Respectful Parent Advocacy in the Medical World

I didn’t know the real meaning of parent advocacy until I was a parent myself – I had experiences with it beforehand. My mother fought for me, defended me, batted off psychologists and friends who labeled me as depressed when I actually had a disease that was simply hard to diagnose.  Yet I didn’t fully appreciate her, until I was in her shoes. Not the same scenario – but a scenario where I had to speak for someone who couldn’t speak for herself.

As a mother, we have this instinct – we can’t explain it, we don’t always understand it ourselves. It’s an instinct where we know something is wrong or could be wrong, but we don’t know how to pinpoint it. I had that experience when I was pregnant with Paige – there was one day in particular, I felt her trying to move. Not moving like crazy in all sorts of positions – no, she was TRYING to move, desperately, and she couldn’t. Here I was, a mother with a child I’ve never met in my womb, and I knew she was struggling. Yet, I usually batted myself off “Oh stop overthinking it. She’s fine”

5 months later, my girl was intubated and dying. Nobody knew what was wrong. She stopped breathing. She couldn’t move. Everyone was stumped.

Then that one doctor came – the doctor who I still respect and admire to this day. He is the one who really listened – not to just take notes, not to get a family history or to see factual evidence of complications during pregnancy – he listened to the mama instinct. He listened to me tell him about how she was a newborn and sometimes I wouldn’t see her move her right hand and thought it was strange. How long I took to try and nurse her and I thought it was my fault. The days where her eyes just didn’t look right. That’s when he said “It could be something called Alternating Hemiplegia of Childhood” and a few tests later, he was right.

"You won’t know it, until you feel it.
There will be no understanding, until you’re in the midst.
Your eyes change,
Scurrying across the way for predators.
Looking for where you little cub is at.
Your ears sense more,
The tiny breath. The screaming tears. 
Your body responds,
Adrenaline kicks in 
Sleep is now a treat,
Silence, a gift. 
Yet you don’t care,
Until the cub now sleeps.
The fatigue rushes through you,
The ache sets in.
Your breasts feel tender,
Nothing can take it away. 
The tears want to come,
Yet your eyelids fall closed.
A minute passes -
The cry returns. The screams soar through.
And mama bear arises,
To take care of her den. "
Mama Bear, "Good Pastures", pg. 35

Parent advocacy. Speaking when your child can’t. It’s one of the hardest responsibilities I’ve ever taken on. I run a business, I’m a preacher’s wife –  I’ve had my big tasks and jobs – but nothing prepared me for this one.

Successful parent advocacy though is a different thing. You can advocate for your child by yelling, rolling your eyes, stomping out and firing a nurse (yes, I’ve done that one), or cursing a hospital in your heart. Blaming the hospital for every little thing – when in reality you are simply trying to blame someone for whats happening to your child. You can become bitter, you can begin generalizing ALL doctors, instead of just the one that made a mistake.

Advocating for a special needs child requires patience, respect, and meekness. I may know a lot more about Paige’s symptoms than you will ever know. Yet in order to figure this out, I need someone who knows the way genes & neurons work. I need someone who has memorized how medications work for different organs of the body – side effects of each one. I have too much on my mind to know that too. That’s why, it takes teamwork. Combine parental instinct and experience with a doctors unbiased knowledge, and you have a dream team.

The issue lies when doctors don’t use a parent’s instinct and experience to diagnose – and a parent who doesn’t respect a doctors knowledge and experience to guide. There is a gap. A huge one. A gap that’s filled with disrespect, bitterness, and honestly simple fatigue.

This blog isn’t supposed to fix, but to motivate. I don’t know your situation – are you on the outside looking in? Or are you in the middle of one of these gaps? Are you a doctor struggling how to deal with a parent’s passion and emotion? Are you a parent struggling to deal with a doctors unbiased expertise? Remember kindness. Remember respect. Remember meekness. Parent advocacy won’t be successful without those three.