I remember opening the door to our apartment and all three of us walking inside together for the first time as a family. It was the best feeling in the world! It was also kind of scary and intimidating at the same time. We’d been taking care of Adalene in a hospital with the help of nurses and doctors around the clock. As much as we didn’t want to be in the hospital, we couldn’t deny that the help was nice. So coming home and realizing that we were it was sobering. Thank God for my amazing mom who was still in town and helping us! She was staying at an airbnb just a few minutes away.

We continued our same routine at home that we had established in the hospital. Every three hours we’d change her diaper, I’d breast feed for about 30 minutes (if she would eat), then we’d feed her my previously pumped milk through her NG tube, I’d pump for 20 minutes, then we’d have play time, and then she’d fall back asleep. I’d usually have about an hour or so before starting the process over again. At her first doctor visit we discovered that Adalene’s pediatrician had a daughter with Down Syndrome too! He was such an encouragement and help to us in those first few weeks. We also discovered that Ada’s jaundice was not improving so her pediatrician prescribed to have a bili-blanket delivered to our home. We had to have her wrapped in the blanket any time we were not holding her. It  was really annoying. But we were thankful to have something at home to help her.

Those days at home in our little apartment are still a blur. I remember feeling happy, sad, exhausted, proud, angry. I was overwhelmed but so happy to have our girl home. But I still hadn’t processed anything that had happened. I was in survivor mode still, moving from one minute to the next just trying to keep above water.

About a week after we brought Adalene home, Ryan got the call from the Costco Warehouse manager that he had gotten the job to help open the new store in Charlottesville. A huge reason why Ryan got the transfer was because of Adalene’s heart condition. We knew that she would maybe need heart surgery if the holes didn’t close up. So Ryan made it  known to Corporate and that gave us an open door (that and God’s providence).  We were so excited to finally hear back and be able to start planning our future. Before the call, we had no idea if we were staying in Indiana or moving to Virginia or what the heck we were doing. My parent’s plans all depended on this too. They wanted to retire to Virginia but only if we would be there too. So Ryan got the call we started to plan.

Ryan did pretty much all of the planning for our move. He’s really great with that kind of stuff. We decided to have Adalene and I move out first so we could avoid the chaos of packing and living in a packed up apartment with an infant. My mom offered to fly out (she had gone home to CA by this point) and drive with Adalene and I. So six weeks after Adalene was born and 4 weeks after we’d been home from the NICU, we began another journey. We moved to Virginia. It  was about a twelve hour drive and Mom drove the whole way so I could pump and feed Adalene in the car. It was actually nice that Adalene was still so young because she basically slept the whole way.

Mom and I arrived in Virginia at “Cordyland” on June 9, 2015, the day before my mom’s 60th birthday. Our dear friends, the Cordy’s, offered to host us for the couple weeks before Ryan moved out with all of our stuff.

I can’t fully describe all the emotions involved in those few weeks. So many things were changing. Everything was changing. My entire life looked differently than it  had just a few short weeks earlier. Even my mom turning 60 and celebrating her birthday in a new place away from dad and Ryan was weird. I felt completely out of control. In every aspect of life, I was powerless. I couldn’t control the fact that my daughter was born with Down Syndrome or the possibility that she may need heart surgery. I couldn’t control that I didn’t have a home to call my own. I was living out of a suitcase in someone else’s house with a tiny newborn and away from my husband and family. I couldn’t control where we would live after Ryan arrived or how often I would even see Ryan. Opening a new Costco warehouse is a lot of work and I knew from our experience in Indiana that he would be busy and stressed. And I would be in a new place without my family or friends. I couldn’t control the fact that my milk supply was decreasing and causing me stress or the fact that I was gaining weight instead of losing it . All of these factors played on my heart. But it ’s like I didn’t even know I felt that way. I was still in survivor mode, living minute to minute and trying to keep my daughter healthy and safe. With all the chaos and things I couldn’t control, I could control one thing- my hair. I’ve always had long, thick hair. It ’s one of my favorite things about my looks and I get complimented on it  regularly.  But a week after we arrived in Virginia, I chopped it  all off. I had this nagging urge to cut it  for days and felt like if I didn’t cut it  then I’d explode. I just had to cut it off . So I did. The hair stylist asked me if I was sure and I said yes. She cut it  to my shoulders and I liked it – for a few days. Then I wondered what the heck I was thinking to cut off all my hair! I realized several months later what was going on and that it  was my way of controlling something when everything else what out of control. Looking back though, I can see God’s hand and guidance. He was in control and was making a way for me to find healing even when I thought He wasn’t.