The stories on Carly’s blog this week, all in either Carly’s or their own words, not mine:
Ichthyosis Awareness Month – Alexander and Maria’s stories: “I try to ignore these comments and stares but it makes me sad, and I feel so different.”
A mother and son share their stories today. They’re coming to the Australian Ichthyosis Meet on Saturday – and both Alexander and Maria are looking forward to making new connections.
Ichthyosis Awareness Month – Steph’s Story: “Your life is what you make it.”
I really like what Steph writes here – we think along the same lines and have reached the same level of acceptance of our condition. I posted a link to a story about a potential cure for the type of Ichthyosis I have, and here’s how she responded, which led me to ask her to expand on her thoughts for this blog post:
“As crazy as it may sound- I have Harlequin Ichthyosis & I wouldn’t change a thing. It’s made me who I am today. It’s made me more accepting of others, stronger & able to laugh at life frequently (sometimes the choices are to laugh or cry).. Sure I have no idea what it’s like to live without H.I but I would never want to. It’d make life easier but that’s why God made people with Ichthyosis tough as nails! I could see why a parent may find it pretty interesting though! I’ve learned that being a mommy, you’re ALWAYS trying to help your baby avoid pain or any struggles that can be avoided.”
Ichthyosis Awareness Month – Ciara and Eleanor’s stories: “People are so shocked that someone so different can do something so amazing.”
Ciara has such a positive outlook – and I love how she’s become confident enough to explain why she looks how she does to strangers. The love and pride Eleanor has for Ciara is gorgeous (she reminds me of my Mum!). This line made me tear up – so beautiful: “Oh Mummy, don’t apologise, I wanted to be born. I love my life”.