By Kylie Rowlands
If someone told me 9 years ago I would be a Mum of two beautiful children, and that one was disabled with chronic medical conditions, I would have seriously questioned my ability to be able to cope with that. It has taken many years for me to accept it, but I can now proudly say, ‘I am a special needs mum, and I’m a better person for it’.
I’m incredibly lucky to have a beautiful, loving and caring 8 year old daughter, a 5 year old son with amazing strength and resilience, and a husband who is our pillar of strength.
Our carefree life changed at my 20 week scan, two weeks before Christmas 2014. We were informed of complications and I was immediately admitted into hospital to do what was best for my unborn baby.
Falling pregnant wasn’t easy so it was a no brainer to go to hospital for the remainder of my pregnancy. The hardest part was leaving my then 3 year old daughter and husband at home. Saying goodbye to my daughter everyday when she would visit was one of the hardest things I had ever had to do. Looking back, I think those months prepared me mentally for what was ahead.
Our son was born at 29 weeks gestation. The diagnosis unfolded in various stages. In the first two days of life he suffered a brain haemorrhage and contracted Bacterial Meningitis. From that, seizures began, a shunt had to be inserted into his brain to relieve the pressure, and the list goes on.
Hospital stays, medical terminology, therapy sessions, research, special needs equipment, funding and endless doctors appointments became our now our daily norm.
The last 5 years have tested us in ways that I could never have imagined and the transition was not an easy one. Our world is difficult to understand or relate to unless you live it. At times it does not allow us to have the flexibility, choice or the control we would like. This is something we have had to accept over the years and I must admit, I still struggle with at times. As does our daughter. Simple things like organising playdates for her can be extremely stressful. Bringing another child into our home isn’t easy. It’s our safe place! And having to ask a parent if their child is, or has been well beforehand still feels very uncomfortable.
Because our son naturally required more attention, balancing quality time with each of them is challenging. Life is far from normal. We have more one on one time with our children and less family outings that maybe too stressful for our son.
I’ve been told many times that children who have a sibling with special needs grow up to be incredibly compassionate and empathetic and have the ability to see things differently to other children. It warms my heart to see these qualities already developing in my daughter.
It also means that she has had to grow up a little quicker, be more independent, resilient and patient than other children her age. By no means has this been easy. She has seen things no child her age should ever have to experience. Watching her little brother struggle through a seizure, stroke his head and sing to him while he has another blood test, or watch him recover from multiple brain surgeries is extremely traumatic.
Having the constant worry of when the next crisis will hit is draining for me, let alone an 8 year old little girl. When a medical emergency happens she’s right onto it. She grabs the phone to call the paramedics, fetches us towels and the emergency medication, and sometimes waits at the front door for the paramedics to arrive. Then she watches her little brother and myself leave in the ambulance wondering when we will be home again. Every time it breaks my heart.
We were told early on to always be open and honest with her and acknowledge that it’s not easy for her. We know she feels left out at times, and that a lot is expected of her. But the main thing is she knows she is equally loved and valued. We couldn’t do this without her.
While we have always had our beautiful family and friends to support us we also now have a wider community looking out for us too, and especially our daughter.
Little Dreamers was first introduced to us when she was 6 years old by one of our son’s therapists. It was the perfect time for her and us as a family. It did take me a little while to reach out. In a way I felt guilty and hoped I could give her all she needed. But looking back it was the best decision I ever made. No one quite understands the daily challenges that a young carer faces better than another child in a similar situation. It allows her to be in an environment where she can be herself and let her worries go, even just for a short time.
Sometimes she gets upset by others’ reactions to her brother, but when she is with the Little Dreamers family you immediately see her at ease as they can relate on similar levels. As she grows I know Little Dreamers will continue to guide and nurture her, and she will hold those friendship close to her heart forever.
I hope one day she looks back and understands that being a young carer was sometimes the hardest but also the most meaningful role she has had.
I am incredibly proud of my family what we have already overcome. And look forward to facing whatever is ahead of us with strength, love and determination.