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.
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.
“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’….
Different languages perhaps…
but still the same story in the end.
It’s called: Motherhood.