At a recent social event, the conversation flowed until it came to the question: "So how is your daughter going?"
I responded with a brief update: "She's communicating more through eye-contact and, overall, doing great."
It's a difficult question to answer when you have a medically fragile child.
Now, if I was sitting with other special-needs mamas, I might talk in-depth about increased tone, sudden spasticity, new AFOs, drooling, the near-choking experience, our latest neurology report, the new paediatric seating that arrived, the manual, travel-food blender we just purchased or the latest therapy session...
But they feel like two different languages. And there's nothing wrong with that. In fact, it's 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.
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 successful milestones, part of me gets 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.
The milestones and abilities of toddlers my daughter's age and younger shock me because they are not familiar. Our life feels so normal until we leave the house and see, in great proportions, the differences in abilities. Naturally, it jolts my heart from time to time, but please do not read with sorrow, it is just the way things are for us and hundreds of families around the world. Never forget that there is great love, even alongside grief.
Here is an example of my inner and outer dialogue when spending time with my friends and their little tribes.
"Oh my god, did they just sit down at the table and use their pincer grip to 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 please?' Oh my god, she said Mama. Oh my god, that's 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. I would love it if my daughter could experience any of these daily activities. But our journey is a little different and I'm owning it -- some days in shock and yearning, others in accepting the beauty and mystery.
To all us mamas who are on this journey, who love, adore and work tirelessly for our precious little peace-warriors (special-needs or not), my story should not be any different from yours.
Different languages perhaps, but still the same story in the end.
It's called Motherhood. And we're all in this together.
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