Processing...

...this will take time

It has a label.

Specific Learning Disorder in the areas of Reading (Dyslexia), Written Expression (Dysgraphia), and Mathematics (Dyscalculia), along with secondary attentional difficulties.

Four years ago, another label: Brachyolmia type IV. An obscure skeletal dysplasia, with not much documentation around it. Nothing overly dramatic. “The best kind of bad news,” a friend said. But a simple verdict – she will remain short, we can’t say much else. Nothing we can do about it. We still tried. Six months of growth hormone therapy. No effect. So we stopped. She will grow tall in personality, of that I have no doubt.

And now this. But this time, no dearth of documentation, opinions, strategies. But the outcome would not be a ‘treatment’ but a ‘modification’. Whatever that means. I know there are worse things to happen to a child than SLD, but this is our reality right now, and maybe it’s just an initial reaction, maybe it’s an overreaction, or maybe it’s just the right reaction. The fact is that it is what it is and it needs to be dealt with.

When you open a report where your daughter’s scores are low or very low at worst or low average at best, you realise your heart’s ability to plummet. It’s a report for which she had to sit for about 5 hours broken into 3 sessions. We asked for this assessment because we obviously knew everything wasn’t right. What we have now is a clear direction.

The next three months will be critical in creating strategies and systems to help us and support her. It will be a long battle ahead and after my half a day pity party, I’ve adjusted my sails to go where the wind takes us.

In these two days—really just one and a half—I’ve been talking to people, reading up, re-reading the report, and trying to process it. Writing this post is also a step in that. Some things have stood out:

It’s not about me: The mind’s notorious for hijacking a situation and making it something it’s not. In these past 30-odd hours, the tendency to make this about myself has been so high that pushing it down has taken physical energy. The uphill task ahead, the work that needs to be done, the money it will need…it’s easy to go down these roads only thinking about my journey, my struggles. This post is also a bit of that. One part of me wants to keep it private, not press Publish. But I will do that anyway, because I’m also using the post to a) raise awareness, and b) to hold myself publicly accountable for not making this about me.

The fact is, my 8yo has been dealing with this for the past 5 years, before anyone gave it a name. She has been braving it with no understanding of what’s ‘wrong’ with her. She has been braving that, and the fact that she’s shorter than her peers, that she’s not as articulate, that she’s adopted and doesn’t have a dad. What has she chosen to focus on? Dogs. Loving them, learning about them, watching TV programmes about them, talking about them. Of course, there’s other stuff too, like toys and junk food and naughtiness and iPad and more. She figured out her own coping mechanisms.

I’m surrounded with love and wisdom: My parents have earned a LOT of wealth in their lifetimes. It’s the wealth of goodwill. And I’ve inherited it. I am surrounded with friends and family and even acquaintances wanting to bat for us. Yesterday, someone I’ve recently come to know through work made a point of calling me and sharing her wisdom. There’s something she said that I am going to hold very close to me: “this is where your daughter’s journey as a unique person begins.” My cousin said, “leave the technicalities to the professionals, you just focus on making yourself a safe space for her.” My friend landed home at 10:30 pm and stayed with me till almost 1 (making mom retrospectively worried about her safety) just to be with me. All my friends and family are literally at hand with their support—for Bela, and for mom and me.

It’s all about the mindset: I know that our biggest fight is going to be on the mindset front. I messaged my friend and first coach, Kristen Lisanti, that after the first round of ‘why her, why me' (I say first because I know it won’t go away that easily), a concept she had introduced me to played like a mantra at the back of my mind: change happens through me, not to me. This needs to empower me—and by association, Bela and mom. We have to look ahead and focus on what we can control, rather than what we can’t. Bela will be taking cues from us. And this is how we need to show up for her.

I am going to end by saying, to whoever reads this: we start with a utopian idea of parenthood, thinking we have some sort of right to raise perfect kids, who we turn into a personification of our dreams and aspirations, feed the ‘right’ inputs and resources into, and then reap when the time comes. Instead, our children are, like us, individuals. They come with their own path, if not destiny, and we just walk beside them on it, holding their hand when they need us to. They don’t need us to create or even the path. They just want the hand to be there, if and when they reach out for it.