Waking up in a pool of hot sweat every hour, denying my vocal cords their true strength to just - scream. That was truly what separation was like for me. It was like living without my heart, because my heart was lying somewhere far away from me in an enclosed heated bed asleep surviving off of a million wires. Inhale, exhale, inhale, exhale. This was all Nora could do to keep herself alive, and it was all I could tell myself to calm down.
My eyes dripped with sweat or tears, I wasn't even sure at that point. I just knew it was dark and we were still living in my sister-in-law's house. I had to stay calm. It was the last night of Week One, the night before we would travel the hour home to Wilkes. A big distance from the 5 mile drive we had been graced with so far.
Sleep for me was another wish struggling to happen, but when it came I fell into comas and usually on a pillow of used tissues. I was either fighting sleep for fear of losing her while asleep, or sleeping so deeply I would wake from nightmares and fear.
Each time I felt reality hit, I would jolt awake. Like a shell-shocked Katniss Everdeen, I would go over what I knew first. I have three children. Two are here, one is in the NICU. Nora was born early but is alive. Today is... and then I would go over what all I had to make happen to get to Nora's bedside for another day. During the time where I was pretending to keep myself together for the sake of my two older children, my husband, my sister- and brother-in-law and other family, I would quiz myself on my new knowledge of hospital terms and long words with big meanings that pertained to Nora. Things like meconium, secretions, d-sats. I had to absorb every piece of this alternate universe of doctor lingo so that one day I could let myself be trusted with Nora at home, away from doctors and needles and more scars.
When I finally arrived back beside Nora's very modern, transparent box-house, I felt my anxiety dwindle. I do not pretend to know what it was like for my sister-in-law to lose her son, or any other loss mom for that matter. MY daughter was not in heaven but I was so scared it could still happen at any moment. And that fear crept in me all the days she was there.
The doctors came for "rounds" that morning and discussed Nora's needed weight gain for a necessary and upcoming surgery and goals for after that. The surgery was to correct her esophagus. Instead of connecting to her stomach, her esophagus went down to her lungs and stopped with a bulb end. So her saliva and anything that entered her mouth would go into her lungs if not for a drain tube that had been inserted immediately upon the doctors' findings of this abnormality. This birth defect of Nora's is called Esophageal Atresia with an Esophageal Fistula. She must reach 4 pounds to even be considered big enough for surgery the doctors stressed. The idea was to repair the esophagus with one surgery but it could take two depending on the amount of tissue the surgeon had to work with and the amount of stretch needed to connect everything.
Then the first weekend came. I knew Zack and the kids all needed at least a chance at normalcy, clean clothes, their beds and even a day back to work. It sounded nauseating to me to think I would leave Nora so far away, even if I could come right back the next day. Zack convinced me that she would need some clean clothes and bedding and maybe even some decorations like a mobile. He went on. It was the only rationalizing I allowed in my thought process. She needed clean linens that smelled like home.
I sat there and embraced her as long as he would let me, while I pretended that I didn't notice 5 minutes turned to 10 and so on. Finally, an hour and a half later I let him lead me to the car, miserable, and torn. Nothing hurt like goodbye. It didn't matter that I would be back. We were supposed be co-living still! After all the new overload of information and soaking up as many kisses as possible we were headed to our home in Wilkes for the first time since Nora was born.
I cleaned like a crazy person once we got home, piling up my to-do list so high I would never finish and not have a minute to stop and sob like I desired to do. I called several times to check on her--shift change, updates on weight for the night and anything that might seem relevant for another phone call to Nora's bed. I needed to get through that day so that I could get through the next and the next until she could come home. It was only allowing myself to look forward to the drive back to Nora that let sleep find me.
I was overjoyed with myself for contributing to Nora's need for familiar smells. My first morning back I brought a white tank top to the hospital that I had so carefully picked out to sleep in the night before. Nurses had told me that it would have my smell on it and it would be good for Nora to lay on. A comfort for Nora. I had also bought a voice recorder that I used to record a song and book I read to her. This way Nora could still hear me while I was calling to check on her from an hour away the next night.
That was the first night an hour away from Nora. It was just like every other night I was away from her. Goodbye was never easy, I struggled everyday and often I had to tell myself to just breathe, inhale, exhale. Just like Nora, I was struggling to survive away from her.