“Does it get easier?”

“No. You just get better at it.” -The Good Wife

I spoke with a new Rett mum the other day. When Grace was first diagnosed, no one told me the things I needed to know. I was instantly sucked in by the charities and was only promised a cure, hit up for money, put to work, told that family support was useless and the only thing to focus on was research for a cure. (if that’s bitterness you sense in my words, you would be right…I’m not impressed that this goes on in the lives of newly grieving parents). This stunted my grief and many parents I know say the same. The process of grief which could have taken a few years has taken us twice as long.

Instead, I told this mom things I wish I’d been told:

• That social services won’t tell her she’s entitled to direct payments to pay for help taking care of her daughter, but she can make it happen (and I told her how)
• Giving her meds to achieve things many parents can achieve without them doesn’t make you a failure. That just because most kids can be soothed to sleep by their mummies singing and ours need tranquillisers, we are not bad parents.
• YOU ARE NOT A FAILURE.
• God didn’t see fit to give us special kids. There’s nothing special about us and we are not equipped with some superhuman powers. We need a team to help us raise these girls and there is NOTHING wrong with making use of all of the financial and practical help available to you. No one is meant to have to handle things like this. This level of disability isn’t normal. It’s not doable alone and it’s not supposed to be. And it’s ok to have a tantrum once in a while.

These are things I needed someone to tell me. The practical help I needed. I learned most of this fighting the system and learning the hard way. Grace was denied disability living allowance THREE TIMES before they realised that Rett syndrome is, indeed, rather debilitating.

When I tell people Grace has Rett they say “the swearing thing?” To that, I say, “Not tourettes. Rett. Rett makes the parents swear.” Rett syndrome is bullshit. No, you’re not imaging it…this wasn’t supposed to happen to you. It’s ok to feel sorry for yourself. Rett syndrome doesn’t get easier. You just get better at it. And it’s a painful realisation, but one that can be the start of healing. Or, at least…fortifying.

If you’re the mom who gave birth to that kiddo, remember how you thought somewhere in the middle of those contractions that you were gonna die. That there is no way a whole human being can come out of you but what did you do? Steel yourself. Breathe. Push. Claw someone’s hand. Accept help (drugs!) and you did it. The superhuman part is over. Now, we just have to raise ’em.