Ella, Special needs parenting


I’ve been lucky enough to live a pretty happy life, I haven’t lost many people, my dog growing up was my first experience with loss.  He had been sent to my Aunties place while we were selling our  house, and he ran away from there, I’m not sure how long my parents waited before they told us but I remember being told vividly.  My big brother, always the strong one, dealing with such a big emotion. We were in my room and I just remember my brother picking at the stickers on my doll house.  I don’t think I really understood, the conversation was more that our dog ran away not that he had died.
Of course there was others when I was young, my great grand parents, my dads best friend, And into my adulthood I lost my my grandfather, who had unfortunately been sick for a while first.

But my 2 biggest experiences with grief are for my dad, and for a child that never existed.

When Ella was first diagnosed I spent hours reading. reading blogs and reading other peoples experiences, trying to work out and come to terms with what I was feeling, and the most accurate description I found is grief.
And My Dad…  He was healthy, he was young and (to me at least) he was invincible.   He was my biggest support with Ella, and we had talked about my feeling of loss after Ella was diagnosed.  I remember saying to him that I’d never felt it before, that it was so hard to explain.  but fate stepped in and ripped my father away as well.  If it wasn’t clear before what I was feeling, it definitely was after that.  I grieved for both these big losses, and I continue to grieve.

I’ve read the term “I grieve for a child I didnt lose/a child that’s still here” when referring to a diagnosis, and for me that’s not entirely accurate. I don’t grieve for Ella, I love everything about her, and she makes me happy in so many ways.
More accurately, when Ella was diagnosed I grieved for the child that I had envisioned while I was pregnant.  She didn’t exist anywhere but my mind but the loss was still so real, so vivid.  That baby that I would read to and sing to, the baby that I would breastfeed effortlessly.  That baby that was going to do baby sign at 6 months old, (yes, I had planned on doing baby sign, fate played a hilarious trick) That child that was going to love to read, just like I did when I was young.  That precocious kid that would ask so many questions, I had my dads stupid and silly answers all ready to go.
She’d laugh at my silly jokes – when she got a bit older she’d probably think I was oh so lame! And she was going to be smart, so smart that she’d have the world at her feet. I’d buy her a diary and encourage her to write, and let’s be honest I’d probably read it too.  I would help her with her homework, and encourage her to do well in school, go to uni, have a career in something she loved.  We’d go out for coffee and talk about boys (or girls!)
I’d comfort her after her first broken heart, and tell her of my teenage heartbreaks.  And the dreams go on.  All pretty standard nieve and idealistic daydreams that a first time mum-to-be has, and all these things and more I felt being torn away from me as the diagnosis became clear.  My first big loss, my first experience with proper grief.
Suddenly my life got harder, my idealistic view on the world hardened. I had this brand new baby to look after and this brand new life to figure out.

When I was told my dad had died, it was so similar to when Ella was diagnosed it was uncanny.
Both times I was alone when I got the news, my heart pounding in my chest and a strange ringing so loud in my ears. My mind raging against me, not believing what I was hearing, almost reverting to a childish “NO, THIS ISN’T HAPPENING!”.
Sitting there in silence, and yet the noise in my head, deafening me – My thoughts crowding me as I sat alone, processing what I’d been told, just staring at my hands for a while before finally making calls and bringing other people into my nightmare.  Feeling numb as I said the words but not having the answers, No, I don’t know how he died, No, I don’t know what cri du chat actually is,
No I don’t know why this is happening.

My dad played such a huge part in my life, we spoke very day, usually just talking shit because I was bored or he was driving somewhere (always using hands free, safety first!) Me asking
“Where are you?” And as always his answer
“In the car!”
“No but where’s the car?” I’d say with a groan, then hearing the smile in his voice as he’d reply
“On the road!”

When I was a kid he was an even bigger kid, telling lame jokes and he had an answer for everything!  Although growing up I realised half the answers he gave were made up!  lol
It was never a ‘proper dinner party’ unless someone brought wines, so the question “who’s on wines” was frequent. (hint: it was always him)
BBQs at dads place where always a laugh. He was the only adult (aside from me) that got so excited for birthdays, we’d have birthday EVES.  My birthday being just 3 days after his, so a BBQ at dads place was a must.
We both quit smoking so many times! He’d come over for lunch and I’d sheepishly tell him I caved.
“Woo hoo, we’ve got smokes” he’d say, and while taking a drag he’d ‘tsk tsk’ at me and tell me I should quit 😂  (Side note – I have finally quit, over a year now!)
He’d send me hampers for mothers day and just because, and always tell me I’m doing a ‘good job’  and he’d even text Joel when I was having a bad day to bring home wines lol

When Ella was diagnosed, and I left a shitty relationship around the same time, he was there. He helped me get into my own place, and was always ‘on call’ to come to any appointment, or make the long drive to the children’s Hospital with Ella and I.  Some of my fondest memories with him are in the car, whether it be going out in a storm so he could clear a tree off the road when I was young, or the long talks we had on the drives to the hospital. I could go on for hours with stories of him and ways he’s taught me or made me laugh.
Was it perfect? Of course not!  Sometimes he’d drive me nuts and he certainly didn’t agree with my life choices some of the time, and I’m sure I disappointed him plenty. But he was always there.

And then he wasn’t.  – Just like when Ella was diagnosed,  suddenly my life got harder.
Both times I had to grow up, and I had to do it fast.  I selfishly thought about all the things I had lost, all the things I missed out on.

Ultimately that’s what grief is isn’t it?  Selfish.

The person that’s gone (or didn’t exist) doesn’t care, no matter what afterlife you believe in, if any at all.  They’re happy living it up in heaven, or patiently waiting to come back as a puppy, or just gone.
We grieve for the loss that we feel. for what we miss, and that’s OK.  I don’t think I will ever ‘get over’ my losses, nor do I think it will get easier.  But I’ve learnt to live with it, to be happy in spite of it and appreciate all I have.  I don’t claim to have all the answers, and some days are harder than others, I try to look on the bright side, as cliche as that is.

While I didn’t get the daughter I thought I would – I’m grateful I have a beautiful, amazing, smart-in-her-own-way daughter, that I couldn’t imagine life without.
And I’ll never get to see my dad grow old, or tease him about going bald(er) – I’m so grateful for all the time I had with him, and everything he taught me.

So, I’ve learnt to live with my grief.  There will always be good days and bad days, and for the bad days, at least we have wines.

*Disclaimer* I’m not an alcoholic, and I don’t use wine to bury my feelings, just to unwind after a rough day. (or a good day lol) 😂

3 thoughts on “greif”

  1. You did it!!
    That was a beautiful memorial to your dad and a lovely way to explain how you feel. Ella is a lucky girl to have a mum like you


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