Another step back yesterday about did me in. I felt like the core of my body had been angrily scooped out leaving my concave frame hovering in a distant place, unable to respond to the reality of the world.
I had been so hopeful and it all felt so unfair. There was hope of moving to the ‘regular’ breathing tube, breastfeeding. She was awake and talking to us with her big gray eyes. Ruby has changed so much since she has been here–nearly half of her life she has been here. She’s at that two-week-in-the-world age when she is really becoming reactive to voice, touch and sights.
It started in the afternoon. The increased respiratory rate. Back to a NICU nurse, talk of intubation and ventilator. Talk of other infection, meningitis. No no no nononononooooooooooo, I just kept thinking. How can my intuition be that off? I knew it was just a spell, she’d get over it….or maybe I didn’t know that but I couldn’t think of the other possibility. Come on Ruby. Please.
And my chicken rallied and hung on with normalish blood work. She’s on more antibiotics. Ruby has this amazing ability to hang on while breathing unbelievably fast. My friend Marcy thinks maybe Ruby has an exceptional VO2 max like super athletes and that maybe she’ll be the first woman to ride the Tour de France. I like it.
Holding pattern. And she had a ‘good’ night last night. And today….is another day. Earlier a yo yo of better to eh and now better. I am optimistic because I have to be or my hollow person would just dissolve. I am optimistic for her. But I am hardened a bit to optimism. My bright outlook has dimmed. I think I am changed forever. I wonder if I’ll feel full again. I wonder if I’ll be a panicky mom, an obsessive hand-washer for the rest of my life.
My days are so repetitive. All of it so effing bland. I sit cross-legged in the plum-colored chair on the computer. I make myself drink water. I can’t eat. Most of the time I feel like I am about to throw up. I pump milk while the respiratory therapist blows different mists into my baby’s lungs. She screams and I cry dry tears imagining snatching her off the table and nursing her. I had a dream I nursed her last night. The first dream I’ve had since this started.
I stare out the window while listening to Radio Head Rockabye Baby or Mozart. I dab lanolin on her raw skin, scared from the removal of dozens of tapes that connect her to life. I kiss her forehead and inhale her illness and exhale her recovery. When she’s awake, I fold down the glass enclosure and lay my head next to hers. I try to tell her who says hi and what it’ll be like when we’re home but just end up saying I love you over and over.
I hold her while in a rocking chair uncomfortably close to her bed. I can’t get far because she is tethered to machines. I hold her until my butt is completely numb and my shoulders ache from not moving. When she is comfortable and at peace, I don’t move. Sometimes I put her up under my shirt, her sweet skin against mine.
And in between the dark, suffocating moments, are the moments when I actually am present. It has been uncomfortable for me to feel weak and hovering and desperate about needing a map of this experience when no map exists. I am not usually like that and I wish I could just be. I have felt so ungrounded and when I have the infrequent clear moments of awareness, I feel peace. I notice the core part of myself is still there. Today my therapist helped me realize that now is really all any of us know. And right now Ruby’s hair is getting redder by the day and I get to be with her all the time. Right now we are swaddled in thick love. Right now there’s a lot of Hope coming from Ruby’s incredible staff of doctors and nurses and respiratory therapists. Right now I have had the privilege of birthing and knowing two girls who have brought me so much joy.
I slept at home again last night. I pumped, drank a giant martini, sat on the couch with my mom and Andy’s mom in the light of our christmas tree. I wished it was different. I hoped for clarity with what this lesson is all about. I scooped Margot up and she woke and said, mama’s here and touched my face. She has been so courageous through all of this. Yes, mama’s here baby. And we laid in my bed together next to the empty bassinet whispering its loneliness. I was curled on my side facing away from Margot and I felt tears coming again. I didn’t think I had any left. And then Margot reached her arm up and over my shoulder. I thought she was asleep and had unintentionally rolled into me but her breathing indicated she was awake. Bug? I said. Hi mama, she said. Are you giving me a hug?, I asked. Yes. Hug. And she stretched her little arm over my heaped body and squeezed, spooning me.