We had pizza the night before. A gluten and dairy filled comfort I hadn't eaten in ages. My nerves crackling beneath my skin, I inhaled every salty bite. We huddled on the couch and every time he would get up - to do normal puttering about the house things - I would try to stop myself from asking - where are you going?! Don't go anywhere! Don't go upstairs! Don't let go of my hand. Because we are handing her over tomorrow and I'm really scared. Lets all hold our breath until she's back in our arms, OK?
He was nervous too. And patient with me.
I can't remember exactly, but I think I cried as I gave her her bottle the night before surgery. She gobbled it so hungrily, blissfully oblivious.
I am envious of the other cleft-affected mothers who take this all in stride. Who are reassured by the routine nature of the procedures our children undergo. I constantly wonder about them - are they even real or did I make them up? I think, a lot, about the mothers whose children are sick and not getting better. I think about the mothers whose children don't visit hospitals but live within them. I try to imagine mothers forever wounded by unthinkable grief, who have lost their very hearts. And then I wrestle with the complicated balance of gratitude, compassion and guilt. My Catholic roots have a tenacious hold - always with the guilt.
The week before surgery I was consumed with fear that I would never see her again. That I would hand her over and a somber face would tell me that something went wrong, that she would never wake up. A ridiculous fear in the realm of true risk. But, for a very, very few, it has happened. I would be doing the dishes, playing with my girls, watching TV, reading a book, or some other mundane task and for a tiny moment my heart would stop and my hands would turn to ice and I would feel the imagined terror of losing her. And then I would berate that horrible fear for snatching at my precious time. Fuck you, Irrational Fear.
I woke reluctantly that morning - Lucy normally brays like a wild animal for her morning bottle and breakfast, but was disoriented by our rush to the hospital. She was easily distracted by novel items and rather subdued in her dehydrated state. This was preferable to the imaginings I'd had of her angry, hungry pre-surgery cries.
As we drove to the hospital I forced myself to consider what an amazing day Today was. Today someone would find out that after years of yearning, they were pregnant! Someone, somewhere, would be told their cancer was in remission. Somebody would finally hold, today, the baby they had dreamed and hoped they would be so blessed to adopt. Today, a teacher was going to whisper the very words a child needed to hear to change the trajectory of their development. Today, my baby girl, was going to have her palate closed, because that needs to happen, and we are so very lucky to live where that is safe, affordable and possible. Today, was a very, very good day. I hated today.
My hands shook when I changed into my scrubs, knowing soon my arms would be empty.
I felt sick as they wheeled us down to the O.R., but happy to have her solid, quiet warmth in my lap.
They said things to us that I don't remember. Soon, I was carrying her, wanting to stay wrapped around her, wishing to shield her and take her back home, dreading the sound of her pain when she next awoke… but my feet carried us forward.
She complained as the gas mask was placed on her face and I kissed her sweet head as she became quiet and eerily still. Her eyes didn't close. The anesthetist's red painted fingers closed her blank stare while I kissed her once more. I heard her call kindly after me as I was leaving, "Oh! Please don't cry!" And that made it feel normal. The energy in the operating room was calm, mildly upbeat and matter of fact. The perfect contrast to my mounting distress, making my anxiety seem slightly ridiculous. A welcome perspective.
He was waiting anxiously for me full of questions about how she did. We had a long, long hug in the empty hallway before busying ourselves with distraction.
I tried to dive hard into the wait before us, determined to force it along faster. My stomach knotted as each moment stubbornly stretched out longer than the last. With my arms achingly empty, my mind noisily spinning, we read all of our emails. And even found ourselves laughing out loud. Thank you.
And then it was thirty minutes past our quoted wait time. I tried to keep my body still though I wanted to sprint through the hallways and pull back all the curtains until I found her. Where was she? What had happened? Were they trying to figure out how to tell me something had gone wrong? Was she bleeding? I tried not to think about blood. It was her airway - she couldn't breathe. They were taking her back to the O.R., weren't they? Was she having a bad reaction to the anesthetic? Was she crying? She was crying somewhere, I knew it, but I didn't know where. She needed me and I couldn't hear her and I didn't know where in the building she was, and she was due back and she was late and WHERE WAS SHE?
Once again, I heard her before I could see her. That moment, a gut-wrenching peak of distress for me. I could hear her trying to cry, through her dry, barking cough. She sounded nothing like her, but I knew it was her. That?? He asked me. That isn't her, that is a sick baby, not our baby, he told me. But I knew it was her.
After a few moments of listening to her bark and struggle and cry from the hallway, they told us we could go into the ICU and see her. She came out of surgery with croup, a reaction to being intubated. She was disoriented, uncomfortable and dazed. I snatched her up and for a brief moment, before the intense effort of feeding and pain management took over, she was simply heaven in my arms. My girl. Safely delivered.
Lucy's surgery was uncomplicated. The only hitch was that she was so dehydrated before surgery that it was delayed for 30 minutes while the anesthesiologist struggled to secure her IV, finally relying on an ultrasound to find a vein. Though, I didn't know that until much later.
It was a typical recovery I suspect. She cried at her bottle. She cried at the cup. She choked instead of swallowed - our anxiety intensified with the sound of her struggle, but we had little time to focus on that.
As in previous experiences with Lucy, her IVs caused the most trouble. In the wee hours as that long, long day crept into the next, I was told to leave the room while the nurses attempted to replace the IV she had ripped out. They promised me they would sedate her. I listened from the hallway, while time crystallized, as she screamed frantically. A lifetime passed and she became quiet. When I finally returned, their attempt had failed. She had had an allergic reaction to the sedation. She whimpered softly, exhausted. Hours later the intensivist was able to secure an IV. Which she ripped out a short while later.
After one night in ICU we were moved to the regular paediatric ward. I was sad to kiss him goodbye… though it made sense for one of us to sleep well at home as there was no room for him to stay overnight with us.
Two friends, who I will be forever grateful to came to "visit" us that night. Despite the fact that I barely managed to make eye-contact with them. Despite Lucy's intermittent wailing. Despite their own children waiting for them at home. They stayed, blessedly, much longer than I expected. I tried not to panic when they left. I also tried to put Lucy to sleep. About 100 times. It never worked. Literally, it never worked. She did not sleep. Whether it was the anesthetic leaving her system, or the morphine flowing through it, she went bat shit crazy.
My sister came late that night for a couple of hours to relieve me from pushing her, endlessly in the stroller. I laid down for 45 minutes, wanting to find death for two hours but barely able to close my eyes. When my sister left, I continued to push her in the stroller, hoping to lull her to sleep. But it didn't work.
Eventually, at 4:00am she found some rest, and I managed a single hour of broken sleep.
It was 48 hours before she would swallow. From there the going was slow, but steady. For the next 10 days she astounded us with her high spirits. She fussed at her food. We fussed over hydrating her, and hovered constantly to ensure she didn't fall awkwardly on her arm splints or ruin her sutures when her hands were free. She could not sleep for longer than an hour at a time for days, infuriated by her arm restraints. But we were happily shocked by her chipper nature during her waking hours. Her many, many waking hours.
Within two and a half weeks she was recognizable as her sassy wee self.
And once again, Lucy lit it up - all of it. The very best of ourselves, her sweet sister, our beautiful friends, our family, shone all around us. She arrived as my solar flare, and each day she burns ever brighter. This was not the last surgery, or the last hurdle in this unexpected subplot to regular life. But we are going to light it up every time, aren't we Lucy June?
Yet, I am surprisingly sad. Each day has been an active struggle or a quiet celebration since Lucy's arrival. The Herculean efforts to initially feed and comfort her, struggling with hospitalization for RSV, celebrating our "just in time Christmas!", bracing for surgery, recovering from surgery, celebrating after surgery, joyously acclimatizing to "normal", struggling to continue to pump, finally - finally - quitting pumping, celebrating the accomplishment of a year's worth of milk, celebrating a year of her beautiful life, struggling to face another surgery, celebrating the recovery of another surgery… it has felt full-on. There was no time to cry, there was little time to breathe…
My heart is happy, but I am sad. Surprisingly sad. Actually and truly surprised by my sadness! The driving quietly in the car burst into tears out of nowhere kind of sad, where it occurs to me - my girl! Her mouth didn't form like it was supposed to! Like I meant for it to… I'm sorry, sweet girl. I will look at the leaves changing colour and remember this time last year. My chest will burn remembering how much I wanted to keep her there, when instead she was in NICU those precious first days. I will marvel at how fast she's grown and suddenly choke on the loss of being unable to breastfeed my little girl, my last baby. Or I will be happily climbing into my bed, tired from the day and sudden tears will hit my pillow as I see her, her beautifully crooked nose at nine years old and she is sad because someone has made fun of her. The gap in her gum line the source of pointed questions, my heart clenching with the uncertainty of how she will navigate those moments, how it will or will not (I desperately hope) saturate her sense of self. My sweet, beautiful girl…
It has been a relentless pace, rocketing from struggle to celebration since April 19, 2012. As ever, on this path, I remain suspended between gratitude and grief. I feel embarrassed by my deep fatigue, surely it wasn't as draining as my body insists it has been? I feel ashamed of my sadness, surely I am dramatizing our story?
I have decided to follow her, my little light, as I slowly regain my equilibrium. I will allow the sadness, simply because it is there, but I will also allow her to brighten it and, as always, continue to broaden my perspective. The echoes of her baby cries, those helpless hours of hunger when I couldn't comfort her still resound in my mind… but her happy chirping voice is the soundtrack of today.
In between every blessed moment of our lucky life, your mama is a bit sad, Lucy June, that I couldn't have made it perfect for you. Like I wanted to, so badly. And in between our many cuddles and inane games, Ava Soleil, I am bone tired from trying to ensure you know that your light shines as brightly in my heart as it ever has, my special girl.
Thank you, my girls, for making all of these tears I didn't know I had left to fall, feel OK, even if they catch me off guard. Because of both of you, it really is OK. I will let go of every one of them, knowing that as soon as it has been wiped dry, there are your smiling noisy faces saying ridiculous things, leading me with your questions and demands into the next moment that we are so mind-blowingly lucky to spend together.
Always, always ~ thank you, you perfect, beautiful tiny humans, for being mine.