When Brenna was a couple of weeks old and still in the NICU at St. John's, we were chatting with her dermatologist at the hospital one day, and he brought up the some of the supportive resources available through FIRST (The Foundation for Ichthyosis and Related Skin Types), such as a bi-annual family conference and, when Brenna is older, summer camps for children with skin conditions. He encouraged us to draw support from FIRST and other families like ours.
I have to be honest that we didn't find this idea appealing at first. I guess we pictured it being like an old-fashioned support group where you open up about your problems and strangers want you to cry on their shoulders. We felt we had enough support from our close family and friends, who have constantly been there for us emotionally, physically and financially from the moment of Brenna's birth.
But then I connected with two families who have children with Harlequin in the U.S. And I very quickly realized how much I needed them, to learn about living with this severe condition every day and the care that we must provide, but also for the support.
Harlequin Ichthyosis is so rare that there are very few true experts in the world. The vast majority of dermatologists have never had a patient with it. So that means that the wealth of information on caring for babies with it comes from the families, who live it day in and day out - the baths, the moisturizing, the infection prevention, the itching/dryness, how to add calories, laundry and cleaning, occupational therapy/movement, and the judging/rudeness from strangers.
When I first started this blog, we were in a heavy fog of distressed emotions, wondering if our daughter was going to live. The sole purpose of the blog at that time was to update about Brenna's condition and raise awareness about Harlequin Ichthyosis as we learned little by little what this disease entailed.
What I didn't expect was the number of families in similar situations that would be able to connect with us because of this blog. Though the oldest living person with Harlequin in the world is only in her twenties - and there are only maybe a dozen people in their teens and twenties that I know of - with medical advances, more children born with Harlequin are living and thriving today.
Not only did I connect with some families and a few people in their teens who are actually living with Harlequin at first, but in the year since starting our blog, I've been contacted by parents across the world, from many states in the U.S. to Ireland to Israel...not only regarding Harlequin but other forms of ichthyosis too. And they all want the exact same thing that we wanted during the very critical weeks following Brenna's birth: hope.
The knowledge about care is immensely helpful, yes, but the inevitable questions always comes up: "is Brenna happy? Is she comfortable? Does it get easier?"
I can't express how much it meant to us to receive this kind of support from other families - both in the beginning and still today (all the time actually) - and I believe God as opened up the opportunity for us to give back in a way to "new" families who are facing these new obstacles, who just want to know that everything will be OK, even if their families and their futures are turning out much differently than expected.
Ultimately, we all hope the same things for our children: happiness and success, in whatever form that may be. I know that other families have given me so much hope that Brenna can achieve these things, and I hope that we also are able to provide that for families who join our "ichthyosis community" in the future.