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Sometimes I wish I was Ignorant.

Sometimes I wish I was ignorant. Sometimes I wish I didn’t know, all I know.

Sometimes I wish I didn’t have a thing called “gut instinct”.

A few months ago, my little baby daughter, Madison, was diagnosed with the same congenital heart defect as her 11 year old sister, Mackensie. Then, only a few weeks ago, Madison was also diagnosed with infantile scoliosis, amongst many other things.

Out of kindness (and probably not knowing what else to say) many people say to me “at least you’ll know what lays ahead.”

But that’s the thing.

I don’t want to know what lays ahead. I don’t want to remember the trauma.

I don’t want to remember the times when Mackensie was being tube fed; the stress when giving her serious medications – which if missed could cause a stroke; having her baptised in hospital; being told by the surgeon that she could potentially die in her heart surgery. After her surgery, watching her in ICU with tubes attached to nearly every part of her tiny body. Little cotton handcuffs to stop her pulling out the very tube helping her to breathe. Bringing her home, terrified that I would do something wrong. Trying to clean her surgical scar without hurting her.

I don’t want to remember my constant questioning of health professionals; the fighting to push her through the waiting list for surgery. I don’t want to remember the gut wrenching guilt I always felt for not being there for my other girls when we were in Crumlin.

Every now and then, of course, these memories would jump into my mind, but I learned how to turn them off.

But now, with Madison, all I can think of is these memories.

I’ve already started doing the things I did then.

Like, worrying. Constantly.

I know she will need heart surgery, I just don’t know when. I know the signs of advanced heart failure. Poor feeding, poor weight gain, wet cough, shallow breathing, sweating while feeding and cyanosis around the lips. Madison has all of these symptoms. But these too can be signs of reflux – which she has too. So I try my best not to jump to the worst scenarios, but it is so, so hard not to. This doesn’t even touch on the topic of scoliosis, which I’m sure everyone in Ireland saw the documentary on last year. All sorts of fears come to mind when I think of that.

I’m scared.

There, I said it. As honest as I can put it. I am absolutely petrified.

This is why I sometimes wish I was ignorant.

Maybe I wouldn’t be so worried. Maybe I would trust health professionals opinions. Maybe I would just “get on with it” – as I have been told to do. Maybe I would be one of those moms who just takes everything in their stride and has faith that it will all be okay.

Maybe, maybe, maybe.

But when I look at the flip side of our situation I also think, if I were ignorant would I have missed the signs? The symptoms that alerted me that something was wrong? If I hadn’t fought the fight, would she still be here today?

What if I doubted my gut instinct? Being a parent is a huge responsibility – keeping another life (and in our house four lives!) simply alive. That’s what scares me the most. What if a doctor doesn’t listen to me – maybe thinks I’m neurotic and then tells me everything is okay – when it’s not.

I’ve been there. Nearly losing Mackensie in the process.

I suppose I’m writing this blog with one simple goal in mind.

I simply want health professionals  to understand that we parents, are not doctors. We often can’t tell the difference between a viral or bacterial infection. We see a skin rash and immediately think the worse. We have a huge responsibility for our little children. We love them so much we would hate to see anything happen to them. We get scared. We panic sometimes. We may seem neurotic.

But isn’t it a good thing that we care for children so much? Or would it be better if we were actually ignorant?

A tiny bit of empathy, kindness and reassurance can go a long way. As can speaking in clear language.

This was shown to me when Madison had a serious adverse reactions to her baby vaccinations a few weeks ago  – landing her in the resuscitation room in A&E.  The consultant came in, saw my tear stained face and wide eyes and she simply paused. She spoke softly and slowly. Explained what was happening – and what could potentially happen. Did not dismiss any small questions I had. Answered the serious questions I had honestly.

She smiled at Madison. Said she was cute. This doctor made me feel safe. It made me feel Madison was safe.

She didn’t have to perform any procedure or give medicine to create this feeling. She simply used her ability to communicate and understand. And that was what I needed right then. I needed somebody to take away the fear.

My four children all have complex conditions and we have a number of doctors who treat us that way on a regular basis, mainly, our GP and our complex care paediatrician in Mayo University Hospital who oversees everything.

They don’t make me feel like I’m neurotic. When I trust the care they give, momentarily I allow myself to feel ignorant – feel that I can hand it over and they will fight for me, fight for my children.

And it is on those days that I am glad that I know all I know, and I never wish that I ever be ignorant again.


Published by Olive O’Connor, CEO MediStori

Thank you so much for visiting the MediStori website.

As a social entrepreneur and mentor to many, I write from my heart and my soul as it helps me learn and grow as a person. I aim to change perceptions in society and I hope it has helped you too in some way. I also aim to help people better manage their healthcare through our family health organiser, MediStori.

To learn more click here

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Rose of Tralee Touched on Important Topics in Healthcare

We, like so many other Irish families, sat down this year to watch the annual International Rose of Tralee festival, as held every year in the beautiful Kingdom of County Kerry.

As I sat down with my youngest daughter to watch the competition, I decided to scroll through my social media during the ads to see what others were thinking of it- and it was there I was subsequently met with hundreds of mixed reviews through the many comments posted online. Many people said they felt that this festival was an outdated “lovely girl competition” of sorts – others thought it was a “money racket” and some went as far as saying it was an “anti-feminist movement” – yet, nearly all of these people were watching it on their screens as they were posting their opinions online – and that was the interesting part for me – I know if I don’t like something, I certainly don’t tune into it, unless of course I’m doing research!

Anyway, taking all the negativity aside, the majority of people had positive takes on the festival, and it made me think about why I like it too.

For me, this festival not just celebrates our Irish culture; it also embraces the importance of immigration and the acceptance of us Irish people amongst other cultures across the oceans of the world. It puts a focus on the aspirations of young women across the globe – the judges do not focus on their looks, but moreso, their personalities – including the many trials and tribulations they and their families have overcome; their vision to make the world a better place; their ability to get on with others, and their attitudes to life in general.

Anyway, this year, I was personally moved to tears, on more than one occasion, when listening to some of the stories from these talented and knowledgeable women.

Winner of the Rose of Tralee, Offaly Rose, Jennifer Byrne, is a 24-year-old junior doctor currently working in the Accident and Emergency department of University College Hospital Galway. It was great to see a young health professional talk about how patients are understanding of the demands on health professionals in today’s world. Another inspirational story was that told of  the DONEGAL ROSE, Amy Callaghan, who talked about her own journey of mental health when going through her leaving certificate.

 

But it was one story, as told by the Florida Rose, Elizabeth Marince which really made me feel all the emotions that she herself showed on screen.

Coming on stage, with a genuine smile exuding from her eyes, she was introduced by host Daíthí as an employee of another well known Magic Kingdom – Disney World. My ten year olds daughters eyes lit up as she started remembering our family holiday there, back in 2015.

Elizabeth was asked questions about her family, and during this interview, the focus was put on her brother, Michael, who was at home with her dad in the USA. We learned that Michael was 30 years of age now but when he was born he was given little chance of survival – having had severe brain damage and numerous heart problems. Elizabeth went on to explain the difficulties that Michael had had growing up, and for them as family. She said that “normal” family holidays were not an option for them growing up, as many resorts did not accommodate for people with disabilities.

But then they went to Disney World, and this changed everything for them.

She said that Michael did not normally express emotions, but when at Disney she could see a huge difference in him. As a family, medications, appointments and the fact that Michael was disabled were almost forgotten about as they drank in the atmosphere of imagination. This brought back to me all of the memories of our once in a lifetime holiday there.

You see, our children have all had various complex conditions over the years, and even though we have a positive outlook on life at the best of times, I will not lie – living with illnesses takes its toll on everyone. The worrying, stress, constant appointments, medications and financial burdens can all too often wear down on a family unit.

But when we got to Disney, this all dissipated.

We have been to many theme parks over the years, but nothing was a touch on what Disney did to our girls – and to us, as their parents.

My girls eyes were lit up from the moment they arrived off the plane. As were ours.

But what made it so special, compared to other resorts? Was it the rides, the Disney characters, or the weather? The food, the shows or the water resorts? The boat right to the Magic Kingdom, the swimming with dolphins or the Hallowe’en parades?

Yes, these all came as part of the package, but what made it what it truly was, were the people and staff in Disney.

At every step of our holiday we were greeted with smiles and questions as to how their staff could help us. My middle daughter had required a wheelchair at times due to her arthritis – and we were all given fast track passes to the rides to ensure we didn’t have to wait long in queues.

At one stage we all got stuck 40 feet up in the air on one of the rides, which was really daunting and terrifying! The staff were extremely professional and reassuring throughout. But when we eventually were taken off safely, we could not get back to the deposit areas for the wheelchair as the evening Hallowe’en festivities had started and we didn’t have tickets to get back in that night. We decided to bring the chair back to the visitors enquiries area and upon explaining our situation, the lovely receptionist went back to her manager and gave us all tickets to the sold out world famous Hallow’een party!

We were gobsmacked – this gesture meant that we actually forgot about the panic we had experienced on the ride which had broken down.

Upon arriving home, we then learned that my husband had mislaid all the girls first Mickey Mouse “ears” and their Disney character autograph books. They were devastated. I called Disney to see if they had numbers for the taxi ranks, as this is where we thought they had gotten lost. But Disney told us that it would be like looking for a needle in a haystack, and so instead asked us for photos of the girls “ears” and who they had got autographs with.

A few weeks later, we received a package in the post – brand newly signed autograph books and the exact ears the girls had bought!

Even at home, we felt the Disney experience live on.

And, this is what Disney is all about.

It is about the atmosphere created by the people that work there. No job is too big, no one person is better than an other. Everyone is treated the same, and they go out of their way to ensure every is, not just satisfied, but actually happy. Nobody feels like they are any different when there – it was like Disney was built with a complete person-centred care approach.

Elizabeth finished her story by telling us that because of her own amazing experiences and memories, she had decided she wanted to give back to others, and as soon as she could, she landed herself a job in this favourite place in the world of hers.

And in healthcare, this is what the difference should be – not just patient satisfaction, but patient experience; not just being a health professional for the sake of it, but loving going to work every day to make a difference.

A must watch TedX video, Fred Lee describes this below. Fred had the enviable distinction of having been both a senior vice president of a major medical center and a cast member at Disney University. Disney recruited him because of his expertise in helping hospitals achieve a culture that inspires patient and employee loyalty. At Disney, he helped adapt and facilitate Disney’s healthcare version of its 3-day seminar, Disney’s Approach to Quality Service, and developed its newest seminar on Customer Loyalty. With an insider’s experience and a keen eye for cultural comparisons, he shared his insights with healthcare groups all over the country.

Ref: Patient Loyalty

And this is what we, the MediStori team, really care about.  Improving people’s experiences – holistically. Being proactive and engaging with our customers at every chance we get. There is so much more to a patient, than just being sick. As there is so much more to being a carer too.

They – we- are people too; with emotions, fears, aspirations and dreams.

And if our experiences were captured and fulfilled in a positive way to create a movement in healthcare, then this, I feel would make all the difference.

Let us learn from the discussions from these inspirational young women- and even better – let us learn from Disney 🙂