the inner dialogue of a special needs mama

At a recent social event, the conversation rolled on until it came around to that question ‘so how is your daughter going?’  I responded with a brief update; she’s communicating more through eye-contact, managing the car-seat and overall doing great. 

It’s a difficult question to answer sometimes, when you have a medically fragile child.

Now, if I was sitting with other special need’s mama’s, I might talk in depth about: increased tone, sudden spasticity, new A.F.O’s, drooling, the near-choking experience she had, our latest neurology report, the new paediatric seating that arrived, the manual food blender we just purchased, so we can blend food for her when we’re out, or the latest therapy session.

But they feel like two different languages, and there’s nothing wrong with that. In fact, its a gift to be able to speak your language fluently to those who understand, there’s a flow in that. Yet, it can be just as important to slow things down so that the other person, (who may not be so fully versed in this ‘special needs’ language), can also be a part of the journey and vice versa. 

I’ve never wanted my friends to feel that they have to avoid topics such as their child’s first steps, or first words, in my presence. In fact, I want to celebrate their milestone achievements with them, because I see the miracle. It’s beautiful to be around, believe me.

When my first daughter learnt to wave, feed, crawl, walk and talk, I was thrilled, yet I am certain I did not appreciate these pivotal milestones, to the extent that I do now. Part of me yearns for them, part of me get’s shocked by them (because sometimes I forget that toddlers Chiara’s age or younger can do such things!) and the other part sits quietly in the beauty and mystery of it all. It’s as simple as that.

 

Let me explain a little about the ‘shock’ part of it all.

 

Firstly, I digress a little, a close friend of mine coined the phrase ‘the shock of the familiar’, when speaking about her return to Australia after travelling solo overseas. This was around the time of  life before kids, where some of us travelled to random parts of the world to expand our minds and spirits. Travel changes you. You return to your homeland, with your new sense of expansive life and adventure, only to be shocked back into the familiar. The same crazy peak-hour traffic, when you were used living on a yacht, the same sense of responsibility when you were used to being anonymous on your travels. 

 
Well, this is how it is for me, but in direct opposite.
 
Are you still with me? Or did I just lose you rambling on about travel…
 
So, these milestones and abilities of toddlers my daughters age and younger, shock me because they are not familiar. They stand out like .. well you know the rest of the sentence. But please do not read with sorrow, it is just the way things are for us, and hundreds of families. Never forget that there is great love, even alongside grief.
 
So for me, it’s now the shock of the ‘un-familar’
 
I know this to be true, when I take notice of my silent inner-dialogue when spending times with my friends and their little tribes. It goes something like this:
 
“oh my god, did they just sit down at the table, then use their pincer grip to perfectly pick up a strawberry”…
 
“yes, they did, oh wow now look they are feeding themselves. No way, they don’t bite their fingers by accident”
 
“did she just say “Mama, more phlease”, omg she said Mama, oh my god, thats beautiful
 
“did they just play for over an hour with toys, on their own moving from one room to the next”
 
“yay, she located her mid-line to balance over that step, what a little legend”
 
“did she just fall asleep happily in the supine position and sleep for hours, I must be dreaming’….
 
Yes, sometimes these are the kinds of things that are spinning around in my mind, and of course I naturally want these for Chiara. But our journey is a little different, and I’m owning it – some days in shock & yearning, others in accepting the beauty & mystery. I also wouldn’t have it any other way (the seeing friends part), I love catching up with friends and family – these friendships mean the world to me, kids or no kids – their tribes are intwined with mine and it’s an honour.
 
To all us Mama’s who are in this journey together, who love, adore and work tirelessly for our precious little peace warriors (spesh-needs or not), my story should not be any different to yours.
 

Different languages perhaps…

but still the same story in the end.

It’s called: Motherhood.

 [muhth -er-hoo d] 
 
noun

1.

the state of being a mothermaternity.

2.

the qualities or spirit of a mother

3.

mothers collectively.
Screen Shot 2016-01-19 at 2.39.06 pm

Categories: Motherhood

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