The other day my mum inadvertently copied me in on an email to one of her friends (come on, we’ve all done it). She wrote that she was worried about me “putting my life on hold” to look after our son. Of course I wrote back immediately telling her not to worry, that I’m busier than ever, happier than ever, that this is in fact giving me a unique opportunity to reconsider my career, etc., etc.
But I think I can understand where she’s coming from. She gave up her career – which she loved – to look after myself and my brother, and to give me the start in life that got me where I am today. She doesn’t want to see me throw all that away to sit at home, my intellect and my prospects slowly withering away, caring for a child with whom I may never even hold a conversation. On the quieter days (when I’m tired, and when it’s just me and him, and in the middle of the night), I find I have similar fears.
Ludicrous fears. We’ve had no crises: no seizures, no choking, no rushes to hospital in the middle of the night. He’s not even slowly declining. It’s just … he’s not really slowly doing anything. When people ask me what kind of care he needs I often find myself saying “oh, it’s just like having a new-born baby.” While all his peers are rolling over and pulling themselves up and burbling and feeding themselves, and even at the special needs groups all the beautiful little Down’s syndrome girls his age are sitting up and laughing and grunting and cooing and reaching out their arms for a cuddle, he remains just a slightly bigger, slightly blonder version of the day he was born.
No-one can tell us how long he could stay that way. We know his development is delayed but – until he hits a few developmental milestones, we can’t know how delayed. He can’t walk until he can sit, can’t sit until he can hold his head up. He can’t talk until he can babble. He can’t even babble. He might remain a new-born baby for two years, ten years, fifty years… A real-life Peter Pan.
The thing about new-borns is they’re designed to consume all their mother’s thoughts, actions and energy. One look into those deep, dark eyes; one brush against his soft, soft hair; one tiny, heart-tugging whimper, and I am evolutionarily hard-wired to drop everything else. I can’t put him down when I’m holding him; can’t tear my eyes away when he’s sleeping; hate to let anyone else feed him, wash him, hold him, let alone care for him for a day. The thought of – whisper it – “respite care” now fills me with horror, though at the start it was one of the things we grasped onto as a ray of hope for the future.
So mum’s right, it does feel as if everything is on hold, in suspended animation. As if he – and me with him, wrapped up in him – has stepped into some kind of bubble, a Narnia-like state where nothing ever changes. Then, when (if) I finally re-connect with the rest of the world, I’ll find everything – my family, friends, career – has moved on without me.
But, there’s one, two-and-a-half-year-old blonde whirlwind that keeps bursting that bubble. She doesn’t know it, but every time she bounces into the room, reaches up for a cuddle, makes another hilarious statement that I’ll later post on Facebook, she reaches through the membrane and hauls me back. She’s the antithesis of her brother: ever-changing, ever-growing, ever-learning. Blink and she’s mastered a new skill, learned a new song, found a new way to fall over… She’s both the reason I must leave the bubble, and my means of escape.
Like every mum, I juggle, I feel guilty, I need five hands and a time machine (or a cleaner), but everyone eventually gets what they need, and mostly what they want. I am learning so much from both my children, every day, in their different ways, that life has never been less on hold.