Special needs parenting: “I could never do what you do”

After a very rough pregnancy, my youngest daughter was born at 25 weeks gestation.

She spent over six months in the Neonatal Intensive Care Unit (NICU), and it was by far the hardest time of my life.

We didn’t know if she would pull through on many occasions.

After coming home at 6 months old, she was on oxygen, needed regular suctioning and was on a tube-feeding pump.

Up until she turned two, I took her to the Emergency Room every few months for chest infections and she was always admitted.

At four years old now, my ‘little miracle baby’ has many long-term health conditions due to her severe prematurity.

I couldn’t count on my hand the number of times my mom and my friends have said something to the effect of “It’s a good thing that you’re a nurse. I could never care for Brielle.”

These words stir up many emotions for me.

I’m not really sure how to process it.

Yes, I agree that my nursing background and previous learning has prepared me for some of the tasks and care needed to look after my daughter.

But this is my little girl… she is not my patient and this is not my job.

It’s entirely different caring for your own child.

I am thankful that my previous knowledge works to my advantage in caring for B but sometimes I just wish I didn’t have to be “nurse” to my own little one.

Why did she have to be born so early and why does she have so many issues?

Life is just so unfair, it really is.

I feel like my nursing did not prepare me for many things that I have dealt with since having B.

I had never seen a premature baby, never set foot in a NICU or held a teeny baby on a ventilator with all sorts of wires and tubes attached.

Getting her out of the incubator and onto my chest took the assistance and watchful monitoring of three professionals and was highly stressful at first.

No amount of training prepares you for seeing your precious babe hooked up to all sorts of machinery and fighting for their life, countless alarms beeping in the background.

I have many friends who’ve learnt the expert care for their children, with no nursing or medical training.

You just have to.

If you have a child with medically complex or special needs, you pick up the skills you need to best deal with their care and help them thrive.

That is a parent’s role and calling.

We do it out of pure love.

And I believe that you could do it too, if that is what life brings your way.

I know my life is so much fuller and happier because I have Brielle.

I’m not saying it’s been smooth sailing - far from it.

It’s been a rollercoaster ride.

But at the end of the day, to see her little smile and her eyes light up, although she cannot talk, makes everything worthwhile.