Photograph by guest arts editor, Colin Grubel.
Read about the art selection process for this piece here.
Remember, you’re both finally home. It doesn’t matter that you couldn’t see your daughter’s face after the emergency c-section. The nurses took away your contact lenses; the pediatricians whisked her away to the Neo-Natal Intensive Care Unit; the surgeon sewed up your abdomen, and you couldn’t move even if the anesthesia hadn’t cut off all sensation from below the neck. Hours later, when you went to her incubator your daughter’s eyes were covered with pads as protection from the bili lights needed to treat jaundice, and her nose and mouth were covered by a CPAP mask to help her breathe. You saw her face weeks later. Remember now she’s finally home. Don’t feel guilty. Inadequate. Alienated. You have more important things to worry about. You’re an inexperienced mother. She’s an atypical child.
She can’t suck from a breast. She struggles to suck from a bottle. She throws up what little milk she can swallow. She was six pounds when you brought her home. She’s not growing. Remember not to yell at the well-meaning friends and mothers-in-law and doulas, who lecture about feeding-on-demand and letting her signal when she wants to eat. They mean well, even as their eyes glaze in confusion, or they look away, or they lecture you again about feeding-on-demand after you explain, again, that she can’t coordinate breathing with swallowing, that every swallow is as if she’s choking, that she eats the bare minimum she can to survive and throws up most of that because she was born three months early weighing one pound, 11 ounces and her gut just isn’t ready, she was throwing up all the time in the hospital too, and if you fed her on demand she’d starve.
Forget your longing to breastfeed. Remember as you sit with your breasts clamped to the Medela pump five, six, seven, eight, nine, ten times a day for thirty or forty minutes a session that what’s important is the breast milk rich with your immunities that will go into the bottles she can barely suck to become the food she throws up. Not the closeness of her skin. Not her eyes locked on yours. Not the two of you. Quiet. Together. Not the months in the hospital where heart rate and oxygen monitors went off all the time and nurses walked in whenever they wanted. There are other ways to bond. Remember that after a nasal-gastro feeding tube is placed down her nose to run down her throat, down her esophagus, and into her stomach, and her face is covered with tape so she can’t pull the tube out. She pulls it out anyway. You put it back down her nose. She screams. She pulls it out again; you put it back again; she vomits so hard the tube is pushed out again; you put it back again and put on more tape until half her face is covered with tape, and the tube comes out again. Remember those other ways of bonding when that tube is replaced with a surgically implanted gastro tube that puts milk directly into her stomach. Remember your priorities. Her health. Her growth. Your marriage rent by arguments and isolation. You give up your business; your husband works one-quarter time to keep the health insurance; you go on food stamps and WIC and burn up savings to stay home and take care of your daughter who can handle small amounts of food throughout the day and night but not so much food at any single time that she throws up, but she does that anyway. She throws up so much she becomes orally averse and won’t let food or water near her mouth. Remember there are other ways of bonding. Remember this when you buy high-necked shirts at Goodwill for $2.50 to wear when you hold her and she vomits up all the breast milk you pumped. Remember: this won’t last forever. And it doesn’t. Just four years.
Remember: you don’t have it so bad. She’s not blind and she’s not deaf and she’s not deaf-blind and she’s not autistic from her premature birth and her lungs work fine and her intestines weren’t rotted away from massive infections and she didn’t need heart surgery and she didn’t need shunts to drain off fluid because she didn’t have hemorrhages in her brain. Plenty of parents have it worse. Remember to be grateful. Remember to be quiet. You’ll meet those parents who have it worse. What can you say then?
Remember there will be many things you don’t want to learn. You have to learn them to be a good mother. To be a good mother is to learn when you’re being lied to.
Remember this when the nurse nods sympathetically and murmurs “umm, ummm, ummm,” and says: No. Remember nurses don’t provide patient care. Nurses provide doctor care. The care the doctor needs is to not be bothered by the patient. The doctor practices evidence-based medicine and according to the studies your child will respond to this treatment in a certain way and that medication by a certain time. If she doesn’t there’s nothing the doctor can say. See another specialist. Remember to look away when a social worker smiles at you and tilts her head agreeably and looks you right in the eyes (remember, staring is a sign of dominance) and in the friendliest of voices orders you to shut up or go away or do as you’re told because she knows more than you do about what you need. Remember not to blink. Remember to keep your voice steady when you’re in the pre-op room before your daughter’s next surgery and you tell the doctor that she’s not understanding your child, your child doesn’t fall within the statistical results of evidence-based medicine, that there are other studies you’ve read, other parents you’ve talked to, other reasons why you’re concerned. Remember to look at the doctor. Remember to speak to the doctor. Remember not to respond to the nurse who calls out, you sound scared, you sound worried, it’s so hard isn’t it, how are you feeling?
Remember The Lives of Others, the film about life in East Germany before the fall of the Berlin Wall. Remember how the Stasi conduct their interrogations: the same question again and again and again and again and again and again and again and again and again and again and again. The person breaks. The truth is told. Learn to ask the pediatric neurologists, the gastrointestinal specialists, the social workers, the feeding specialists, the surgeons, the nurses the same question again and again and again and again and again and again and again and again and again and again and again. Remember that the doctors and educational psychologists and other specialists will talk to your PhD husband as a peer and ignore you even though you’re coordinating the care and doing the home-based therapies and researching the techniques they don’t want you to know about and talking to other parents about what really needs to happen. Let your husband ask the questions. Take notes and smile and listen and plan what you’ll do next.
Remember to adjust your priorities: the book you’re trying to write; the degree you’re trying to finish; the other child who needs your time and love and attention; the other child you’d love to have but can’t with all this chaos and confusion. Remember it’s okay to want your life back, the life that made sense, the life of reading novels and meeting friends and wandering Saturday afternoon yard sales and the other small graces of daily freedom. Don’t mourn that old life when you drive your daughter to the occupational therapist, the developmental pediatrician, the pediatric ophthalmologist, when you’re sitting in a cramped waiting room filled with mothers talking but you’re trying to write your book, or finish a job for a client, or balance the checkbook but you have to bring your daughter to gymnastics so she can develop balance and coordination, and to Kindermusik so she can build her speech skills by singing, and your daughter needs to learn that other kids can sing the alphabet song and recite the letters. She can’t sing the alphabet song. She can’t recite the letters. Those wonderful teachers at the developmental pre-school say don’t rush, don’t worry, some kids get their letters late, and the teachers are so dedicated and skilled that your daughter is doing great, better than you could have hoped, but something is wrong. You don’t know what. You don’t know that in a few years “dyslexia” will join the list of your daughter’s diagnoses. Remember to trust what you don’t know.
Remember to find other parents who are doing it also. Find listservs for parents of preemies. For parents of kids on feeding tubes. For parents of kids who have sensory issues or chronic constipation or medical conditions you never knew existed until now it seems like every child everywhere has that condition. Find Facebook groups. Find out what a blenderized diet is and how it stops vomiting in kids with g-tubes and how thick the blend really needs to be to stop the vomiting. Get other parents’ blend recipes with wild salmon, organic spinach, quinoa, and cod liver oil. Get rid of the clinic dietician’s recipes where fiber comes from the crust of white bread. Find out from parents which occupational therapists do hunger-based weans. Don’t be surprised to learn the occupational therapist who does this works in the same hospital, the same department, possibly even shares the same office as the occupational therapist who said that no one does hunger-based weans. Remember, when the insurance company only provides ten feeding syringes a month and the hospital says there’s nothing to be done but buy the other twenty you need each month at full (and expensive) price at a medical supply store, ask other parents what to do. They’ll tell you how to get veterinary syringes that work great and last forever and cost nearly nothing. Find out from other parents how Individual Education Plans work and what the Individuals with Disabilities Education Act says and what you need to say to get your child into a developmental preschool and what the school district has to do not just what they’re willing to do.
Remember, a good mother kicks ass. You’ll be told you’re bitter. Angry. Don’t you know when people are trying to help you? You’re a bitch. A helicopter parent. Remember, a good mother kicks ass. Remember this when you’re told you’re over-protective. Remember this when a doctor says not to love your daughter so much because it will only hurt her. Remember this when a speech language pathologist tells you to stop trying so hard and just enjoy your daughter. Remember you’re not making any of this up. Remember that you will be blessed to meet brilliant and compassionate people – doctors, rehabilitative specialists, nurses, so many others – who kick their organization’s ass or go into private practice or just do the best they can even when they’d rather call it a day, and who believe that every child has a right to go beyond what’s expected and past what’s thought possible. They will tell you the truth. They will tell you the truth you may not want to hear. Remember one truth you must never forget: the more aggressive the parent in advocating and securing services, the better the kid does.
Remember all this. Remember more than this. The day will come when it’s time to forget. The day she goes into the kitchen and eats. The day she runs down a hall and turns a corner and doesn’t lose her balance. Doesn’t spin like a top. Doesn’t crash into a wall. The day you take the foam padding off the walls. The day she speaks in sentences instead of smiling and saying “ummm, ummm, ummm, and, and, and you know.” The day she picks up a book and reads on her own. The day she gets 100% on a math test and is invited to join Star League at gymnastics and your husband starts believing she can go to college. Remember these days. Remember the ones that came before. Remember you’ve left one country for another. First you lost your native language; then you learned to speak in a new tongue; now you must discover still new words. You’ll see the surgical scars others think are weird birthmarks. You’ll notice the stumble in such an active girl. You’ll know why she’s so petite. All this and more will be a history invisible to others. Remember not to mention it. You don’t want other parents and teachers and strangers stereotyping your child after all you’ve been through to have her be just another kid. A good mother talks about it only to parents who traversed that invisible terrain. Remember not to say too much. Remember they probably had it worse. Much worse. In the silence of this new land there will be so much you can finally forget. Remember not to forget.