The beginning of our undiagnosed journey

Laura Rutherford shares her experience navigating the early days, having a child who was atypical and what it’s like to live with the unknown.

I was thinking recently about parents beginning this journey and how much I wish I could ease their worry, knowing full well it wouldn’t be possible, even if I tried.

When I first suspected Brody was developing atypically, I was terrified. I found myself constantly bargaining with a god I didn’t believe in and wishing on dandelions in an obsessive way.

The thing with global developmental delay (GDD) is there is always the hope that your child will be the one who catches up. It’s unfair because there are no answers, prognosis or glimpse of what might or might not be.

I’d watch kids do simple things, and those things would seem epic.
Every time someone had a baby I’d wonder if the child would speak before my son. I stopped when I realised they always would.
I’d feel both insane and hopeful when people would tell me stories about “so-and-so’s” kid who all of a sudden just started X,Y,Z.
I’d obsessively look at developmental delay groups and when I’d see a post where a commenter said their child didn’t catch up, I knew deep down I’d be this person too.
I hated baby and toddler classes and wish I’d stopped them sooner. I was envious of normality and consumed with sadness and guilt. I hate that there are people feeling this way right now a stuck in a shit limbo of unknowns.
Without a doubt, life becomes trickier as Brody gets heavier and older. But nothing was as hard as the beginning when his future – and ours – was not as we planned or hoped for.
If you know someone with a young child who is delayed or if you have a child who is delayed – the truth is they might not catch up. There are things that might not ever happen. And that is a hard reality to get your head around. A label of GDD gives you nothing but unknowns.

If you are at the beginning of this journey, feeling scared, isolated, unheard, and unseen, you are not weak or broken - you are grieving the loss of certainty.

This part of it all strips you raw in a way nothing else does. Over time, the fear changes shape, and you learn to carry the unknowns, even when they are heavy.
It’s not the life you imagined, but it’s the life you learn to live. And you are not alone, even when it feels unbearably lonely.

This piece was written by Laura Rutherford on her Facebook page: Brody, Me and GDD. Follow and read more from Laura @brodymeandgdd.