I'm Glad My Daughter Doesn't Look "Sick," & I Hate Myself For That
As parents, we feel so many different types of guilt. The I-Have-To-Go-Back-To-Work guilt. The I-Was-Too-Busy-Looking-At-My-Phone-When-You-Rolled-Over-For-The-First-Time guilt. And my personal favorite, the completely unwarranted and uncontrollable, Something-Happened-To-You-Outside-Of-My-Control-But-I-Still-Feel-Horrible-About-It guilt. When my daughter was diagnosed with four congenital birth defects at my 28-week ultrasound, I felt guilty at the thought that I'd somehow caused her disorders. When I worried about all of her birth defects and how different they might make her, I felt guilty for the ableism in my fears. But now that she is here and her prognosis is better than any of us expected, the type of guilt I feel is as surprising as it is destructive. I am so glad my daughter doesn't look "sick," and I hate myself for feeling this way. Although her birth defects are scary and their affects potentially devastating, she doesn't look sick, and I'm glad.
Our daughter has four disorders to contend with, but her first diagnosis was agenesis of the corpus callosum, a disorder where the nerve fibers that connect the right and left hemispheres of the brain failed to develop, obstructing her brain's ability to send messages back and forth. Characteristics of this disorder are vast, but not all encompassing, and can include: delays in reaching developmental milestones, like walking, talking, or potty training; poor motor skills; or difficulties with language and understanding sarcasm or subtleties. But she also lives with colpocephaly, neuronal migration disorder, and septo-optic dysplasia. All are instances where a part of her brain failed to develop fully or properly. Symptoms can range from more difficulties grasping language, to a non-verbal learning disability; seizures, ranging in severity; blindness, or difficulty seeing; impeded pituitary gland function, and more.
A part of me sees her potential symptoms as disabilities instead of differences or diversity. Not only does it make me a poor intersectional feminist, but it implies that I see some of my daughter's experiences as inferior simply because they will be different than my own. I've often wondered, what kind of mother thinks this way about her own child?
However, depending on the cause of these defects — like, a genetic glitch, or an underlying chromosomal abnormality, like Andermann syndrome or Aicardi syndrome — and how an individual's brain adapts to these defects, a person may experience all of these symptoms, some of them, or none at all. In fact, there are people walking around right now who have agenesis of the corpus callosum and don't know it because they've never experienced symptoms severe enough (or any at all) to alert parents or doctors to anything more. These people may only find out they've been walking around their whole life missing a piece of their brain because they needed an MRI for an unrelated reason.
For all this talk of her perfection, there may come a day when suddenly her miracle will end. A neuron may misfire and she might seize. For all her current cooing and babbling, she might not speak.
My daughter, however, is not one of those people. She will grow up knowing that, most likely because of an error in her genetic code, her brain will always be different. When I was pregnant, our doctors told us that we had no way of knowing how her disorders might affect her, which left us in a sort of limbo, waiting to see if once delivered we would have a "normal" baby or have NICUs and testing and surgeries to deal with. But for reasons we don't know, my daughter has never experienced any of these symptoms. Not one. Since her birth she's been asymptomatic. Family, friends, my partner, and I agree all that she is a kind of miracle; my little girl with her smile so big and her growth off the charts and her team of doctors who all say she is doing so well. One of them even said — and I swear I am not making this up — that she is perfect. I can't help but agree. She is "normal."
No matter how horrible it might make me, every time I hear another parent explain how their little one suffers because of these disorders or some other disease or condition, there is a part of me — a small, shameful part — who can't believe how thankful I am that it is not my daughter.
For all this talk of her current perfection, there may come a day when suddenly her miracle will end. A neuron may misfire and she might seize. For all her current cooing and babbling, she might not speak. Grasping abstract concepts might be difficult, making subjects like mathematics, languages, or science close to impossible for her once she reaches school age. She might be awkward and clumsy in a way that sets her apart from her peers. So many things might be different in a year, or two, or 10. It might happen tomorrow. It might never happen, but I can't help that little whisper of fear even when I realize how lucky we are right now. And I feel guilty for not appreciating how good we have it when I know it could be so much worse.
But to fear the day when all this good might turn bad admits an ableism in my thinking that, despite my activism and my fight for inclusion, I cannot shake. To fear the affects of her disorders acknowledges that I see something inherently wrong with them; that something needs to be fixed in her. It means that a part of me sees her potential symptoms as disabilities instead of differences or diversity. Not only does it make me a poor intersectional feminist, but it implies that I see some of my daughter's experiences as inferior simply because they will be different than my own. I've often wondered, what kind of mother thinks this way about her own child?
My last trimester of pregnancy was filled with doubt and fear and unknowns. A time I should've spent in joyful anticipation, I spent emotionally drowning in panic. I think that's when I created a little hole in my heart, a place where negativity and shame lived. A place where I believed I was responsible for my daughter's disorders no matter who told me differently. Where I kept my darkest thoughts and pressed labels and unrepeatable words onto her fragile, unborn skin. Where, yes, I felt disappointment that my daughter would be different.
I've read discussion boards filled with so many beautiful little babies who were born much worse off than my little girl. Boys and girls who will — definitively — never take their first steps. Little ones whose mothers will never hear them say, "Momma." They live from surgery to surgery. They take handfuls of medications to prevent daily seizures. And it is a stark and sobering reality that some of those beautiful little babies die. No matter how horrible it might make me, every time I hear another parent explain how their little one suffers because of these disorders or some other disease or condition, there is a part of me — a small, shameful part — who can't believe how thankful I am that it is not my daughter. And for that, I feel guilty.
The worst thing about guilt is that it is, at its best, unproductive, and at its worst, destructive. As my daughter approaches her first birthday, I decided I was ready to get off this carousel of feeling bad and then feeling bad for feeling bad. I cannot count the number of times I've asked myself: Why is her prognosis so good while others are not? What makes our family different? And I am not sure there is a better answer then: Just because it is. I am sure that feeling bad about my daughter's health won't improve another child's situation, and I know that feeling bad about feeling bad only makes me feel worse.
Now, however, I'm ready to fill that hole in with something infinitely more positive. I'm ready to exchange my guilt for gratitude. Because I am sure that no matter how poorly another ACC baby's health is, that baby's mother is just as grateful for her child as I am for my own.
To be honest, my partner and I don't know why my daughter is doing so well. Neither do our doctors. We don't know if one day she won't do so well anymore. Our lives are full of unknowns. I hope that, if the time comes, I'll remember that just because my daughter lives a different experience than my own, doing so doesn't make her worse or better. It just makes her different. And when that time comes — if it comes — I hope that I remember that different is OK. I hope I remember to ask for forgiveness from every mother in my shoes and to myself. I hope that, if my time comes, they will know how sorry I am that their baby suffered while mine didn't; how sorry I am for thinking thinking Thank God, it's not her. Because I've learned that, your baby or mine, we are all in this together; mothers of sick, healthy, and angel babies. And the only thing we are truly guilty of is loving our children so much it hurts.