"Our beautiful innocent trisomy children, living their precious simple lives. They ask for nothing from us, yet we cannot help but give them so much."
Something I've always known about my son, which has recently been pushed to the forefront of my mind, is just how little he asks of me.
In the first 2 years of his life when he was an only child, I noticed this trait of his. I noticed how content he always seemed to be when left to himself. How he only seemed distressed when in pain, or in need of medical care. Most of the time, all he needed was his dragon dummy, and one or two toys to quite happily make it through a whole day.
Of course, from time to time he'd cry out for attention. He'd lie in his bed and kick up a storm.. near silently crying for someone to give him what he needed.. though I'm sure he didnt know what it was... just that something was amiss. Thankfully, daddy knew exactly what he needed... and was by his side in a few moments to give it to him.
However, the vast majority of his time would be happily spent occupying himself with whatever he found around him... toy... towels... plastic bags.... anything he could get his his hands on, his fingers around, or his mouth within licking distance of.
And... that's still the case. At 3 and a half years old... he still begs mum and dad for just as little attention as he always has. One difference these days is that he no longer has any urgent medical needs for us to attend to. He's quite healthy.. for a trisomy child. He's doing quite well.. and needs only the routine care of an infant... so, diaper changes, baths, and feeds.. very little else.
There is however one more difference.... a most important one...
He now has a sister.
His sister is just about 18 months old today... shes an absolute joy, a spark of light that fills any darkness that manages to creep into my mind, a breath of the freshest purest most revitalising air that i'll ever breathe. ... However, for all that I love her, and for all that her brother almost never asks for attention, she absolutely demands it at every turn.
From the instant our eyes lock in the morning, until the moment I lay her down in her mothers arms to sleep... if I'm within arms reach, she'll be reaching for me. Her demand for attention, for affection, for anything I'll give her, is an unrelenting ceaseless barrage of a kind I've found myself not wanting to live without. But also a kind, I've found myself feeling guilty for welcoming.
I feel guilty because, when faced with the demands of both of my children, I invariably end up giving my daughter more attention than my son.. and not just a little more... but an order of magnitude more.
I know it's not a competition. I know, he doesn't even notice. He doesn't mind. And.. he won't hold it against me. He'll smile next time I kiss his cheek. He'll giggle next time I tickle him. but....... I mind. I really mind.
It hurts me when I think back on a day out with them and most of my memories are of my daughter. Her funny faces, sounds, and games... jumping and skipping.. pointing and laughing... new words, new sights and smells and sensations.... And, a few memories of my son... his beaming face when he feels the wind and warm sun on his skin... his laugh when I bounce him on my lap.. or spin him around and around....
but... the vast majority are memories of him lying in his stroller sucking his dummy, or playing with his toys... happy in his little bubble... content to be left alone... comfortable on his own.
I know I shouldn't feel guilty. I should feel proud of him, proud of myself and our family. And I should feel grateful. My son is the happiest and healthiest he's ever been. He's doing better than ever... and he wants for nothing at all. He wouldn't want me to feel guilty... I know he wouldn't.
I guess this is just one thing I can't give him yet.... because, I do feel guilty. And... I think I will for a while more.
So for now... I just want to say to him.... I'm sorry. I love you, and I'm sorry.
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