You might have noticed I’ve been a bit quiet. I haven’t written in almost 2 weeks. You might not have noticed, this could in fact be the first time you’ve ever seen this blog. I have been quiet but I’m back and my engine is revving. So, where have I been? Here in my house unfortunately, not on a tropical vacation with exotic cocktails and sandy beaches. About 10 days ago I overstretched with the vacuum (I know it’s not cool, but it’s true) and my back went *SNAP*, *CRACKLE*, and *POP*. It’s one of the job hazards when you repeatedly carry and lift a 6-year-old child. The back pain didn’t stop me writing, but the muscle relaxants and painkillers stopped me writing anything worth reading. I’m still all drugged up but something happened yesterday that broke through my mental fuzzies and I have to write this or I’ll end up with high blood pressure as well. So consider this post a quasi-medical and emotionally necessary form of venting.
I’m wide awake
I was in the dark
I was falling hard
With an open heart
I’m wide awake
And now it’s clear to me
That everything you see
Ain’t always what it seems
Yesterday Emlyn had an appointment at the hospital with an Orthopedic Consultant. We’ve been waiting a long time for this appointment, and were eager to hear what the consultant had to say about some issues Emmy’s been having with her feet. In children with Rett Syndrome, low muscle tone from hypotonia is typical and causes all sorts of problems, one of which is pronated feet. Emlyn walks on the soft arch of her feet as opposed to the flat, and has sort of collapsed looking ankles. There have been attempts to correct this with orthotic shoes but there’s been no measurable success; in fact they just continue to get worse and worse. I’ve been bringing this to the attention of her Physiotherapist and her Pediatrician for over 3 years. So yesterday was a big deal, the consultant was going to examine Em’s feet and decisions would be made about splints as well as possible surgery in the future. We were expecting that, and had made peace with it. Here’s what we were not expecting….Emlyn has one leg shorter than the other by over 1 cm. Emlyn has a curve in her spine and possibly displaced hips. I have asked at every appointment that her spine be checked (scoliosis is common in children with Rett) because I thought I could see a slight curve. When I asked yesterday, it took only the briefest of glances for this consultant to see what I saw. So off we went for multiple X-rays, and now we wait for results.
I wish I knew then
What I know now
Wouldn’t give in
Wouldn’t bow down
Gravity hurts
Made it so sweet
Till I woke up on
On the concrete
You know…I’m a bit ticked off really. I’m more than a bit ticked off, and mostly (unfairly I’ve been told) at myself. I knew there was a problem, and I let myself be persuaded against my own better judgement. I assumed I could trust the skill and experience of others. I thought that was their job. I thought they had a superior knowledge of skeletal structure because they’d studied and been trained to spot abnormalities. I will not make that mistake again.
I wish I knew then
What I know now
Wouldn’t dive in
Wouldn’t bow down
Gravity hurts
Made it so sweet
Till I woke up on
On the concrete
I have enormous respect for most of Emlyn’s doctors and therapists…I want to make that clear. I think they are doing the best they can most of the time. I sometimes wish they would value my knowledge of Rett more. I wish they would recognize that I know Emlyn and her abilities better than they do. I really wish there was a special degree for ‘Parent Expert’. But on the whole, I honestly believe they are trying their best. So, why does it feel like someone massively dropped the ball here? Today I don’t really know the answer. I’m just too angry and focused on the mental image of Emmy in a cast from the waist down. I’m too sad, and too frustrated. Maybe I’ve been resting…secure in my confidence that Emmy is doing well and that we can handle whatever comes. Not anymore. Now I’m wide awake.
I’m wide awake.
I’m wide awake.
Very special thanks to my friend Heidi Epstein for recommending this song x
