Diagnosis, Ella, Special needs parenting

Room

Ella has been sick, I took her to the gp, who said to head straight to Wangaratta hospital to be checked out, the hospital is a half hour drive away, and funnily enough it was the hospital Ella was born.

As she declined during the day I decided to take her over.
We arrived at 4:30, and After 4 hours in the waiting room, and then 6 hours in an emergency room bay they admitted her.

As they wheeled her down the corridor to the peadiatrics department, it dawned on me, this was also were she was diagnosed.
I couldn’t believe it when they turned into the very same room Ella and I spent the first month of her life.
We did all the check in stuff, answered all the questions, did OBs and got Ella to sleep.
Later that day, the nurse that clocks on would be the very same nurse that looked after us 8 years ago. I won’t recognise her, but she would remember me – and of course Ella. She would tell me how she’s thought if Ella often over the last 8 years wondering how she was doing, and how we were doing.

But there I was in that room, at 3:30am, instead of sleeping I sat next to Ella in that very same spot and marveled.

I marveled at the room I was in, the same walls I stared at blankly for hours on end while my mind raced just 8 years ago.

and I thought about when I was here last. And who I was back then.

I thought about the The bloody horrible pull out sofa I slept on, thankfully now in its place was a bed.
The night after night laying stiff as a board – not moving – because every movement made it creak, and I didn’t want to wake the baby, because I didn’t know how to settle her when she cried

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That bloody loud ticking clock still on the wall, I remember taking the batteries out one night because the tick tick tick made me so damn irrationally mad, I was mad at the world.
The very same bathroom I vomited in after crying so hard I made myself sick, the toilet I sat next to on the floor, hugging my knees pulled up to my chest so tightly my arms ached, with my head spinning with the new life I was just thrust into, feeling like banging it into the wall just to quiet down the noise inside. The million questions I had.

8 years ago, in this very same room, with my perfect baby.
8 years ago, getting that diagnosis of cri du chat, and feeling like my perfect baby had been taken away, and replaced with something… Different.
The perfect life I had planned in my mind was snatched away and in its place, Something… Worse?
And then, at 4 am it happened. I cried. I sat quietly and let the tears flow.  All 8 years of them it seemed

I stared that bed. In its place was once a cot, and before that, a humidity crib, and inside it, a tiny little life I had created.
I think about our lives, so different from what I imaged back then, so different from what I thought they would be. Not worse – different.
And I think about all the people I have met along the way, people I never would have known if not for this thing… This diagnosis that makes Ella, Ella.

And I balled my eyes out
But not out of sadness, not this time.
Because I am bursting with pride

The girl that walked into this very room 8 years ago, trailing behind a nurse pushing a bassinet, head down, feeling lost. Huge nappy bag overflowing with crap we didn’t need.

That girl was a child – And She doesn’t exist any more.
She didn’t know how to answer the drs questions, she couldn’t remember feeding times or wet nappy output.
She was scared, stupid, and alone.
She didn’t know how to comfort her baby when she cried. She left the room when the nurses drew blood, She didn’t know what she was doing, or who she would become.

Today, I answered questions confidently. I knew what I was talking about. I had just what Ella needed for the night with me just in case we were admitted (didn’t pack anything for me which was a bit of a bummer, but hey, I’m not super woman 😂)
I knew exactly how to get Ella to take the medication they needed her to take. I knew the games to play and the tricks to use. I had a couple of Ella’s ‘comfort items’ and of course jelly beans for bribary.
I knew exactly how to get her to have the x-rays she was so terrified of.
I knew when she ate last, when she vomited last, how much she’d drank, when she peed last, her last bowel movement.
So here I sit, at 5 am writing this. I can see the sunshine slowly creeping under the blind, kind of regretting all this self reflection knowing the day is about to begin.

But I can hear that clock still ticking on the wall
Tick
Tick
Tick
As if marking more time passing, and the strength in me growing, daring me to imagine what the next 8 years could bring, how much more joy we can fill them with.
And finally looking down at my tall, lanky, beautiful, amazing daughter sleeping in this very same room and I know she’s perfect.

She always was.

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