After dinner on Sunday:
“You guys are wonderful.”
“Yes … and now we’re also ice-cream-full!”
Next morning:
“Jo, do you really want to wear those clothes to the Lion Park?”
“Why? Do lions like these colours?!”
to say that we’re going camping tomorrow – probably for about 3 months – and I can’t wait!
This post is part of a series. If you want to read in series start here: Digest 2009
In February 2007 Sophie had a couple of massive seizures, which we wrote about at the time. The ER had to administer high dosages of two different anti-convulsants, then kept her under observation while the drugs worked their way out of her system and testing began. She was a year and eight months old and was diagnosed with non-specific epilepsy about a month later.
We spent the remainder of 2007 into 2008 beginning to understand childhood epilepsy, finding a medication level that brought the epilepsy under control and beginning to focus on Sophie’s developmental delays.
Sophie had her last easily recognisable physical seizure in October 2007 but every time she was ill her speech and behaviour would regress and sometimes take a little while to get back to level. As she approached three it seemed to us that developmental delays were becoming clearer, so we sought a developmental assessment.
We were referred to an excellent neurologist who, on observing Sophie, was very concerned for her health and recommended ruling out some nasty conditions before considering conducting a developmental assessment.
The EEG I wrote about in late November 2008 was to rule out Landau-Kleffner Syndrome, in which regressions are increasingly severe and recovery from regressions is incomplete. We’d done some reading and thought it probably wasn’t a clear fit for Sophie’s symptoms, but it was a relief when the EEG excluded it.
What we hadn’t fully appreciated at that stage was that Landau-Kleffner was just the clear-cut outlier in the series of deadly conditions that could fit Sophie’s symptoms. This became clear in March 2009 when Sophie’s neurologist advised us that, having excluded Landau-Kleffner we should investigate mitochondrial disorders. Sophie’s experience was so consistent with a range of mitochondrial disorders, including experiencing effects on multiple systems, that the heavy cost of testing was clearly warranted.
I asked what the potential benefit was – what would a positive test result buy us? The specialist explained how for some conditions supplements can improve quality of life and even slow degeneration.
Ummmm, you mentioned degeneration a minute ago?
Well, some conditions are more aggressively degenerative than others, but given the seriousness of her history at such a young age, there is not a great deal of scope for optimism.
We sat across the table as the history was tied to the observations and the specialist couldn’t make eye contact with us any more and we suddenly had to deal with losing our beautiful little girl.
I can’t adequately express what that’s like, which is probably why I’ve struggled to express much of anything significant in the past year. We did a lot of research and the more we did, the clearer it was that this was a diagnosis that fit like a glove. We were left mourning for Sophie in the midst of ordinary day-to-day-life-with-three-kids.
Sophie underwent a battery of tests (I described the experience in June) for twenty mitochondrial conditions and a large number of ancillary indicators of possible metabolic issues. In South Africa it is currently possible to test genetically for 20 of the hundreds of known mitochondrial disorders, so we were hoping for a diagnosis, which would save Sophie the pain of a long international trip to endure a fresh muscle biopsy to obtain tests for the other known conditions.
There is quite a long processing time on the tests and we had a six to eight week wait for results. The genetic tests were negative, but several of the other tests raised questions. The specialist referred the results to a local metabolic specialist.
While we were waiting for an opinion, Michelle attended a conference on a Friday night and Saturday at a church at N1 city which was led by our old friend Nigel. On the way to the first meeting God spoke clearly to Michelle in the car and said “I’m going to heal Sophie”.
Now whatever you might believe, the moment God intervenes is pivotal. Things change despite themselves and despite you. Basically, God trumps anything else that might be in play.
So the next night Michelle took Sophie along to the evening pre-meeting. Sophie was prayed for and fell into unconsciousness for about 7 minutes. This wasn’t sleep – we know because one of the autistic-type traits Sophie displayed was oral hypersensitivity: she wouldn’t eat food with strange textures, she wouldn’t let you touch inside her mouth, cleaning her teeth was very difficult. She had been complaining of pain in her mouth for a few days and had begun to refuse to eat, so we were planning to taking her to the dentist (she wouldn’t let us look in her mouth and when we’d forcibly held her down we hadn’t found the problem). When she was out cold in Michelle’s lap Michelle opened her mouth and checked out her teeth and gums, eventually finding a ulcer tucked away up above her left eye tooth. Sophie never stirred.
From that time there was a marked improvement in Sophie’s development. Week by week she got stronger and stronger and more and more fluent. People who saw her at intervals and new nothing about what had happened seemed to comment continually about how much she had changed since last they saw her. That was something new for us. She certainly had setbacks when she caught the Cape Town winter viruses, but her communication was improving consistently and she was getting stronger. By October she had toilet-trained, something we had come to expect would never happen.
The local metabolic specialist, in the meantime, had referred Sophie’s case to a specialist at Great Ormond Street, who returned an opinion that Sophie was probably not suffering from a metabolic disorder and that, although unusual, Sophie’s tests and history may be consistent with mesio-temporal sclerosis – a common ancillary to epilepsy. This has allowed us to switch focus to more constructive remedial action.
Sophie continues to get better and better. We have recently read and heard the testimonies of older kids with mental illnesses who have been out cold under the power of God and had visions of themselves lying on the floor while His angels literally re-wire their heads. They’ve woken up completely restored. Sophie wasn’t healed in one hit, but she’s on the road and changing all the time.
Just in the past two weeks we noticed that her proportions have changed. She and Josie share clothes often because they’re similar sized, but Sophie always seemed to have a ‘long body and short legs’. We noticed in the week before Christmas that she doesn’t any more, and as we talked about it we realised that her ankles, which used to be rolled right inwards because of hypotonia and lax ligaments, are straight. Her feet are beginning to arch. It used to be that when she walked across a tiled floor you’d hear the “slap, slap, slap” of her flat feet coming. No more.
Sophie’s story’s not over, it’s just beginning.
It’s a good story.
One day we will look back on “the time Sophie was dying” and laugh. We’re nearly at that day; we are full of hope and we rejoice as she grows.
Perhaps the greatest gift we received this Christmas was this song for Sophie from our friend Colin:
Click here to download Sophie’s Song
We had had enough of the 98% humidity when we left our tents on Saturday. I mean like completely enough. I mean enough ’til, like, January or something.
We came to East London in October for a two week break and have stayed. For the past six weeks we have camped north of East London on the southernmost segment of the Wild Coast. It’s been good. We’ve been visited by peacocks, giraffe, fallow deer, new friends and old friends and angels and have woken each morning to the sound of the weaver birds in the trees around our camp. In six weeks the girls, though by no means unrecognisable, have changed dramatically. As have we. But I get ahead of myself …
This is a Christmas letter. I dislike Christmas letters. Quite a lot. So I thought it good to pause at this point and give you a chance to brace yourself. Please don’t stop reading. Perhaps it will be of some encouragement to know that I only seem to write such things at truly tumultuous times. By which, of course, I mean entirely subjectively tumultuous times, but perhaps you’ll find it interesting nonetheless. As my wife and eldest daughter keep telling me: “You never know.” I think they mean “One never knows”, but I’m not really sure.
The analyst in me recognises that Michelle and I thrive on the discontinuities in life. Linear progression doesn’t get us up in the morning. As I imagine a surfer must feel, we find joy in the fine balance between tumult and order; between mastery and having our butts kicked. The joy of living for us comes by adversity; in changing, in finding strength, in overcoming. By definition then, as you will see, it’s been a joyful year.
The quietness between adversity is also good. Very good. But it’s not when we feel most alive.
Today, thanks to the love of friends, I am warm and dry and not sitting in a dripping-wet tent. My intention is to share with you some of those things that have fundamentally shaped us over the past year or so. It has been a difficult year for writing, evidenced both by the slew of unfinished article stubs, that you can’t see, and by the more-or-less complete absence of content on the blog this year, which you can see. I hope you begin to understand our silence as you read and that in weaving the story the joy of expression begins to flow for me again.
I’ll be writing in installments.
This was the introduction.
I hope you’ll stay with us.
Emily took three steps today from the end of the kitchen to Mum. She’s staggered one or two accidental steps before, these were her first considered steps. As with every childhood milestone reached: much jubilation despite impending chaos.
It was beautiful. I liked everything about it except that it wouldn’t make calls. Today I took it to the curiously named “Vodacare” to whose abyssal service system I have committed my delicate device. Will it come back to me, I wonder?
Grandpa and I took Jo and Sophie to see Swan Lake this afternoon.
They loved it. Sophie sat on the edge of her seat (or stood) enthralled. As each movement drew to an end, if it had been a good one she held her arms up high over her head for the last few bars and then applauded for all she was worth. Otherwise she just applauded.
Jo had lots of plot-related questions and was absorbed except for the long-drawn-out lake sequences in the second half of Act II.
Somewhat surprisingly, fun was had by all at the ballet this rainy Saturday.
Yesterday was a lovely day. A cold and rainy inside-day, just right for playing with Lego, building puzzles and watching Peppa Pig. And watching Peppa Pig. And watching Peppa Pig.
Sophie’s a wonderful little girl and watching her enjoy her birthday was a joy.
Dialogue of the day:
“Dad, that’s a really big one”
“Jo, if I had a penny for every time I’ve heard that …”
“Then you’d buy a bigger one, wouldn’t you Dad?”
I mean, where do you go from there? Seriously.
We have a P..P..Pigeon Problem. Well, not so much us as our bird-brained but rather dear dog, Ruby.
A couple of weeks back we woke – two mornings in a row – to find that Ruby had mined the area around the beanbag she sleeps on. She’d taken the added precaution of ensuring the deterent was of a consistency that gradually spread itself evenly over the floor. Both mornings, fortunately, we switched the lights on before entering the room. Nuff said.
We adopted a two-pronged remedial approach: we changed her diet immediately and started feeding her in the morning. The first measure she took to just fine, but the second change has failed. Entirely. She runs to the front door to go out in the morning, looking famished, then watches the pigeons eat the food out of her bowl. She begs again mid-afternoon and does the same. After dark (no pigeons) she repeats the process and eats her food. I put it down to idiocy for a while (hers) and persevered in the hope she would suddenly realise that breakfast was better than dinner – specially if there’s no dinner to be had. I now think it may be something other than idiocy (hers).
She really has driven the argument far beyond the realm of what might be considered reasonable. If I walk outside at any time of day, turn and look back at the house, my eyes are met by the hopeful cocked-head stares of clans of hopeful pigeons lining the apex of the roof and the gutters. It’s a little freaky. Really.
Now there are a few things to note here:
1. She’s beaten us
2. Either she’s terrified of pigeons or a completely selfless philanthropist
3. She is almost certainly a supreme canine strategist
4. She’s beaten us
We’ll feed her after dark from now on, but if she soils the floor we will close her in a kennel full of pigeons with a single dog biscuit until she taps out. If reality TV can do it, so can we.
(and if we may say so too) … we wouldn’t be us if it wasn’t for you.
Happy Mother’s Day!