I like a challenge. Sometimes I need a challenge, or at least a goal. His first week was easy because I had a purpose: to feed him 30 mls of milk every three hours, day and night. So I breastfed and finger-fed and syringe-fed and bottle-fed and formula-fed and wrote it all down on a chart, and in between I pumped my breasts with the oh-so-slow hospital breast pump, and between that I changed nappies and smiled for visitors and showed my chart to the paediatrician and undressed him for weighings and temperature-takings, and if there was any time left I slept, until they agreed that he wouldn’t need a naso-gastric tube and we could take him home.
Within a few hours of getting home the midwife, in a panic, set us the new, ever-constant goal of keeping his temperature up, so I dressed him up in layers and blankets and made hot water bottles and got a digital thermometer and made another chart and organised the loan of a heated mattress from the neonatal ward, and held him close against my skin until they agreed that we could keep him at home.
And then … what? Early intervention, they all said. The first three years of a child’s life are when the brain is most plastic, new neural connections can be made, the foundations for all future learning are laid. Stimulate him, they said: his sight, his hearing, his touch, his taste, his communication, his movement. But it’s all very open-ended. There’s no known goal, no set program, no schedule, just “as much as you can” so that he can develop as much as he can.
On the one hand it’s a constant pressure, another reason to feel guilty. Am I doing enough? Every minute I’m not playing with him, talking to him, moving him, showing him things is another neural connection not made, another skill slipping out of his future grasp, another day closer to that three-year deadline. On the other, it’s easy to let minutes, hours, days slip by without really doing anything instructive. He doesn’t clamour for attention, doesn’t get bored, and he does tire easily. I understand where Saira Shah, author of The Mouseproof Kitchen, is coming from when she says in an interview about her profoundly disabled and possibly life-limited daughter, “what’s the point of giving her therapy which would give her 20 per cent more muscle tone when she’s 50? This is what she loves … being held, being rocked … I don’t see why she can’t have a life where she is just cuddled.”
In many ways we are lucky that we had an early diagnosis of his condition. Many parents of similar children would, at ten months, still be fighting for recognition that there was anything wrong. We have no such excuse not to spend all our waking hours doing muscle exercises, waving flashing lights from side to side, supporting him on his tummy, crinkling space blankets under his fingers and brushing paintbrushes over his toes. Yet, would that help him to maximise his potential, or would it stretch him beyond what he is ever going to be capable of?
Last week we had our regular meeting with the neurology consultant. As usual, he was “delighted” with our boy. As usual, I asked whether he could make any guesses as to his future abilities or needs. As usual, he shook his head, talked about “developmental clocks” and the impossibility of telling at what rate this one might be ticking. Then he made a throwaway comment: “If he’s not sitting by the age of two, it’s very unlikely that he will walk.” And there I found it, my new challenge. I might have frittered away the first ten months of his life with cuddles, but I can spend the rest of these two years teaching him to sit.
Is this a good thing? Am I setting myself (and him) up to fail? Am I going to waste the next 14 months exhausting him with futile exercises in pursuit of something that was never within his grasp, when I could have been holding him tight? I hope not, firstly because I simply don’t have time to pursue this goal at all times; it will have to be squeezed in between nursery runs, music classes, hanging out the laundry and cooking the dinner (there’s that guilt again). But also because I hope I can combine teaching him with holding him. The first step to sitting is to get him holding his head up, strengthen his neck through spending time on his front. And the easiest way to do this is to lie him on his tummy on mine. Skin-to-skin, heart-to-heart, looking into each other’s eyes and building not only his strength but his confidence in our unfailing love and support. I hope this challenge will be easier met because he knows we’re doing it together.