Other than loving our child, not one part of our parenthood journey has turned out as planned. Seriously, all those classes we signed up to take prior to her arrival - what a joke. We sat through an eight hour birthing class. Didn’t need it. I took my mom along with me to a three hour breastfeeding class. My kid is fed with a tube. We had 4 other classes on the calendar but Lorelei beat us to it!
Speaking of Lorelei - the girl is a currently an eight pound, three ounce badass. At a mere three months old, she has a medical file that is at least 15 times thicker than my husband’s file and my file combined. And after 77 days we are finally home from the NICU. We are all finally under one roof. Under our own roof. Together.
I have thought long and hard about where to draw the line when sharing and writing about my daughter, and the fact that we are now considered a “medically complex family.” Part of me wants to protect her by not sharing too many details or any pictures. I mean, if I put myself in her shoes (or in this case, tiny baby socks) would I want baby pictures of myself all over the internet that someone could find prior to a job interview or when I become the next Taylor Swift? Probably not. But the other side of the coin is that Lorelei has a very, very rare mitochondrial condition, that, when googled, you’ll only find about 2 and a half case studies on it. Realistically, she probably will not become the next Taylor Swift. Based on the 30 other children ahead of her, she may not even be able to speak never mind sing country pop songs while playing the guitar, wearing red lipstick and dancing in front of thousands of fans. But that doesn’t mean she isn’t going to rock our worlds and leave her mark. This kid already has an entire fleet of prayer warriors chanting her name and cheering her on, on a daily basis.
As her mom, I want her to do good. I want her to make a difference. I want her to help people. I want her to glorify God. So we will share her story. Because if another couple finds themselves a few days postpartum, sitting across a table facing a geneticist and a neonatologist who throw five life changing characters at them, “FBXL4” I want them find more than just a couple scary links on the internet.
I’m hoping I can find some more time to write in the near future. I have so much to share, recap and get off my chest in hopes of processing the hell that we have been through for the last three months. In the mean time, meet Lorelei.
I am working so hard to get caught up on my work so that I can spend some time with my blog. I miss you crazy people. I miss being creative. I miss writing. But you have to understand, I also love binge watching netflix and sipping wine in between pump sessions when my baby is sleeping. Motherhood is exhausting, y’all.
Thank you for your continued prayers, support and love. Please let me know if there is anything my family can be praying for for you or your family!
