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.
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.