You may have seen me mention a blog called Blessed By Brenna before. Brenna is a beautiful baby living in Illinois America – she has Ichthyosis as well – though her’s is Harlequin Ichthyosis. Brenna was born in December 2011 and her Mum Courtney has kept a blog since Brenna’s birth. Courtney has documented Brenna’s journey – she’s been extremely honest and heartfelt in writing about the very difficult times and also the very happy times. Brenna – and also Courtney, her husband Evan, and Brenna’s big brother Connor – have certainly had a trying first year, but there have been so many triumphs like Brenna’s smiles, her first time rolling over and her first birthday party. Look! The cuteness! (I too have a thing for The Hungry Caterpillar.)
I visit Blessed By Brenna every day, and I love seeing Brenna’s developments – and that beautiful smile. I have cried in empathy and squeeeed in delight while reading many of Courtney’s words and looking over the photos. I cheer at at the moon-sized milestones Brenna achieves. And I wince when I see her skin red raw. In all honesty, it is difficult knowing the pain and social challenges of this condition affects others, especially a baby so tiny and unable to articulate their feelings. Life’s not fair, but life is also blessed, and I also know that Brenna has and will continue to have many wonderful moments because of and despite of her Ichthyosis.
Courtney’s writing helps me realise and better appreciate what my parents went through in raising me. Parenting a small child with such an unexpected, complex, painful and unpredictable illness is certainly a challenge. I have also learnt a few treatment and laundry tips from Courtney – if only some of those products were available in Australia!
She and Evan are doing a wonderful job with Brenna and I am so pleased that they have support from their local Illinois community as well as the whole world – which blogging has enabled. I imagine the great unknown looms darkly with having a seriously ill baby like Brenna, but there is light and comfort in having the support from others who have lived with the condition, and also from those that don’t have Ichthyosis and may never have heard of it until they read a blog. I particularly love that like me, Courtney and Evan are raising awareness about Ichthyosis by being in control of their story – to avoid sensationalism of a rare and often confronting condition and appearance. Courtney wrote a great response to recent exploitation of Ichthyosis on social media.
Courtney and I keep in touch on Twitter, and she asked me to write a guest post for here blog. I wanted to give the message that Brenna will grow up to be OK, just like me. You can read my full post here.
Thank you for featuring me, Courtney, and I hope to meet you all in person one day soon! (Though you’ll have double the greasy fingerprints!) I certainly feel ‘Blessed By Brenna’ and I thank you and the other Ichthyosis bloggers out there for sharing your stories, and for the support and awareness blogging about Ichthyosis has generated.