When you have a baby, milestones stretch out ahead of you.
Smiling. Laughing. Rolling. Sitting up. Crawling. Talking. Walking – an endless list to mark each moment that will never be recaptured, each step on the path to becoming a person.
They can be so, so bittersweet.
When you are the parent of a child with special needs they can be even more painful – a constant reminder of what is not, of what may never be.
My gorgeous boy did not roll when other babies did. He did not crawl. He finally walked at twenty months. He was past two when he could wave and point. He did not play or imagine like other toddlers. For many months I compared my child with other people’s, listened to other parents discuss milestones and I felt fear – and jealousy.
Today, my boy is very nearly four and there is much that an ‘average’ four year-old can do that he is still learning slowly, carefully, and painfully. I have watched his first Sports Day from the sidelines and felt both ecstasy and despair – at what others do so easily, at what he never gives up on, however far behind.
Every day, twice a day, we help him to get dressed and undressed and we stretch him, each time, to do something himself. Until recently, he has always needed help for every item of clothing. Sometimes it is very difficult – the pressure of even trying to lift his t-shirt, pull down his trousers is so difficult, so frustrating that he sobs. And so we abandon the idea…. and try again another day.
It is 7.10 pm. Littlest is out of the bath and is giggling in her towel and trying to escape, while I try to contain and dress her. My gorgeous boy has climbed the stairs with help, using his hands on the steps above, and now daddy is helping him undress. He is down to just his pull-ups and socks.
“Now E, can you take off your socks?”
He stares down at his foot and steadies himself between his father’s legs, concentrating acutely. He lifts his own leg, grabbing to try to get the sock – but he misses and the leg falls to the floor.
I am drying his baby sister, only glancing over briefly, as if nothing of import is happening.
He tries again, and this time grabs the foot.
“Now remember, get the edge and pull it over the heel.”
He pulls at the sock and manages to get his finger under the edge.
“Oh well done sweetheart. Now you just have to pull.” He does. But it is the wrong way – outwards instead of down. His hand slips.
The leg, once more, falls to the ground.
His face scrunches up and I hold my breath. He reaches for the foot again.
“Ok E now remember – pull down.” His father shows him by pretending to pull the sock down.
Pulling the edge again, the sock begins to come over the heel. He is concentrating so carefully, his whole body poised, gaze fixed, brow furrowed – like a man on a wire.
His hand slips for a final time and I do not dare to exhale. I wait for the sobs. I brace myself for anger, for a meltdown, prepare to use all I can to calm him until it passes. But it is quiet.
“That’s ok E, do you want me to help you?”
“No, I can try again. You have to keep on trying, Daddy, if you can’t do it the first time!”
He uses those words – the ones we cheerfully sing many times a day – back at us. And he grabs his sock and puuullllls.
And off it comes.
I break into applause. I cannot help myself. Daddy and I are cheering and I must go over to hug him, to ruffle his hair, to tell him that he is amazing, my special boy, so brave and patient and wonderful for trying again. Oh my beautiful, beautiful boy – you tried again and look! You have done it! You can do anything, if you try again.
And he beams back at me, as if he has achieved his life’s dream. He gets into his bath, and later, to bed. I kiss him goodnight, still grinning like a lottery winner.
And that grin did not leave me for the whole evening. Even now, days later, the memory will come to me and I am overwhelmed with joy. It is a little jewel – a nugget of golden time to keep and treasure and replay in my mind, whenever things seem bleak and difficult.
My boy cannot do some of the things his peers can do. He did not hit many of his milestones at the prescribed time. But he makes his own – and they are some of the brightest spots of my existence.
For more post like this, you may like The Best Day.