Damaged Goods

04/09/2015 12:39 pm ET | Updated Jun 09, 2015

Sometimes, in trying to explain the impact that Rett Syndrome has had on our lives, I have referred to myself and my husband as "damaged goods." People don't respond to this very well. In general, I think they see it as some kind of self-deprecation or an overly negative view of my life. To be honest, even without Rett Syndrome, I would probably still think it's a valid description; after all, we are both heading rapidly towards 40 and have inevitably had our share of "damage" along the way: broken hearts, break ups, lost loved ones, rejections: if you make it to thirty-something without some baggage and damage (also known as experience), then you're probably, well, in need of therapy!

The damage I refer to, though, is not those inevitable, human scars left by 37 years of living, but the invisible impact of Rett, the ways it has changed who we are and how we look at the world, even the world which others might think is unrelated to Rett syndrome. Human beings (and I generalize here) have a wonderful capacity to function in a state of ignorant bliss as long as the world around allows them to: if we don't have to deal with something, we generally don't. That wonderful state of "it can't happen to me" is hard to reclaim once "it" has. When the odds of something are one in 10,000, only the pessimist would assume that their child will be that one. We didn't, why would we? But when you get those odds once, it becomes hard to shake the idea that it could happen again. If we're not, after all, immune, what else can attack us?

Rightly or wrongly, this thinking permeates everything that comes after. In many ways, it can be a positive lesson: don't take things for granted, celebrate what you have now, find joy in the tiniest of steps. But it is in an incredibly fine line between the positive life lessons and the damage: a fear of celebrating the good things in case they are taken away; a tendency to imagine worst case scenarios almost constantly; a terror of allowing yourself to relax, even for a second, because this will be the exact moment when the worst happens.

My eldest son, with whom I was four months pregnant when Hannah was diagnosed, got Norovirus when he was nine months old and had just started crawling. He was dehydrated and weak and was admitted to hospital, connected to a drip and put on an oxygen machine. As they fed the tube into his nose and he barely had the strength to cry, I could feel all my worst fears creeping in. The damage was clear. The doctors and nurses clearly thought I was paranoid; they had a ward full of kids with Noro and they confidently assured me that he would get better, they all do. But the damaged voice in my head was saying "sometimes kids don't get better, my son might be that one who doesn't." Lying next to him in our sterile room, watching the child I had celebrated only days before sitting and crawling, playing and babbling, now unable even to sit up or roll over on his own, how could I not feel like history was repeating itself?

The same thing happened when our second son was only three weeks old. Not Noro this time, but bronchilitis: an ambulance, an oxygen mask, a nebuliser, a tiny chest working overtime, a tearful mother and a host of nurses who clearly thought my tears were an over-reaction. They referred to the 'bronchi' ward and called my son a 'bronchi ' baby, proving to me that this was far from uncommon and barely cause for crying. But every time they told me not to worry, 'he'll be fine', the voices of professionals telling me that Hannah would be fine replayed through my head. 'She'll be okay, she'll catch up', they said. She isn't, and she won't.

Of course, on these particular occasions, my sons have turned out to be OK. They have got better, as the professionals said they would, they have returned to their crawling, babbling, independent breathing states, and then to standing, walking, running, climbing and even miraculous talking. Tiny steps and celebrations. Yet even just writing this makes me nervous. The fear of enjoying, of relaxing, of taking anything at all for granted, is always there. It's not just that anything could happen tomorrow, it's that it might already have happened, I just might not know it yet. Hannah has had Rett Syndrome since she was still growing in my womb, but it took three years and six wonderful months of ignorance before we knew. The world that we have come to inhabit since then has made me aware of so many conditions and possibilities, so many more dangers than I had ever dreamed possible, that I feel it would be presumptuous to declare my children are 'fine'. I add the disclaimer: 'As far as I know'.

I imagine worst case scenarios constantly. I can see them happening right before me. Often, they're based on the consequences of one random decision I have made, like choosing a particular route to drive, or leaving five minutes later than planned, or giving them that last grape. I take 10 or 20 or 500 steps forward in my mind and reach some awful conclusion which could all have been avoided had I just done one thing differently. Random moments and awful consequences: I'm no psychologist but it's not hard to see where these fears come from.

I'm guessing you might be starting to think that a psychologist (or medication) is precisely what I need. I'm sure someone who did would say this too, but I don't think I do. Yes, I do have these thoughts, these fears, these misgivings in my head all the time. But I also know that they cannot be fears to be lived by, either emotionally or practically. I cannot torture myself with impossible what ifs, nor can I subject my children to a life wrapped in cotton wool or endless trips to the ER for every sneeze or scrape.

In fact, in many ways, Rett has made me a parent who is simultaneously over protective and laid back: I worry endlessly about my children and the possibilities of tragedy around every corner, and yet at the same time the practicalities of daily life mean I am forced to stand back from my boys and let them flirt with danger far more than my heart would wish. Hannah is a 45 kilo 8 year old with highly limited mobility, zero awareness of danger and the need for almost constant attention: my hands and eyes (and entire body weight) are generally right behind her, which leaves two mischievous boys free to explore. In many respects I need them to be more independent than their peers, and so I must take the leap of faith to allow them to be.

Parenting of any child, I suppose, is always about taking leaps of faith - holding on and letting go at the same time, stifling your own fears so that they can be fearless, at least for a while. I don't know (and will never know) what kind of a parent I would have been had Rett Syndrome not stormed in and done its damage, but I hope that I can still be the kind of parent who tells her children that the storm is nothing to worry about, and puts the minute chances of falling trees or lightning bolts to one side, so that she can dance with them in the pouring rain.