Scoliosis – a journey with my daughter

So this post is going to be a bit different to my others. Not only because it is about something other than books, but because it’s personal and really tells the story of where I am today. And it started on a vacation last summer, when we went on holiday with friends to Spain with our families.
At that time my daughter was 14. She’s a beautiful girl–of course any mother thinks that about their child–but in this case it’s true 😉 She’s also becoming a woman, where once she was up and down she’s developed curves, and in her small bikini it became apparent just how strong some of those curves were.
“Is it me or is one of her hips curvier than the other?” I asked my husband, my friend, even my daughter. It was my daughter who told me that her hip had been like that for a while, and that she’d mentioned it to me before. I have no recollection of her mentioning it, although later down the line I truly wished I had.
A couple of weeks later, having returned from our holiday, I took her to our family doctor. She examined her, making her bend over, lean to the left and to the right and immediately sent her for x-rays. Of course we live in the UK, so immediately was actually two weeks later, but at the time we were unconcerned.
That lack of concern only lasted a few days, right until we went back to the doctor. That’s when the diagnosis of Scoliosis was given. For those who don’t know what Scoliosis is, it’s a curve in the spine. It can come in many forms; c-shape, s-shape, it can be a small bend or a large one.
I’d heard of Scoliosis before, and even this is down to my bookworm ways. Back when I was a teenager myself I was a Judy Blume freak, and remembered her book ‘Deenie’ which heart wrenchingly portrayed the journey the protagonist took from learning she had scoliosis to having to wear a disfiguring brace during her teenage years.

Before the appointment I did some research. The best case scenario was being monitored–this would mean that the curve wasn’t too big and that it would hopefully get no bigger. After that the options were bracing (for those who were still growing) which wouldn’t make the curve get any better, but also would ensure it didn’t get any worse.
And for those who had curves of 50% or more–open back surgery was really the only remedy.
Of course we hoped for monitoring.
The night before her specialist appointment we stayed in a hotel near Cambridge. The appointment was at Addenbrooke’s, a university hospital, commonly known as one of the best centres for scoliosis in the country. So we got up nice and early on the day and made our way through the busy streets of the city.
Once we’d checked in, our first stop was the x-ray department. Expecting to be waiting for a while, I sent my husband to get us both a coffee. While he was gone, we were called into the x-ray room, and I stood behind the screens and watched the x-ray photo slowly upload onto the computer. This is what I saw:

IMG_0432

X-ray showing her 45 degree curve

I was shocked. Not only was it glaringly curved, I could tell it was worst than the last x-ray. Her s-shaped spine was getting worse.
An hour later we were sitting with the specialist, who told us that back surgery was really the only option.  We listened as he explained this would involve around a 5 hour operation followed by a night in intensive care, a week in hospital and around 2 to 3 months of recuperation at home. All at a time when she will be taking her exams, applying for colleges and trying to be the thing she really wants to be–a normal teenager.
I was hit for six. My daughter, however, took it all in her stride. She’s always been amazingly strong, but her reaction surprised even me. She agreed that the operation was the best choice, in spite of the limitations it would put on her in the short term, and immediately started planning how she would manage to study for two months while lying at 45 degrees. And all the while I was trying to hold the tears back (which I managed to do until we got home and I could hide in the bathroom).
So that’s where we are at the moment; waiting for pre-op assessments and for a date for her surgery. Once those are done we should get a date for surgery, and that’s when the real worrying begins.
In the meantime the heroine of my next book just happens to have scoliosis. She’s an adult–not a teenager–and she’s also a surprisingly strong survivor. Which I know my daughter will also be. Writing can not only be cathartic it can also be healing, it can reveal both our fears and our hopes for the future. And I have every hope that my daughter–like my heroine–will grow up to be a survivor.
Because that’s just the way she is.
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7 thoughts on “Scoliosis – a journey with my daughter

  1. I am sending you so much love… you and your daughter. I was diagnosed with Scoliosis when I was in 7th grade. I slept with a brace on for five years, and had electrode therapy, chiropractic conditioning and physical therapy. I gasped when I saw you mention Deenie. You know, that’s one of the first things that helped me cope with it back then. I was, and am, a huge Judy Blume fan, and remembered Deenie.
    I was lucky that mine wasn’t as severe, I know your girl will be fine. Surgery is just scary generally, but when it’s your baby, it’s just unimaginable. I will continue to send you all my love and prayers and support. Keep us updated on her and her progress and I am truly looking so forward to reading this book. You’re an amazing gal Carrie. Thank goodness your daughter has such a strong and determined mama at her side.

    • Thank you so much Jami. It’s amazing how many people have been affected by scoliosis. Wearing a brace for all those years can’t have been easy, and the therapy sounds hard. Life isn’t an easy journey is it?!

  2. You and your daughter are both amazing women. Strong and inspiring. I will keep you both(and your family) in my thoughts and prayers. Keep us posted when you can. Hugs.

  3. I have a 14-year old Woman-Child as well, thank you for sharing this with us. I wish the two of you love and courage through this process. Your daughter learned her courage from her incredible mother.

  4. So sorry to hear what you’re going through Carrie. Your daughter is very brave and so are you for sharing this with us. I’m sure there’s light at the end of the tunnel though. I will keep you in my prayers.

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