Photos by Tish Bottaro at Oregon State University, Corvallis, Oregon.
I love working from home. I have a nice view of the trees outside my picture window, I can make my own lunch in my own kitchen. I can brew my coffee and sip it from my favorite mug. I don’t have to get up early, shower, dress, nag my 13-year-old to get dressed and brush her hair, get my son, Aidan, on the bus, pack my work bag/lunch/water bottle, navigate the carpool lane at school and finally get into the office. These days, I’m in the office as soon as I get out of bed. What could be better?
Turns out, a lot.
If I “had it all” before, I certainly have it all now. Here’s what it looks like for this working mom in the wake of COVID-19.
Week one …
My email is a constant ding. I think, “This is a little crazy, but next week will be better.” I marvel at how sticky my kitchen counters seem to be, the way drinking glasses seem to multiply and how many hours my 16-year-old son, Aidan, can play video games and watch YouTube videos (Yes, I know all about screen time, but it’s week one and I’m not here for guilt.). I pride myself on having a bidet, a phone bath and an adequate supply of paper products — and wine. Such foresight! Or, rather, serendipity. I learn Zoom, I work on a puzzle when I find it hard to concentrate on work, and I look forward to happy hour with new zeal. A friend invites me for a social distance walk and I’m overjoyed.
Week two …
Rain. Calm. Quiet. Stillness. Waiting. A false peace. Still so much stickiness on every surface. And so many crumbs. Aidan, who has autism, is starting to melt down. I worry for my Boomer parents who won’t stay home. The same friend comes over for a social distance happy hour on the deck, and I gulp more-than-my-fair-share of wine and feel next-to-normal.
Three weeks …
Groundhog Day. What fresh new hell awaits? I’ve been used to asking this question the last three years as I check democracy’s pulse on Twitter. These days, I’m still checking (It’s not great, by the way.), while also looking for how many new cases of the virus there are, where it’s spreading, how many have died.
Also, I’m sick of the word COVID and am totally OK if I never see or hear it again.
After I put aside thoughts of the sky falling, I return emails, check into Zoom for hours on end and try to keep all of the balls in the air, even as new ones are thrown into the mix. I chuck laundry in the machine, wipe down the latest sticky surface (Let’s face it, they’re all sticky these days.), make dinner, keep a watchful eye on the toilet paper supply, and remind the kids to clean something (anything!) and to pick up a book and put down the tablet and video game controls. I negotiate and strategize and think of ways to keep everyone entertained, educated, safe, busy or at least not having a meltdown. I meditate — and yes, I drink wine.
The problem is that in my mind, I’m “working from home,” when in fact, I’m not. We’re not! We just think we are, when what we’re doing is hunkering down during a pandemic, serving as master communicators, teachers, parents and therapists in maintaining family health and well-being, and also trying to “work.” Work being everything that was expected before the pandemic – and more. Never have the expectations been greater nor the consequences higher.
I also began to read Ada Calhoun’s timely “Why we can’t sleep,” a book on why GenX women like myself wake up in the early hours of the morning filled with anxiety and existential dread. Granted, it’s perhaps not the best choice these days, when a mid-life crisis collides with a pandemic. It’s fascinating learning how our generation is shaping us as GenX middle-agers – how the messages and norms of our youth play out for us as adults. There are many themes I could explore, but in the interest of being concise I won’t. I strongly recommend the book if you’re interested.
There are two messages the author says our generation has received over and over: “You can do anything” and also “You’re on your own.” Both are true for me, and both have added new layers of stress, including a mantra of more, more, more, more running in refrain through my brain. (The old song lyrics “Insane in the membrane” comes to mind – not to diminish the very real mental health struggles of many folks.) My point is that not only is there more to do, but the pressure of doing more is also greater. We can’t rely on others to help: teachers, caregivers, public services and even parks aren’t open or available except perhaps on a screen.
The wheels are starting to come loose. Things that used to be merely annoying now make me rage. We’re not only a bit bored and confined, we’re also mourning. This is especially evident in Aidan. After some agonizingly rough patches early in his education, he’s now blossoming and loves school. He thrives around his teachers and friends and sports and the relishes the feeling of belonging, which is never easy and exceedingly rare for someone on the spectrum. We’re frustrated and sad and anxious and under each other’s feet with nowhere to escape and no one to save us but ourselves.
Yet there are also moments of inspiration, creativity and levity, such as when the person whose phone always rings during a meeting – literally always – is the same person who can’t work the mute on Zoom. And there are moments of innovation, when I watch colleagues come together to unravel a particularly challenging problem. There’s sweet solitude: losing myself in a book or the puzzle I never thought I had time to put together. There’s also a lot of love in my house, despite getting on each other’s nerves. I’m getting to know my kids better because I’m talking – and listening – to them more. Hugs from my husband are extra appreciated.
As we move into week four and five and six and beyond, my goal will be to extend a hug to myself – to practice self-compassion, to extend grace and love to myself and others, to let go of the guilt when I can’t be more or do more, to continue being resourceful, to remind myself I am resilient and that life goes on. And these days, that’s a very good thing and something to be especially grateful for.
Now go wash your hands.
I didn’t imagine having children, so never before did I think that I would be a mother to a 16-year-old. But here you are! Fully formed human, playing basketball and video games, picking on your sister, back talking. Yes, you’re a teen.
You’re also my first, and it’s hard being the first. At anything except maybe finishing a race, which is OK if that’s your thing. You were our guinea pig. Our little man, who is a beautiful combination of your dad and me – my long legs and his great hair, with more than a touch of impatience and an Italian nose. More than that, you were born from love, and we hope you’ve felt that love every day of your young life.
Because you are loved. And you are young. Even though I have aged little more than a decade – it feels closer to a lifetime. Let’s be honest: You were a hard first kid to have, babe. Yeah, you didn’t sleep through the night … you waited until you were 4 for that. And you didn’t say momma or dada or any other word until you were at least 2. You missed a lot of milestones, buddy, and your mom and dad sweated each one.
Most parents don’t know what their baby is thinking and experiencing, and you were no exception. But with you, well, there was a lot more happening in that brain of yours than the average toddler. We didn’t know. So, we worried. And then we did know. And we worried more.
You did it all while we held your hand, sang and watched so very much TV because you had a lot of medication in your system and couldn’t do much more. So we snuggled. (You’re still a great snuggler!) And we loved you harder.
We endured hospital stays and test after test, together. We tried one medication. Then another. And another. And another. We had surgery. And more surgery. And more. And although you appeared to sail through it with your happy spirit intact, mom and dad did it with less of a smile – at least when you weren’t looking.
Just before surgery, you had another life-changing event: you got a sibling. You loved that little person … smiling at her and offering her your toys. We never imagined you, and we didn’t imagine her either. But everyone deserves “their person,” and we wanted you to have at least one person in this life who would always be there for you. Sometimes, that feels like a lot to put on someone. But hopefully we’ve shown you both that you are loved and that you are in this life to give love, so that caring for each other never feels like a burden.
Like all kids, you grew! You love school and not once have you ever complained of going. Not even during fourth grade when your school let you down – big time. It still makes me sad. And it makes me angry – really angry – when I hear about how kids with disabilities are sometimes treated at school. Seriously.
As you may one day see, as you grew, so did we. Not that we didn’t make mistakes along the way. We did, and we learned from them – and are still learning! I was an insecure mom, but now I’m a warrior mother who wouldn’t think twice about moving heaven and Earth and anyone who says you “can’t” or who puts you down out of your way.
And your dad, well, wow, I can’t speak for his side of the story. I can only tell you that you’re one of the luckiest kids ever to have a dad so committed to love, acceptance and putting his own needs aside to lift you up. You won the lottery with this guy, son. And quite honestly, so did I.
On this momentous occasion of your sweet 16, we can’t help but think of all you’ve experienced in that short time. You have miles ahead, my sweet, and I can’t walk with you every step. So, as always, we love you. And when you push us, we love you harder. And all along the way, we try to smooth the bumps in your path and prepare you for a world that we hope will see you as you … a boy who loves his family, a boy with autism, a boy with epilepsy, a boy who takes longer to learn things, a boy who loves ice cream and bowling and who personifies joy on a basketball court.
You are awesome and you are loved, and although the world is sometimes dark and scary, you light it up for everyone who knows you. Happy 16!
I just ran into a colleague who stopped by to loan me Michelle Obama’s new book, “Becoming,” and found myself walking away with a lighter step and – and a lighter heart.
It made me think of conversations I’ve had recently with my 11-year-old about stress and anxiety and how to cope with feeling overwhelmed. I don’t know where I came up with this particular piece of advice, like so much of my advice, but this is the gist of what I shared:
We all have stress. And worry. And anxiety. And not in equal measure or on all days. But they’re always there, even if they’re taking a break and sitting behind the curtain. The key is first to sit down the burdens of the past you no longer need to carry, recognize those that remain — and then consider how we carry their weight. We can’t ignore them or spin our wheels wasting precious emotional energy to get rid of them, but we can redistribute their weight. Adjust our posture, our attitude, our perspective for carrying them.
“No one knows the weight of another’s burden.” George Herbert
When I physically carry something heavy, I adjust for the weight in my body. I might squat or hunch, or I might need to stand straighter. I may need to balance it on both sides of my body, or sometimes just one. And sometimes, I ask for help.
And on days like today, help comes to me.
The weight isn’t going away; I just need to adjust how I carry it.
You know that your baby isn’t hitting all of his developmental milestones. And when he crawls, he sometimes stops and tilts his head for a few seconds before crawling away.
Late one night/early in the morning, you’re up feeding the baby, now 9 months old, when he suddenly stiffens his arms and legs and holds still for about 10 seconds. Not that you remember the specifics because your mind is yelling, “What just happened?!” It was so brief, you want to dismiss it. But your gut tells you something’s not right.
You mention this at your next well-baby visit to the pediatrician. Who suggests you see a neurologist. Which you think is ridiculous.
You go to the “local” hospital, one at the university and not the local hospital in your town of 3,000. The university hospital has a neurologist who sees you a couple of times and then keeps you overnight on Labor Day after another episode of “stiffening.” Seeing your baby in a bed that looks more like a prison than a crib is somewhat horrifying. You don’t know it, but this is the first of many hospital visits that make you wonder if this is real life and that weighs you down with guilt, stress and worry.
After the overnight stay at the university hospital, your neurologist sends you to the city where there’s a bigger hospital and a more renowned neurologist. You used to work in that city, at a large health system, in fact, so you feel comfortable navigating the system and reassured that experts will finally figure out what’s going on with your son.
First visit: you’re told your son probably has epilepsy, and the doctor gives you a brochure and sends you home. You’ve been in hospital marketing and have created these brochures, which now feel like an insult. You sob the entire two-hour trip home.
And then you go back. Repeatedly. For three years. Overnight EEGs. Medicine you try for a couple of months only to switch to something else and start over because that medicine didn’t work. You have more tests. You have to hold him down, physically laying your body over his, so he can be sedated. Your heart breaks.
Despite what you’ve been through, or maybe in spite of it, you opt for epilepsy surgery. Oh, and you have a 3-month old. Who refuses a bottle.
The first surgery is postponed because he has a cold. So you go home, Lysol the house again and try to keep two small children well for another couple of weeks. Then, it’s surgery time. For two weeks, he goes in and out of the OR while the neurologist, who looks like Doogie Howser for those of a certain age, moves wires around on the surface of his brain, which aren’t removed until the very last surgery.
Yes, your 4-year-old has wires sticking out of his head. He also loves for you to sing before he goes into surgery (which you try to do without your voice catching), he loves hitting the automatic door opener into the OR (which makes the medial team laugh), and he enjoys hugging the nurses when he wakes up in the ICU (which they love).
You can’t believe you have such an amazing son. And such a wonderful doctor. The other doctors, who you’ve seen in the elevator, look at their feet when you enter. They know what you’re going through, and they know what you can’t and won’t see: there is no cure.
Once your eyes are opened to the unthinkable, your neurosurgeon offers you one last bit of hope. You don’t know what to do. Crying, rocking your baby (Did I mention she wouldn’t take a bottle and you are physically and mentally drained?), you beg him to tell you what he would do – even though you know doctors don’t like answering that question. You do it anyway. And he tells you.
You take his advice and send your son in for one last surgery. You nurse your baby under a blanket in the waiting room because hospital social workers don’t find you – or a private room to nurse – until two days before you leave. You then wait for your son’s surgeon, in the doorway of the waiting room, like always. He sees you waiting and hugs you, like always. Your son’s OK; time will tell.
You feel something like love for this person who has your child’s life in his hands. You sense he cares; that he sees you. And that doesn’t go unnoticed, because as the parent, no matter how much health care knowledge you have or think you have, you are invisible except to sign forms. But your doctor is smart: he knows you’re making the decisions, he knows that you know your child best, he knows your fears and your hopes, and he’s taken the time to earn your trust. He knows that a child is connected to his or her family and that by taking care of them all, he’s caring for the child.
You leave the hospital – without a cure – on what still feels like the happiest day of your life. A month goes by with no seizures. You think your prayer may have been answered. And it was … just not in the way you wanted. The good news: he’s no longer having up to 17 seizures a day, which your husband has literally charted in Excel in hopes of spotting a pattern or uncovering a clue. In fact, the seizures are so few you can drop one of his three medications. And then another.
And then you keep going, reading all you can about epilepsy and managing therapy and psychology appointments so that he can get the right services in school. You spend a lot of time at the pharmacy and with teachers. You manage it. YOU. Doctors don’t talk with therapists or teachers and vice versa. Each person is responsible for a different body part. A different function. What lives in one world is not connected to the next except without you: your time, your diligence, your research and your love.
You put one foot in front of the other. You take each day as it comes. You take nothing for granted. You stumble. And you still cry. And you makes mistakes, and you learn from them. And you promised to do better, to be better. For him … and also for yourself.
You learn that this may be your story, and although it broke you it doesn’t mean you can’t make yourself whole again, embrace the cracks and imperfection, let go of expectations and write the next chapter.
What I learned
- Ask questions and be an advocate for yourself and/or your loved one. It doesn’t mean you’re being disrespectful. It means you’re a partner in finding solutions – and health.
- Take notes. After appointments, your mind will be swimming and you’ll think you heard and remembered everything. You won’t. Take notes and look at them later with a loved one or health professional to make sure you understand what was said. If possible, bring a loved one with you to compare notes.
- Seek out alternatives and trust your gut. You know yourself, your body and your loved ones better than anyone. Explore services and resources that can help them – and you. Don’t like what the doctor recommends? See what alternatives exist.
- Remember, you’re lucky if you have access to health care and health insurance and the ability to make decisions about your own health and that of your loved ones. Many don’t have that option.
- Remind yourself that no one is perfect. Mistakes will be made. By health care providers and by you. It’s OK.
- Take care of yourself. You’ll think you’re strong and don’t need help. Get it anyway.
- You may not want to talk about it because it only makes it more real. Do it anyway. There’s no shame in talking it out with a counselor or others with a shared experience.
- You won’t always get the happy ending you want, but it will be OK. You just may have to redefine “OK.” Love endures.
- A diagnosis WILL change you. And your family. Make it for the better.
I was recently given an “assignment” from a community group, in which we were tasked with writing a health care scenario in order to help participants think about navigating the health care system from multiple perspectives. As usual, I got a bit carried away and wrote not just a teaser for my story but pretty much the whole darn thing. Again.
I first wrote Our Story during diagnosis and updated it to reflect later surgeries and developments … and as the curtain of emotion began to pull back, allowing time and perspective to shine light on the darkest chapter of my life.
This story, without me realizing it at the time, allows for that light. And although I cried many tears, this time was different. Something shifted. And that shift was how I think about Our Story. How it defines me. How I’ve let it define me in good ways and bad. I’m kinder. I welcome and respect all people, of all abilities, colors, religions … I’m more compassionate. I cry more easily.
I’ve also let Our Story define me as someone who is broken. Who is weakened. Who will forever be defined by this chapter.
This was my a-ha moment, despite the challenges and worries each day continues to hold: I’m not broken. And neither is he.
This reminds me of Kintsugi (or Kintsukuroi, which means “golden repair”), which according to My Modern Met “is the centuries-old Japanese art of fixing broken pottery with a special lacquer dusted with powdered gold, silver or platinum. … This repair method celebrates each artifact’s unique history by emphasizing its fractures and breaks instead of hiding or disguising them.
“Kintsugi often makes the repaired piece even more beautiful than the original, revitalizing it with new life.”
New life. New beauty. A new story. Which I hope you’ll read along with lessons we learned along the way.
No one ever told you
What wings that must give you!
To know you can never fail.
To trust that if you do
if you fall from the sky
someone – or something –
will catch you.
Maybe, I wonder,
do you ever think,
“I can’t.” ?
Or perhaps you don’t care.
You do for you.
What makes you happy.
Something to pass the time.
Another venue to leave your mark.
How far we might soar
if we didn’t think of falling.
If flying wasn’t the point.
To drive for the joy of driving.
Of feeling tires on asphalt.
A sea of trees rising and falling.
Sunlight appearing. Disappearing.
Light and color dance in and out of shadow.
The hum of the road.
The joy of the moment.
The satisfaction of miles behind.
The anticipation of adventure ahead.
Astoria – Forks – Beaver – Cape Flattery
Sol Duc – Lake Crescent – Port Angeles
Do more. Be more.
But we’re never enough.
And too much.
of love and of respect.
If only we could see it
If only we believed it.
Instead, we hang onto old versions
of ourselves. We change our name,
our hair, our address. But we feel
our old self hiding in the back of the
closet, under the bed. And we
tell ourselves our old stories.
Do we ever really change?
at 35,000 feet.
Of life lived,
living and unlived,
opportunities and ideas
that play hide and seek
like mountains dancing
between the clouds
Of lives played out
in hours, days and years,
related and consumed in gulps.
And the hours, days and years
until they stop.
And the gulps are no more
until memories, like souls,
rise above the clouds.