Rare Things Happen To Real People - There Must Be Choice

This is Emma. 

She is a child of God - a joy, a delight and deeply loved. 

I have never spoken about this widely because, let's be honest, telling a story that challenges people's firmly held narrative on the safety of vaccines doesn't really win friends. 

There are many people close to us who don't know this part of our story. 

But, now is the time......

Emma was 15 months old when she was brain damaged from a vaccine. 

Obviously, I was not anti-anything when I walked into that doctor's office. 

I believed I was doing the right thing, the responsible thing, the good thing.....

But, I wasn't.  At least, not for Emma. 

I had been told the risks were minimal; adverse reactions: rare.

No one warned me that rare things happen to real people.

No one warned me that it could happen to me: to my child. 

And, when it did happen - the silence was deafening.

Doctor's were cold and dismissive. 

Only one specialist acknowledged it was caused by the vaccine and had seen this before but wasn't allowed to discuss it. 

I was left completely alone to figure out how and why this happened. 

I searched online and discovered communities of people with similiar experiences. 

People call them anti-vaxxers.

But, in my experience, they were just people like me...

... real people with real stories.

Eerily similar stories. 

Voices get loud and people tend to get angry when someone they love gets hurt. 

We adore Emma and trust in God's sovereignty, but it has been hard to reconcile that her disability was caused by a vaccine that we, by choice, administered. 

For years, I couldn't look at her baby photos as the guilt of my decision was overwhelming.

Why had I trusted so blindly? Why hadn't I asked more questions? 

Why hadn't I responded to the quiet whisper that told me not to go to that appointment? 

That was the hardest one to work through. 

Today, there is acceptance and peace about Emma's disability. 

But, sometimes I still feel sad. 

Occassionally, I feel overwhelmed that my child's body will continue to grow into a teenager and an adult and yet, her mind is frozen in time - forever, a baby.

My baby. 

It's important to know that I'm not angry.

But, because of our story, I will passionately defend people's right to choose.

Where there is a risk - there must be a choice. 

No one should be coerced by fear, bullied, threatened or forced to comply with anything that may cause themselves or their children harm.

We must be free to measure the risks. 

We must be free to listen to the quiet whisper of our own conscience.  

We must remember - Rare things happen to real people. 

There must be freedom of choice. 

The mum who judges VS the mum who 'sees'

Recently, we had a tough day of hospital appointments. 

As many of you are aware, the hospital is not a great place for kids with ASD. It is always busy, loud, over-crowded and there is a lot of waiting. But now, due to COVID, there is no toy area or play therapists wandering around to offer even a momentary distraction.  

Emma was not content to sit and wait, so every chance she got she would sprint in the direction of the consulting suites and barge in to someone else's medical appointment (if I was a moment too slow). Other times, she would just wander quietly and aimlessly into the corridor before throwing her ipad and launching into a run. As I gave chase for the 28th time and told her to sit on the chair, I realised we were providing entertainment for the 50 or so other people waiting anxiously for their appointments.

I wondered what they were thinking while they watched....

"Look at that wild kid - why isn't that mum disciplining her?"

"Some people shouldn't have kids if they can't control them..."

"I'd smack my kid if she behaved like that" or "Thank God MY child doesn't behave like that..."

Sadly, these are not phrases I imagine people are saying, these are actual comments I've heard. And, sometimes the disapproving stares communicate more than words anyway. 

I've become very good at ignoring them. Well, most of the time. 

Once the doctor was ready, we went into the consulting room and Emma (knowing the drill) climbed up on the examination bed. The doctor then realised we had to go to a different room for a weigh / measure (due to COVID)  and this was NOT okay with Emma as it was unfamiliar. As we walked back through the waiting room, Emma's anxiety sky rocketed and she launched into a full meltdown in front of all the people sitting there. She screamed, she spat, she tried to grab any people or things she could get her hands on and then finally just threw herself on the ground wailing.

I can't pick her up anymore so after my desperate attempts to encourage her to move failed (and the doctor was waiting), I awkwardly dragged her into the room. Once in the new room, she continued to scream and throw everything she could get her hands on. At one point she even managed to remove the doctor's very nice (and probably expensive) high heel and throw it. That was a low point.

As we were leaving, mentally and physically exhausted, a mum (stranger) came up behind me and put her hand on my shoulder. She looked me in the eye and said, "I just wanted to tell you you're doing a great job". My heart flooded with thankfulness. It was such a small, simple gesture from a fellow mum but its impact was huge. I felt like someone had lit a candle in a dark room as a reminder that 'light' still existed and all was not bleak. 

As I smiled and said thankyou, her eyes filled with tears. She explained that she had been watching me and felt overwhelmed with how hard it must be. Her mumma heart filled with compassion and she felt compelled to reach out. 

My heart was softened because someone actually 'saw' me.

Most mothers only 'see' what is superficial - the behavior, the defiance, my apparent lack of 'control', her unbrushed hair....sometimes they see through the lens of their own insecurity and self-centredness and use my child to build themselves up or compare their child to mine.

But it takes an exceptional person, one who is not afraid to feel things deeply, to truly 'see' another mum and allow their heart to be filled with love and compassion instead of judgement.

Which mum are you? The one who 'judges' or the one who 'sees'?

If I'm honest, I'm probably a bit of both at times. 

But I know which mum I want to be.

When you see a mum struggling with a child with behaviors, what is your response? Are you the mum who thanks God your child is not like that or the mum who recognises the child is having a hard time and offers a gentle, reassuring smile that communicates I 'see' you. 

Be THAT mum

When you overhear a mum 'lose' it when a child is struggling with behaviors, do you awkwardly ignore them and think "I would never speak to my child like that" or do you stop and offer assistance? Sure, you risk getting a mouthful and they'll probably say no, but I know my frustration has been diffused in the past by someone 'seeing' me and offering help. 

Be THAT mum

Mum's often stare or comment disapprovingly when they see the siblings supporting Emma. I don't know if many have stopped to consider how different, and challenging their life is having a sibling with a disability. Instead of judging me, choose to be the mum that recognise that family dynamics are significantly different when you have a child with significant needs. How about recognising the 'caring' role they take on out of love for their sibling and encourage them? 

Be THAT mum.

When your child spots a disabled person or a child acting strangely and you witness the 'raised eyebrow' stare or a rude comment (and that's okay...they're still learning) you can pretend not to notice or you can seize the teachable moment and explain that some people are simply, different and encourage them to say 'hello'. 

Be THAT mum

When you hear of a family going on a holiday without their special needs child, do you judge how terrible that is? Or does your heart break a little to think of what it means for that family to not be able to include one of their own children in those special memories like you can. 

Be THAT mum

When your special needs mum friend is bit short, snippy or vague and disconnected, do you assume they're not 'coping' and rush to tell someone of your 'concern'? Or do you recognise that this mum carries a heavy burden (not her child but the fear and anxiety associated with their child) and might need a bit more of your patience and understanding than your average mum friend.

Be the mum that chooses compassion instead of accusation.

Be the mum that offers to help instead of walking the other way. 

Be the mum that chooses to build others up and not tear them down. 

Be the mum that chooses love instead of judgement. 

Be the mum that you have needed others to be for you.

Be the mum who 'sees'. 

Be THAT mum. 

Special Needs Parents Don't Get Ice-cream

Over the summer break, we went away with friends to a caravan park. 

One afternoon, everyone decided it would be fun to take the kids for a walk down the main street to get an ice-cream.

I love ice-cream. But I couldn't go.

Firstly, Emma doesn't have the physical stamina to walk long distances and she is getting so darn big that it's impossible for me to carry her when she gets tired.

Secondly, it's not safe for Emma to be so close to a main road as she has no awareness of danger. It's especially dangerous in a large group where I know I'm likely to get distracted and it only takes a second for her to escape and run for the road.

Thirdly, we can't take Emma to the shops as, like the eternal toddler she is, runs around impulsively grabbing everything and then has a meltdown when denied what she wants which could be anything from a lolly to the EFTPOS machine.  I'm not overly concerned by the judgement that a 7 year-old writhing on the floor attracts; but I AM concerned about her breaking or damaging something that belongs to someone else.

Lastly, Emma still needs to be spoon fed certain foods and ice-cream is one of those. Most people don't know this as it seems to attract the most disapproval from others, particularly other children, so we never do this publicly. Spoon feeding and nappy changing are 2 things we keep private to try and maintain some dignity for Emma.

I watched everyone walk away and realised I was quite literally alone.

I wanted an ice-cream.

I looked at Emma sitting on the camping chair; she was blissfully unaware that she was missing out. Thank God for that, I thought. 

I reassured myself, "It's okay. It's just an ice-cream"......

But it wasn't just an ice-cream. It was a 'cold' (pun intended) reminder of the isolation that special needs families face, not because we're rejected or lack support, but simply because we can't do what other families do so easily. 

We get left behind: literally and figuratively.

We knew that by attempting this camping trip that it would be a struggle with Emma and we knew it would mean being confined to the caravan park.

It was a dark reminder that as life moves forward for everyone else; time is standing still for us. 

As people move forward and celebrate their children's achievements, we are still stuck at home with the 'baby' enduring sleepless nights, nappy changes and tantrums but without the redeeming 'cuteness' or hope that the stage will pass. 

While most families can enjoy activities together,  our family has no choice but to be constantly split in two with one parent left behind with Emma. 

It was at this moment, one of my friends who I assumed had left, appeared and said that she'd decided to stay with me. I literally breathed a sigh of relief. Her gesture felt like healing ointment on my aching heart. 

I admitted I was trying really hard not to feel sorry for myself. She suggested we walk a few metres over to the camp kiosk and get an ice-cream.

When we got there, I noticed the freezer had Ben&Jerry's which is actually my favourite ice-cream.

Suddenly, I had a profound thought which I believe was God speaking to me.

 "See, you didn't miss out on an ice-cream. It's just different"..........

I became teary with a sense of joy and thankfulness that I hadn't missed out; my father God was with me and had simply provided a 'different' ice-cream. It wasn't the one I wanted and it was different to the one everyone else got - but it was a pretty awesome ice-cream that I loved. 

Finding the joy and hope in 'different'

If, as special needs families, we focus too much on what we miss out on we will live in a perpetual state of resentment towards our child. Feelings of loneliness and isolation will threaten to blind us from seeing the joy in front of us. 

We must learn to 'tune in' to the goodness in our experience (and others) rather than just 'tuning out' the judgement, rejection and loneliness.

It's a subtle difference but has a profound impact on how we feel. 

If we simply 'tune out' the hurt, we go into survival mode: where we find ourselves in a constant state of putting out spot fires which can be exhausting (mentally). Alternatively, we can learn to 'tune in' to the goodness, hope and joy in our experience, and move from simply surviving to thriving. Joy is strong and powerful and blankets (covers) the ever-present spot fires of our experience.

In this way, we are free not just to accept, but enjoy the ice-cream we've been given!  

Whenever I feel my thoughts descending, I stop and find something to be thankful for. 💗

If I feel lonely in my experience, I remind myself of all the other mum's out there walking the same road.....

If I'm upset because someone has been unkind, I try and bring to memory a time when someone was kind and my heart was warmed.....

When I feel like all my strength is gone, I remind myself of how God has always renewed my strength when I've been drained....

When I find myself saying, "I can't do this", I remember how many millions of times I've said that and yet I've just kept on doing it....

And, I will keep on doing it.  So will you. 

Because whether our ice-cream is the standard variety, gourmet, a Bubble O'Bill, soy flavour or vegan.....

....it's still awesome - it's just different.