I don’t fall asleep as easily as I used to. Who does? (Oh to return to February 2020!) Last night I drifted off reading a new mystery novel I’ve only just started. Only to be jolted awake at midnight by my eighteen year old tripping over a box of books and hand weights on the floor of my room.
I groggily shouted “this better be an emergency!” Lest you think me harsh, dear reader, please understand this is approximately the 2000th or so time he’s woken me like this and it was, in fact, an emergency worth waking me up for approximately five or six times.
“Well,” he said, “it’s just that. Just that—“
“Just that what?!” I screamed
“I can’t stop thinking about where did all the dark chocolate peanut butter cups go?” He said this with a bit of a whine.
“Your brother ate them,” I bellowed and then “good night.” He went to talk more when I said “good night” over him several times until he left.
If you’re still thinking I’m harsh, okay, you’re right. He didn’t deserve to be yelled at like that.
What I find myself wrestling with is my special needs son becoming an adult who will likely live with me the rest of my life. The vast expanse of adulthood before us, an endless succession of very similar presents.
As kids grow up, they go through stages where they pull away from us and then come back. Toddlerhood, kindergarten, adolescence, going off to college. It’s bittersweet as a parent. But I’ve always found it much sweeter than bitter. The idea of taking someone from 2 cells to a fully launched adult is the most incredible thing a person could ever do.
Watching your relationship with your child come to an end as it’s replaced with an entirely new one. Less purely dependent, but with new needs that are more complex. And knowing that, with each successive stage, it becomes more and more of a choice for them. Will they let you in now that they have a world you’re not always a part of, an ever increasing level of privacy, a greater internal world and sense of who they are? If they don’t choose you, what will you do? And so, when they do, you’re grateful they’ve chosen you. Because they didn’t have to. And maybe you did something right as a parent after all.
So, what then, do you do with a child who will never launch? Who remains at a particular level of dependency indefinitely. I know I’ll figure this out. But it’s hard. His younger brother is almost 17 now. PSATs and drivers permits and what colleges should he apply to and all of that.
I felt bad for yelling at him. I texted his dad and told him about it and said I don’t know how to stop resenting this situation. And I need to. And as we were typing about it I found myself typing that every time 17 hits a milestone I know 18 never will, it’s hard.
For who, he asked
For me, I replied. Maybe it is for 17 too. I don’t know.
I remember the day 17 passed 18 up developmentally. I remember that it hurt. And I remember that is confused 17. For years.
They were both potty trained on the same day. 17 could have been a year before that but he held off until his older brother was ready. That’s how I remember it anyway. Maybe it’s just a story I tell myself so that this all makes sense.
18 loved cars and trucks when he was little. And it broke my heart to tell him he’d never get to drive. But it didn’t bother him. Now 17 is old enough to drive and doesn’t seem particularly interested. I told him he has to get his permit by October 31st. He’s dragging his feet. It’s important he take that step, become that much more independent. So I push. But the truth is, I am sure I will cry when he starts to drive. Because 18 never will. 18 doesn’t care. He has no desire to drive. So why can’t I let these feelings go?
When our kids pull away at these different stages, it’s scary but exciting for them, and we need to be there, letting them know they’re safe, that we’ll still be there when they come back. It’s scary and exciting for us too, though. Will they come back? Who will they be when they return to us? And isn’t that at the core of all our relationships? With children, with partners, with friends, with God? Life is growth.
And maybe that’s what bothers me, my narrow view of what growth is and how it should look. Feeling our relationship will stagnate. But there is no one right way to grow. 18 won’t grow and change in a lot of the ways his siblings will, that I did, but he will grow and change in his own way. He will still depend on me, he doesn’t really have the choice to leave and come back to me physically. But he will still have the choice, emotionally, spiritually.
And if I keep screaming at him, he very well might not choose to return to me.
And so we’ll have to work it out. Maybe I’ll put a lock on my bedroom door. Maybe he really will eventually learn what an emergency is. Or maybe I’ll learn to get myself to sleep earlier so I’m not so angry when I’m woken up for 30 seconds to answer a simple question from a man who’s grown me more than anyone else. And who keeps on growing me, even at midnight, half-asleep.
tells us that trauma is abandonment, being abandoned by all the people who were supposed to protect us, even ourselves, even God. to be utterly alone. when we shouldn’t be. when we least expected it. not knowing will we live or will we die, will this black hole we are falling into ever end.
In church
They tell us that Hell is the absence of God. No need for fire and brimstone. There is nothing worse than to be left by God. And so, trauma is Hell
In the Bible
Adam and Eve ate of the Tree of Knowledge and were banished from the Garden of Eden. Never to return. A life of toil and sickness and pain and death. Final. No way to earn their way back to Eden.
Our parents
Are the source of us. The holy Mother and Father of us. And when they unleash a rage that has no borders, we are Alone. we grow up and roam the earth, trying to find our way back to the Garden. But there is no going back
We cannot go back, only through. Onward into the valley of tears. Where God hears us and loves us but cannot save us. Where he gives us the ability to love one another, hear one another, comfort one another, but not to save one another.
Loving and saving are not the same thing. And that which your parents couldn’t give you will never be found in someone else. There is only one person capable of never leaving you, and that’s you.
I told you in the course of this paper that Shakespeare had a sister; but do not look for her in Sir Sidney Lee’s life of the poet. She died young—alas, she never wrote a word. She lies buried where the omnibuses now stop, opposite the Elephant and Castle. Now my belief is that this poet who never wrote a word and was buried at the cross–roads still lives. She lives in you and in me, and in many other women who are not here to–night, for they are washing up the dishes and putting the children to bed. But she lives; for great poets do not die; they are continuing presences; they need only the opportunity to walk among us in the flesh. This opportunity, as I think, it is now coming within your power to give her. For my belief is that if we live another century or so—I am talking of the common life which is the real life and not of the little separate lives which we live as individuals—and have five hundred a year each of us and rooms of our own; if we have the habit of freedom and the courage to write exactly what we think; if we escape a little from the common sitting–room and see human beings not always in their relation to each other but in relation to reality; and the sky. too, and the trees or whatever it may be in themselves; if we look past Milton’s bogey, for no human being should shut out the view; if we face the fact, for it is a fact, that there is no arm to cling to, but that we go alone and that our relation is to the world of reality and not only to the world of men and women, then the opportunity will come and the dead poet who was Shakespeare’s sister will put on the body which she has so often laid down. Drawing her life from the lives of the unknown who were her forerunners, as her brother did before her, she will be born. As for her coming without that preparation, without that effort on our part, without that determination that when she is born again she shall find it possible to live and write her poetry, that we cannot expect, for that would he impossible. But I maintain that she would come if we worked for her, and that so to work, even in poverty and obscurity, is worth while. -A Room of One’s Own, Virginia Woolf
I am no longer sleeping on the left side of the bed.
We moved this week to a beautiful house in the country with big, old pine trees. Like the ones I grew up playing in. It’s my forever home. It’s home. Finally home.
There is room to spread out in this house. We still spend a lot of time together but when we want to be alone, there are lots of lovely spots to go to. I sit in the screened in porch and watch the deer and the chipmunks and sometimes a fox. And my bedroom has a sitting room that I have made a little cozy gym. I have my own bathroom. For the first time in my life. I take long relaxing baths now. And I spread out in my bed and take up space. The luxury of space.
My heart has felt the words of Virginia Wolf for so many years. A room of one’s own. When I am overwhelmed by all the needs I am asked to meet everyday I find myself saying, can I just have ten minutes to myself, can I just have one inch that is mine alone. And now, now I have an acre. And a room. A screened in porch. A whole big bed. That is full. Of me alone.
I used to be afraid to be alone. It terrified me. I felt like I was falling into a darkness so deep and wide, with no bottom. That I would just fall forever. Afraid of hitting bottom but more afraid of never doing so. Its the fall that is intolerable. It’s a terrible thing to be afraid to be alone. You keep company with wolves because being eaten seems a better fate than being alone.
I used to be afraid to be selfish. To not be omniavailable (yes I just made up a word) to my kids, my attendings, my patients, my family, my friends. But that’s no good. Ten minutes to myself, sometimes hours or days to myself, is a beautiful thing that makes me a better mother doctor friend. And space. Space that is just my own. Whether it be my tree house in Jamaica or the back room of my office in Grove City or my Mini or my queen size bed.
I wish I could give this to my female patients instead of medication. Space to themselves instead of tiny falling down houses with 6 or 7 people on top of each other. Time. Without kids or work or toxic family. But a lot of them would be terrified by it. We are raised to be this way. To stay small and not take up room. To give ourselves away. Inch by inch, moment by moment. Chipping away the boundaries. To be terrified of our own freedom, afraid to declare our time and space and bodies and thoughts and feelings and wants and needs our own.
And words. To claim our words, our voice, our writing, our ideas, our cadence, our beauty.
There was a time in my life I read Allen Ginsburg and Jack Kerouac and dreamed of all the life that lay outside my little town in the country. All I had ahead of me. The life I would live. Of revolution and gorgeous poetry and art and fascinating people slightly mad but mainly genius burning brightly, so bright.
I have lived intensely and now I am ready to be content, back in the country. Back to my own bed in my own room as it was then. Time to myself, to read and savor and enjoy. My kids are the ones heading out into the world. Beyond the pine trees and the covered porch and sometimes a fox. While I spread out in my bed in the quiet of my room and write you these words of my very own. Send them out into the world and hope they land where they’re meant to. Here in a room of my own.
Nowhere in the Bible does it say life begins at conception. Nowhere in the Bible does it say 10 year old girls ought to carry and birth their father’s baby if he chooses to rape her which fathers sometimes do. To think this is what God would want says an awful lot about a person. And it isn’t good.
Howard Zinn says you can’t be neutral on a moving train and so I want to hear from my Christian sisters today. I want to hear them screaming for the women who will die, the girls who will die, for the dreams that will die. They asked Jesus the most important commandments and he said love God and love one another. Why is that so fucking hard for so many ChRiStIaNs?
Contraception is next. Do you know I didn’t use contraception for years and I’ve never been a fan and it’s failed me on occasion and I still will give my all to defend our right to it. Do you know the horrors I have seen come of lack of access to effective contraception? Where are you my fellow Christians? With your youth groups and your worship songs and your testimony? Jesus hung with the prostitutes and the lepers. She had two beautiful kids and a hole inside of her so wide and so deep because she’d never been loved and only ever been hurt and that third baby done did her in and now all three of the babies are with someone else and she is in jail detoxing meth psychosis and I miss her so damn much. She chopped wood at 8 months pregnant to try to make enough money to keep the water on. And where were you? At yOuTh GrOuP
I sat in my car and cried for the world we’ve given our kids. I tried. I believed. But here we are. Poor lost children of Eve banished from Eden. But Eden wasn’t enough. Or maybe it was too much. We wanted that apple and who could blame us? How boring a perfect life must be. So huddle together in this Whale with me and let us tell each other tales until the light goes out.
left behind by the barren wombs that birthed us underneath the moon
Mother moon has cried for us while Brigid’s fire inspired us
To reach for something better than us
Wait Did I say us?
I meant me.
You conjure planks in all our eyes
But yours are fine
(It’s a disguise)
A pleasant reflection outside of you
Rot and decay is what is true
What god has joined together I will put asunder
For how can we be one when your trunk is putrid and diseased at its core?
Swoop up the fruit before it hits the floor
If you can tell a tree by the fruit it bears you’ve done a damn good job of fooling God
For our children are precious fruit indeed
Owing little to your bitter seed
They grow and bloom in spite of you
Soaring so far past the height of you
Knowing there is something not right with you
People look at the women that fell in love with Ted Bundy
Stood by Ted Bundy
Accepted a proposal in a courtroom from Ted Bundy
And they think these women are naive or dumb or victims themselves
But has it ever occurred to you that they were there because being in love with Ted Bundy worked for them?
Instead of looking at him as this charming manipulative sociopath fooling these women
Has it occurred to you that she was manipulating him too?
Judas and Ted Bundy and Jeremy Noyes
Sinners that God so loved he gave his only son
God and Abraham would sacrifice their sons for the sins of the world
And so do you think yourself holy when you hurt your kids to hurt their mother? To punish her for leaving? For putting asunder what You joined together?
Because it was never about God
And always about you
And you, are a jealous and vengeful little demigod
My therapist and I realized the other day that although I’ve been in therapy with her off and on since 2014, we’ve never discussed my childhood. “Well,” she said, “I’m sure you’ve discussed it with the other therapists you’ve seen in the past.” “No,” I replied, “I haven’t. Never.” She asked. if I thought we should and I paused and took a deep breath and said, yes. My life has been a series of fires to put out for so long, this is the first time we’ve had time to get into it. She is clearly not a Freudian. And I have clearly been avoiding this. (My mother’s voice ringing loud in my head “someday you’ll grow up and go to therapy and talk about what a terrible mother I was,” making a pit in my stomach big enough to swallow me whole. The guilt. The shame. You don’t talk about the family to anyone outside the family.
Soon after this, someone tweeted about writing about your childhood and your parents’ reaction. It was a lighthearted tweet but some jackass replied that if one is going to write something negative about one’s parents, they should discuss it with their parents first as he had had an experience counter to this and was not okay with it. Here’s my response:
He has since deleted his comment as you can see.
I mean what I said and yet, I have held back on discussing certain things here. But I’m reminded of the quote:
So, fuck it.
I was reading my fave Viktor Frankl a couple of weeks ago. There’s a book newly translated to English of some talks he gave in 1946, shortly after leaving the camps. He writes about getting out and choosing to stay in Austria and the experience of having so many people there say, oh we had no idea what was going on in the camps. He calls it a deliberate not knowing and says it’s essential to the success of authoritarian regimes. Ordinary people must deliberately turn away from what is happening so that they don’t have to accept responsibility for it, don’t have the moral imperative to do something about it.
And as I was reading it, I thought of my mother. I thought of how much energy she and my father have put into not knowing for my entire life. You see, my greatest fear has always been that my children will turn out like me. They most definitely got some crap genes from me (nature) so I have to know that I am raising them differently than I was raised (nurture). And so, I have to remember what it was like and all the glaring red flags and cries for help and all that that they purposely ignored. Because I wouldn’t. I wouldn’t ignore my kids’ cries for help and red flags and all that.
I used to make excuses for them. It was the 1980s, it was rural Appalachia, not a place mental health was talked about. We didn’t have health insurance a lot of the time. But it’s just excuses. I had a lot of friends, of all classes and varieties, whose parents got them help (tried to anyway). The truth of it is, she didn’t want to be embarrassed and she didn’t want to be bothered. It’s messy, ya know? I remember writing a story in college about a girl who kills herself by slitting her wrists but makes sure to put newspapers down so it won’t make a mess for her mother to clean up. I had no idea the story was about me. I truly didn’t.
When you cut yourself everyday with razor blades, arms and ankles and shoulders and thighs, it is bloody. It wasn’t a thing back then. They still called it “self mutilation.” A friend of mine turned me and my boyfriend onto it and I loved it. I loved it for a lot of reasons, conscious and subconscious. I tried to hide it but apparently something happened that made it impossible to ignore. So they told me to stop. And she said, “You don’t need to see someone do you? You’re all right aren’t you?” And there was only one acceptable answer. “I’m fine.” Because we were always fine.
But my cuts were a reminder we weren’t actually fine. An intrusion into the beautiful little house where she kept her china dolls, four daughters, four dolls. And so my sisters would say that I needed to stop upsetting mom. And they would check me for cuts. And I would find new places to cut that they weren’t willing to look. And in time it blew over. She honestly probably completely forgot about it pretty quickly. They do that, ya know? People like her. They just dissociate out the bad memories that don’t fit their picture of the perfect little life. Just put the cut up doll in a new long sleeved dress and back in her place and everything’s fine again.
Fine. We’re fine. Everything’s fine.
We came home drunk, came home high, came home tripping balls. And they didn’t notice. I thought I was really good at faking them out. My other friends’ parents kept catching them but not me and my sister. We were so much better than them! Of course, we weren’t. Of course, if my kids came home like that I would know instantly. And have to deal with it. And admit things are not fine. And I would. But not her. Not them.
And if my four year old came to me asking for protection because her older sister was bullying her, I wouldn’t say “Toughen up. Life is hard,” and go about my day. If they locked her in a room with a static-y TV meant to terrify her at age 5 because she’d seen Poltergeist, if she was so scared she literally ripped the door off the hinges trying to escape, I would do something about that shit. For her sake and for theirs. I prefer not to raise any of my kids to be dickheads. But she loved her flying monkeys because they did the work for her.
I have to think about these things to remind myself I am a different mother than she was and that my kids won’t turn out like me. They’re already turning out differently. They don’t pretend everything is fine (not at my house anyway). They get mad and sad and worried and frustrated and bored. And they notice when I’m unhappy and ask me if I’m okay and what’s wrong and they try to cheer me up. These things happen daily, generally multiple times a day. And it occurs to me how many millions of time I have stuffed down sadness and anger and guilt and confusion and shame and just generally not being fine. And how many times I have stuffed down the urge to say, what’s wrong, Mommy? Because no matter what I said or how I acted, I knew things weren’t fine. I just didn’t know how to say it. For decades.
I look at my daughter and think, wow, she’s so perceptive. She spots manipulation or insincerity a mile away and she calls you on it. And it’s taken me a year and a half to realize I was that perceptive too. I just didn’t allow myself to admit it. Because I had to survive. Because children die without adults to take care of them.
I think about that study where they replaced infant monkey’s mothers with these cloth monkey dolls and the monkeys bonded to them, clung to them. Those infants turned out much better than the monkeys without one, or with the ones made of wire instead of cloth. And I wonder, did those monkeys grow up and go out in the world and eventually realize their mothers were just dolls, and not real mothers at all? Did the monkeys marry monkeys or dolls? If you’re used to a doll, I’d imagine marrying a real actual monkey wouldn’t feel right. Until you eventually realized being married to a doll isn’t normal at all, and really not a good idea.
WILL YOU MARRY ME? I THOUGHT YOU’D NEVER ASK!
I am 42 years old. And up until a few weeks ago, I would have told you I’m not an emotional person. A lot of statements like this “That movie had me crying and I’m not an emotional person.” “I’m not a crier but when she said that, I ended up bawling.” And so on and so forth. I didn’t think I was an emotional person because that’s what they told me. I remember being at the Pittsburgh International Airport and my mom was either leaving for her prolonged trip abroad or returning from it. I was 16 or 17. And my mom was crying and my sister was crying and so on and so forth. And I wasn’t. And it was, oh what’s wrong with her? Why isn’t she crying? And so when I was diagnosed with Asperger’s at the age of 22, it all made sense as to why she never seemed to express the appropriate emotions. And what it took me all these decades to realize, is that I knew it was all fake. The tears, the words they spoke, the situationally appropriate feelings they acted out. All a performance. A play we put on everyday for ourselves, for the world. I just couldn’t play along. Actual sadness, actual crying, I knew to keep hidden. Like a rabbit crouching down in the field, pressing its soft underbelly to the cool grass, hoping the wolf won’t rip its intestines out. Hoping it will pass by. Never, I mean never, expose your soft underbelly to them. Keep it locked away. Even from yourself.
It turns out, I’m actually really fucking emotional. I cried in front of patients in residency. That is not done. I cry on my way home from a hard shift with my addiction patients. I cry every time my son Max plays piano. I cry at movies, on almost every major holiday, thinking about the future, the past. I’m a crier. It’s taken me my entire life to 1) realize this and 2) let go of the shame around it. You’re not allowed to apologize for crying at my office. Humans are supposed to cry. And if someone feels safe enough to cry with me, I’m honored. Crying, real crying, not performance tears, it’s truly amazing. Every cry is a good cry.
Lena knows the difference between real tears and fake ones. She knows there’s a certain look he gives her that’s meant to make her feel bad for him and manipulate her into acting like she’ll miss him when he goes even though she won’t. And she knows how she’s supposed to act to make people happy. I think she knows she doesn’t need to do that with me. I hope. I’m actively working on it. Working on accepting emotions of all kinds from them and from me. On being honest with them when I’m sad or angry. On letting them know I’m there if they’re sad and that they won’t feel sad forever. Listening. Watching. Noticing. Remembering.
I will never understand how you can see your child’s body bloody and gashed and not want to do everything you can to help her. How you turn away from a four year old asking you for protection. How you tell your daughter she’s a crazy slut and a horrible mother and you’re giving her ex-husband money to get a lawyer and take her kids away. How you mention to her that her uncle googled “Elizabeth Fleming slut” and all kinds of things came up. Show her the tiny little AP wire article in the hometown paper about her turning in the pedophile and mentioning, accurate or not, details about her sex life, and talk about how humiliating it is and remind her how embarrassed her sisters are. And will never understand a man jealous of a ten year old. A man who belittles and degrades his children and his wife, plays them against one another, gaslights and lies. And do you know why?
Because they aren’t real people. They’re just cloth dolls pretending at being human. They’re badly behaved little sock monkeys and I merely, dear reader, relate the facts. Because everything was not fine. And every feeling and word and question and desire and lament and exaltation that I’ve swallowed down, that my children have swallowed down, that so many of us have swallowed down, deserves to come out whatever way we see fit. Y’all sock monkeys can go on deliberately not knowing, just work a little harder at it. The rest of us, we’re gonna be just fine.
I have been on a diet for a few months now. I’ve lost 30 pounds. Losing steadily week by week. And then a few weeks ago I began to struggle. I stepped on the scale fo r my weekly weigh-in the day after Thanksgiving and had only lost 0.8 pounds. I was upset. I was pissed. This was not acceptable.
I decided I was going to show my diet who was boss. So, I began a fast. I wasn’t not eating at all, I reasoned. And really, Advent is a time you’re supposed to fast anyway, I reasoned. I was, of course, full of shit. I ate very very little for a week and, not surprisingly, when I stepped on that scale a week later I had lost 8 pounds. Eight pounds! In a week! Woo hoo! I’ll be at fighting weight in a few weeks!
I imagine you can guess what comes next.
I continued my oh-so-religious-not-unhealthy-at-all “fast” a few more days and then I crashed. As happens. I ate a whole lotta junk. So, I told myself, well, I’ll just go back to the weight watchers. 30 points a day. fruits and veggies are 0 points. I’ll just go back to that and then I won’t regain the 8 pounds. Still dreaming of the holy grail of being at Goal Weight. I reasoned that since I don’t have any clothes that fit me right now and since I can’t justify buying any new clothes until I am at my end weight, why it only made sense that I really *needed* to lost 3-5 pounds a week instead of that BS “1-2 pounds a week for healthy weight loss” they were always selling.
I imagine you can guess what comes next.
I didn’t stick to my 30 points. I bargained with myself further: okay, self, if you must eat more than the allotted 30 points a day, then at least *record* everything eaten. At least stay on track *that* much.
I imagine you can guess what comes next.
It’s been two weeks of my Angel making various bargains with my Devil. And the Devil laughing as she inhales candied nuts and dairy free egg nog.
I raised the white flag last night and decided to sit down and journal it out and see what’s going on. There are a lot of factors at play: my hormones are out of whack because I’m weaning my son, it’s THE HOLIDAYS and yummy comfort food is EVERYWHERE, being on a diet for 12 weeks is really hard and gets a little old after a while, I worked six days straight right as this downfall was starting (I work 12 hour urgent care shifts so this is no small thing. Honestly, working more than 3 in a row is pretty awful), and I’m pretty damned stressed since this is my first Christmas without my family. Also, my son with autism starts getting a little… shall we say, difficult this time of year because routines are getting out of whack with the holidays. Also, we’ve all been sick with colds (#UrgentCareLife).
But it isn’t just that I’ve been eating a bit more than I should or saying Yes to more cookies passed my way than I’d planned. I’ve returned to an old pattern of eating I’ve had since I was ten. (See this entry for more on that). So, I journaled away.
It’s this feeling that I have this hunger in me that will never be filled. Like I could consume the whole universe and I would still not be satisfied. It would still not be enough. I try and try to fill it. It’s exhausting. It’s a big black hole that won’t go away.
Because it is not something that can be filled with food. It’s trite but it’s true.
It is a hunger so wide and so deep. An ocean. No land in sight. And I am alone on a little boat. You can scream all you want but no one will hear.
It is something that must be filled with love and joy and speaking your truth and having someone hear and knowing you’re resilient and having faith it’s going to be okay. all of it. Filled with my son’s drawings and my daughter’s songs and my other son finally learning addition and my baby saying Uh oh! Filled with God and his saints and Hebrew prayers and oplatka and incense and chanting. Filled with the rhythm of the year and laughing when you really want to cry and doing what’s right even when it’s hard. Because life brings pain but we decide how much we suffer. And joy is a choice.
I am blessed with four beautiful children. I am blessed to be a physician. I am blessed to have been called to Catholicism. I am blessed to live in a warm home and drive a safe car and to be able to buy my children the things they need and some of the things they want. I am blessed to have grit. I am blessed because I am not alone. And it is not an endless ocean. Just puddles we’re jumping through. And in between, we laugh.
I’m sitting in the Children’s Hospital waiting room. Again. I’m here with The Ax this time (usually it’s Soldier Boy). We’re here to see Endocrine because he’s not growing very well. We see the specialist and she listens to our story and tells us that little Ax’s particular eating disorder is very strange. Maybe she doesn’t use the word strange. Maybe she says unusual or uncommon or not typical or not something we see very often. The exact wording is irrelevant. What matters is that I’ve found myself in a familiar place: getting unexpected bad news from a doctor about my child.
I’d been the one to request the endocrine referral from his PCP (my attending at the outpatient clinic my residency runs). He’d been seen by various doctors for his eating issues before. He’d been small for a few years. No one really thought it necessitated a visit to endocrine. I asked for the referral feeling like I must be overreacting, but also feeling I deserved the peace of mind an uneventful trip to the specialist would bring.
Little Ax had always been the healthy Yin to Soldier Boy’s multiple diagnoses Yang. I expected doctor visits for Soldier Boy to yield worrisome news. I’d learned to brace myself for it over the years. But this news, that little Ax might have something more wrong than I’d thought, came as a blow I hadn’t prepared for. My abdominal muscles were relaxed, my jaw slack. The punch landed and I went down like I had in the early days of the Soldier Boy medical saga.
They wanted bloodwork and an X-ray of his hand to assess growth trajectory. The results would take 7-10 days. She would call me herself to discuss them. I didn’t like the idea of the doctor calling personally with the results. Calling with normal results didn’t seem like a doctorly thing to do. Normal results don’t require explanation; there are no questions to field. If she was calling, it seemed like there was no hope of a normal outcome. I did not say any of this. My mind was relatively blank as minds so often are in the presence of physicians. We should come back in three months, she said, so The Ax could be weighed and measured again and she could get a better idea of how he was growing. Any questions? No, thank you for your help. They’ll direct you to the lab when you check out. X-ray is on the second floor.
We sat in the waiting room for the lab for an hour, Ax on his computer and me on my phone, texting all the interested parties awaiting the results of his appointment like it was election night. You hear the moms discussing what diagnosis brought them there. One mom of what appears to be a six month old baby boy relates he has cystic fibrosis to another mom there with her diabetic tween daughter. The life expectancy of those diagnosed with CF had increased significantly in recent years but is still much shorter than the typical person. This always happens in the waiting room at Children’s. You always find someone with a burden greater than yours, right when your pity party is in full swing.
The interesting thing about it that I’ve found out over the years is that a lot of the families I think are worse off than mine, think the same thing about me. There’s no precise hierarchy of the lost dreams we carry for our children. Some of us go into it stronger than others; some of us surprise ourselves with the strength we develop under the tensile stress of it all; some of us, I suppose, fall apart either for a time or completely.
A woman leaves the lab with her tiny newborn baby on her shoulder, her belly still swollen from the birth that couldn’t have place more than a week ago by the look of it. I remember when I was here with Soldier Boy when he was just a few days old. It’s a bad memory. I’d like to put some beautiful spiritual spin on it, but I can’t. Watching them put the needle into your tiny newborn’s arm is just an ugly thing. Having doctors tell you there is something very wrong with your perfect little newborn is heartbreaking. It’s not a break that ever completely mends.
I go to ask why it’s taking so long for us to be called and they tell me they paged us quite a while ago. My pager didn’t go off, I tell them. They offer no apology but tell me he will be called soon. The Ax is calm as the phlebotomist draws his blood, asking her questions about the meaning of the different colored tops on the vials she uses to gather his blood. She says he reminds her of her own son. I think that it’s a nice thing to say, but it’s a thought detached from feeling. My heart is in a sad place from long ago.
We finish and head to radiology for the X-ray of his hand. I remember taking Soldier Boy there for CTs and MRIs of his brain. It doesn’t feel like a memory; it feels like I am there. Is it possible to get PTSD from having a sick kid? This feels like a flashback. I remember how stifling the crowded waiting rooms full of kids and parents felt. That “Max and Ruby” had been playing on the waiting room TV that day of the first CT. I remember looking at the cartoon bunnies and commenting to Soldier Boy’s dad that it would be funny if one bunny began humping the other as our pet bunnies at home often did in their eternal battle for dominance. We laughed. We had to.
I think of it now as I look at the Ax happily chattering to someone he’s introduced himself to in the radiology waiting room. You have to laugh, I remind myself. There are so many more happy times than struggles for my kids. So many happy times ahead for them along with the struggles. Grieving demands our attention but we must make room for laughter too. Laugh now while you bide your time in the waiting room. Tomorrow has enough worries of its own.
I'll Sleep When I'm Dead 