After our rare diagnosis the first time around, we held our breath through every doctor's appointment and looked away from the screen the first few times our midwife took those telltale measurements that indicated Jackson's diagnosis. Through all the tests, our little girl was given a clean bill of health. We started analyzing every shade of hot pink and brought those baby naming books back out. We decided on Lily for her first name as Robert always brought me Stargazer Lilies while we were dating. They've been one of my favorite flowers for a long time and it was the one thing I insisted upon for our wedding. Our little Lily was on her way!
I hope that I can always remember Lily's birth day as clearly as I do today. One of my favorite parts of the story was how unprepared I was for her arrival. Literally. I still had laundry spinning in my washer when we went to our doctor's appointment. We were down to the once a week appointments and our midwife had kind of warned us to always have that overnight bag with us 'just in case'. Sure enough, he gave us enough time to go eat lunch, but not to wander too far because we'd be inducing labor in a couple hours. My frazzled but excited mother got a 'today's the day' call that ended with 'by the way, will you stop by the house and put the wet clothes in the dryer on the way up?'. Labor went smoothly and at 2:00 a.m., Lily made her debut. A tiny little girl with a huge impact. At 5lbs 4oz, she was a tiny, gorgeous, peaceful little angel! It was one of those moments you can't describe; full of emotions without words. Daddy was so enamored he never slept that night. Exhausted but elated, he was waiting for me to wake up a few hours later. It was then that I found out some things that never showed up on the exams. Lily was born with a cleft palate, low blood sugar, and was staying in the NICU. Little did we know how long her stay would last.
It took us five weeks, two hospitals, testing and analyzing just about every inch inside and out, and one hell of a scary swallow study gone bad to figure out that Lily was aspirating food into her lungs instead of being able to swallow correctly, among other minor things. The amazing doctors, nurses and specialists at Primary Childrens Medical Center finally gave us the clearance to go home and (drumroll...) take her with us! Our living out of backpacks, sleeping in chairs and surviving on cafeteria food was done.
Lily has been back for a few surgeries, including one more scary tv-drama like Code Blue experience, but she's conquered it all! All in all, the geneticist just called the results of all the test, Lily Syndrome. She's got little pieces to lots of different puzzles, but it's all just her and who she is. She now has a G-tube in her stomach and will need glasses in the future (so cute!) and we have to bring her in to get her ears checked, but the overall result is a healthy, happy, ENERGETIC two year old that lets nothing hold her back! I am in awe of her every single day and can't imagine what it would be like for nothing to slow you down and phase you.
We thought as parents, we would be the teachers, but she has taught us more than we could ever imagine. She's taught us how tough we can be, she's taught us how soft we can be (especially Daddy!), she's taught us the importance of family, she's taught us that obstacles are there to overcome, not work around or ignore and that you need support to do it, she's taught us that it's okay to be scared, but to also be brave when it's needed, she's taught us what it's really truly like to love and be loved and she's taught us that we have more to give than we'd ever seen in ourselves. And those things that she's taught us has led us to this next step--adopting a sibling for "silly Lily".