Life Changes in a Moment

Each time a child is born, a family reconfigures itself. A couple become parents, an only child becomes a sibling. In families with several children, the baby is no longer the baby. We knew and expected this familiar shift last summer as we awaited the birth of our first daughter.

Then our girl arrived with her unexpected extra chromosome. Several essays about family were already mulling around in my brain when, a few weeks before Lyra was born, a friend suggested I start a blog. Since her birth and diagnoses (Ds + cataracts), there has been nothing else, for now, I can write about except this family. This includes politics & religion, which are, in my mind, intrinsic to family. Our beliefs are the windows from which we view the world and our places in it. And how others see us.

The beauty of a blog is that the author is in charge. I decide not only the topics (this family we’ve piggled together), but also the form. I find it somewhat impossible to write short, chirpy posts. I write essays. Perhaps I am limiting my readership by requiring more time and, frankly, work from readers but I am nonetheless committed to essays. Again, it seems I am incapable of anything else at the moment.

If essays require the reader to work, they require from the writer, at least this writer, hours of time, writing and re-writing, walking away and thinking only to write and re-write yet again. And more than anything, they require hours of uninterrupted silence.

Summertime, Summertime

I have written  two recent essays about how full up our house is now that everyone is home from school. And too, we have an added friend and her two dogs staying with us. Even when they aren’t forming a steady line of traffic into my office to ask what they promise are important questions (Can I eat last night’s leftovers for lunch? Do you know how much money is in my bank account? Can we go to the bird store when you’re done writing? Do you have any masking tape in your desk?), the cacophonous background noise dings and dents my attention like spitballs shot from modified Bic pens.

I am currently working on two essays of greater complexity. I’m beginning to think I will not finish them until September when four of our eight residents have returned to school, one in another state. So instead, I have worked on things I can do with regular interruption: Improving the look of Whoopsie Piggle–adding side bar features, including a link to all the “Lyra’s Latest” posts. Opening a gmail account for Whoopsie Piggle. Creating and purchasing Whoopsie Piggle business cards to take with me to the National Down Syndrome Congress conference. And at my request, Whoopsie Piggle has been linked to a site for Down syndrome blogs.

The Business of Writing

Which is to say, I’m using summer for the business of writing. You ask, “The business of writing?” Yes, the other side of being a writer is working to get you stuff out there. Getting published in one form or another. I’ve often wondered if some of the world’s best writing isn’t moldering in desk drawers because creativity and business savvy don’t always reside in one brain.  And perhaps therein lies the rub of blogging: anyone can do it because, in fact, it is self-publishing. In the old days (i.e. anything before 2000), self-publishing was synonymous with vanity publishing. People would spend small fortunes to have their book–be it memoir, novel, short story or poetry collection–printed and bound. Copies would be distributed to friends and when the author died, his or her family would have to decide what to do with the dozens, if not hundreds, of copies remaining in boxes in the basement.

Writing time so hard to come by, such a valuable commodity, I’m hard pressed to do anything but write, rather than work on submissions, whenever I can.

And so it is when other writers ask what I am doing these days, I find a distinct age break in their responses. When I tell writers over forty that I’m writing a blog, they struggle to keep their faces composed while saying something like, “Oh, really?” before quickly changing the subject. Writers under forty, however, light up with surprise at someone of my advanced age (47) working in this immediate, techno-format before saying, “That’s so cool! What’s the name of your blog? I’ll check it out,” as they type “Whoopsie Piggle” somewhere on their little smartphones.

True Confession: Part of why I’ve dedicated myself to writing in this format is because it’s all I have time for right now. As I’ve mentioned in prior essays, women writers in the canon are rarely mothers. It’s no coincidence. Getting published in anything credible takes not only talent, but time. Research is required to find where to submit, query letters must be written and sent, logs kept of submissions and so on. One can argue that it is easier to be a woman writer today. Perhaps. But I went off and had five kids and feel compelled to raise them all attachment style.

A Week of Whoopsie Piggle

July 4, 2013

Max and I get up at six a.m. because we both have work to do. I have over a hundred pages to proof and he has legal documents to write. When finished, we shower and pack. By 11 a.m., we are on the road to my stepmom’s in Charlevoix, Michigan. Three hours later, we stop in Ann Arbor, Michigan for coffee and to switch drivers. So Leif can shake a leg and run around while I nurse Lyra, I suggest we drink our Starbucks at an outside table. In one hand, Leif holds his favorite Thomas the Tank Engine. In the other hand is the race car, Lightning McQueen, of Pixar fame. Before I can even sit at a table, Leif bends over a metal rain grate in the grass and drops Lightening McQueen down a hole that is six feet deep. Nearly two hours later, after several valiant rescue attempts with a ball of duct tape wrapped around the end of a measuring tape, we convince Leif that his little red car is going on an adventure. Without Leif.

July 5, 2013

Max wakes up at six a.m. in our 1950s style cabin, quietly dresses and drives to town for coffee, crackers and whitefish paté (a Michigan treat for the adults), cereal and milk (a morning standard for the kids). Jules, who had been with his grandparents for the previous two weeks, shares a bed with Leif. As everyone dresses and eats, I search through all our bags for Lyra’s Synthroid, which she must take on an empty stomach at the same time every day. I cannot find it. We drop Jules and Leif at the grandparents’ house and spend the better part of three hours finding a pharmacy with the correct dosage and getting her prescription filled. When we rejoin the boys on Michigan Beach, Leif is asleep on a towel. I lie next to him and promptly doze while Max and Jules build earthworks in the sand.

July 6, 2013

I struggle after one of my annoying insomniac episodes. Two a.m. and * bing * I’m awake for three hours. As a result, I’m not the most pleasant person in the morning. Brittle, in fact. Max is patient and loads us all up in the car. We drive 50 miles north and cross the Mackinac Bridge (pronounced mack-in-awe), one of the world’s largest suspension bridges, which connects Michigan’s two peninsulas. North of the bridge is the Upper Peninsula, or UP. We find lunch before heading to a Lake Michigan beach that is banked by twenty-foot sand dunes. We play where the Brevoort River, its water the color of iced tea from tannic acid, empties into Lake Michigan, the lake’s water strikingly warmer than it is in Charlevoix. When we get back to the grandparents’ by 4 o’clock, we find that most frustrating of all family dynamics: miscommunication. Grandma had wanted to go with us. I thought she and Max had discussed it. He assumed she couldn’t travel that far. She didn’t want us to turn around after she realized we’d left, so she didn’t say anything until we returned. Sigh, sometimes even the simple things aren’t easy.

July 7, 2013

20 mph on I-75 all the way down Michigan. 13.5 hours of travel. With small children.

July 8, 2013

Post-trip errands. The usual—grocery store, bank, gas. And then I take Lyra for a thyroid blood draw. She’s clicking mentally these days, which is beyond great. Except when she looks me in the eyes as I hold her squirming body down for one nurse and then another as each of them root with a needle in her tiny arm, trying to find a vein to give them the blood they need to fill the order.

How can you let them do this? Lyra’s eyes look at me as though she’s just learned I’ve told her a lie that changes everything she understands.

“It’ll be okay, shhh-shhh,” I tell her.

You are supposed to protect me, this is not okay, they are hurting me, why aren’t you making them stop? She demands of me with her eyes.

July 9, 2013

After morning daycare, I drive Lyra to Medina where she not only does her bi-weekly physical therapy, but also has an occupational therapy evaluation. She does great and immediately picks up a toy with her left hand and transitions it to her right one. Still, she needs a little help with the getting things to her mouth and the pincer grip. More appointments are scheduled.

July 10, 2013

At 8 a.m., Lyra and I meet with her endocrinologist, who tells me her thyroid numbers are finally at therapeutic levels. And in one month I will get to hold her down for another blood draw before she has her next eye surgery.

That afternoon, Jules and Nancy watch a movie while I am working in my office. A storm erupts as though driven in by the four horsemen of the apocalypse. “Mama! Water is pouring in the basement!” Jules runs in to tell me. Only one of our basement windows, which are all glass blocked, has a small opening for ventilation. The drain in the window well of that window has backed up. While Nancy and Jules hold trashcans and storage bins under the window to catch the flowing water, I run outside. For over an hour, I heave five gallon buckets of water out of the window well. When the water is below the opening in the middle of the glass blocked window, Jules comes out and helps me. Five gallons weighs 40 pounds, Jules weighs 90. Yet he carried and dumped bucket after bucket for more than half an hour.

Providential: We were home and caught it as it happened. Equally miraculous was that none of us were struck by lightening as it exploded all around us for nearly two hours.

Oddest of all was our little emergency took place in the front of our house while traffic backed up on our busy street. Later, we discussed how it felt like we were part of some surreal staged drama.

Carry On

Two days after the flood, we welcomed a stranger to our home. Zac will be renting a room in my house, the house the boys and I lived in before we moved in with Max. Zac’s lease begins August first, but his classes started July 15. Last week, I volunteered to house him in our basement in the interim.  Well, scratch that. He’s staying on a mattress on the floor of our cramped enclosed porch.

Yes, that makes nine people in our house. Four of us, however, are leaving for Denver and the previously mentioned annual conference of the National Down Syndrome Congress. I am driving with Jules, Leif and Lyra. When Max flies out to join us, I imagine the house will feel empty sheltering only four adults.

A two-day drive each way, Colorado is our next adventure. It need not be exciting.

I’ll try and keep you posted.