Rufus is roughly 19 months old. 19 months ago Betsy, who is now 3 and a bit, was also roughly 19 months old.
I say roughly because no-one is really interested in the exact details, and the exact details are not the point. The point isn’t even about how crazy we were to have such a small age gap between our children. It isn’t even about how I couldn’t imagine having a newborn baby now with a 19 month old (let’s face it, the whole thing was a MASSIVE blur). The point is that I was looking through the videos I have on my phone a few days ago and was reminded of what Rufus could be like now if all of his chromosomes were intact.
I have a video on my phone which I have hovered over deleting many times but somehow can’t. It lasts exactly 1:05 minutes long. It’s nothing Facebook-worthy, nothing particularly special but it captures a little moment of calm in the crazy early days of having two under two. Rufus is sleeping peacefully in his Moses basket in the lounge, the TV is hooked up to a YouTube playlist of animated nursery rhymes (something which maintained everyone’s sanity back then) and Twinkle Twinkle Little Star comes on. Betsy, standing in front of the TV, holding ‘Bunny’ (her life-long best friend) begins to twirl around, sing along and then, as toddlers do, loses interest and comes over to her sleeping brother. She looks at him, says ‘Hi Ru’ and looks at me and says, ‘Milk?’ (suggesting perhaps that’s what he needs) then places Bunny on him and begins to stroke him then after a while says, ‘Ru Bunny’. That’s it. Like I said, nothing special.
But right now, it feels like this video couldn’t be more of a kick in the face to remind me of everything Rufus isn’t and everything he can’t (and may never) do.
There’s a split second when the camera captures a tiny sleeping Rufus, who was only days old at the time and I am reminded of the months and months of blissful ignorance before we began to suspect something was wrong.
There’s a toddler who can stand up, on her own two feet, holding on to nothing yet feeling completely at one with herself and gravity.
There’s a toddler who has an attachment to an object which gives her comfort and helps her to sleep through the night.
There’s a toddler who knows and remembers a song, has perfect pitch (yes, I know this is not necessarily a ‘normal’ toddler thing) and can sing along.
There’s a toddler who enjoys spinning around, recognises when she gets dizzy and holds on to the sofa to steady herself.
There’s a toddler who can say her baby brother’s name.
There’s a toddler who knows how to be gentle with a newborn baby and understands that newborn babies need milk.
19 months ago, I took each of these things for granted and probably assumed I would have something similar going on again but with a 3 year old in tow. How wrong.
Rufus, right now, can do none of the above.
Yet there’s so much he can do and there’s so much I am fiercely proud of him for achieving so far. He may not be able to stand, sing, spin around, say his name and interact appropriately with a newborn baby but you should see the effort he puts into reaching for toys. You should see the way he can eat finger food by himself, drink from a sippy cup, put weight through his legs and roll over from front to back and back to front. You should see how excited he gets when he sees someone he loves and reaches out for them. You should see how he has very recently begun putting weight through his arms when we place him in a crawling position. You should see him do a 360 degree bum-shuffle on the carpet.
You should see him smile.
The other day I was thinking about the number of smiles exchanged in our family on any given day. I would put money on our family smiling more than any other family I know right now. There’s something special about Rufus’s condition, Angelman Syndrome, which is the best bit by far. Weirdly, it brings all the smiles out. It’s as though he was born without a joy-filter. It’s like every time he gets even vaguely excited about something, his whole body goes into super-happy mode and his face has to release the biggest smile it possibly can to demonstrate just what he would say, in words, if he could. And because of that, we smile back at him. And the smiles aren’t just big, they’re huge. And because of that, he makes us feel happy.
We have so much we could feel sad about because there’s so much lacking but when there’s a small person who spends most of every day being ridiculously happy in your presence, it’s pretty difficult to feel sad.
I wonder sometimes as I work on his daily physio exercises if his feet will ever know what they need to do when they’re on the ground to help him balance himself. I wonder at mealtimes if there’ll ever be another way for him to tell us he wants more than just banging on the highchair. I wonder in the middle of the night how old he’ll be when I give him his last bottle of milk. I wonder, most days when I get close up to him and whisper ‘Mama’, if I’ll ever hear it back. I don’t wonder so much these days about regular toddler milestones, I just wonder about the next thing for him, to help him, to make his life better, easier, more enjoyable and full.
Looking at that video is bitter-sweet. I love to see my sweet girl just being a care-free little 19 month old toddler and my sweet newborn boy just… sleeping. Yet it’s still a kick in the face.
Like when I see your ten month old effortlessly crawling away from you. Like when I see your one year old eating an apple and you’re not even watching to make sure they’re not choking. Like when you complain about how your toddler is never still. Like when you say there’s never a moment’s peace now your baby has found their voice. Like when you talk about how convenient having a September baby will be when they start school. Like when I see your toddler playing, yes actually playing, with their older sibling. Like when I notice your eleven month old is wearing proper shoes because they’re now officially cruising. Every time, it’s a kick in the face. I’m really happy for you, honestly, I am, but please don’t let me hear you complain about your walking, talking child. Please remember that I long for those normal, boring, everyday things. And I know, ahead of us, there’s a life full of moments like that and the gap will never, ever close, it will only get bigger. I know it will still hurt like hell to watch and listen to stories of your children’s great achievements in life but I will try to celebrate with you, I really will.
As I look at that split second shot of a sleeping Rufus, only days old, I have to remember how helpless, dependent and reliant he was as a newborn baby and how far he’s come. Yes he may not have come as far as Betsy and as far as your babies and toddlers but he’s certainly not the newborn baby he was back then.
I like to imagine him holding on tightly to a secret that only he knew which would be revealed to us 14 months later and change our lives forever. He let us love him, get to know him and cherish him in those 14 months before he became ‘Rufus with Angelman Syndrome’. And I can only imagine what tricks, skills and achievements he’s keeping a secret now. And if he could talk, he’d tell me not to compare, not to worry, not to wish and long for him to be any different… but to be proud.
Be fiercely proud.