Peering Out From Beneath The Sand

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There is this age old myth that ostriches bury their heads in the sand at the first sign of danger so as to appear invisible, believing that if they can’t see a predator, they can’t be seen. I often feel like I am burying my head in the sand when it comes to Angelman Syndrome. See, we have this diagnosis that hovers above our little lad’s head that promises all these restrictions upon his life. It often feels like a predator, waiting to get started on him. Right now at 15 months old he appears ‘normal’ at first. Small for his age, yes. Quiet, yes. Super-smiley, yes. Not-yet-mobile, yes. But there is nothing really strikingly obvious that sets him apart from the rest of the baby crowd. He plays with baby toys, wears nappies, sits in a high chair, is pushed in a buggy, drinks from a bottle, sucks a dummy, sleeps in a cot, is carried around everywhere. In fact, if you didn’t know him and walked past him in the street, you would assume he is a perfectly normal…..let’s say, 8 month old. There are days when I look at him and imagine he doesn’t have Angelman Syndrome. 

*I have to interrupt the flow here and let you know that as I write this on my Mac in ’Notes’, it does not like the word Angelman and keeps changing it to Angolan Syndrome.*

This happens mostly when he is asleep, in his cot, and I peer over him and just let the peaceful, quiet, steady breathing be all that owns him. All I see is a baby. Right now, that’s what he is. 

And then there is the jolt back to reality. I peruse Angelman forums, Facebook groups and the tinterweb and am reminded of all that awaits us. I read of parents who have lost their angels to multiple illnesses related to the syndrome, to seizures and accidents. I see photos of cage-like beds that keep angels safe at night. I hear about bedroom doors locked to keep angels from harming themselves in the night when they wander around a sleeping house, unable to find sleep themselves. I see teenage angels wearing bibs and playing with baby toys. 

I do not want to see this. I do not want to think about this. I do not want this hovering above my baby’s head. Beneath the sand is where I need to be right now. It’s safe under the sand. I know what’s there, I can see just enough to know what’s right in front of me. Today. This minute, this hour, this morning. That, I can cope with.  

Ostriches do put their heads in the sand. In fact, they do this several times a day. However, they most certainly do not bury their heads in the sand to avoid being seen by a predator. In fact, ostriches, with their acute hearing and eyesight, can sense a predator a mile off and can outrun most of their predators at speeds of 43 mph. There’s no hiding from danger for ostriches but there is definite sand gazing. See, ostriches do something pretty beautiful as a species. They have these things called communal nests. Basically, all the girls get together and lay their eggs in one big pit in the sand and keep an eye on the eggs, taking it in turns to watch over them and turn them several times a day. 

When we see an ostrich with its head in the sand, it isn’t hiding from danger, it’s protecting its most loved and most prized possessions. And it’s doing it as a community. Taking care together to protect and nurture these tiny, vulnerable, precious things. 

Recently we have become friends with a beautiful family. We like to call them our Angel Family. The only thing we had in common initially was the fact that we both have children with Angelman Syndrome. Our angel is 15 months old, theirs is 5 years old. With exactly the same diagnosis, the same promises and the same restrictions hovering above his head, I can honestly say, he is an absolute joy and a pleasure to be around and just thinking about him makes me smile. He is a child who I need to see. They are a family who I need to be around. They are exactly the reality-jolt I need. 5 years on and they have a beautiful (and I mean b-e-a-utiful) boy who gives us so much hope and so much promise for the future. Yes he has had his fair share of hospital trips and seizures, he has a bed that keeps him safe (though most definitely not a cage) and a wheelchair for his tired legs but he is fully mobile, has some super-cool toys and a bedroom with an en-suite (darling). Now how many 5 year old boys get to have that? But as a family, they do not let Angelman Syndrome own them. It is a part of their lives, but their lives go on. With an Angelman Syndrome-free toddler and another baby on the way, they have looked at the predator and ran a mile, undefeated. 

Perhaps burying my head in the sand is okay for now. I am not hiding from the predator, instead I am keeping an eye on a beautiful, tiny, vulnerable, precious, prized possession. I am not doing it alone. And that feels good. We shall keep an eye on our eggs, communally. And we’ll look at the next thing when we need to. Until then, sand gazing is just fine. 

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