Category: Parenting in my shoes series

A chat with parents whose experience of parenthood is moulded by the experiences, situations and challenges they face.

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

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

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

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

Realising something was wrong…

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

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

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

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

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

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

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

Handling the news…

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

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

Hunter syndrome and the prognosis…

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

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

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

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

The impact on Ethan’s life so far…

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

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

And the impact on ours…

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

Our support…

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

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

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

Currently we have respite , home help and Lauralynn

LauraLynn and the struggle to accept our need…

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

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


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


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


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


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

Ethan

 

Coping with it all…

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

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

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

I also 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…

Ethan.

The people I have met .

The kindness I have been witness to.

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

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

The funny stuff Ethan did when he was younger .

Ethan’s laugh .

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

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

And the lows…

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

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

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

Ethan being sedated for his own safety.

Coming to realise that Hunter Syndrome will win this.

The support I need…

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

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

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

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

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

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

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

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

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

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

Ger and her boys.

 

 

 

 

 

Teenaging in my shoes – I have Cystic Fibrosis

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

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

Benat

What Cystic Fibrosis (CF) is …

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

Current treatment..

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

What the infamous Orkambi drug has meant for me…

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

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

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

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

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

How Cystic Fibrosis impacts my life…

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

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

 The biggest misconception…

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

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

How my friends react…

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

Not letting it restrict my dreams..

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

Benat – living the media dream!

To learn more about Cystic Fibrosis visit Cystic Fibrosis Ireland here

Parenting in my shoes – My little girl has diabetes

Jenni is married to gadget and technology loving Aussie Andy (who goes by the affectionate and wholly original nickname Skippy in certain circles). Mum to drama and dance loving daughter Alana (7), and would-be astronaut son Zach (6), she loves coffee, spending time with her family and friends, travelling and watching her children play together happily.

Being a stay at home mum wasn’t something Jenni visualised for herself but as she says,  you never know what “curve-balls life will throw at us”.

Jenni’s curve-ball came in the shape of a diabetes diagnosis for her daughter at just two years old. She explains the reality of life with a child who has a chronic disease, and the significant restrictions involved.

Suspecting something was up…

My husband Andy and my sister also have Type 1 diabetes so I was somewhat aware of the symptoms. It all happened quite quickly over the period of about a week. Alana had been particularly grumpy and tired leading up to that week, which I had put down to the typical “terrible twos” stage and the fact that I’d just started a new job after a year off with my babies. As the week went on she started asking for more and more water and was going to the toilet more and more frequently. When she started waking at night crying for water alarm bells really started ringing. I remember lying awake at night googling symptoms and trying to convince myself she was ok – like I hadn’t noticed a big weight loss or sweet smelling urine.

I’ll never forget THE DAY. We spent the afternoon at Brittas Bay with friends, I confided my fears to a friend that same day but again convinced myself she was ok. Then after we got home we noticed that she went to the toilet 3 times within half an hour, so we used Andy’s glucometer to do a blood glucose test on her. The result just read “HIGH”. Our fears were confirmed and we rushed straight to A&E!

Getting tested…

Alana was sent straight to the triage nurse as soon as we arrived in A&E. The nurse did another blood test with a glucometer to check her blood glucose levels and again the result read “High”. Before treatment could begin we had to await the results of a further blood test to confirm certain antibodies were present. Type 1 diabetes is an autoimmune disease – Alana’s immune system was attacking the insulin producing beta cells in her pancreas. Without insulin glucose cannot be absorbed by your cells, so the body starts to break down fat for energy. This process causes a build up of acids in the blood called ketones, which will lead to a dangerous and life-threatening condition called “diabetic ketoacidosis (DKA)” if left untreated. Because my husband is a type 1 himself, we were fully aware of this danger so the formal diagnosis couldn’t come quick enough – we knew she needed insulin and she needed it fast!

Our feelings on diagnosis…

HEARTBROKEN – although we knew in our hearts she had Type 1 diabetes as we were racing to A&E, the formal diagnosis hit us both like a tonne of bricks.

I also felt really AFRAID – how were we going to manage a 2 year old with this condition? How would we constantly prick her little fingers to do blood tests and give her daily insulin injections? What damage had already been done to her little body? Would we ever sleep again for fear she’d slip into a diabetic coma overnight?

LONELY – we realised quite quickly who our real friends were and that some people would just never understand the impact (and potential danger) of this disease no matter how much we tried to educate or explain. We received a lot of “At least she doesn’t have xyz”, or “Sure that’s fine, isn’t Andy a Type 1 so it’ll be no bother” and the classic “Sure she’s so young she’ll know no different”

Then there was the GUILT – had we done something to cause this?

 

The misconceptions about Type 1 Diabetes..

The main misconception is that Type 1 and Type 2  are the same thing. While they are both characterised by having higher than normal blood sugar levels, they are caused by different things and treated in different ways.

There is a lot of media attention on Type 2 diabetes and how lifestyle choices (bad diet and lack of exercise) can increase your chances of developing Type 2 diabetes. Then the old diabetes jokes that if you eat 36 Mars Bars or whatever you’ll get diabetes.  I feel there is such a stigma attached to the disease, that it is your own fault for getting it and easy to control or prevent!

People (including professionals) don’t always differentiate between the 2 different types of diabetes or give all the facts. Type 2 although often associated with excess body weight, can occur in people who are of a healthy weight – it can develop as a result of the effect of other medications or just purely because of your genetics! You could be extremely unhealthy and never get it too. I don’t know much about the treatment but I believe losing weight (if needed) can postpone the development of type 2 or put it into remission, then there are tablets you can take and finally you may end up on insulin therapy.

The cause of Type 1 diabetes is unknown. A person does need to be predisposed to the condition but for a lot of families it seems to strike from no-where.  No-one had type 1 diabetes in either of our families before my sister or my husband were diagnosed. Something needs to trigger the autoimmune response that causes the beta-cells in the pancreas to be attacked. With Alana is is presumed to have been triggered by a virus. Nothing we did caused this monster to take over our child’s body!

Another misconception is that Type 1 can be controlled or “cured” with a special diet. There is no cure for Type 1 diabetes. It can only be managed with injections of insulin. You could of course limit the amount of insulin needed by eating less carbohydrate containing food but a child needs carbohydrates for growth and development. Also there are so many factors that affect insulin needs, not just food – the time of day, exercise, illness, growth spurts, stress, excitement, the weather to name some; I already dread the effects puberty will have on her blood glucose levels!

The symptoms of type 1 appear quite suddenly and worsen quickly. Watch out for increased thirst, frequent urination, extreme hunger, weight loss, irritability and fatigue. We have heard so many stories from other parents who have experienced GPs assuming these symptoms are just a virus, and are lucky that their child is still with them today! Please ask for a blood glucose test if you feel your child shows any typical symptoms. Type 2 has similar symptoms but in contrast often develops slowly over years. Type 1 although usually diagnosed in childhood or the early teenage years can also present in adults!

And most importantly – yes Alana is allowed to eat sweets and cake! No food is off limit as long as we counter-act the amount of carbohydrate in it with insulin. Just like any other child a healthy diet with treats in moderation is encouraged.

The immediate (and continued) impact…

Alana could not be discharged from hospital until her ketone levels were safe and Andy and I were trained and capable of caring for her, so we pretty much moved into the hospital for a few days.

It was very difficult trying to cope with the emotional side whilst also learning how to basically keep her alive. Information overload is an understatement. Although Andy is also Type 1, it is very different managing a child as you cannot feel how she feels.  She was also only 2 and understandably did not take too kindly to finger pricks and injections.

It did help though that it was not a completely foreign disease to us and I knew some of the basics already. She also didn’t like sugary foods or drinks – again she was only 2 so just hadn’t been introduced to them! Initially we lived in fear of her blood sugars going low as the treatment is to eat or drink fast acting sugar immediately.

The biggest change for me was taking the decision to resign from my job to care for Alana (and of course her little brother Zach). I’d only started a new contract role, which was a 50 minute commute and full-time.  We were lucky that we could just about afford to do this with some cut-backs.

The first few weeks were intense as we worked closely with the hospital team to adjust her insulin levels to suit her individual requirements. This involved recording everything she ate and how many units of insulin we gave her, regular blood glucose tests throughout the night as well as during the day, hospital visits, and daily phone calls to the nurse team.

I do believe I lost a part of myself when I stopped working. It definitely affected my confidence (and still does!). I would find it very hard now though after spending the past 5 years off work as a full-time mum to go back to a full-time role and it would be hard to find someone I’d trust enough to manage Alana during all the school holidays etc. Because I spend so much time with her it is easier for me to spot trends and make background insulin adjustments for example.

We do not have to juggle work to attend hospital appointments or if either kid is ill and I love being able to attend all their school shows etc. There are pros and cons but there is no doubt that you are just as busy (in a different way) when you are a stay-at-home mum!

We are very conscious that Zach does not feel left out but the reality is that Alana’s condition requires extra attention. Type 1 diabetes is a 24/7 role – you do not get a break from it but it does eventually just become part of your daily routine.

A typical day…

As soon as Alana awakes her blood glucose level is checked. Her breakfast is weighed and the amount of carbohydrate calculated and this combined with what her blood glucose level is determines how much insulin she requires.

Alana now wears an insulin pump which we programme to do a lot of the calculations for us, so for any food she eats throughout the day we enter the amount of carbohydrate in it and the pump delivers the required dose of insulin.  We have a notebook system with her school, so for her snack and lunch I write out the carbohydrate value and her SNA delivers the insulin via Alana’s insulin pump.

Throughout the day she would do at least 4 blood glucose tests – It can be more depending on what activities are happening on that day and how her blood glucose levels are running on that day. She does not go anywhere without her glucometer and treatment for hypoglycemia (low blood glucose levels). If her blood sugars go low she needs fast acting sugar immediately. In contrast if her blood glucose goes too high she needs more insulin.  It’s all a balancing act! I never go to bed until I know she will be ok overnight (or if needed I will set an alarm to wake and check on her).

I cannot leave her with anyone who is not aware of her medical condition and knows what to do if she goes hypoglycemic (for me that is my main concern). They also need to be aware that she cannot eat carbohydrate containing food unless she is first given insulin, so for parties, camps, playdates etc I will always be there at food times to deliver insulin.

Her insulin pump is attached to her by a cannula. Every second day the insulin reservoir is changed and the cannula removed and a new set inserted. She also wears a sensor which continuously monitors her blood glucose level. This is removed and a new one inserted every 6 days or as needed. We also monitor trends in high or low blood glucose levels and amend background insulin ratios and calculations as needs be.

Our support network…

My parents were invaluable as they minded Zach whilst we were being trained and snuck into our house to leave a meal now and then or to do some laundry. My mum is one of the few people I’m comfortable to leave Alana with for an extended period of time, but even that requires refresher training and planning.  Also my mother-in-law actually got the first possible flight from Australia to come and help us as soon as she heard of the diagnosis – you can’t ask for more than that! She encouraged me to get out of the house for a walk or to meet friends for coffee and just took over some of the housework.

When we picked up our first prescription from our local pharmacist, they took my number and passed it onto another mum in the area who’s boy is also a Type 1 diabetic. That mum rang me straight away and it was just so wonderful to talk to another mum in the same situation and to hear that everything would be ok!

We attend Crumlin Children’s hospital and have access to their diabetes team at any time if we have a question or need advice. Every quarter we have a hospital review with the nurses and Consultant where Alana’s HBA1C (measures Alana’s average blood glucose concentration over the past 3 months) is checked as well as her weight and height and we discuss how things are going and any needs to change her insulin doses etc. We also have access to a psychologist through the hospital who helps children and adolescents cope with the emotional impact of their diabetes. It is great to know Alana will have that access if she needs it in the future.

There are a couple of private facebook support groups for parents where you can ask advice, share tips or just rant to people that understand. Diabetes Ireland (link here) also have a kids club and they arrange outings and opportunities for Type 1 children to get together. Crumlin hospital also arrange some outings.

 I feel Type 1 diabetes is an invisible disease..from the outside Alana looks like a healthy child, but a lot is going on in the background to keep her that way.

The challenges for Alana…

So far I don’t feel it has created any difficulties for Alana really. As a mum I was worried she’s be excluded from playdates and parties but thankfully this is not the case (or if it is in some cases she hasn’t noticed). I’d seen some worrying posts via the facebook support group regarding lack of support in primary schools or about SNAs just not realising the seriousness of the condition or refusing to do parts of the necessary treatment but thankfully her school have always been extremely supportive and each year she has had access to a fantastic SNA that she builds lovely relationships with and who is more than capable to care for her. She hasn’t mentioned ever been teased about her diabetes yet either.

I expect challenges to arise as the teenage years approach.  We will always be there to support her but she will have to independently manage her diabetes herself. It will be important for her to have a supportive group of friends who don’t make her feel conscious or embarrassed by her conditions and that understand that if she acts “off” it could be because her blood glucose levels are too high or too low and how to manage that. We will need to watch out for “diabulimia” where people deliberately restrict insulin and run their blood glucose levels too high in order to lose weight and “diabetes burnout” when you have had enough and grow tired of managing diabetes 24/7 so you just sort of give up for a while! Not looking after your diabetes properly can result in all sorts of health complications.  Again a balancing act of stepping back so she can learn to manage herself but yet keeping an eye on things to ensure she is looking after herself and not putting her health in danger.

An additional factor…

She was diagnosed with coeliac disease last November. For about a year and a half before the diagnosis she’d been complaining of bad stomach pains and feeling yucky and her health and energy were deteriorating. She started having really bad mood swings and saying she felt sad and frustrated and didn’t know why! We suspected coeliac disease but blood tests weren’t picking it up, so were pushing from all sorts of angles to find out what was going on with her or was it just what people refer to as “growing pains”. She had a biospy last November and that confirmed the coeliac disease.

It has definitely added another level of care, it is yet another thing we have to plan for and work around.  I never realised that for someone with coeliac disease that something as simple as touching a piece of bread and then the gluten-free food can cause a reaction (and in her case it does!).  There are so many foods that you would think are gluten free and indeed are but because of manufacturing processes there can be a risk of cross contamination with gluten, so certain brands are not deemed safe for a person with coeliac disease. The Coeliac Society publish a Food List which at the moment is our bible! It is all worth all the effort and label reading and researching foods though as she is back to her old bubbly, energetic self already!

For the first few weeks that she went gluten free we’d to monitor her diabetes more closely as her body adjusted to the gluten free diet. Her insulin requirements needed tweaking and still do as she is still recovering from the damage the disease has caused to her gut. I have heard that once her gut is healed fully that her Type 1 diabetes may become more predictable and her HBA1C results might improve. Her hospital results are usually pretty good anyway so an improvement would be an extra bonus. We are lucky in that she doesn’t react to gluten by vomiting like some people with coeliac disease do as that would be very difficult to manage with Type 1 diabetes – if you can’t keep food down you are at risk of serious hypoglycemia.

How Alana copes…

Alana has an incredible attitude – I thank Andy for his relentless optimism that she seems to have inherited! She is actually quite proud of having both Type 1 diabetes and coeliac disease and feels somewhat special and enjoys the attention. It helps that her dad and aunt both have Type 1 as she greatly admires both of them!

When she started school we were amazed and so proud of how responsible she was in telling her SNA or teacher if she wasn’t feeling quite right – she is very in touch with her feelings!

I do notice moments of worry creeping in from time to time but they pass. She might be scared to go on a playdate (this has thankfully passed) or lately she has expressed a fear that her insulin pump will break or that she’ll be stuck somewhere with no sugar and go hypoglycemic. All we can do is re-assure her. It’s hard to get the balance right between making her feel just like everyone else but ensuring she is aware of her medical condition and what to do if she doesn’t feel right.

We want her to live as normal a life as possible and to never let Type 1 diabetes hold her back and so far she seems to be doing pretty well at that

Advice for other parents…

As hard as it seems at first it will get better – just take it day by day.  A nurse told us that we would go through a grieving process similar to if we had actually lost our child and that did indeed happen – we lost our “healthy” Alana. Knowing that those feelings were a normal reaction really helped me get through that period of time.

As soon as you can reach out to other parents of children with Type 1 diabetes, whether through facebook support groups or the Diabetes Association. The hospital you attend may also have support groups.
Jenni, Andy, Alana and Zach

Parenting in my shoes – I lost my baby

Anne Marie is 40 years old. She’s married to Paul, whom she works with, and though she likes to consider herself the boss, says really they’re a partnership.  She describes Paul as her soulmate and best friend. They have been together for 21 years and have five living children,  1 boy and 4 girls. She is also mum to two angel baby boys.

Anne Marie very bravely and beautifully spoke to me about the loss of her baby boy Patrick who was stillborn at 41 weeks, and how his loss has affected their family.

 

The pregnancy and the lead up…

In 2015 after bringing our oldest 4 children on the trip of a lifetime to Florida I found myself tired, rundown, just not feeling great.  Before I knew it I was sitting watching a pregnancy test turn positive after an almost 10-year gap. I was shocked but quite quickly came around to the idea of having a baby in the house again, we were all so excited.  At 38 I was very conscious of looking after myself and took extra care to keep my little passenger safe. I appeared to have the text book pregnancy with a very active baby boy onboard. I was nervous throughout my pregnancy especially in the last few weeks as my last baby was 10lb 4 and I had a very difficult birth.  The midwives tried to reassure me all was well. My due date was Feb 9th 2016 as the date drew closer I asked several times was it wise to let me go over due with my history.  I was repeatedly told baby was fine and would arrive when he was ready. I tried everything to naturally start my labour as my due date came and went – long walks, bouncing on my ball, squats, even eating pineapple which I don’t even like! I resigned myself to trust my body to stage an eviction when it was ready.

Finally on Saturday night Feb 13th  at 10pm a pain, a real pain a contraction Hallelujah!! I knew it was going to be sometime before things really got going as my body had not laboured in over 10 years.  I sat up until 4am with my baby boy so active I thought he was trying to escape the wrong way, I was so excited & ready to meet him. Eventually I fell asleep for a few hours, when I woke we joked how it could only happen to us that the baby would arrive on Valentines day that was after we realised myself & Paul had bought each other the same card.

Around lunchtime I realised I hadn’t had a good wallop from baby in a while maybe I didn’t notice as my contractions were still coming but slowly. It was then we decided to contact the hospital.  They told us to come in that there was probably nothing to worry about.

We reached the hospital less than an hour later to be delivered the crushing words “There is no heartbeat”.

My world in a split second came crashing down around us.  I was hysterical, delirious there were people who I didn’t know in my face saying I’m sorry for your loss trying to calm me down. This wasn’t happening, this couldn’t happen, my baby was moving perfectly a few hours ago.  Then the shock set in, my body shut down my contractions stopped, and Paul was trying to take everything in. There were things we needed to decide. Do we stay or do we go home? We opted to go home to be brought back 2 days later if nothing happened in between.

We had to go home and tell the children. How were we going to break the news to a 16,15 12 & 10 year old?

Paul is the bravest person I know while I slipped silently into the house and sat down he gathered our children and told them the tragic news one by one.  I watched as he picked up our children off the floor as their bodies crumbled to the floor like an earthquake had hit, the wails of their young voices as the tears flowed. It didn’t seem real.  After settling the children Paul then contacted our family and friends. I had lost the ability to talk, I just stared in to space holding my bump.

The following day my contractions started slowly again, people came and went from our house all day offering what support they could.  In my mind I still had a job to do, I still had to give birth to my still baby. One of my closest friends sat holding my hand and at 11pm she knew by me the time had come to go to the hospital.  We made the phone call to the hospital and at 2.23am Tuesday February 16th I gave birth to the most beautiful 9lb 3 perfect baby boy who we named Patrick.  It was love at first sight.

Once the formalities & tests were done we brought Patrick home for 3 days. Feileacain enabled us to do this by supplying us with a Cuddle Cot for our home to allow us time before we said our final goodbyes.

During this time it allowed me to be his mommy.  My motherly instincts kicked in and I did all the normal things a mom does for her baby. I held him, sang to him, read to him.  I examined & kissed every inch of him so I would never forget. We as a family made as many memories that we could in a very short time.  We opened our door to allow friends and family meet our little boy.

Anne Marie and Baby Patrick
 Telling and supporting the other children…

After Patrick’s funeral my focus became my other children. I needed to make sure that our tragedy did not define them.  They were hurting like I’ve never seen, and I was a mess. I contacted every organisation I thought who may be able to help I was particularly worried about my teenagers but in reflection they had their friends.  Their friends came and enveloped them, protecting them. I found myself sitting up with them in the early hours of the morning when they wanted to talk we spent many of this nights laughing and crying together.

First Light helped us with initial counselling sessions for them. My teens were not that engaged they felt they didn’t need it.  My younger two attended extensive play therapy organised by Feileacain which helped them process their emotions. We had lots of tummy aches because they didn’t want to go to school but all their schools were extremely supportive.  I put on the bravest face for them although I was crippled by grief, but they knew I wasn’t the same and life was never going to be the same.

 Our own support…

We were surrounding by so many people who wanted to help. Food was dropped off to the house regularly for the first few weeks. Paul made sure there was someone with me each morning when he went back to work.  I saw a psychiatrist regularly and we attended support meetings as a couple again organised by Feileacain. It really helped to be with other parents in the same situation. It was a safe understanding space to talk.

Considering another child…

We were terrified at the mention of having another child, I was so broken with empty arms.  After our return visit to the hospital we were told the chances of it happening again were slim and I would be closely monitored.  I was 38 having Patrick and now I was 39, time was not on our side if we decided to try again. We did decide that we would try once more. Once those 2 lines appeared on a pregnancy test a fear set in that I was unable to shake for my entire pregnancy.

 Coping with a pregnancy after loss…

I found it very difficult to acknowledge my pregnancy I tried to pretend I wasn’t pregnant.  We told nobody.

My GP organised everything with the hospital and they made a mountain of promises about my care, unfortunately by my second visit at 14 weeks I ran out of the hospital in a high state of anxiety and upset, I said  would never go back. I changed hospitals & consultants and finally felt confident in my care. I continued to see the psychiatrist regularly but still kept our secret. At 22 weeks we finally came clean to the children as I could no longer hide it and we only told a handful of family and friends and asked them to keep our secret as we were so scared.

My consultant was amazing, I had a scan & visit most weeks.

I counted the pregnancy in baby steps. 26 weeks the baby was viable and every week after that was a bonus. I was terrified to bond with the baby but when I was alone I started to talk to baby little by little as my belly grew. But I did feel very disconnected from my precious little passenger.  I was paranoid that one morning I would wake up and the baby would not be moving, I found sleeping at night very difficult. Being pregnant again was the hardest and bravest journey I have ever been on.

How the other children coped with the pregnancy…

They understood why I wanted to keep it a secret.  They really minded me, but they also told me they were nervous.  Like us, we all went appointment to appointment. I think we had the most photographed baby in the womb!

When our baby girl arrived…

Hope made quite the entrance.  I was brought in for a planned induction at 37weeks, my pregnancy had gone very well under the circumstances. But as fate would have it I had a placental abruption while in the hospital and our precious little baby was born via emergency section.  I never did meet her the day she was born as she was in the NICU and I was recovering. When I finally got to meet her, her tiny little body curled up in the incubator I was terrified. I placed my hand on her back and the touch of her warm skin filled me with so much emotion the tears flowed.  I had a live baby. I made a promise to her that I would never leave her. I stayed by her side for 2 days until she was well enough to join me in my room. I was now caught in the biggest bubble of love and walking on air. I continually thanked Patrick for sending me his little sister.

Baby Hope
 Parenting after loss…

Parenting after loss is no easy task as you are not the same person, it takes a very long time to process the shock and learning to live with a huge part of you missing while trying to look after your other children.  My mind was mush, my children missed their mommy. I carried out the daily tasks because they had to be done, I tried not to show to them how broken I was. There were days the anxiety left me so paralysed I couldn’t leave the house.  I had to take every day as it came and plan as much in advance as I was able. Other days I was unable to get out of bed. Thankfully my youngest was 10 at the time so I did not have smallies running around. I was very open and honest with them as much as I could while protecting them at the same time but if I was having a bad day and I needed some space I was able to tell them

Family pic
 Advice for other grieving parents…

Baby loss is the single most traumatic event that can happen to anyone.  Once the shock wears off you find yourself at your lowest point. It’s not about forgetting and moving on it about survival.  You learn to live an adjusted life with a new normal. The grief you suffer is like a rollercoaster, one day you think you are doing ok and from out of nowhere you get smacked in the face and you are back to square one.  You are not going mad, this is all very normal. Ride the rollercoaster and take it day by day, I still do. Be kind to yourself and never make excuses. You are grieving parent and others sometimes do not understand as they do not walk in your shoes.

 What a grieving parent needs…

Leave out the clichés “it was probably for the best”, “you have other children”, “ you are young, you can try again”, “you never knew the baby”, “ do you not think its time to move on”,  none of these remarks are helpful in fact they are quite hurtful. Kindness & compassion are what a bereaved parent needs, we need you to listen to our story over and over because that is all we have.  We need you to remember, to speak our baby’s names.

Please don’t avoid me because that hurts even more, even if you don’t know what to say a simple hug is acknowledgment that I had a child.

Coping as the time passes…

The last 13 months have been busy adjusting to life with baby again. Once my bubble of love came back to earth I struggled for a long time.  I found it very hard not to think of what could have been. Every milestone Hope has reached I draw a comparison in my mind to what I have missed.  Hope has brought joy & healing to our home on a different spectrum, but I am still missing a huge part of me.

I am trying my best to be the best parent I can in difficult circumstances.

My grief still comes at me in waves on that rollercoaster, but I am thankful I have my little girl to help me through.  Some people assume I am fixed because I’ve had another baby, but this is not the case. While I have relished every moment with my precious rainbow baby I still battle the demons of the baby I lost.

I still attend support meetings & counselling, I speak about Patrick all the time.  Patrick is my son, my son who did not get to stay but I will continue to find ways to make his legacy meaningful and help others along the way.

Baby Patrick

 

You can read more about Anne-Marie’s journey through parenthood after loss here.

 

 

 

Parenting in my shoes – My child has dyspraxia

Benny is a father of two who lives in Waterford and is married to his childhood sweetheart – or long suffering wife as he likes to call her. He has an 8 year old son, who loves technology but not football, and a 2 year daughter who is a Paw Patrol fanatic and is the boss of the house (those of us with toddlers can definitely relate!)

Benny is a stay at home dad and his son has dyspraxia DCD. He spoke to me about life as a stay-at-home dad and what having a child with dyspraxia means for his family.

 

Why I became a stay at home dad

My wife was returning to work after Maternity and a year off to concentrate on studies (but how she studied while being at home I’ll never know). We were right in the midst of making arrangements with crèches and after school, who’d could collect who etc when I dropped the bombshell… “What if I stayed at home?” After the initial shock of my idea we sat down and worked out the figures. Between the tax saving of only having one income, not having to pay for childcare and some tightening of our belts we decided that it could be done. We reckoned it would give us a better quality of life and this was the main thinking behind it.

 

The reactions from other men – and women

Most people are great. Most women have a ‘good for you’ attitude to it. Most men are like “huh, huh, you’re retired then!” But it’s all in jest. I say ‘most’ because there are people who don’t seem to grasp it, yup, you guessed it ‘the elder generation’. The ones who grew up with defined roles of ‘male breadwinner’ and ‘female home keeper’ but this attitude is dying out, literally. Us younger folk are fairly on the ball.

 

The best and the eh “most challenging” parts of being a stay at home dad

The best is easy, being with the kids. When I was an auctioneer I worked long hours (there was no ‘off’, my phone was constantly going outside of hours), I used to see them for a few minutes in the morning and come home stressed to land on top of the bedtime routine. It just wasn’t working for me. Now I get to watch them grow and develop and be much more involved in their lives.

The most challenging aspect, ya ready for this? Being constantly with the kids. There’s no ‘off’ as a stay at home parent either. No sick days. No going to the toilet alone for God’s sake!! But you know what, I’m delighted I made the decision. Plus it’s allowed me to start up daddypoppins.com and write both comedy and serious pieces for various newspapers and websites. I’ve always wanted to write and being a stay at home dad gives me the best of both worlds.

 

How we discovered our son had dyspraxia.

 We knew there was issues at school but their description of our little man and how we found him to be at home were very different. He gotten on great in crèche and Montessori and they thought he’d fly at school but he just never settled. He became anxious and socially awkward and the happy boy we knew retreated into himself. As time went by he became worse and worse as we explored every avenue to help him. Unfortunately the Irish system has waiting lists of up to 2 years for assessment. In fact at the time of writing this we are still waiting. We have paid to go privately (as early intervention is key), he’s been diagnosed with Dyspraxia DCD and sensory processing disorder, we’ve had 2 separate blocks of occupational therapy and still nothing. You have to be wealthy in this country to be seen (something we aren’t, but we’re struggling in to help our kids in any way we can)

In the end it was actually a relief, for us and him. We knew what was going on and put a plan in place to try make things as easy as possible for him.

 

Dyspraxia is…

That’s the issue, it’s very difficult to describe. There’s no one sentence that sums it all up. It’s different for everyone affected by it. To me, it’s a brain-based developmental condition that makes it hard to plan and coordinate physical movement (both fine and gross motor skills are affected). Dyspraxia isn’t a sign of muscle weakness or of low intelligence, in fact the Little Man is super smart. Some children with dyspraxia struggle with balance and posture. They may appear clumsy or “out of sync” with their environment. Our little man struggles with writing, organisation, emotions, breaks from routine etc. our little girl is the same, there’s definitely something happening there too but at 2 and 1/2 she’s too young to diagnose.

 

The difficulties dyspraxia presents for our son – and for us.

The Little man is 8 and like all 8 year olds there’s worries to be had. How much of it is down to dyspraxia and how much of it is down to him being our first kid is up for a bit of debate. You’d never really know without a control subject. Why don’t they come with manuals?

Dyspraxia has made our life hectic and full of worries about how he’ll cope with situations. It’s made me much more of a ‘helicopter parent’ than I ever thought I’d be. Everything has to be done in a specific way or there’ll be meltdowns; from laying out of clothes in a specific order for the morning and checking upon every detail as we work our way through the daily routine. It’s exhausting. He isn’t able to do what other 8 year olds can, everything needs parental supervision.

 

Finding support

We’ve created our own support system because there’s been a total lack of support from the state. We are still waiting on public assessment. If we hadn’t gone private (much to the detriment of our finances) then I’m not sure where we’d be. The little man’s mental health and emotional wellbeing were deteriorating at an alarming rate.

It’s another reason I’m delighted I made the decision to become a stay at home dad as I know my sons routine and needs. Both myself and my amazing wife are his home support. The wonderful Hannah in Sunflower Clinic is his support and I’m glad to say that since her report the school have rolled in behind us and life has been made much easier.

I’ve become immersed in dyspraxia since the diagnosis. I attended a local meeting one night (hastily arranged by a small group of concerned parents) and it snowballed from there. It was only then that I realised how many people are affected by it. So many people don’t know a thing about it. It’s pretty invisible as a special need and has gone unnoticed in so many people in the past. Did you know that 1 in 20 people has it? I know of 7 kids in my estate of around 60 houses that have Dyspraxia DCD (to give it is full title). This meeting has spawned a group of concerned parents (all in the same boat as me) and has grown and grown and we hope to have club formed by September of this year that will provide an outlet for kids and parents going through everything that dyspraxia brings (from the initial worry, to diagnosis and acceptance, planning, engaging, techniques and tricks and the support and friendship of someone who understands your situation).

Because Dyspraxia isn’t ‘obvious’ to the naked eye it’s often dismissed or ‘tutted at’ by others and assumed to be ‘bad parenting’ or an ‘unruly or emotional child’ or something to that effect. It’s not. They don’t grow out of it. It needs to be recognized like autism or dyslexia. It’s currently being pushed to the side by our health services as regards funding.

I’m delighted to say that I’ve become the public relations officer for the Waterford Dyspraxia DCD Support group (link to page here) and currently run both their public and private Facebook pages. So I’m part of the support, but it’s a huge group effort, we have a board of 16 (who all have different skill sets, from; barristers, insurance professionals, special needs assistants and fund raisers) at this point we also have 15 fully trained couches (some of whom are young adults with Dyspraxia). So to answer your question about support, the involved parents are the support, others don’t seem to understand. But we’re working on making them.

 

The biggest challenge.

In a word, worry. What does the future hold for my child? How can we continue with this exhaustive routine. How can we afford to continue treating them privately? Will they ‘fit in’? Will they be able to secure work and look after themselves properly later in life? Will they be happy?

..and the positives

 I’m not sure whether it’s dyspraxia or just my little ones but they are the most caring, in touch with their emotions individuals I’ve ever known. Their empathy levels are off the charts and when they find something they are interested in their concentration and knowledge of the subject is off the charts. Bottom line, they’re still the special little people they were before a label was attached.

 

Advice for other parents in a similar situation

Address it ASAP (and I mean both them and you) it’s a shock but it provides a roadmap to help. You can’t fix a problem if you don’t know the question. The sooner you get to work on things the better the results.

I’d personally say ‘Let them know’ (although some others may not agree) it helped my little man no end to know there was a reason he wasn’t as quick at writing and found some things more difficult than his peers. It changed his attitude from one of ‘I’m useless’ to one of ‘That’s just because of ‘my difficulties’ but now I know how to get around that’.

Finally, get online and find your local support group. People have been there before and can provide a sympathetic ear and advice on who to call or what to do. You aren’t alone. If you can’t find your nearest group then give a call to Harry in Dyspraxia Ireland (link to site here). He’ll set you on the right track.

Benny and his son