Sharing Stories

The past few weeks, Harlequin Ichthyosis has been the topic on a very informative blog, created by some friends in the Ichthyosis community. The first week, they posted information about the genetic details of HI and explained it thoroughly. The other posts will be written by guest speakers about caring for or living with Harlequin ichthyosis through the different stages of life. So far, 'Newborn Surprise', 'Life in the NICU' and 'Going Home' have been posted by Alicia, mom of 6 month old Efrain. The next guest poster will be writing about the 'first year' and I am writing about  'the toddler years'. Interestingly enough, as I read others experiences about their birth, first months or even first year, our stories are all so different.

I feel so empathetic for the way other mothers & fathers received the 'news' about their child having HI. Not only for it to be a surprise but a hospital's little of knowledge about Harlequin is a huge reason for fatalities. Knowing how to care for an HI baby in the neonatal stage is critical. And when a baby is born with no warning signs or preparation for HI care, makes the situation that much more intense and severe. I feel spoiled, in a way, after I hear others' birth stories. Evan's diagnosis was given to us 2 days before he was born. Yale had 2 days to prepare for an HI birth. Yale had experts who were guiding the neonatal team how to care for a child with this condition. We fell into the right hands and were given so much hope for our baby.

I highly recommend you follow along on this site, Confetti Skin, Beauty Within, and learn more about Harlequin Ichthyosis. My story will be posted in a few weeks and I will link up to it. I find it incredibly interesting (obviously) and enjoy reading about others who are experiencing similar things. It is hard not to feel connected to someone who understands what you are going through. Whether you are both moms caring for your child with HI or a mother connecting with an adult who is affected. I look forward to reading all of the posts on this site and hearing a bit more about the other stages of life. It will help give us an idea of what to expect in the years to come. Lots going on in our little community!!!!

And what would be a post without some Evan footage!!! 

My silly little Santa!