Macy & Turner Syndrome
It's probably fairly safe to say that the vast majority of us worry throughout the entirety of our pregnancies, about the safety and health of our unborn babies. The moment of their birth is often such a blessing and a huge relief, catapulting us directly into the bliss of the newborn bubble. For some, it's a little bit different. Karly tells us about her experience of learning, and managing life as a mum to three, one born with Turner Syndrome.
I have three daughters, two of them have 46 chromosomes and one only has 45. Macy, my eldest daughter was born with Turner Syndrome, her diagnosis is Classic 45XO which means she is missing an entire X chromosome
Sometimes it seems like hospitals and waiting rooms are our second home.
Macy also has ADHD and a mild intellectual disability, which sees us spending long days at Melbourne’s Royal Children’s Hospital (three hours from home for us) seeing specialists and having tests done. It also sees us having weekly Occupational Therapy appointments and various other appointments with different health professionals.
Sitting in waiting rooms with three kids under five is one of my least favourite things to do, especially with one child who can’t sit still. The very thought gives me anxiety.
After having five surgeries and many hospital stays alongside all of Macy’s outpatient appointments we’ve discovered some great ways to make the appointments less painful for everyone involved.
This is what I do to make our days run smoother at appointments...
- Pack a lunchbox and drink bottle (I try to pack snacks the kids don’t usually get to keep them interested and busy)
- Pack a ‘busy bag’ with a colouring book, sketch book, packet of pencils, small fiddle toys, LEGO, books, a calculator (this keeps Macy entertained for ages!), play dough & small mat etc. Anything that will keep your kids engaged and entertained. Only use this bag at appointments.
- Pack an iPad/tablet but keep it in your bag until you’ve exhausted all other avenues of entertainment.
- I ask the receptionist if the doctor is running late so I can explain to Macy if there’s going to be a long wait. I also ask if we can go for a walk and get a call or text when it’s getting close to our turn if the wait is going to be long.
- I prep Macy for about two weeks before an appointment. I explain to her when it is, what it’s for and what will happen there. I find this helps her cope with what’s to come on the day.
- If your child has anxiety about the appointment or surgery, contact your hospital and ask if they have a play therapist that can help! We used one when Macy had her last surgery and it made a world of difference to her anxiety.
Macy has recently started asking why other kids don’t go to as many appointments as she does, and why she has to have operations and other people don’t. We decided to be honest and explain to her that she has Turner Syndrome which makes her extra-special. We also explained that lots of other people have to go to appointments and have surgery for different reasons.
It breaks my heart that she can see her life is so different to other people’s, and when she gets upset about having to miss kinder for an appointment or surgery, but I remind myself that we aren’t all the same and everyone has challenges. They are just different from ours.
Almost every time she comes home from kinder there is some kind of negative feedback from either her teachers or Macy herself about her behaviour. It’s heartbreaking when you spend hours on end in appointments working on strategies that seemingly don’t work. Sometimes having a child with additional needs is the biggest challenge but other days it’s the greatest blessing. She has taught me how to be more patient than I ever thought possible.
We are starting to realise the reality of the challenges she’s going to face as she heads off to school next year, but I know that we’ve got this.
Macy is a full of beans, high energy, and a delightful, loving little girl, and we wouldn’t change her for the world; but we would certainly change the world for her.