Don’t Say a Word (Hush, Little Baby)
As parents, we all like to believe that we don’t play favorites or occasionally misread our children or once in a while get too occupied with our own priorities and accidentally ignore something momentous to our children. We’d feel better about ourselves at night if we could manage to convince ourselves during the day that we’re doing enough of this parenting thing right, or, at least, doing the very best we can along the way.
I’ve written before about how I feel that even our best is not enough when it’s the brain and life of another, innocent human person at stake. I’ve been pretty honest with others about the fact that I feel I fall short of meeting Cecilia’s needs constantly. I get told by therapists and childcare professionals all the time that I’m doing a “great” job. But what does “great” actually mean? And what is the true measure of a parent?
As time goes on, it becomes more and more clear that Cecilia is what they call a “high needs” child. It’s also becoming clear that this is not only because she is blind, but also because of what happened to her in the womb. I am still at the point where no one can convince me that the enormous stress I went through during my pregnancy with her did not impact, at the least, her seeming inability to cope with any stress, and, at the worst, her eyesight and possible kidney disease. What I know for sure is that a huge amount of brain and eye development takes place during the last month of pregnancy, and during that time I spent every single second wishing I was dead so that I could be with Lizzy.
Is it as simple as cause and effect? Do we just inevitably reap what we sow?
Contrary to what you might think, this is neither an exercise in self-flagellation nor a pointless inquiry into a series of questions that no one but God can answer for me. Instead, this is just me trying to cope with the reality that consumes every minute of my waking life.
Cecilia is what she is. She is blind. She is developmentally delayed, although she seems to have now caught up in reference to her gross and fine motor skills. She gets overstimulated very easily and takes longer than other children to calm down. She winds herself into rage and panic when she’s too tired and will not sleep when sleep is the only thing that can really help her. She needs constant input from me, whether in reference to food, reading, physical activity, or proprioception activities. I need to get done whatever I need to do in 5, 10, 15, and sometimes 30 minute increments. I have become a Jedi master of time management. Because if I slip up, if I make one mistake, she gets to a level of misery that I sometimes cannot bring her back from.
There is no room for error in my life as her parent, like there is no room for ill health. I prioritize health and nutrition the way I do because if I get sick or weak or tired, there is simply no replacement for me who can do what I do to care for Cecilia until I’m well again. Undoubtedly, there is also the fact that if I were to get her sick, I cannot psychologically cope with the fear of her dying. But the strict reality of my life is that Cecilia is an enormous amount of work, and I live day in and day out with the very real fear that I can work as hard as I’m working right now, do the utter and absolute best I can at every moment, and it will still not be enough to undo the damage that was done to Cecilia in the womb and has been done to her in and out of doctor’s offices since her birth.
I can no longer hide from the reality that Cecilia is traumatized. She was traumatized before she was even born. And since her birth, her world has become this morass of unpredicability where the one person she is supposed to trust the most can surrender her at any moment to strangers who will inject her with needles, dilate, probe, and put electrodes in her eyes, draw her blood, or cut her lips and tongue. In the short span of her very short life, I have broken her trust so many times that she no longer knows how to trust.
And so she lashes out and loses patience in the blink of an eye and kicks and screams and pushes and tries to control what she can control. And not a single bit of it is her fault.
For years, I have feared having a child with autism and stood in so much awe of those parents who must parent a child with brain damage. I try to keep those parents in mind when Cecilia is lashing out because at least she can also be loving and responsive and cuddly and hugs and holds and talks with me. It takes a truly superhuman level of love to patiently love and care for a child who is compromised in his ability to respond to your love. Still, I believe Cecilia is brain-damaged to a degree. She is brain-damaged in the sense that she has absolutely no ability to cope with any stress of any kind. This has resulted in a very high level of dependence on me, and I am trying to meet her endless need with as much patience and love as I can.
But I am not a superhero. I am nothing except a failed and failing mother trying desperately to keep the one child she has left alive. This is how I see myself. And the reality that I can no longer ignore is that I am deeply afraid that a part of Cecilia hates me, and that I can work tirelessly for the rest of her life to try to heal and make up for the damage that has been done to her, and I will still never be able to get her onto a level playing field.
Even worse, I can no longer deny how much I compare Cecilia to Lizzy in my head with a constancy that is hideously unfair to all three of us. And it’s not just about how much easier it was to parent Lizzy and how much less work she was and how perfect her vision and her kidneys functioned. It’s about the fact that I keep doing all the same things with Cecilia that I used to do with Lizzy and keep waiting for it to feel the same, and it never does. Cecilia is just different. So incredibly, unmistakably different from her big sister. Different in appearance, temperament, personality, preferences; the list goes on.
When I first started attending grief support meetings, other parents of dead children involuntarily used the word “replacement” to speak about the child they gave birth to after losing a young child. I know that I also believed, on some level, that I would regain something of Lizzy in Cecilia’s birth. But my experience has been very different from this.
The miserable thing about grief is that it finds new ways to torment you as time goes on. I can now take a step back to admit that I am grieving for Lizzy all over again in a totally new way because I can finally understand that Cecilia is not Lizzy and was never going to be Lizzy. This means that I will never get even a small part of Lizzy back as Cecilia ages and eventually turns two years old. Cecilia is wholly, totally, and unmistakably herself. And Lizzy is unmistakably gone.
Recently, I have been missing the mother I was when Lizzy was alive. I miss her innocence, her happiness, and her thoughtless optimism about the future. I miss how easy and effortless it was to love and care for Lizzy. I miss going to sleep every night not fearing for the death of the child lying next to you or mourning the child that once lay in her place. I feel sorry for the person that I was, and I despise her ignorance and faith that everything was going to be okay.
It has occurred to me more than once that Lizzy’s death has started to become more about me as time goes on. Lizzy is gone–so far gone–that now everyone is no longer worried about Lizzy, and instead they worry about me. And I, conundrum that I am, continue to provide no answers. I don’t know how to explain how constantly I am in flux, how things that used to matter no longer matter to me, how my opinions on the meaning of a human life continue to evolve.
I don’t know how to explain the choking sensation I still get every day in the middle of reading to Cecilia or praying with her or playing tickle monster. I don’t know if the visions of Lizzy that dance like shafts of light through my waking hours will ever grow less frequent.
I do know that I have finally given up on hoping that some of Lizzy will return in Cecilia. I am too familiar with the feeling of despair to mistake it for anything else. But I am also not so much a fool that I don’t throw myself with total abandon into the moments of joy that I do have with Cecilia. These moments happen every day, and I try to catch them like butterflies.
I never lose sight of the fact that Cecilia could be gone tomorrow. I never forget that if I slacken my discipline and get sick, I could miss out on a sign or a symptom showing me that Cecilia isn’t doing well. If I let my guard down, I could rapidly become too weak to respond to her needs. And so there is no room for error. There is misery and fear and the constancy of missing Lizzy with every breath, but there is also joy in Cecilia and pride in how hard she has worked and how far she has come. And I think I’m beginning to understand that these things, unremarkable and elementary though they are, are the things that actually make up a life.
Every night, I sing a book of lullabies to Cecilia in the course of readying her for bed. I don’t know where the song “Hush, little baby, don’t say a word/Mama’s going to buy you a mockingbird” came from, and I do have to say that the song makes little to no sense. And while I want Cecilia to hush when she’s crying or when she needs to wind down for sleep, I also know that I actually want her to say words: as many words as she can and as soon as she can learn them. I think that the loneliness I feel without Lizzy will never fully leave me, but I also think that Cecilia was born lonely and alone in ways I will never fully understand.
And so I want her to say words to me–as many words as she can, and as soon as she can learn them. I want to hear what she has to tell me about her experience of life, of love, of suffering and of joy. I want to tell her stories about her big sister. And I want to investigate the fragile promise that has lain between us since the day Lizzy died: that through loving those who are left to us, we can somehow find a way to keep the loneliness at bay.
