The Little Yellow Boots

It is hard for me to admit that I don’t know where to draw the line between grief over losing Lizzy and grief over losing the life I thought I was going to have. It seems beyond contemptible to be thinking about yourself, your feelings and expectations, your understanding of who you are and who you’re going to become–when thinking about your dead daughter should be consuming your every waking thought. But the reality is that the two are so deeply interwoven that it’s impossible to sort out the threads.

When Lizzy was born, I became who I was always meant to be. I think it was her presence in my life and her choosing me to be her mother that catapulted me out of the self-absorption of my life and into a profound new identity. They say that both the mother and the child are born on the birthday of the first child, but for me, it was a rebirth in every possible sense of the word. And as Lizzy grew, I began to believe and think things about myself and the trajectory of my life that became fundamental to how I related to others and to the world around me.

In the same way that you are born again when your child is born, you die when your child dies. I know no other way to phrase it. I had to say goodbye not only to Lizzy but to the mother that I was and the mother that I hoped to become one day. For weeks after her death, I could only reiterate “She was supposed to be here” and “I was supposed to have two children.”

Supposed-tos took a long time to die for me. I fought and kicked along the process at every step of the way. It was only when I was too exhausted and beaten down to keep fighting that I learned to let go of my supposed-tos. And when you finally find yourself lying shattered on that sparse, cold and echoing garage-level of self-perception, you can then begin to start thinking things like, “Who the hell am I to know what was or was not supposed to be?”

For months after Lizzy’s death, both my family and myself looked to Cece as a beacon of hope and a sort of replacement. All we had to do was wait two years, and then, effectively, we would have back what had been taken so brutally and so quickly from us. However, when Cece was prescribed glasses at four months old, this erroneous, voluntary delusion started to shift. Yesterday, Cece’s visual therapist informed me that most of the low-vision kids she works with are 20/100. The numbers for legal blindness are 20/400. Cecilia’s best corrected vision is estimated to be 20/1400.

It is safe to say that believing I’m going to get back in Cecilia what I had in Lizzy has all but evaporated.

For her second birthday, Lizzy received a pair of little yellow rain boots from her grandmother. Every morning for the next two weeks, Lizzy would roll out of bed in her nighttime onesie, walk over to her desk, and sit down to put on her little yellow boots. She would then happily tromp around the room playing, opening and reorganizing the contents of every drawer, pulling books down from her bookshelf and narrating her findings while I went about my morning routine.

This morning, I woke up and gazed around my perfectly organized and spotless room, remembering how frustrated I used to get when Lizzy would systematically re-organize each and every nook and cranny to her toddler’s precisely chaotic standards. Like so many times before, I wanted to rip and throw and unmake the probably too-organized and too-neat order of my room in a futile attempt to recapture the frustration I used to feel at cleaning up after Lizzy.

This morning, I felt sure that Cecilia, whose entire world exists in what is 18 inches away from her face, will never explore and get into drawers and be fascinated by paperclips and bobby pins and paint brushes.

This morning, I walked to put away some paperwork in my filing cabinet and gazed briefly at the width of the hanging folder containing Cecilia’s medical records, which is already at least ten times as thick as Lizzy’s was at age 2.

It is also safe to say I have let go of thinking that I can or will, in some way, get something of Lizzy back in the course of raising Cecilia.

I’m sure you will tell me that Cecilia will find her own way to explore the world in her own time and that she was always going to be different than Lizzy, and I’m sure you are right on both counts. Which brings us back to the struggle of learning how to let go of what you thought your life was going to be.

Before coronavirus quarantines, back when I used to go to mass and the grocery store, I would always run and hide from those mothers who were out with their two daughters, one toddler and one infant. I would play obsessive games where I would alternately try to guess the age of the child so that if I estimated the child was older than 2, I could relax somewhat and not work so hard to constantly avert my gaze. I would try not to blindly hate those poor, innocent mothers who so obviously and effortlessly and casually had what I was “supposed” to have.

I guess what I am trying to say is that there are no supposed-tos. There is only ever what has been and what is. There is truth to believing that we have some power to shape what will be, but there is more truth to saying that what will be more often than not just drowns us in wave after choking wave until we somehow, someway learn to swim.

The truth is also that even though some facial and bodily characteristics and mannerisms are nearly identical, Lizzy and Cecilia are radically and irreversibly different. Instead of being a happy, competent mother of a healthy toddler and healthy infant, I am a struggling, fearful, and grieving mother of a dead toddler and blind infant who may one day die of kidney failure.

The learning curves for coping with grief and for raising a child with a disability are both immensely steep, and most days, I feel I am trudging uphill from the moment I wake up until the moment I go to sleep and still getting nowhere. Self-shame and self-loathing run rampant in me, and I have to battle for personal mental and physical health alongside battling for the health and comprehensive wellness of Cecilia. And when I allow supposed-tos to complicate this already complicated mess, I have a tendency to want to fall apart.

So how to manage this pathetic weakness? One: get out of bed. Two: brush your teeth. And as for numbers 3 through 50: keep doing small, manageable tasks in small, manageable increments until the momentum builds and you start to feel like maybe you are learning and accomplishing and progressing after all. Take such moments to heart as when your physical therapist tells you your daughter is “blowing her mind” with how much progress she’s made.

And let it be a good day when the nephrologist calls you and tells you your daughter’s blood work came back normal.

I don’t think it will ever actually be okay that I no longer wake up to Lizzy pulling on her little yellow boots. I don’t think that the fact that they are sitting neatly on a shelf with her other things or that her pink play stroller now has cobwebs on it will ever stop hurting. I don’t know if I’ll ever get more convincing in swallowing my pain and fear when I greet a yawning and cross-eyed Cecilia and tell her I hope she slept well and I’m excited to spend the day with her.

I do know that I have to be stronger than I am right now for the sake of both of my daughters. For Cecilia because she so desperately needs me in so many ways and for Lizzy because she deserves a mother who can honor her memory without failing and without falling apart. So tomorrow, I will try to learn from Lizzy and greet my day by rolling out of bed, putting on my favorite clothes and tackling my work with her inexhaustible thirst for life.

Maybe this way, those little yellow boots can haunt me less and inspire me more. And maybe this way– eventually–I will one day wake to Cecilia rolling out of bed, navigating her way by feel to the place where she last left her favorite shoes and grinning widely as she pulls them on.