Grieving is for death not for autism

Before you arrived

I fell in love with you the moment I saw those two lines on the pregnancy test. I knew nothing about, and had no expectations of you other than I knew we were destined to be together

Nice to meet you !

The day you were born, I had been in labour for nearly two days. I was completely devoid of energy but was so desperate to meet you that I was able to keep pushing on (metaphorically and literally) because I wanted you in my arms so desperately. I knew nothing about you, but wanted to learn everything.

When you arrived, you were a strange purple colour, covered in vernix and were gangly and skinny...but you were mine and absolutely perfect. As the midwife laid you across my chest, I breathed you in and felt love I could never have imagined. I remember, even after having been awake for days at this point, I still couldn't sleep because I was busy staring at you...in love.

You were so desperately wanted, and you were here earth-side...perfectly made...perfectly healthy.

Growing

From the get-go, you struggled with world. Sleep was not your friend, but I put it down to you being a baby ...I didn't know any different.

I had no comparison point. In hindsight, you have always struggled with sensory stuff. You needed to be squeezed by a swaddle to sleep. You needed perpetual motion to relax. You have always sought out particular textures to touch and chew. Once again, you were just like me as a baby, my mother had to put me in a pram and bash it around to get me to settle. So, I didn't know any different.

You were such a bright, sparkly baby. You wanted to learn about everything down to the most minute detail. Instead of focusing on the big picture, you needed to know about every little detail. Even if you were in the worst mood, your dad would take you down to the local train track and you would count the seemingly endless carriages of the interstate freight trains.

When you got to 2 years old, you could count past 20, you could say lots of single words, you knew the lyrics to every single Wiggles song, but you didn't seem to know your name, you could not answer a simple question and you didn't point.

We consulted a Paed, a Speech Therapist and a hearing test, but no one seemed to listen to me. I just wanted to help you as best as I could.

Autism here we come...

You were finally diagnosed after your 3rd birthday. The Psychologist was lovely but so sympathetic...like they were delivering news about death. I was fine about it - this news meant I could help teach you more effectively, I could stop sweating the small stuff, stop blaming myself for being a 'bad mum', and we could move forward. But their sombre attitude scared me, it made me feel like I should be upset and really worried. I mean I was a newbie and knew nothing about autism, and they were a professional. If they were worried, maybe I should be too!

When I tried some parents groups and forums, they were full of 'grief'... Apparently I was meant to be 'grieving the child I would never have'. What the actual?... The child I was meant to have was living and breathing next to me. He was as amazing the day before he was diagnosed, as the day after. I hadn't lost him, he was still there as a shining beacon of health.

Now, I think a lot of people may have thought I had fallen into the river of de-Nile, but it's now 6 years down the track and I still feel exactly the same. I have never grieved anything about our situation. Some days are incredibly challenging, mostly regarding dealing with the Government, and we do have an unconventional life but...this is our lot in life. He will likely live with me until my dying day and to be honest, this is fine with me, there could be way worse things in life that living with the happiest person I know.

Some days are hard, some days are glorious but not for one second would I want a different child. Every single night I am thankful to cuddle goodnight the little guy I have....just the way he is.