Ichthyosis Awareness Month: my Mum’s story. “To all parents with children who have Ichthyosis, there is hope out there.”

When I asked my Mum to write another piece for the Ichthyosis Awareness Month Blog Project, my brief for her was to give hope to new parents. I see so many parents worry for their child’s future – it really must be a hard thing for a parent to face. While I am not a parent, I know what mine went through raising me – I was witness to the worry they have for me even to this day. I’ve also seen how much they’ve learnt about Ichthyosis – the ongoing care, navigating stares and taunts, and learning the technical terms. They knew nothing about the condition before I was born and then they just had to learn how to cope. And they’ve done a fantastic job.

While I’m not a parent, I saw how my parents handled my Ichthyosis. I saw the strain. I was there when they drove 300 kilometres to take me to hospital because I had such bad skin infection. I was there when Mum read to me in hospital – the days we’re so long and we were far away from home. I was there when Mum combed the skin out of my hair. I was there when Mum and Dad confronted those who bullied me. I was there when they took me to the counsellor after I didn’t want to live, aged nine. I was there when they made a decision to pull me out of church because the church made a link between my skin, their mixed-race marriage and sin. My Mum and Dad faced some incredible struggles – they raised me in a country they’d just moved to, with no family around until I was five. And they made it. I am so thankful.

Here’s my wonderful Mum, Jeanette. She wrote a piece last year too. Mum has been my advocate, my carer, my role model and my best friend.

“Wow, I can’t believe that it is Ichthyosis Awareness May 2014 already. Time really flies when you’re having fun. A lot has happened since 2013.

When Carly was born, all I thought was how I was going to cope in the big wide world? I have had difficult times but my husband and I are very fortunate, we overcame the big hurdle that lay ahead of us.

I have never thought of Carly as being disabled.

When Carly moved to Melbourne, both Roger and myself were concerned. We knew she was confident, but no matter how confident you are, there would be times when you are down especially when she has sore skin or not feeling well. She was alone in a big city (Melbourne) and we were about 3 – 4 hours away. She proved to us that she could cope.

2013 Was a big year for Carly. She is very successful in what she does and enjoys life to the full. I have seen Carly blossom through 2013. I accompanied her to Canberra where she received a Yooralla Media Award for what she is doing. She was also abused online (Reddit) and it was very distressing for both her and us. This happened over the Xmas period so she felt very down and angry. She managed to overcome this. During this time her boyfriend then, and fiancé now Adam was there for her. To see them together was like a bright shining star. I knew then that Carly had found her soul mate, someone she could truly love and respect. Since Carly had met Adam, she had blossomed and her outlook on life is a lot more positive and brighter. Happiness is a wonderful thing. We can also see the improvement in her skin which looks a lot healthier than when she is down.

To all the parents with sons and daughters who have some form of Ichthyosis or related skin problems, there is hope out there. I know there is no cure, but by having a positive attitude yourself and passing this attitude on to your children helps a lot. I won’t deny that I have not felt down but most of the time I tried not to pass this feeling onto Carly.

As I said, both my husband and I never felt Carly was disabled. She responded in every way that we thought she should, although growing up for Carly was not easy due to bullying and feeling like an outcast. I also had a great medical network around and people who supported us.We took one day at a time and tried not to think too far ahead. We never expected Carly to achieve what she so far. She was always thoughtful and mindful of others. (She was never going to leave home as she felt we would need someone to care for us when we got older.)

All her achievements to date has been through her sheer determination, tenacity, positivity, self-respect and honesty and treating people the way she wants to be treated.

All I can say now is that we are very proud of her hard work and putting others first.”

 

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.