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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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Pregnancy may be natural, but it doesn’t always feel that way!

“Millions of women give birth every day, it’s completely natural!”

Oh, if I could get a cent for every time this had been said to me since conceiving my first child 15 years ago!

Even though pregnancy is completely natural – sometimes it just feels completely unnatural! And I’m not using the word “unnatural” in a negative context – I’m using it in the sense that pregnant women often undergo so many physical and emotional changes that it is outside of their “norm” as they experience the various changes to their bodies, their lifestyles and their emotions.

 

 

 

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We Should All Celebrate International Nurses Day!

As we all know, every day should celebrate nurses, but every now and again, it’s good to highlight all the work that they do for us and today is one of those days – it is International Nurses Day!

Coming up to today I started reflecting on all the nurses we have met along the way during our personal journey in the health system. A few memories in particular always leave a lasting impression on me.

The first was when a nurse sat down at the side of my bed and simply held my hand as I cried upon learning that our youngest daughter needed heart surgery. Such a simple gesture but it meant a lot to me at a time when I was at one of my lowest points and terrified about the future.

The most striking memory for me was when I was in Crumlin for five weeks with our heart baby and I was told we had to move out to a different ward temporarily as other sick babies had been admitted. I told them this was no problem at all and started packing our things, but inside my heart was heavy. I was just so lonely from being away from all my family and my other children in Co. Mayo, but because I had made friends and found security in the other moms I had met on St Theresa’s ward, this had helped me a lot to get through every day. I quickly put aside my thoughts, gathered my things, and my baby, and moved into the other ward.

After I settled in however, I started to cry silently.

Little did I know that one of the nurses from St Theresa’s ward was going to pop in to make sure I was settled okay and when she did, that was how she found me, crying quietly into one of my daughters blankets. I tried to wipe away the tears and pretend I was okay, but she wasn’t having it. Guiltily I told her that I knew other babies needed the space but I was just so lonely being away from my children, and this, added to the loss of the security of my new little network of moms – made me feel…alone. I told her I would be fine, it was probably just sheer tiredness and hormones that had me upset. The nurse looked at me wide-eyed and quickly left the room. Within five minutes she came back and said that we were moving back as she had arranged a special room for us in the ward I had come to know as my new home. I couldn’t believe it.

I won’t ever forget that moment – she completely empathised with me and knew that I was just barely coping with the overwhelming stress of having a very sick newborn.

Kindness costs nothing, but meant everything to me that day.

There are so many other stories I could share, and some are just really practical things that mean a lot, for instance the time when our clinical nurse specialist in Crumlin said we could email him at any time. Now this may not seem like a big deal to many, but when you are trying to get complicated medications sorted out for your sick child, or are worried about their symptoms there is nothing like the reassurance knowing you can reach out to a specialist in their field to ask for guidance – knowing you will always get a personal response. This is not a regular occurrence in the health system but that is often not down to the fact that nurses don’t want to do it, sadly it occurs simply because of a lack of resources or IT in their hospital.

This list goes on and on.

I also learned a lot from nurses by bringing MediStori into the public health system.

The professionals who loved our patient held record the most were, you named it, yes, nurses.

They often were the first and last point of contact with patients, carers and their families and they knew just how overwhelmed people could be when being asked questions about tests they had, previous medical history and managing medications. They knew MediStori could help so many. And they were more than happy to promote it and educate patients on how to use it and bring it back into clinics. They knew that if they did this, it could take a huge amount of stress from patients, in the home.

This is what a nurse does best.

They provide a real human connection and care in more ways than just medically. They look at people holistically with an aim to understanding their needs. They work with doctors and many, many other health professionals – they keep the wheels turning.

So today for International Nurses Day, I personally want to say thank you to all the nurses and midwives who have shown me kindness, educated me, hugged me, hugged my girls, or even just held my hand in times of need.

I’m sure I’m not the only one who feels this way so I feel it would be great if we could show our kindness and gratitude back in return!

If you have a story you would like to share by means of thank you to our nurses, please leave a comment below or on our Facebook page. Additionally, you can go on Twitter and use the hashtag #celebratenurses