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13/02/2019

Ten Things

By Rachael Stevenson

I had only just turned twenty when I gave birth to my daughter with Rett Syndrome. I frequently felt inadequate. I didn’t know that inadequacy was something that affects mothers of all ages. I thought it was just a young mother thing.

It’s also a mother of a disabled child thing. It’s impossible not to feel at least somewhat inadequate when your child’s needs are so high. Looking after them and managing all the related co-ordination and bureaucracy which goes hand in hand with it is not a one person job and so it makes sense that one person is not adequately equipped to manage this role.

I saw a picture of two-year-old Amber and I this week though that made me want to go back and shake myself. And give myself a big hug. If I could share what I know now, here’s what I’d say:

Her teeth are going to have to take a lot, with all the grinding and hyperventilating. Getting the sealants painted on them age eight is one of the best things you’ll ever do. Don’t think twice about it, whether it takes a general anaesthetic or not. Trust yourself. She’s yours and you know what’s right for her.

If you’re feeling overwhelmed, feel free to unplug the phone. One day you will yank the house phone out of the wall at dinner and not replace it for three years. It will be a while until there are iPhones. They will make your life easier and harder in ways you cannot fully grasp now but they can be silenced just the same.

Give her some space. You will never do this until you have to, until one day you leave her alone on the toilet age ten, entwined in Octopus arms, to attend to one of your other children having a crisis and return to a delighted girl and a task thoroughly completed. Apparently, everyone needs privacy from time to time.

Don’t treat your other children like other children. Just treat them like children. They are not an addendum to the Amber crisis. They are just small humans, each at the centre of their own existence. Let them own it, rather than being an appendage to therapy, communication, fundraising, caring or whatever ‘other’ role which can be applied to them in relation to their sibling.

Always, always prioritise dignity. She can’t speak but she can hear and see. Once she gets past four, don’t talk about her bowel movements in front of her and anyone else, unless you’d be willing to talk about your own. Nappies can become pads. Changing can become personal care. All of it can become private. Teaching her this is the situation at an early age is not just respectful, it’s protective. And you’re right to be fussy about her clothes being cool and whether she smells nice or if she has food around her mouth. As she gets older and less cute, these things matter more and more. Set high standards from an early age. She has enough going against her.

Gastrostomies are good. You’ll think it’s a slippery slope, another negative to accept, it isn’t. It will give her strength, resilience and some flesh on her bones and it will give you some power to help her, some peace and a window to pop food, fluids and meds in as and when she is unwell. Which she will be.

Pacing is your friend. You are in this for the long haul. There will never be a time when you have been to every appointment, made every phone call, won every battle. Space things out. One appointment a week is reasonable. Table the next one until the week after. Phone calls-one a day max. Spread them out. And when you have appointments, try not to do them on the fly. Fit other nicer things around them, don’t rush from one stressful thing to the other.

Permission to put yourself first. This needs no explanation. Just whenever you feel guilty about buying, doing, saying or being anything that isn’t related to her, speak this truth. It is the truth. Because you are the only thing holding her up and you matter more than you know.

Hope floats. In amongst all the s**t, yes it does. Hold onto it in the dark days. There will be many more reasons to be hopeful in the days to come. Just because you don’t know what they are yet, doesn’t mean they don’t exist.

Never ever give up on her or on yourself. And if you ever feel like it, watch this. It will keep you going in the early days of Reverse Rett when there is no one to tell you that any of it will ever work out. With all you have ahead of you, you need to know; falling is not what matters. Just have the courage to get back up.

Originally posted on Life, Rett, Etc