A Clever Title About Clinical Depression: Music

If I waited to come up with a a title I liked I might never actually write this, so deep breath, friends, and away we go.

I’m going to start at the end.

I think that will make it easier for me, for all of us really.

Hiding. From my children. To listen to taytay.

Last week, I started listening to music again. I put Taylor Swift’s Folklore on in the car in an attempt to mellow the kids on a long drive down to the beach for a getaway, and it worked, but something else happened too. I opened the sun roof. I turned the volume up, flying down PCH with four of my very favorite people in the whole wide world. I felt it, the music, the ocean air, all of it, rushing through my body. Later that weekend, I went for bike ride all alone, earbuds in, volume up, Folklore again, my own private soundtrack, riding with no hands down the alleys along the beach, grinning through my mask. At the end of the weekend, Jim took the kids home and I stayed to clean and close up the beach house. Folklore, on my phone, in a coffee cup to amplify the sound, while I sang off key, vacuumed and folded the endless pile of towels. At some point, at some key change, I felt my breath catch in my throat, and realized I was crying. I sat on the floor, heavy with the realization that I haven’t listened to music for the last three years. I’ve certainly heard music or had music inflicted on me, but it has been about three years since I’ve had the capacity to listen to it. I’m sure I’ll branch out from Taytay, but right now I’ve captured some neurological lightning in a bottle and I’m working slowly from there.

Over the past six months I’ve been discovering a lot of things that drifted and were ripped away while during my nearly 3 year long depressive episode: my laugh when it is free and easy, not sarcastic and full of pain, my body, alive and thrumming, stronger than I realized and a source of great joy, my mind, brimming with half formed ideas eager for debate and encouragement, and a well of compassion and patience that I really feared I had lost, all together

But music, (deep breath, Kate), I had truly forgotten about music.

There is so much more of this story to tell, parts that are much harder, so much so that it just felt safer for all of us, to start with the happy ending. Last night, I put on Dolly Parton in the kitchen and Penny and I danced like fools to Jolene, singing at the top of our lungs. I told you I was branching out, apparently sticking with yellow-haired sultry songbirds for now, but I’ve got time. There has been a lot of shit over the past three years, (oh, fair warning, I swear like a fucking sailor now), but there has been a lot of joy too. Standing on the beach with a dear and kindred soul just yesterday, It struck me that I’ve been clinically depressed the whole time I have know her.

I wanted to start this story in a place that felt like hope, like possibility, because that is a place where we can all start together. I’m hoping to share more here soon, if you are interested, if it might help. Don’t misunderstand, even after these three years and this journey, I’m still not sure how today ends, but I’d love the company while we find out, together.

Type 1, Round 2

Henry got sick in February. I mean, we all did, fevers, aches, runny noses, coughs. The kids and I ended up testing positive for strep, but that might have been a secondary infection to whatever else was going on. We were sick. We did a round of antibiotics to deal with the strep. We got better, but it started a clock in my head. 

Penny got really sick about seven months before she was diagnosed. 

We don’t know everything about what causes the auto immune condition type 1 diabetes, but it seems to work like this. Genetic predisposition, known or unknown (you can be predisposed and not have any type 1 in your immediate family), triggered by a virus, turns on the immune system to fight the virus. Once the immune system gets turned on and starts producing these specific antibodies, it doesn’t turn off even after the virus is gone. These antibodies mistake the the islet or insulin producing cells of the pancreas and begin to destroy them, thus rendering the person insulin dependent. It doesn’t matter if you can get islet cells to regrow, or add new islet cells somehow. The body will continue to destroy them. You seem to need both, genetic predisposition and the trigger. This is a wild over simplification from a non medical person, but I think it gives you the gist. Type 1 is relatively rare, but having sibling or a parent with it, does increase your odds.

For the past four years, every time one of the kids got really sick, I started the clock. I increased vigilance. I started poking toes and checking ketones, paying close attention to appetite, thirst and frequency of urination. I knew we had the genetic predisposition. I was just waiting for that trigger. 

About a month ago, Henry started wetting the bed. He started having rages, bigger and more unreachable than expected given his generally sunny disposition. I started checking for ketones in his urine. It always came up negative. It didn’t mean he didn’t have type 1, but it meant we still had time. 

About a week ago, I got up the courage to check his blood sugar. I readied the meter and the lancet and snuck into his bedroom. I poked his toe.  380. I wiped another toe with an alcohol swab. 444. I recalibrated the meter. 368. Jim was working late in our home office. I stood in the doorway and told him Henry has type 1. I immediately reached out to the text chain I have had since Penny’s diagnosis, a group of moms with kiddos living with type 1, a place I knew I could curse and cry and begin to mourn. 

Jim emailed our endocrinologist, expecting to hear from him in the morning. I gave Henry a very conservative dose of long acting insulin and set an alarm to test him every ninety minutes through the night. Imagine our surprise when our endo called at 1:00am asking us to go into the emergency room. We tested. 220. We woke him up and checked for ketones. Still negative. We politely declined and asked to go to the lab and see a pediatrician first thing in the morning. Many phone calls from the hospital and our endo later, we convinced them that five more hours was a reasonable risk to avoid a covid era ER visit and subsequent hospital stay. We slept. Kind of. 

We had told Henry that he had type 1 in the middle of the night when we woke him up to check ketones, and all he wanted to do was tell Penny. Henry adores Penny, always has. You can see it on his face every time he looks at her. To him, she is the coolest, smartest, most fun person in the entire world. Sometimes the feeling is even mutual. She came in our room early the next morning for snuggles and Henry proudly declared that had type 1 beetes. Penny, in the dismissive tone reserved for older sisters, told him he definitely didn’t. Her eyes drifted to uncertainly to us, and we nodded in acknowledgment. They fell into each others arms, laughing so hard tears ran down their faces. Jim and I stared at each other in shock.  I started to cry.  They recognized immediately something it took me a while to grasp. They knew they would never be alone in facing this.

Next came the labs, and a dismissive pediatrician who happened to be on call and a dexcom delivery and a brave box from a dear friend. Then the phone calls and the messages and words of support and the crying, but I’ll save that for another day. Hug your babies. Keep your family close. 

Still not sure how today ends. 

I Am Not Cut Out For This

I feel like I have to start with a disclaimer. Most days are not like today. Most days the cracks barely even show and when they do, I can paper them over with will and endurance. Most days, I feel mostly deep joy and gratitude for this life that I have built and these people that I have built it with. I have the clarity I need to know that this is just a moment in time. 

Today, the cracks feel huge and gaping, as though no amount of can-do-good-cheer plaster can fill them. I feel raw and utterly unprepared for the world I find myself in. The constant demands, both reasonable and unreasonable, leave me feeling detached from my own worth, my own personhood. I feel reduced, utilitarian. I clean only to find the same mess miraculously reappear behind me. I cook, and before the last pan hits the sink, I’m deluged with demands for more or less or different food. I can’t remember how to create something for myself, how to carve out a slice of the world that belongs only to me. I find myself giving up on a thought midway through, knowing I won’t be able to finish it without being interrupted to tie a knot, kiss a booboo, referee a fight. Even my dreamscape isn’t my own. Small bodies find their way into my bed and I dream of screaming, reaching out to save my children from some impending doom we cannot escape, a fall from a great hight, a giant beast, an illness that takes a turn, and I wake to find a tiny foot across my face or small hand wedged in between my breasts.  

I screamed today, not words, just a primal growl from deep in my belly. I had asked and asked and asked and been asked and been asked and been asked and answered and answered and picked up the same tiny clear blue lego in a sea of legos on an unending loop, and replaced the couch cushions, and wiped up the spill, and I just needed a minute, I said. Could everybody just give me a minute, to think, to connect with my breath, to King Solomon the baby, to get in touch with my body, to remember that smart thing that smart parents do when things are hard, and to remember that this not about me or how I feel or what I need, that it is about them and that’s just the reality right now and I SCREAMED. 

WHEN WILL IT BE ABOUT ME? 

My throat still hurts. 

I went in the back yard and stretched out, face down on the warm grass. I connected with my breath. I felt my heartbeat in my chest. I got in touch with my body. I let myself cry. I watered my tiny plants in the hopes of a beautiful summer harvest, tomatoes, cucumbers, sugar snap peas.

I am not cut out for this. I am faking it. Maybe you are too? 

There are so many bright sides, so many spots, even long stretches, of unbridled joy, but that is not what today is for. Maybe come back tomorrow?

Still not sure how today ends. 

On Being Invisible

As he shoved past me with a grunt, jostling my arm, I gripped Penny’s hand tighter. He grabbed a cart and swiveled his way into the market, nearly catching me with his elbow, without even a glance back or a nod at the two of us, still holding hands waiting for his tantrum to pass so we could safely get a shopping cart. I honestly think he didn’t even see us, a middle-aged mom in sweats and a ball cap with her seven year old kiddo. 

“Unbelievable,” I murmured under my breath. 

“What an ass,” I thought to myself. 

“Oh, don’t let me forget to get two thingys of cherry tomatoes. They are so good right now,” I said aloud with forced cheer. 

We made our way into the store and there he was. Let’s call him Bob.  Bald, short stature and probably pushing 50, well-dressed in expensive looking athletic weekend wear, pacing furtively back and forth on the other side of the cash wrap, he was pretending to be be browsing by the bulk bins, but his eyes were locked elsewhere. He kept whipping his head around and sucking his teeth, furrowing his brow, making a sort of pained expression.  Following his gaze, I realized why he hadn’t made it further into the store to purchase his supplements and protein powders and gluten-free high protein meal replacement bars.  There, checking out with a single bag of groceries and looking like she was ready for a great late summer day at the beach, was a girl. Now, she might have been legally an adult, but by any realistic measure bald Bob could easily be her father. He stood there, pacing and sucking, and staring, even going so far as to pop up on his tippy toes to try to see over the checkout as she walked out of the store, consensually arm and arm with a male friend. Only after the glass doors closed behind her did Bob make his way deeper into the store.

While this whole scene unfolded, Penny was at my hip, trying to find the best mango, or the best six mangos, chattering about how the ones with the reddish spot taste the best and the ones that are green never get sweet enough, and you see, I didn’t have to furtively pace or hide my glance or even look away, because I’m invisible, and for now Penny is too, at least to Bobs. 

There we were: the invisible before, a child beneath notice, the visible during, a young person whose grocery shopping was being sexualized without her awareness or consent, and the invisible after, an adult woman who blocks your easy access to something you want, so just shove on by. Either way, just movable objects to Bobs. Something about watching him watch her reminded me how scary it was to be visible like that, to people like that, embarrassing  and shaming at best and terrifying at its worst. It made me scared for her. It made me scared for my kiddos, who are approaching that window of visibility at breakneck speed. I can spare them the shame. I can teach them that that kind of behavior has nothing to do with them and is not their responsibility, that the only person who should be ashamed is the Bob. I can’t spare them the terror. 

For my part, I rather like it, this new found super power. I’m grateful that I eased into it. Being pregnant for most of a decade provided an easy stepping stone, a lesson in being highly visible but in a different way. Then one day, I emerged, invisible to Bobs. I feel safer and more free than I realized was possible. I laugh louder. I think less about what I wear.  I care less about all the right things. I care more about all the right things. My body feels more deeply my own, not for public consumption, but for my own pleasure and enjoyment. 

The best part is, I’m still very much visible to the people I want to see me: my partner, my family, my friends, my community, my colleagues, my artistic network.  In a lot of ways, I feel more deeply and meaningfully seen than I ever have in my whole life. I miss nothing about being seen that way. Nothing. 

I especially don’t miss the terror. 

Bob left before us. I didn’t see him again and he certainly didn’t see me. I remembered the two thingys of tomatoes but I forgot to get more mayo. At check out, our bagger made Penny laugh with a silly stunt involving a paper bag and a disappearing orange. Her laugh rang in my ears and my heart for the rest of the day. There can be such joy in being seen. 

It Doesn't Get Easier

I’m really careful of what I say to newly diagnosed families. I try to do a lot of listening. I try to get them to give themselves permission to be sad, to mourn. I try to make space for them to ask questions, if they want to, but I offer no advice. I never tell them it gets easier, because it doesn’t. It doesn’t get easier, but you do get better at it.

Penny was diagnosed shortly after she turned three, and sitting here a few nights before her seventh birthday, it strikes me that she has now lived more of her life with Type 1 than without it. The things that were hard about managing Type 1 for a preschooler are not the same things that are hard for a nearly first grader, just as I am certain there will be a shift again at puberty (the hormones), entering high school (the schedules), young adulthood (the distance). Coupled with each of these new challenges I know she will encounter, I know I will also be confronted with another, the pain and fear of letting go. I have been Penny’s pancreas for nearly four years. By the time she assumes any meaningful portion of her own care, I anticipate I will have been at it for well over a decade. By the time she effectively fires me completely, it will have been closer to two decades.

I am not exaggerating when I say, I consider Penny’s insulin needs and blood sugar every six to sixty minutes, twenty-four hours a day. And I have gotten pretty good at it. I can guess a carb count like a boss, administer a shot at a red light, test blood sugar by the pool, change a pump site while she sleeps. I have done all the research. I know what’s available and what is coming as far as diabetes tech. I can restart a sensor without a warm up period. I’ve hot swapped a transmitter. The people who know what this means, will know that it is a very big deal. I have even, standing on the shoulders of giants and with the support of the remarkable DIY community , built a closed loop system that hacks the various med tech devices, pump and cgm, and gets us as close to an artificial pancreas as you can get (#wearenotwaiting). I have gotten better at it.

The part that has become heartbreakingly clear to me in the last four years, is that in the grand scheme of things, this will be her road to walk and she will inevitably walk it longer than I will, and someday, she will walk it without me. I have no doubt that she will tackle it with the same cheerful optimism and ferocious tenacity that she she attacks everything in her world with now. I will do my level best to handle the inevitable hand off with grace and respect, to make sure she has all the tools she needs to be successful, to make sure she knows she can always come home and have a type 1 vacation complete with while you sleep site changes and full blood sugar management, always. I’m not naive enough to imagine that there will not be stumbles and rough patches, and for those, I am relying on her resilience and our relationship. May she always know that she is greater than her highs and lows, and that there will always be at least two types of insulin in mom and dad’s fridge.

I still remember coming home and not knowing how to feed her. Jim went to the market and bought canned soup, because it had a clear carb count and it was similar to something she had eaten in the hospital. We put her to sleep in her own bed, and I still remember the relief I felt when Jim carried her into our room after the first midnight finger poke. The sound of the lancet woke her up and she went scrambling away from him, like a cat you are trying to put in a bathtub. She finally woke up enough to let him hold her to calm her, and he managed to get a reading on the meter, but she couldn’t settle back to sleep, so he scooped her up and brought her to our room. She has slept in our bed from around 2:00am to sunlight, ninety-eight percent of the nights since then, and I’d be lying if I didn’t admit that it has always flooded me with solace, feeling her between us, her breath slow and even. Even now several nights a week, she still stumbles half asleep to our bed, with her iPhone, Riley Link and pillow, dragging her blanket behind her.

That’s what I want to tell the newly diagnosed families, the parents of those tiny kiddos whose bodies have betrayed them, fresh from the hospital with the bags of orange tipped syringes and tiny glass bottles and no fucking clue how they are going to get through the night, much less the next two decades. You will get better at this. You will learn, because you have to. You will spend hours analyzing data, because you have to. You will build apps and learn to write code and fight with insurance companies and lose sleep, because you have to. And you will get better at this, because you have to, but that doesn’t make it any easier that first night, or the next, or the night before their seventh birthday, or the night before they leave for college. It doesn't get easier, but it’s worth it.

For the entire month of August, in honor of Penny’s birthday, we are fundraising for Beyond Type 1, a nonprofit dedicated to education, advocacy, and the search for a cure for Type 1 Diabetes. Please follow the link to contribute to Pennies for Penny, our annual coin drive, lemonade stand, rollerskating funraiser in celebration of another year of living well with Type 1.

Right Now

Right now it is July 2019. Olivia is nine. Penny is almost seven. Henry is three, but will be four in five months. Jack is nearly not a baby.

Right now, the rug in our bedroom needs to be steamed cleaned. I noticed the pinks and blues are becoming a muted grey. The hallway bathroom isn’t done. I am constantly doing laundry, because of swimming, because of beach trips, because of sweat, because of potty learning, because of peanut butter. I find the pits of stone fruits, lovingly selected at the farmer’s market, sucked dry, under chairs and on window sills. Everything is a little bit of mess, but I am confident that this is more constructive than destructive, that creative freedom often leaves a bit of a mess in its wake.

Right now, Jack comes to me with a stuffed toy in one hand and a small wheeled vehicle in the other, always, never the same stuffed toy, sometimes a cat, sometimes an owl, and never the same vehicle. Trains, trucks, cars, earthmovers, all seem to be valid options. He can say mama, sissies, help, eat, water, ginkgo, car, cupcake, and no, plus about a gazillion other words that only family understand. In a lot of ways he is a master communicator. Someone always knows what he is asking for. Mostly he is just asking to be in the thick of it. Jack is content amidst the chaos, and seems lost when all of his people aren’t around.

Right now, Henry is Henrying. I find him charming beyond all measure and recognize that this is not the ideal place to parent from. He loves me with his whole self, without reservation and I find myself yearning to be worthy of that love. He says, “Oh, bummers,” when he is disappointed and his favorite game is to take turns pretending to be a teddie bear. If you are not lucky enough to be the teddie bear, your role is to pretend amazement when you discover your teddie bear is wiggling or laughing and then respond with shock and delight when you realize your teddie bear is, in fact, a Henry. He loves our neighbor, Ms. Annie and can’t wait to tell her about his day, whenever he discovers her enjoying the breeze on her front stoop. I can’t wait to see what he is going to do next. Oh, and he only poops at bedtime.

Right now, Penny can’t seem to stop growing, taller every day, her feet long and narrow, growing shoe sizes seemingly over night. She gallops through the house roaring at her brothers, a favorite playmate. I find myself asking her to calm down, and as soon as the words are out of my mouth, I wish I could suck them back in. Stay wild, my girl, stay wild. Roar and gallop and laugh. There will be time enough for calm.

Right now, I have stopped answering any question Olivia asks, because I have discovered that if I pause long enough she answers it herself, working her way through her own solution or using the context clues around her to puzzle it out. I love these moments, small glimpses into how her magnificent brain works. I am recognizing that the questions I had been finding cumbersome are mostly just her verbal tick, she needs no input beyond hearing the question out loud. I have heard her work through the basics of evolution, the life cycle of a fern, why we circled the block for parking even though there were spots in the lot, and what I might make for dinner if I didn’t stop for take out, all in the past twelve hours.

Right now, I am greedy for more time with Jim. Time alone feels too short and rushed. Some nights I hurry the girls to bed, the sun still high in the sky, and find myself waiting for what feels like hours for him to escape the boys’ room. There are stolen moments late at night. There are tender moments in the early morning, before the chaos erupts and fills our bed, the boys: forty percent snuggling and sixty percent wrestling. We both see it and feel it, recognize that this is a moment in time. An unspoken promise to each other hangs in the air between us. Someday. Some day soon.

Right now, I am tired, but in such a nice way. The days are long, but the years are short. I find myself wondering when I will lose Olivia during the summer, when her agenda and plan will supersede my days at the museum, trips to the grocery store, playdates with friends. I am certain that it is sooner than either of us can quite imagine. I am looking forward to forward facing car seats, to the end of diapers, to big adventures, to no more babies, but that is not right now.

Right now, my plants are growing. My people are healthy and whole.

Right now, the world is in flux and there is much work to do. I am not unaware of the reality of what is happening in our country. That right now, there are families torn apart, that there are children being held in unimaginable conditions. That is also part of the reality of right now.

Right now I am writing. I am writing to remember.

Right now, I am ready for the work of what comes next.

Right now, I am ready.

Noticing

We drive through the city and I call out the trees: Ginkgos, Indian Laurels, the huge variety of palms. The Jacarandas are easy to spot this time of year with their casacade of purple. The Golden rain and Gold medallions are standouts right now too: the former an explosion of tiny yellow blooms in a conical star shape, the latter huge bunches of deep yellow blossoms. There is a third kind of yellow blooming tree that we see on occasion. We have yet to learn its name, calling it Yellow Flower Mystery tree for now. 

“Notice the shape of the leaves”, I say, “the quality of the bark, the formation of the branches, so that you can spot it when it’s not blooming. That’s the real trick.” 

Olivia calls out Ginkgos when there are none, delighted to trick me into searching for my favorite tree. Penny dutifully identifies every magnolia, chanting magnolia, magnolia, magnolia as we drive down the mid city streets that are lined with them. I love magnolias. Their dark shiny leaves and huge white blooms make me think of dinosaurs, a history of this planet long before humans and cities, before our urban forest. Henry points out palms, and laughs when I point out the tall gangly Italian Cyprus, otherwise known as the Tree Mommy Hates. Lovely, I’m sure, in meandering groves in the Italian countryside, but odd and out of place in strange Southern California landscaping, always making me imagine the set for a community theater production of Alice in Wonderland gone awry. Jack, always game, calls out cupcake, his newest word, sure to elicit laughter and encouragement from his siblings. 

I love Los Angeles, and our canopy of trees is remarkable and unexpected if you take the time to notice. I love trees, so I notice them. 

It’s not that I care if my kids know or care about trees, although the game does help pass some of the time we inevitably end up spending in the car, and they are on their way to developing an encyclopedic knowledge whether they want to or not. 

It is that I’m hoping they will become noticers, people who are interested in the world around them.  Noticing is funny that way. Once you start it’s hard to stop. By cultivating a curiosity and an awareness of the world around them, I hope that I am inspiring them to stop, to pay attention, to not become inured to the beauty of the unexpected landscape that surrounds them. 

The face you can expect your kid to make when you ask them to stand in front of that tree as an excuse to take a picture one too many times.

“There are more trees in LA than people,” I tell them, “trees from all over the world. You could tell the story of our city with the history of those trees, when the palms came and why they are dying now, who planted the quick growing Indian Laurels, whose roots tear up sidewalks and sewers, the huge slow growing rubber tree near the corner of Jefferson and La Brea, how long it must have stood watch there to get that big.” 

“Cupcake,” Jack replies. 

The Weight of It All

The weight of a new baby in your arms, sweet, soft, somehow heavier and lighter than you expected all at once, the soft cheek, resting on your breast, the open mouth, the soft sigh, the possibility and potential in their tiny body. I remember the weight of each of them, distinctly different the way they each rested against me. The weight of it all.

The weight on my scale every morning, just a number, a number that my better self swears won’t define me, an arbitrary number that says nothing about my worth or my ability or my capacity for love or kindness. It is a number that my weaker self weeps over, feeling less than, devalued, unworthy of love and at the same time ashamed that I spend any time there, being worried about the space I occupy, the space I take up, doubly ashamed that I might revisit any of this bullshit on my own children. The weight of it all.

The weight of a life changing diagnosis. The day they tell you everything is different now, that the day to day worries of skinned knees and fractured wrists have shifted to ketones, DKA, seizures, and worse. The weight of a lifetime, hopefully well past my own, dependent on the whims of insurance, pharmaceutical companies, and our fucked up government’s thoughts on those things sits on my chest like an elephant every time I slow down enough to think. I rarely slow down these days. The idea that her ability to access the tiny bottles of clear liquid, the smell of which has been imprinted on my brain since the first time I dropped a three hundred dollar bottle on the kitchen floor, shattering it, two weeks after we first came home from the hospital, is the only thing that keeps her alive, and that that access will someday be out of my control, that sneaks up on me sometimes and hits me like a ton of bricks. The weight of your six year old in your arms recovering from a tough day at school, a boy teased her, a ball hit her in the face, tears streaming down her face, while you wonder, is this normal life is tough shit or is this medically relevant? Should I hold her and tell her everything is going to be ok, or should I poke her with a needle, make her bleed and take her to the doctor? This is, of course an over simplification, but most things are. The weight of it all.

The weight of small children in a big city. We have four children, in a city where most of my peers have two, in a city that is hard to stay in, unless you have a reason. This city often feels hostile to children. I am overly cautious about where I take them and when I take them there, worried about way the noise, the mess, the joyous chaos that they bring will be unwelcome. Someone shushed my three year old at a public park because he was sad that his bike was stolen yesterday. The city is often a sharp contrast to the soft place I know my children need. The worry is weight I realize I am carrying only when I find myself free of it: in the home of a friend who understands the noise, in the presence of people who embrace the chaos. The weight of it all.

The weight of our family. Jim and I choose this, this family, these people. We both came from something different and I have had a hard time articulating why I have known with such certainty that this was our path. There is a gravitational pull to our clump of humanity. It somehow feels bigger than us, exponentially. A lifetime ago, in a classroom I have long since misremembered, a generic professor of something drew a rough diagram on a white board, outlining how more complex relationship structures provided strength or scaffolding for all of the individual relationships. A part of that must have stuck with me. They have each other in a way I can't fully explain. I know they won’t all always come home for the holidays, but it feels like someone always will. When they feel they can’t come to us, I am reassured that they can always go to each other, that there will always be a way home. It comforts me to know that they have each other, less scary than their just having me, loving and flawed and unpredictable me. The weight is multiplied, but the weight is shared. The weight of it all.

Handled

People ask, not really ask, assume, by stating a question where the only socially acceptable answer is yes, "so, the diabetes, you have that handled now, right?" Jim and I generally shrug our shoulders and say, "sure." We do, philosophically, have a handle on it now. It is less front of mind. We go whole hours without actively thinking about it. An alarm in the middle of the night is a common occurrence and results in annoyance more than panic these days.  Type 1 just generally  occupies a smaller space in our minds than it did before, but it is still there, always running in the background. Her numbers certainly are not any better, in fact, they are probably worse. For the first year after diagnosis, we were really locked down, counting every carb, weighing every bite, saying no constantly about everything.

The first year, I basically stopped cooking. I love to cook, but the thought of it would send me into a panic. I would just assemble food that I knew reliably how to carb count. When we were out, someone would suggest a snack and my eyes would go wide with terror. Jim took over a lot of the food prep for the kids that first year; handling breakfasts most days and  prepping lunches the night before. There were even some nights that he would come home after work and make dinner. I would just be paralyzed, afraid to feed her. That's better now. I cook. We experiment. Sometimes she spikes up. Sometimes she doesn't. We say yes more. We are, I think, doing a much better job of balancing her physical health with her emotional well being. 

The other thing people ask is when she will start doing it herself. I usually work really hard to change the subject at this point because I don't teach Penny any self-care related to diabetes. First, the stakes are too high. Life and death shit does not belong on the plate of a six year old. Sometimes she will ask to test herself and she has given herself a shot from time to time, but she can't tell you what her insulin to carb ratio is (1:10) or about how many carbs are in an average sized apple (25g) or any of the other day to day things that make life livable for her. We do that. We do all of that, moving in the background with as little impact as possible, getting Type 1 out of her way so that she can do the important work of being a kid. 

But mainly, it is my last and only shred of optimism at work. It is the only evidence of my hope that by the time we are not able to support her completely the landscape of how we treat Type 1 will have changed so dramatically that the skills we would be teaching her now would be obsolete, the equivalent of knowing how to play a record on a turntable, interesting and might come in handy in a pinch, but not something you need to exist day to day. 

I don't breathlessly read scientific articles related to a cure anymore, but I am encouraged by the progress being made in tech and biomedical research. I am encouraged that there are many brilliant minds working to find feasible solutions to the day to day problems people living with type 1 face, that they have it handled and that someday, she will too.

P.S. Hi. It is nice to be back. Still not sure how today ends.

Two Years Ago, Today Would Have Been Impossible

It was a pretty ordinary day. Everyone woke up at an ordinary time. Jim took Henry, the earliest riser, to go get coffee at our local coffee shop. We had rolling breakfasts as people got hungry. We decided to go to The Huntington to celebrate the first day of fall, in 90 degree weather, but still: girls-only tea in the Tea Room with my wonderful mother-in-law, a stroll in the gardens, a romp through the play area, a spin through the gift shop. Jack and Henry both snoozed on the way home and I ran into Trader Joes for essentials, like bread, milk, white wine, a pumpkin and a fall wreath on the way home. We were home in time for family dinner, movie night, and bedtime.

Two years ago, today would have been impossible. Frankly, I’m not even sure we could have pulled it off a year ago. In so many ways, impossible. Two years ago, we didn’t have a house that felt like a home. Our tiny place was bursting at the seams and we were lost trying to imagine a way to stay in the city and the community that we all loved. Two years ago I would have told you that a fourth baby was off the table. Two years ago I was still bitterly joking that Type 1 was our fourth child. Two years ago the very idea of tea at the Huntington with Penny would have made me feel like I might vomit. How could I? How would I guess the carbs about food I’d never seen? How would I manage the timing? What would it be to say yes repeatedly about food I hadn’t weighed, about food she hadn’t had before? What if she took a bite and decided she didn’t like it? What if?

Today we had a home to return to, an inexplicably beautiful home, where everyone has a place to call their own, in the city that we love, surrounded by people we feel privileged to know and share a neighborhood with. There is a yard and a playroom, and Jim can still be home in time for family dinner. We came home today to place I would have insisted was impossible two years ago.

Today Jack is here. Two years ago we didn’t have Jack or even the idea of a Jack, Jack who was always meant to be here to finish off our little family, Jack, who is loved and loving, who makes sense in a way I can’t fully explain.

Today I said yes. I gave nine units of insulin in five separate injections (more than 3X what she has for a normal meal), but I said yes. She put a sugar cube in her tea, and I said yes. She nibbled on cucumber sandwiches, cupcakes, and petit fours, and I said yes. We stuck our pinkies out and chatted with Grammie about kindergarten, another thing that I feared would be impossible two years ago. Her blood sugar broke 280 at one point and I still said yes, trusting the insulin to work to bring it down, and balancing her mental well being with her physical health. Two years ago a meal like this would have leveled me. I would have peeled the ham off the sandwiches to fill our plates, tried to hide the sugar cubes, and tried to bargain sugar-free lollipops from my hand bag for the tower of beautiful decadent mystery carbs placed on the table in front of us. It would have ended in tears, from me for certain, from Penny too, probably. It has taken nearly three years since diagnosis to feel this way, but, today, I said yes, and it was glorious.

Two years ago, I still thought I would live to see the first woman president and that it would be Hillary Rodham Clinton, but perhaps that is for another time and place. Can’t do that bit today. Today had so much good.

Whatever feels impossible today will shift, will change. Impossible is not permanent. Today, for me at least, the impossible became ordinary and what’s possible is extraordinary.