I am looking at her and thinking, "I'm sorry." I'm sorry we caused this. I'm sorry that we unintentionally made life a whole lot harder for you. I'm sorry that you have had to go through so much in such a short time already...and this is only the beginning.
It's truly amazing the effect that one little error on one little gene can have on the body.
Additionally, as much as I feel like Brenna is our little miracle angel, I am feeling like Connor is our miracle child too, because he beat the odds of inheriting Harlequin Ichthyosis. Out of all of the families that we have connected with who have children with Harlequin - about six that I can think of off the top of my head -there are none who have any additional children. All of the families we "know" were met with the 25% chance of two gene mutations on the first try. That's almost unbelievable to me and makes me feel even more grateful for two wonderful children.
As for the future of our family, my heart is a little heavy because I have always always always wanted a bunch of babies. My best friend Kristin had eight children in her family, and I spent so much time at her house growing up. It was always full of people and laughter and activity, and I loved every second of it and wanted that for myself. (So maybe not that many :) but closer to four or five!)
Evan was always content with two children but said that the door was at least open to more after the first two. Even if we had decided on just two, we figured that the decision would be ultimately made at least a couple of years down the road.
But a 1 in 4 chance of such a severe condition is a gamble you just don't take. Not for your family and not for your future child who might have to live with it. So it feels like the possibility for more children is a door that is not just closed now, but slammed suddenly in our faces.
While I feel beyond blessed to have two beautiful children when so many couples can't have any, I am also feeling a little disappointment in accepting this new reality that is contrary to my lifelong hope and expectations of a bigger family.
However, I know that God knows what he's doing, much more so than I do. And I am sure that these two will keep me busier than I ever imagined :)