me. So basically the male version of me!)
Reciprocal IVF is IVF with a female couple where one partner gives the eggs that will be used to form the embryo along with donor sperm, and the other partner will carry the pregnancy.
IVF was one of the hardest things to go through. It’s such an uncertain time. It’s a massive burden financially, physically and emotionally. And there is no guarantee of a baby at the end of it all. But at the same time, it is amazing that we live in a world where all of these scientific advances have been made and that this is something available to those who need it.
Supporting each other…
We just really stuck together as a team and made sure that the other was ok every step of the way. When we first went to Spain for the first full cycle, we stayed for a month in a lovely Air b & b by the seaside in Barcelona. We just relaxed and cooked really nice meals and went for walks and then walked TV in the evenings. It was bliss and we felt like we were in our own IVF cocoon!
The first attempt worked but I had an early miscarriage. The 2nd embryo transfer a few months later was successful and resulted in our now 2 year old, Ava. We had another failed transfer recently when trying for baby number 2 and ended up changing clinics (and countries!) and we went to Portugal to a clinic called Ferticentro. We actually blogged about that whole journey and we were so lucky it worked on the first attempt.
Family and friends’ reactions…
Everyone has always been so excited for us to have babies. Well aside from the fact that we could no longer be the number 1 babysitters for all our nieces and nephews. Ava is absolutely adored by her cousins and the whole family.
There was definitely some ‘getting used to it’ from my mom, who is a conservative Christian and has had to come to turns with the fact that her daughter is in a same sex marriage. But to be fair to her, since Ava has come along, she has been an absolutely incredible Nana to her and a great source of support for us. She is very hands on and always willing to babysit or do whatever we need. It’s funny how babies can change peoples perspectives sometimes isn’t it?
And reactions of the wider public…
Aside from a few internet trolls (no surprise there!) we’ve generally been met with positivity. Any questionable comments that we’ve ever heard, usually come from a place of ignorance, not of hatred. I think as more and more different family types are shown in the mainstream and in our societies, it becomes less of an issue.
However I do think that because we are two females, people are more ready to accept it. I’ve seen how hard it can be for gay dads, I definitely think that they are treated differently.
The biggest challenges same sex sex parents face…
Financial- as I’ve said, IVF is a massive burden. You could spend as much or more on IVF as you could on a house deposit.
Legal- currently I am considered a single parent. Audrey is not recognised as a parent to Ava. There is legislation coming in soon that will change this, but it’s a very narrow bill which will only include certain family types. It totally excludes those who have done at home inseminations and excludes gay dads. So it’s not good enough by a long shot. We need legislation NOW that will protect all of our family types and also much more legislation in the way of IVF.
As I said before, Reciprocal IVF is not legal in Ireland, which is an absolute disgrace. If egg donation is legal, and sharing genetic material between a heterosexual couple is legal (this is just standard IVF) then not allowing Reciprocal IVF is just blatant discrimination to female same sex couples.
Future questions about the biological father…
It’s absolutely something that we have thought a lot about, but it’s just something that we will have to deal with when the time comes. Hopefully our children will have been raised in a way that they understand that there are lots of different ways to make a family. Unconventional families like ours come in all shapes and sizes and with all the challenges that go along with it. We plan to be open with Ava from the start about how she was conceived. And we hope she will see how much she was wanted and loved from before she was even a tiny poppy seed in my belly.
I think children are a lot smarter than we give them credit for. I remember my nieces Juliet(8) and Robyn(6) asking about our IVF just before we were due to travel earlier this year. For a split second I thought, will they understand this? But I decided to just tell them. That Auntie Audrey and I would go to a special hospital where we would use Audreys’ egg and some ‘seed’ from a kind man (donor) to make a baby. Then we would put that baby into Auntie Naes’ tummy and hopefully I they would then have a baby cousin 9 months later!
I expected a lot follow up questions, but they kind of just got it. And then moved onto a more exciting topic. Gotta love kids. Much more open minded than most adults.
So yes, we will just have to cross that bridge when we come to it.
The best thing about parenthood…
It has been the absolute best thing we’ve ever done. To create a life together is incredibly special. We absolutely adore Ava and cannot wait to welcome her baby sister. I’m really looking forward to breastfeeding again, even though it was so challenging for me, it was still one of my favourite things I’ve done. Also the newborn snuggles. And seeing Ava with her sister might just kill me with cuteness. I’m really looking forward to seeing how they interact with each other.
Advice for same sex couples who would like to have a child…
Get in touch with other Same Sex couples who have been through the process. When we first started there was NO information about reciprocal IVF, and there still isn’t much besides what I’ve written. That’s the whole reason I started blogging. It’s such a lonely place when you feel like you are the only one going through this crazy time. Fertility treatment is no joke. Its hard in every sense. Physically, emotionally, financially. Feel free to get in touch with me via email@example.com and I’d be very happy to chat to you.
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.
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.
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.
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.
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
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.
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.
“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
“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…
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?
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.
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.
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.
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.
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!
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.
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 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.
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.
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.
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!
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.
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!
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.
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 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!
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.
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.
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 .
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 write . I 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…
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)