Grace for Rett » Grace's Life with Rett Syndrome

3 things I wish I knew upon Rett diagnosis

Hi all and happy awareness month (it’s starting to feel like a holiday).

7 years ago this month, my husband returned from a trip to Nigeria and as soon as we met him on the train platform, his first words were “what’s wrong with Grace?” Rett syndrome for Grace wasn’t a slow progression. It wasn’t the gentle tearing away of all she knew like it is for some girls.

Grace was ‘strange’ from birth. She was extremely placid. Never cried. Slept all night. Just sat there smiling away. Her hands doing ‘retty things’ which I can only see when I watch those videos with rettrospect. At just two, three, four months…people would cock their heads and look as though to say “she doesn’t seem normal”. She never bore weight on her legs. Never learned to sit up or speak. Yet overnight, she changed. Rett hit her with a vengeance and I sat up every night for 6 weeks waiting for that diagnosis. Crying, holding her in the rocking chair.

Note: A Rett diagnosis is a surefire way to lose all your baby weight.

While I have never stopped grieving, it didn’t take very long (a couple years maybe) for this life to seem completely normal. To find that magical “new normal” that I read about. To find medications and surgeries and ambulance trips…well…normal. I remember this one time she was getting an ambulance after a seizure and I did my morning makeup on the way. “You seem pretty laid back about this so we’re taking that as a good sign” he said. “Yea she’s fine – this is just a technicality”. And it was. And she was out within a couple hours, smiling and rather proud at securing herself a day off from school.

There are a few things I wish someone told me when she was diagnosed. So many things I learned along the way.

1. Edit Your Team

There will be people who come into your daughter’s life who don’t align with your goals for her. We once had a speech therapist who went blank whenever I referenced the fact that Grace wasn’t “cognitively delayed” but, rather, just had a processing disability. In fact, there was a point where she said that we would just have to agree to disagree. Bye, Felicia.

In “team around the child” meetings, I regularly coach all members of Team Grace that “to be on Grace’s team, you must presume competence.” End of. Anyone not on board with Grace’s abilities or potential doesn’t stay on Team Grace.

Another reason you might want to cull the team around you is that you might not find so many professionals manageable at first and you should take control if you feel out of control of your/her own destiny. I was trying to come to terms with the diagnosis and my house was filled with people. I felt pressured to suddenly become a therapist, a doctor, a specialist overnight. I was only just trying to understand what Rett syndrome was and yet I had professionals throwing terms and homework at me which just wasn’t manageable. My pile of paperwork, assessments, logs to keep grew every day. You know how when you’re in school, each teacher gives you “just a little homework” but it keeps you up till midnight? I had to let some people go. When your daughter gets older, special school will be a big help. Grace now meet her therapists and all that happens in school. At home, I’m just mom which is enough to try to be, even on the best day.

2. Therapy

A few years in, I went to a family conference. The majority of parents I met took their girls to daily or weekly therapy sessions -horse therapy, music therapy, physical therapy- left me judging myself to be inadequate and lazy. At one point I ended up in the hotel room bawling my eyes out and my friend said something that totally set me free: “Look at all those girls. Are they doing any better than Grace, even with all that therapy? No. You’re doing fine.” And that was that. And I never beat myself up about it again.

3. You

Now for a different type of therapy. I’m 7 years into this diagnosis and just realised that I need therapy. Bad. I had to be “the strong one” (a role I imposed on myself) all these years.

When everyone is telling you you’re made of steel, how do you say “actually, I’m falling apart”. So I turned off the waterworks, hardened my heart and assumed the position of stalwart steely supermom who you better not cross when it comes to her daughter. I assumed the persona of charity woman. Activist. Genetic know-it-all. Rett expert extraordinaire. Faux doctor. Little did I know I was destroying my marriage and myself in the process. I turned my face away from anyone who held me account for my actions and just forged ahead like a woman possessed and no one dared get in my way.

Until I hit a brick wall and had a mirror held to my face and realised I was engaged in a vicious cycle of grief, denial and shame. I had been to a variety of psychotherapists in my adult life (which my friends say is “so American” of me) to try to unpack the things I thought were wrong with me. My addiction to work, my desire to be thought of as amazing at all costs, etc. But I’ve come to realise that these things are just symptoms and I wasted great amounts of money and years skirting around the cause, focusing on the symptoms. My illness is that my kid has Rett syndrome and I have never properly grieved. I mean…I’ve been grieving. Boy, have I been grieving. But I hadn’t grieved.

I heard about this thing once called ‘perpetual grief’. That is, when something happens but doesn’t really end. Unlike loss which has some sort of conclusion, a diagnosis you live with long term can cause one to perpetually grieve and never come to a conclusion.

All of that depressing shit to say:

  • focus on you
  • don’t wait until you’re desperate for it
  • and then keep doing it even once you think you’re ‘ok’

Those are three themes which stood out to me when I decided I wanted to write about things I wish I knew sooner.

If you’re facing a new diagnosis, I wish you all the best in your experience and, as always, want to remind you that:

  • Time heals
  • Someday this stage will feel like another lifetime ago

Much love.

Metaphors for life

“I have only one thing to do and that’s to be the wave that I am and then sink back into the ocean.” -Fiona Apple

This one day about 10 months ago…I was in Lulworth Cove. It was an extremely cold, windy day. Very few tourists and they’re usually there no matter the season. I wandered along the shore to this cave. It was December and about 2*. I threw off my coat and marched right into the waves. The sea was violent that day. It was crashing against the cliffs so hard that the peaks of the waves just sort of…shattered into atoms. I forged ahead, battered by the waves, thrown to the stony ground, tumbled about under the fury. Sea water up my nose. It felt like the sea was laughing at me “little girl, who do you think you are?” I got back up again and I pushed against those waves. And then I marched back to the cave, put on my coat and went home.

Rett syndrome on TBN


“To beg God for healing is to say we have more compassion than He does.”

The hubs and I were on TBN Meets with our friend Leon Schoeman talking about a variety of things including how we come to terms with disability and our Christian faith. Oh, and if disability doesn’t float yer boat, Steven talks about beating up choir boys, getting struck by lightening and other shenanigans.

New fun and games // precocious puberty

60116933Well this explains a lot.

About a year ago we first started noticing signs of puberty in Grace. Ya know…hair down there. Underarm issues. Little booblets (not a technical term). But honestly, the most perplexing thing has been the emotions. Ooooh the emotions. Lots of crying at night for no known reason. Still don’t really know, but I do suspect perhaps that’s part of this?

To find the cold hard facts, Grace needed a blood test, a wrist x-ray (to measure her bone age) and an ultrasound of her ovaries. All of these show that her ‘age’ is 10 although she’s 7 which means she’s the age I was when I started my period (yayy for TMI, right?)

Next step? Put those hormones on lockdown. Waiting for a referral to the right doc for that part. Fun, fun.

Grace got her feelings hurt (and I was jumping for joy)

Screen Shot 2016-08-14 at 21.13.45

Grace has the most spectacular carer/nanny, Anna. She takes Grace to her church on Sundays and recently, came back with this little story of triumph for us. It’s bittersweet and you’ll see why…

Grace saw a little friend at church who was in her class at school last year. He (innocently) said to her something along the lines of, “Grace, I hope you can be normal someday like other kids…” She looked him straight in the eye and her lip began to quiver, and tears began to flow.

If you know Grace, you’ll know that this just does. not. happen. She’s the happiest kid. EVER. She smiles while getting jabbed by nurses looking for veins. Pretty much nothing upsets her – she’s calm and collected. It was clear that:

  1. She understood what he said 100%
  2. It hurt her feelings
  3. She expressed and communicated it

It can be hard to keep the faith sometimes. I require that in order to be on Team Grace, you MUST “presume competence”. You are not allowed to believe that she’s mentally retarded, cognitively delayed or any combination of the two. So when things like this happen, I jump for joy at yet one more reminder, proof even, that

Grace is there.

Grace understands everything.

Grace is competent.

Susy Matthews - August 14, 2016 - 8:27 pm

Go Team Grace. We adore you. X

Duncan Millar - August 14, 2016 - 8:40 pm

Grace is awesome and I believe, but you know that 😉

Abigail Jones DH - August 14, 2016 - 9:00 pm

We require the same on Team Esmé. Love you Grace x

Geraldine Walker - August 14, 2016 - 9:04 pm

Rett girls are the most happiest! I truely believe they here and understand everything, just have the inability to communicate back…unless you know them! There are subtle signs that show you they are truely inspirational! You have a beautiful daughter!!! God bless her xx

Michelle Landon - August 15, 2016 - 1:54 am

I am a caregiver for a friend’s daughter that has Rett Syndrome. Ashley is a little angel, and I know when I look in those beautiful eyes that she understands everything. I have taken care of her since 2009, we know each other well and Ashley knows how to make herself known. I love her like she was my own. I pray for a cure for these beautiful girls.

Rachael West - August 15, 2016 - 7:45 am

She is such a gorgeous girl.

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