Dear Mouse: Flight and Grace

Dear Mouse,

You don’t remember your first moments of life, but I do. I used to think it was because of the pregnancy-labor-holy-cow-I-made-a-human progression that primed me for such technicolor memories, but now I’m not sure. Adoptive parents describe that first moment with the same kind of detail and intensity, so maybe it is simply that we parents all experience a similar kind of intense imprinting.

I can still feel your inky black hair under my hand, wet and sticky. I remember the extravagant softness and frailty of your skin under my fingers as I traced along the base of your skull and down to your neck. The rhythmic swell of your rib cage was what I imagined a butterfly must feel the first time it opens its wings, alive but not quite ready to take flight.

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Image: A black and white photo of newborn Mouse, wrapped in a blanket. Her arms are curled up to her face and she is sleeping.

I believe there must have been some spark of recognition that passed between our bodies after connecting for the first time as two fully distinct beings.

And after that, a constant haze of us. Comforting, diapering, feeding, playing. So much holding. You gave me a singular sense of purpose that I’d never felt before. That’s how it has been, for you and all your siblings. Until now.

Now, you’re peeking out from beneath the veil of childhood. Let me have my moment of honesty here: I don’t know whether I’m more concerned for you or for me. Part of me wants to be a selfless mother who is emotional simply out of love. I’m privileged to watch you step out, scared that you’ll get hurt, and excited to see you take flight. Of course, I do feel all those things.

As much as I want to leave it there, here is the other reality: I’m scared for you to pull the veil back and see me. Until now I’ve been just your Mother—infallible source of comfort and understanding. Even when I wasn’t doing it right, I was doing it right, you see?

You keep using all your new maturity to confront me about some legitimately flawed choices and attitudes of mine, and holy parenting-win-that-feels-like-a-loss, is it hard to hear. I feel this completely irrational urge to engage in a tit for tat argument with you, whereby I list out all the ways I’ve been a generous and empathetic and progressive parent, and therefore am completely unworthy of your criticism. But. They tell me I’m not supposed to do that with my seven year old.

You’re leaving me, daughter. We might still be breaking bread together every day and laying down under the same roof, but you’re still leaving me. You’re carefully stepping away from me, and I know that every time you look back, you’ll see me less as Mother, but as mother, the flawed human being who also happened to raise you. I know you’re still young and I know we have a lot of time left, yet I am still left with the feeling of not enough air in the room. I want to breath you in all over again like that first time, go back to that constant haze of us.

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Image: A black and white photo of 7yo Mouse. She is looking off to the side with a smile, her hair is braided and tied with a flower hairband.

Why am I writing this? Maybe so that when you are grown, you can have proof that yes, I knew what was happening. And yes, it was just as awful and miraculous as you could imagine. And yes, I’m screwing up and I know I’m screwing up, but I’m doing my best.

Most of all, I vow now to listen to you without agenda, without judgement, forever. Except when that is really hard for me, and then I ask for grace. I’ve known you for longer than you have memory, before your butterfly heart fluttered and took off on its own. I cannot forget the time before you flew away.

Love,

Me


Cutting Roots

Five years ago, we bought a house in a little East Oakland neighborhood called Maxwell Park, and I immediately ordered a bunch of bareroot trees from a nursery catalog. It was my first claim to an actual piece of dirt, and I wanted that dirt to bear literal fruit as soon as possible.

I knew that trimming the roots and cutting down the main trunk was good for a dormant tree, but my goodness did it feel all kinds of wrong. Latke and I stood in the backyard with what looked like little more than a few dead branches and a branch cutter and held our breaths. Snip. Snip. Snip. All said and done, we had a little mound of wet dirt with a few sticks poking out and only the promise of stone fruit one day.

We did get fruit, literally and figuratively. I gave birth to three of our four children in that house. My kids laid their heads to rest every night just a few feet from those trees. A thousand pretend worlds were created in that backyard as those trees silently spread their roots and pushed out leaves every spring. During LP’s first summer, we had the most delicious peaches I’d ever eaten.

Yet, life felt like a struggle. Despite the knowledge that we were doing all the things we were “supposed” to do, none of it felt very good. It is hard to put my finger on what exactly was so difficult because on paper, we had a decent life. And I was grateful for that life, our friends and family, the kids, the house.

Maybe it was Latke’s 12 hour a day work schedule, or looking into our financial future and realizing that we would never be able to outpace the Bay Area prices. Maybe it was the drought and sun and urbanity; I felt the constant urge to drive into a forest somewhere, climb a tree, and yell at the top of my lungs. Maybe it was the endless traffic that prevented me from going to any forests.

Everything felt like a compromise but I could never quite convince myself that any of it was worthwhile. Latke left for so many hours a day so we could have a roof over our heads. I put up with the toxic parents at the park complaining about their cleaning ladies and stressful tropical vacation planning so I could see my actual friends and their beautiful children. We lived in a neighborhood that felt unsafe at times, because we loved Oakland. I put up with the intellectual elitism of the Bay Area because I thought I couldn’t find such progressive politics anywhere else.

At some point in 2015, both Latke and I looked at each other and voiced what we’d been feeling for so long: Is this it? Is this the end game? Have we arrived?

So we did some root trimming this year.

Latke left his firm’s partnership and started his own practice and now works from home. We moved temporarily into my parents’ house (thank you, Mom and Dad!), sold our house, and… moved to Oregon. Yep. Beautiful, rainy, green, Oregon. We live right now in a little apartment, eventually we are going to buy a house with some acreage. The plan is to unschool with the kids, work a little less, play a lot more, and stop making so many compromises.

It hurt to trim those roots, to leave the place I’d grown up. We left behind some very dear friends and I miss being near my parents. I have some very visceral attachments with the Bay Area that I’ll always miss. Coming through the Caldecott tunnel and seeing the Port of Oakland and San Francisco stretched out on the water. The tule fog. The Korean restaurants I’d been going to since childhood. Driving along Ocean Beach. The produce. And the produce.

On the surface our new life is not very extraordinary. Latke still works full days. We took a fairly large financial loss to make the move happen. Things are unsettled; we haven’t totally found ourselves here, Latke’s legal practice is still in flux, we have piles of boxes in the garage unopened. I am still tired (thank you, Sparrow). I lose my temper, and I worry.

I think we are, once again, looking at a bare mount of dirt with some sticks poking out.

Yet I’m so grateful we left. We were able to get rid of a car because Latke works at home now. We eat nearly three meals a day together. Things are more flexible; the kids get to see their father more often and I don’t feel like I’m a one woman show for 12 hours a day. The six of us have been discovering the Willamette Valley, rain or shine. At the end of each day, Latke and I actually look at each other with smiles on our faces more often than not. We have had enough time to nurture our marriage and remember how much fun we have together.

I had no idea how much Latke and I had changed until he quit his job and suddenly began spending more time with the family. Our politics, bodies, hopes and dreams have all been shifting over the last seven or eight years. Which is normal and inevitable with the passage of time, but when I married him I wanted to evolve together, not just be two people sharing resources. It shocked me to think that we could have gone along like we did and one day looked at each other like strangers.

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Image Description: Aback and white picture of a boy (LP) and a girl (Chipmunk) on a seesaw. Behind them are an older girl (Mouse) and a baby (Sparrow). Everyone is wearing winter jackets, the park structures and houses are visible in the background.

At the end of the day, I kept coming back to these four people we have made. What are we going to teach our children? I don’t want to be the kind of parent who tries to prepare my children for the life compromises I never wanted to make. I want to be the kind of parent who prepares my children to make leaps that I can’t even comprehend yet. Given that, quitting your job and moving so you can unschool your children in the country seems like a baby step.

So that’s what we have been up to all these months I’ve been missing from this blog. There’s a lot more to it, of course. I’ve decided to get involved in DownSyndrome Achieves (an effort that will create a biobank for Down syndrome specific research purposes). I’ve been tossing around the idea of writing a collection of short stories. I want to slowly start thinking about what I’ll do when I leave PregnantOrNursingBabyLand. Maybe I’ll teach? Write? Start a family business?

I am remembering how to dream.


Two Years In: Down Syndrome, Recognition, and Pride

My son with Down syndrome was born just a little before Thanksgiving, two years ago. We became a family of five and entered into the holidays, excited and grateful.

Right around Christmas, my mind began to run in ways that I could not seem to put to rest. The features of his face… I couldn’t put my finger on it.

I don’t think I’ll ever forget that week between Christmas and New Year’s. One of those mornings, he opened his eyes.

Then came the flash of recognition.

The first thing I thought was, “Can people look like they have Down syndrome, without actually having it? Because there’s probably no way my kid has Down syndrome.”  The rest of that story is, of course, history. The next days and weeks were filled with a lot of confusion and soul-searching. I would not characterize that time as an easy period of my life.

I find myself pondering the word “recognition.” In that moment, was I maybe having a moment of “re” + “cognition”, as in, understanding again?

From my completely self-centered parent’s perspective, I can write about the holidays as forever being a time that will remind me of when I “discovered” that my son has Down syndrome. That’s pretty silly though. My son has always had Down syndrome, after all.

Two years later, my memories of that week are not entirely about grief, not about sadness or tears.  I’m not denying that part of the experience, but the larger picture is of the process of recognizing the truth that was before us.  Recognizing my baby for who he was, every part.

I’ve also learned from the disability community about the deeper meaning of recognition.  Look in the dictionary, and one will find recognition as not just acknowledgment, but also of legitimacy, validity, and acceptance.  I’ve listened to the words of countless disability advocates showing up every day, saying the hard truth, demanding recognition of what is true and just.  And with those demands, I see a whole lot of pride.  Loud and unapologetic pride.

Stella Young was a disability activist who passed away just a few weeks ago.  She had a tattoo that said, “You get proud by practicing.”  Young was one of the first writers in the disability community who really spoke to me, really shook me out of my confusion and made me reconsider everything I’d ever thought about disability.  Young’s tattoo comes from a poem by Laura Hershey, and I’ll put an excerpt here:

You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud,
Or a doctor.
You only need more practice.
You get proud by practicing.

I am not considered disabled.  I am a neurotypical, able-bodied person who is raising a child with a disability.  Yet I read Laura Hershey’s words, and I recognize that I, too, need to practice.  Why?  He’s two years old.  I’m his gateway.  I can either enable or block his path to power and pride.

As a parent, I cannot say that my entrance into the disability world was easy.  I doubt that it will ever be easy for me to walk this path; no parenting is.  But two years later, another holiday season is passing, and I’ve come to see an entirely different context for what I experienced.  Practice is hard, and practice might hurt, but I’m immeasurably grateful for beginning that journey.

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