Alicia Stewart, 30, Forest Lake, Qld
Wrapping my daughter up in swathes of purple tinsel, I watched as her face cracked into a toothy grin. Peering out from underneath her metallic halo, Jazmin looked every inch a cute Christmas angel.Seeing her so happy, you would hardly guess my heavenly little seven-year-old had been through one of the toughest years of her young life. But she really had.
That halo around her head was actually bolted tightly into her skull, while the purple tinsel was wrapped around a special walking frame to help straighten her spine.Without the halo and the frame, my girl would have been hunched over like an old lady. Doctors had known that something was wrong when she was born. At 3.2 kilos, she was a healthy weight, but they told me and my ex-husband Glenn, 33, that Jazmin had tight hip and shoulder joints, which were making it difficult for her to move.
We thought they might loosen in time, but in the following weeks we realised Jazmin was like a tiny doll. Lying meekly in her crib, she didn't wriggle and writhe like other babies. Instead it was just her big blue eyes that darted around, taking in the world with wonder. Because doctors couldn't pinpoint exactly what was wrong, they told us she was suffering from arthrogryposis, a term used for hundreds of different conditions that can cause stiff joints.
At just 19 months old, it meant our little girl needed surgery to cut her hip bones and realign them. It was a difficult time and for five weeks she was encased in a body cast that reached all the way from her waist to her tiny toes. But the surgery helped and when I watched her take her first wobbly steps at the age of three, tears of pride filled my eyes. But a few months later, I noticed that Jazmin was bent over slightly to one side, and her condition gradually worsened. A year later, a specialist confirmed she had scoliosis of the spine, meaning she was leaning sideways at a 44-degree angle.
The doctors attempted to correct it by attaching a halo to her head and metal rods to her spine underneath the skin, using traction to stretch her vertebrae at night in bed and during the day while she used a walking frame. Sadly it didn't help and Jazmin began leaning over even more. Soon she was bent at an alarming 80-degree angle. Looking at her all hunched up, unable to meet my eye or play properly with her little brother, Corban, made my heart ache. There had to be something we could do.
There was, but it meant making a difficult decision. 'We could fuse Jazmin's spine with permanent rods which will stop it from curving, but it will also mean she'll stop growing,' the specialist told us.It was devastating. At seven years old, our little girl was already less than one metre tall. It meant she would stay tiny forever. But we hated seeing her unable to hold her head high, and even without the operation it was unlikely she'd ever reach a normal height for a child her age. What choice did we have? After some soul-searching, we finally agreed to the op.
During the 10-hour procedure, surgeons carefully fused her spine and attached a body brace to the halo on her head with four metal rods.When she woke up, surrounded once again by cold metal, I just wanted to reach out and give her a hug. But for the next three months proper cuddles were banned as Jazmin's halo and brace remained in place. It was heartbreaking, but as always Jazmin took it in her stride. Of course there were times when the screws in her head hurt, or when she wanted to get away from the metal structures and play with her brother instead, but Jazmin's courage never failed to fill me with wonder. She was such a little fighter, and so cute too. Strangers were always stopping me in the street to tell me so!
Finally, after nine agonising months in her halo and three months in her brace, the doctors removed them both. 'Pick me up Mummy,' she pleaded after she woke up from the procedure. 'I want a cuddle.' Scooping her into my arms, we had our first proper hug in months. Since then, not a day's gone by when I'm not astounded by Jazmin's bravery. She has had some setbacks along the way and unfortunately, although her halo and brace reduced her stoop by around 10 degrees, it didn't correct it fully. But that hasn't stopped Jazmin from living life to the full.
Last Christmas, we were delighted to be able to get her a motorised wheelchair which helps her sit up straight and allows her to look into her friends' eyes instead of down at the floor. It means she's back at school with Corban, seven. Although he's three years younger than she is, he's 15cm taller. It doesn't matter though because Jazmin, now 10, is still very much his big sister! Each week she does hydrotherapy with a local children's charity called Montrose Access and we're currently fundraising for a special dog to help her get around more easily.
Jazmin's inspired me to do more too. I have gone back to university to finish a degree in teaching special education and now I spend three days a week teaching kids with disabilities.I feel truly honoured to meet other children like Jazmin because there's something so very special about each of them.
Montrose Access supports those with physical disabilities. Visit www.montroseaccess.org.au.
|
