Because it happens – a lot.

And while we may set out with the best intentions to educate and show the world that disability does not equal tragedy, the staring gradually wears us down.

For Miss Z and me, we will be hurrying through the grocery store, walking through the park or headed to my older daughter’s ballet class when I suddenly get the feeling we’re being watched.

And low and behold, there is often someone gawking at Miss Z.

Sometimes, it will be her behaviour that attracts attention – arms waving, legs kicking rhythmically at her footrest while she sings, “Awaaaa awaaaa, awaaa!” (if she’s happy) or tries to pull off her ears (if she’s unhappy).

Other times it might be the feed pump – a noticeable purple and grey medical device with tubes running from a bag containing a suspicious beige liquid and disappearing under her shirt.

Or it could simply be the existence of a 4-year-old girl in a wheelchair that makes them stare.

Others with more hidden disabilities than Miss Z may not attract those initial stares, but might also have to face a lot more judgment when they are stared at. Whatever the reason, staring can be hurtful.

Every time someone stares at Miss Z, it is a reminder that she’s different.

I wonder if I’m being judged, if I’m being pitied or if the person doesn’t think Miss Z should be out and about at the grocery store / park / ballet class with the ‘normal’ kids.

It makes me angry because what the staring person might not know is – believe it or not – I forget that Miss Z is different until I notice someone staring at her.  She has had multiple disabilities for pretty much her whole life and we are used to dealing with them.

To us, she’s just Miss Z and we love her just how she is.

Then again, not all stares are hostile and judgmental.

I noticed an elderly woman staring at Miss Z during a hydrotherapy session the other day. The woman was also using the pool and obviously keeping a close eye on Miss Z’s session.

It irritated me because I assumed she was staring disapprovingly, perhaps thinking Miss Z didn’t belong there.

But when the woman got out of the pool, she came over to me to say how lovely it was to see Miss Z enjoying the water.  She went on to say that Miss Z reminded her of her son, who has cerebral palsy and that he’s now 30 years old and she couldn’t be prouder of all he has achieved.

That made my day.

When we chose a primary school for Vegemite, Miss Z’s older sister, we intentionally chose one that was small and had a strong school community.

I didn’t want Vegemite to be forever answering questions about her sister nor did I want her to be bullied for having a sister who was ‘different’.

The best way to avoid this, I hoped, was a small school where everyone could get to know Miss Z. That worked well the first year, but this year, for various reasons, I haven’t had the opportunity to bring Miss Z to school as often.

Last Friday, Miss Z and I went to the school assembly and I noticed several children and parents staring at Miss Z.

It made me feel so sad.

Not because of the effect it would have on Vegemite – her friends and most of her class know Miss Z and either make a fuss over her or ignore her (or a bit of both) – in other words, standard younger sibling treatment.  Not because any of the stares were hostile, mean or judgmental.

It was curiosity about Miss Z that was making them stare.

But because it reminded me that even in a small community like Vegemite’s primary school, I couldn’t ever ease up on my efforts to make sure that Miss Z is included.

People – adults and children – often stare because the sight of a child with disabilities is a rarity.

It isn’t something they see every day, so it makes them look.

We may no longer lock children with disabilities away in institutions, but they are still often invisible in society.

Lack of accessibility, lack of support and lack of public understanding all conspire to make even the most determined of parents decide it is just easier to stay home.

And that saddens me, not only because it isolates children like Miss Z and their parents, but also because it prevents disability from becoming more ordinary and less stare-worthy.

Ever since I have stopped working outside the home I have no idea how to answer the question “what do you do?”

I am not a stay-at-home mom.

I am so much more.

Yes, as a mother I have my routine duties.

I am a chocolate milk maker, bedtime story reader, knock-knock joke-teller to our 5 year old, and laundry lady for the entire family.

I am the toothpaste and toilet paper purchaser as well as the “Swiffer-er.” (Hands and knees scrubbing is simply not a priority!)

I do all of this and more.

I am my youngest son’s physical, occupational, and speech therapist, his nurse, his soft place to snuggle, his advocate, his biggest cheerleader, his mommy, but most of all I am his voice.

How do you define all of that?

Rewind a bit….

When our youngest son was 3 months old I brought him in to his pediatrician so she could see his lack of neck strength.

She told me that everyone develops at their own pace and not to worry.

I brought him home and the nagging feeling in my heart never went away.

I knew that something was amiss, but yet didn’t really want to admit it.

Really, who wants to admit that something is wrong with their baby?

I then brought him in a month or so later and asked to be referred to a physical therapist.

He still was not holding his head up and I wanted so badly for him to reach this milestone.

It’s agonizing watching your child unable to do something that most parents take for granted.

It’s even more heart wrenching trying to ignore what other people are thinking and likely saying about your child behind your back.

Do you know what it’s like day after day trying to get your son to accomplish ONE goal?

All I want is for him to hold his head up.

Imagine trying to get your typical 4 year old child to recognize a shape.

Simple enough right?

Day after day you show him a picture of a circle and he can never identify this shape, he can’t even point to it.

Monday, you get the flashcard out and try to get him to say “circle.”

No luck today.

He says “cir.”

Tuesday, you get a picture of a sun out and try to get him to say “circle.”

He says nothing; he just cries.

You cry too, and cry again when you drive him to therapy and beg for him to just say the word!

Wednesday, you show him a cookie and ask him what shape it is.

He says something that sounds very similar to “circle” but it’s not quite right.

Today you cheer.

You continue to do this the rest of the week.

You continue the rest of the month.

I am the mom who is still sitting at the kitchen table with the wrinkled flashcard trying to get my son to say “circle.”

I will never ever give up.

It’s anything but simple. There are lots of close calls and still lots of tears.

You don’t give up.

Three hundred and sixty-five days later you are still sitting at the kitchen table with the worn out flashcard trying desperately for your son to say “circle.”

This is what I do. Every. Day.

I am more than a stay at home mom.

I know that he will accomplish this goal; it’s my job.

I will continue to do my job as his physical, occupational, and speech therapist, his nurse, his soft place to snuggle, his advocate, his biggest cheerleader, his mommy, and his voice.

So, I guess when the question of “what do you do?” is asked from now on I will simply answer mostly everything.

You know the familiar days jammed pack with phone calls, returning emails, running back and forth from therapies, doctors appointments and then realizing you’re out of time to make dinner and you reluctantly head for the nearest drive thru for food.

You’ve lost more battles than you won that day and are feeling defeated.

Your energy feels non-existent.

And let’s not forget the heartbroken factor and that little voice in the back of your mind that says I wish things were easier for my child with special needs. Sometimes we need a comfort treat.

Correction… we deserve a comfort treat.

A comfort treat is going to be different for each special needs parent.

For me it’s a chocolate Pepsi. Which is really a heap of chocolate syrup at the bottom of a glass with Pepsi poured over it with crushed ice. I prefer mine unstirred and you drink it with a straw so you can get to the chocolate at the very end.

I know admittedly, it’s a treat that isn’t good for me. It isn’t organic and it’s full of more sugar than I’m sure my aging metabolism really needs. I suppose that’s why they call it a treat because you aren’t affording yourself the luxury often.

When I have a chocolate Pepsi it reminds me of when times were simple.

My mother would take me to the local Woolworth’s to shop as a child and it had a diner in the store and we would always sit at a booth together she would order me a chocolate Pepsi fountain drink.

It’s that treat that gives me warm fuzzy feelings and memories, a break from my brain over thinking about everything that comes along with special needs parenting.

For other parents a comfort treat could be a hot bath, watching a movie on Netflix without any interruptions while Dad pulls duty, a cup of tea and curling up to read a book for even twenty minutes, or saving up enough money to splurge on a new color of nail polish to make your over-washed and over-sanitized hands feel pretty again.

However, the most rewarding comfort treats typically take you back in time to a really wonderful and beautiful memory. It doesn’t matter what the treat is as long as it is something that brings you a moment of comfort.

Special needs parenting can really beat us up inside and out.

And it’s not at all the fault of our children.

It’s because we can’t just be parents.

We have to be advocates, cheerleaders, believers in possibilities, therapists, nurses, doctors, our child’s secretary, fighters… the list is endless because we can’t just be “mom” or “dad.”

The hats we wear are many and it’s draining physically and emotionally.

If we don’t find just one thing in our day that brings us a breath of peace just for a moment and re-centers the chaos that often surrounds this journey we couldn’t repeat all we must do and rise to the occasion and demands of special needs parenting time and time again.

We owe it to ourselves to find that treat – to reward ourselves for a job well done… even if it’s just a chocolate Pepsi.

“Cure sometimes, treat often, comfort always.” – Hippocrates