Here’s a lovely Hills District Mum who could teach us all something at this time of year about focussing on the positives and seeing the beauty in everyone and everything. Thank you Katherine Pym for spending five minutes with us!
Tell us about your family and your journey so far
My husband Daniel and I have been together 13 years and married for almost 7 years. Eva was born July 2010 and we had big dreams of how life was going to be like when she was born. We’d had no clue there were any complications during my pregnancy so our big dreams came crashing down when we were rushed to the neonatal intensive care unit at Westmead Children’s Hospital where we almost lost her many times in our 6 week stay there, due to 2 severe heart conditions. In that time we were told of her very rare chromosome deletion (6q23.5-25.1) and she was the only one in the world. Doctors couldn’t tell us how long we had with her and if she would eat, walk or talk. The first 2.5 years of her life were spent in and out of hospital seeing 15 specialists and therapists. We were in survival mode and willing her to live.
As time went on she got stronger and learnt to sit unassisted then shuffle on her bottom. She started eating solids at 3.5 years old just before our son Lachlan was born. From then on she continued to keep up with Lachie’s milestones like crawling, standing, cruising and not long after her fourth birthday she walked independently. She has thrived having her brother around and still does, most recently toilet training at 5 not long after Lachie being 2.5 years. We still see many specialists and most importantly Eva’s cardiologist as Eva will eventually require a heart transplant due to her severe dilated cardiomyopathy. We still don’t know how much time we have with Eva but we try and live each day to the fullest and give her the best quality of life possible.
What has having a child with special/additional needs taught you?
Having a child is an amazing gift to anyone but having a child with special needs pushes you and gives you a strength you never knew you had. We have learnt over time to be positive and not dwell on what may lie ahead, as each day with Eva is a very precious gift that we will never take for granted. She has completely opened our eyes and our hearts by showing us the most beautiful world we never knew existed.
Can you tell us about Eva’s bubbly personality and what she enjoys?
Eva is such a bubbly and happy little girl, she lights up a room with her positivity and her excited nature is infectious. She’s a very social person who will stop anyone at the shops to have a chat and put a smile on their face. Eva’s squeezy hugs are addictive and always end with her patting you on the back, like she’s saying ‘Its going to be ok, you’re doing great!’. Like any typical 5 year old, she loves dancing and anything to do with music and playing dress ups. Outside of her 12 hours of therapy a week we try and fill her days with dance lessons, swimming, the park and she loves going out to eat!
What advice would you give to a mum who finds it difficult or awkward to explain conditions such as Eva’s to their child?
Eva, or any child with special/ additional needs, is not defined by their diagnosis. She is so much more than her complex medical history and mountains of assessments and paperwork. When I explain why Eva doesn’t always make sense when she talks or can’t run and is only the size of a 2 year old, I say that everyone is different and that’s what makes them beautiful because the world would be a very boring place if we were all the same. We learn so much from people’s differences no matter who they are. Eva constantly teaches compassion, strength and positivity – she’s our little superhero.
What or who inspires you?
Eva would be my biggest inspiration. I have seen her go from close to passing to now living life to the fullest and starting school next year. She still has a big battle ahead of her one day, when she’ll have her heart transplant, and I know her strength will inspire me even more to push through those hard times.
I also have friends that constantly inspire me through their passion, whether it’s in business, working with charities or helping the community. Working with different charities I’ve met some truly inspirational people that I really admire and look up to.
What do you love about being a mum?
Being a mum has completely opened my heart and changed my priorities about life. While some days are harder than others, the little victories that we constantly celebrate certainly outweigh those tougher times. I love being a mum and being able to constantly learn from my kids – they have taught me many life lessons.
What do you enjoy doing in the Hills?
I personally love being active and enjoying the outdoors. As a family we enjoy eating out and catching up with friends and having summer barbecues. The kids enjoy going to many of the parks in the area. Growing up in the Hills I love the sense of community – everyone is so kind and caring and I wouldn’t want to live anywhere else!
Follow Eva’s journey on Facebook.