I Arise Today

It is useless to say pain is like a shadow even though pain has become as constant and understated a presence as my shadow. It is pointless to utter that grief is like an amputation even though living without Lizzy is like living without an arm or leg; I have had to learn how to live differently and live a life that is perhaps less full or complete or human than it once was. These things are pointless because my grief looks nothing like it did after Lizzy died. It has evolved, and with it, I have evolved.

This Saturday, March 20, Lizzy would have been four years old had she lived. Two years ago, I was planning her St. Patrick’s Day birthday party and baking her a flourless carrot cake sweetened with dates. There is no getting around the pain of knowing that I will never see a four-year-old Lizzy hold a nearly-two-year-old Cece in her lap and read her a book. I will never see them hold hands or hug or fight over a toy. I will always be haunted by the big sister that I know Lizzy would have been to Cece had she survived to be given the chance.

After Cecilia was born, I spent my nights waiting for her to fall asleep so that I could sob silently and endlessly into the dark and spinning ceiling. I hoarded my grief throughout the day, trying not to let it consume me until Cecilia was asleep. It has been many months now since I cried myself to sleep next to a silently breathing Cecilia, but I did this last week.

It is not even that I no longer cry; I cry at the most inconvenient and unanticipated of times, when the sheer gravity of Lizzy’s absence sinks claws into my heels and pulls me through the floorboard, freezing me in time and space. It’s more that I’ve become so accomplished at accommodating that pain into my daily schedule that I can sweep a concerned Cecilia into my arms and speak comfort to her without a hitch in my voice. My pain has become so intensely personal that it is hidden even from those closest to me and so brutally constant that few experiences stand to compare.

Grief, like death, immobilizes the griever in eternity. It is Lizzy’s birthday in three days, but Lizzy will never be older than two. Grief, like life, propels the griever in time, forcing unconscious and unwilling evolution despite the eternity that swirls at your core, raging and unchanging.

My grief looks nothing like it did in those shadow days after Lizzy’s death and before Cecilia’s birth. I am no longer the pregnant woman doubled over in labor, sobbing, “My baby, my baby, come back to me,” because all she can see is the face of her dead toddler. I am not even the mother I was a year ago when NIH told me that Cecilia will likely develop kidney disease at some point in her childhood, in addition to her being blind.

The version of myself that lived when Lizzy lived died the day she died. I was un-real and un-alive for a month, and then I was born again the day Cecilia was born. But I was born to a new version of myself, a version too motivated by fear to stand or walk or speak. Like an infant, I had to learn these things again, slowly and shamefully. I ricocheted between nightmares and memories, bouncing like a child’s ball between the doctors and specialists and therapists who kept telling me something was wrong with my new baby.

But something changed the day they diagnosed Cecilia with Senior Loken Syndrome. I think, in some way, I was born again that day. I made a decision for myself that I could no longer tolerate and accommodate the fear and shame that had become the legacy of Lizzy’s death. That Cecilia needed a stronger mother to get her through whatever was to come. That I needed to become someone who would fight and think and dream–someone that could turn my inevitable failures into strength.

I haven’t looked back. I don’t think fondly of the Caroline that half-lived after Lizzy died, and the Caroline that lived when Lizzy lived was a mere child in the sunlight. My grief looks nothing like it did in the early days, but it is there with me, constantly.

I read. I research. I ask questions. I write. And I mother. I do not stop, and the pain is no longer capable of stopping me, no matter how much it tries. The mother that Lizzy deserved and that Cecilia needs is perpetually on the horizon, and there is no room for complacency.

I think there is an unspoken story hidden behind the false smiles, the wrinkles, and the rolling eyes on every human face. There is no quantitative tool to measure human pain. I know that for me, the everyday lives and experiences that others take for granted sometimes feels like shredding my palms against razor blades. But sometimes it is those who have experienced the most pain who are the most incapable of publicizing it.

If you are one of these people, or simply someone who is lost in grief without knowing how to take the next breath, I have these words for you: I am approaching the second anniversary of my daughter’s death, and my grief looks and feels nothing like I thought it would. My pain has grown in power and profundity, and somehow, in the process, become much less visible. It has taken the form of research and become a sort of intellectual crusade for truth and meaning and justice. There is little in it that matches the contemporary definition of grief.

In three days, I will drive to my daughter’s grave and read her favorite books to her little sister at her graveside. And then I will drive home, listening to a book on brain plasticity, and Cecilia and I will make dinner and go to bed as usual. There is nothing extraordinary about me or about my process, and it has no bearing on the cacophony of pain, condemnation, terror, and despair that still swirl, howling, on the fringes of my consciousness.

I walk minute by minute, and when I scream, I scream silently. Time has taught me that my pain is too heavy for others to bear, and it was never fair of me to ask them to bear it in the first place. It has been given to me, and it has taught me strength, all unwilling.

If you are reading this and strength is the last thing that you feel, I will tell you that it comes at the bottom of the darkness. It comes when there is no choice but forwards or upwards. It comes when your pain is so enormous, it is better to focus on alleviating someone else’s pain, even if only for one moment. Strength is willed, minute by minute, day after endless day. There is a horizon worth walking towards, even if the sun is likely to set before you reach it.

The choice is one of stamina, and it may be the only thing that remains to you. Do not measure yourself by the metrics of this world, for no one dwells with you in the darkest corners. Only you can gauge what fortitude was required for you to take that next breath. And only you can decide to use your grief to kindle a fire–or remain shivering in the night.