Special needs parenting

Waves, grief and the future

It hit me like a freight train, the crushing weight of it, and I couldn’t breath.

It was just like any other day.
I’ve been super busy lately, Reece is taking up more time as he’s grown, and Ive taken on a little side gig for a bit of extra cash and things with Ella have been going really well.  Every running smoothly and really busy, just the way I like it. lol

Ella’s toilet training has finally taken off, with more dry days than accidents, and her behaviour has been like night and day! It’s like something has flipped in her head the last few months, she’s been absolutely amazing, mostly dressing herself, listening better, and trying her hardest at school and appointments.
Of course there’s still been a few meltdowns/ violence/ cranky pants moments but all in all, it’s fantastic!

Then Last week, she climbed up on my lap for a cuddle, arms and legs wrapped around me like a possum – as she still sometimes does.  She wanted to be carried – as she still sometimes does, of course I obliged, as I pretty much always do lol

And I struggled to stand up with her.

It was just for a second, but it’s like time froze, I sat back down.
And in that second that lasted a lifetime, it hit me, like a shit tonne of reality bricks just crashing down on and around me.

One day, she’s going to be too big for this.
One day, I won’t be able to carry her

I’ll have to say
No
I can’t
You’re too big

And my heart ached for her
For me
For the future.

I sat there with my gangly, bony, oh so innocent girl in a chest to chest bear hug and cried.

It seems the grief I feel is never ending, it just comes in waves. I’ve written about my grief before Here, and I seriously was starting to feel like the worst of it was behind us. It may have taken almost 8 years, but we got there! – or so I thought

Honestly, sometimes I forget that we’re different, that our situation isn’t the ideal, or that it’s somehow ‘sad’ but then something will remind me, it could be as simple as a stranger looking at me with pity, or as complex as meeting someone new and having to explain Ella’s diagnosis all over again, and I’ll stop and think

“Oh that’s right, Ella’s different”
For the most part I can shrug it off and carry on carrying on, no biggie.

It was my son’s 1 year old birthday recently, there were 8 kids including my 2 and Ella was the eldest by a few years – yet in terms of development and cognitive function, she was probably the youngest. Not that long ago seeing kids half her age master the rock climbing wall that Ella’s been trying to climb for years would have been hard for me to see, but I’ve finally grown into my situation, and I really loved seeing them all play together, it was amazing day!

Then something completely innocuous like a hug, and it brings the weight back down.

One day – she’ll be too big

One day – she’ll be playing with her little brothers outgrown toys

One day – Her peers will outgrow her completly and move on with their lives

One day – I’ll have to explain she can’t play with little kids, because she will be a teenager and could hurt them

One day – parents will be uncomfortable with Ella playing with their young children because she will be a young adult, and a stranger.

One day – instead of smiling and saying ‘its ok’ when she hugs strangers, they will ignore her because she’ll be an adult giving unwanted physical contact.

One day – she might seriously hurt me, or herself.

One day – she’ll need more care than I can give

One day – she’ll end up in assisted living

It’s the known that scares me more than the unknown.

And when all these ‘one days’ start crowding my mind it can be really scary, heartbreaking and overwhelming.

Screenshot_20181114-050440I sit and watch her at home, a 7 year old – too tall for her age, playing with her one year old brother, and the similarities are astounding, both mastering the same fine motor skills, both enjoying the same toys and playing at the same level. On good days, I appreciate the cuteness of it, the bond they are forming together and the lessons they are teaching each other.
But other days, I think how Ella will still be playing with these toys once Reece outgrows them, and outgrows her, and I feel sadness.

It’s that switch, that switch I know I’m getting closer to, the gap that keeps widening between Ella and her peers, that sense of doom that biologically there’s nothing stopping the engine of her ‘aging’, as cognitively, she stalls.

That’s the difference between being a parent to a special needs child, and a carer to an adult with a disability. The years are flying by and she’ll be a teenager, I’ll have to manage things like periods, hormones, bras, and self care that she can’t do for herself.

It’s the difference between buying a toilet training seat and nappies from the supermarket, to ‘incontinance aids’ from specialist shops.

The difference between teaching your growing daughter about pads and tampons, to needing to put her in nappies and hope she doesn’t freak out at the sight of blood for a week every month.

The difference between a little girl throwing a tantrum, and an adult acting inappropriately

The difference between people thinking she’s cute, and people being uncomfortable around her.

The difference between being hopeful for her future, and knowing that this is as far as she can go.

And the weight of it, is sometimes crushing.

 

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