The Upside of Down’s Syndrome

It’s now almost thirty-three years since my daughter Sarah was born…I wrote this post when she was 25. I’m sharing it today for Down Syndrome Awareness Day.

Sarah

Sarah

Over twenty-five years ago, I couldn’t have imagined that Sarah or I would have the opportunity to write this chapter in my daughter’s life.

Because of technology, I have a way to share her story. But it’s only because of the grace and generosity of our loving Father that Sarah has a place to live this story out.

When my twins, Sarah and Shannon, were born in 1983, the doctors told us that Sarah had Down’s Syndrome. They reassured us we wouldn’t have to take her home if we felt we couldn’t; there were “places” for babies like Sarah. Her place, her father and I had no doubt, was in our arms, in our hearts, and in our family. (see this post).

Early on in Sarah’s life, I learned to live one day at a time because to think otherwise sometimes emotionally paralyzed me. Imagine an abacus, where every bead is a different emotion. That’s life with Sarah. We’d slide from frustration to elation to despair to confusion to anger to acceptance, all the while realizing that the stakes were higher at each level.

A two-year-old with Down’s who hugs you? Cute. A thirty-two-year-old? Not so much. At least not to the public. Generally, women that age are not indiscriminately hugging strangers. We expected Sarah’s social skills to be what we expected from her brothers and sisters. Sometimes that was a challenge–for her siblings.

She spent four of her first sixteen months in hospitals. Two ambulance rides (one over 50 miles), a Life Flight, and one with me waving a white handkerchief out the window as I doubled the speed limit to reach a hospital 40 miles away. Before the age of two and before a vaccine existed, she had haemophilus influenza Type-B three times. She had GE-reflux, so doctors performed a fundoplication, which essentially involves wrapping the top of her stomach around her esophagus.

Then, because she had problems swallowing, the doctors inserted a temporary feeding tube. The second day home from the hospital, the tube caught between her toes during a diaper change, and she yanked it right out of her tummy. Another wild ride to the hospital. Thankfully, six months later, the tube was removed.

One memorable afternoon in high school, instead of riding home with me and her siblings (I taught there, the kids were students) Sarah decided to take the school bus home. She didn’t bother telling any of us. For a frantic two hours, we had absolutely no idea where she was. This, in the days before everyone in the known universe had a cell phone.

IMG_1209-1024x682

One memorable night in high school, Sarah’s father walked her out on the field during the Homecoming football game. In a campaign I’m sure was spear-headed by Shannon, Sarah was elected one of the two sophomore girls in our school of over 1,500 students voted to be on the Homecoming Court.

Sarah thrived in high school; she loved every moment of it. Sadly, Federal Law states that students like Sarah cannot stay past the age of 21 (22 if their birthday falls during the school year). We were in the process of attempting to place her in a local program when Katrina hit.

I’ve written posts before about the “thin threads” that God uses to connect us. Follow this one: Because of Katrina, my husband had to look for work. One of the places he looked was in Mississippi. The doctors with whom he interviewed mentioned a place called Mustard Seed. Of course, I googled it, and-even online-it seemed impressive. Ken ended up not taking the job in MS, so there wasn’t any reason to pursue Mustard Seed’s day program for Sarah. We moved to Lake Charles, which had an amazing program for Sarah.Two years later, we moved back. Nothing for Sarah in the parish we were moving back to. Nothing. (Long story as to why. Impairs my typing ability and blood pressure to even write about it.)

We contacted Mustard Seed. Ken, Sarah, and I visited. From the first step into the office, we knew that this truly was a Christian community devoted to the Seedsters. At the time, I couldn’t fathom Sarah not living at home, and I struggled with the decision. Another thread. There wasn’t an opening for Sarah to be a resident. Living almost three hours away made her being a day client impossible.

For an entire school year, she traveled to work with Ken. One hour to the clinic, one hour back. 600 miles a week.

In May, we find out there’s an opening. We take Sarah for a week, for a trial run. On the ride to pick her up, her sister Erin and I fretted about the next step. Will Sarah want to live there? What if she doesn’t? The “what if?” monster again.

We arrive, and while showing her sister Erin around, Sarah turns to her and says, “I’m going to live here. You and Shannon and John got to go to college. Now it’s my turn.”

The second day home from Mustard Seed, Sarah looked glum. I truly didn’t want to ask why for fear she’d tell me she didn’t want to return. Overcoming my ninny-factor, I asked Sarah why she was sad. She told me, “I don’t want to talk about it. It’s about Mustard Seed.”  And there it was; the very response I feared. And, because I knew I must, I asked, “What about Mustard Seed?” and tried to breathe as I waited.

She looked at me. “When do I get to go back?”

226_Racin_for_the_Seed

To witness the joy that radiates from Sarah as she experiences this independence is a gift. She is blossoming in this environment, and I’m awed by the courage and trust she embraced that allowed us to give her that trial week. Our Father has such spectacular plans in store for us that what we imagine is microscopic in comparison.

In my dreams, twenty-five years ago, dreams I almost dared not even express, she would have friends, work that she enjoyed, and the ability to make some decisions on her own in a safe and protected environment.

I prayed that she would be able to live life to its fullest. She is. And, in doing so, she’s teaching me how to do the same.

 

A Helluva Authorial Reinvention

christaallanblogMy husband thinks I should try writing erotica. For someone whose books have been published by Christian publishing houses, that’s one hell of an authorial reinvention.

I tried to explain to him that the problem isn’t the genre. It’s my aptitude for writing it. Just working out the logistics of two people kissing when I write can be a challenge. Erotica? I’d have body parts flying all over the place. Not to mention the paradigm shift in our personal sex life. Making love with writer’s brain (this goes there, he does this, she does that, oops…that didn’t work), and thinking one of those speech recognition software programs would be useful at the time.

I have given serious thought to introducing erotica in Christian fiction. Rumor has it that there are Christians who are actually having married-to-one-another sex and enjoying it. And, have you read “Song of Solomon” in the Bible lately? Clearly, a study in metaphoric sex: “his abdomen is carved in ivory” and her “orchard” blossoms, and he’s attracted to her “garden”? Then there’s this illustration of the Song of Solomon, which serves to demonstrate some of the inherent problems with literal interpretations.

Even J.K. Rowling is reinventing herself as evidenced by the outing of her as Robert Galbraith, author of The Cuckoo’s Calling, a crime novel released in April “praised by critics,” according to NBC News. She called the pseudonym a “liberating experience,” because of not having to endure the hype or pressure of being always Harry Potter author, J.K. Rowling. Not many seemed to mind that she published the Harry Potter series using the gender-neutal J.K. as opposed to her first name, Joanne.

But some think she may have pushed the boundaries of fabrication by claiming to be a married father-of-two and a former undercover police investigator.  The author bio on Amazon states, “After several years with the Royal Military Police, Robert Galbraith was attached to the SIB (Special Investigative Branch), the plain-clothes branch of the RMP. He left the military in 2003 and has been working since then in the civilian security industry. The idea for Cormoran Strike grew directly out of his own experiences and those of his military friends who returned to the civilian world.”

Does that mean there are boundaries to reinvention? You can assume a false name, but you can’t assume a false history related to your new identity? But, if fiction is, as Merriam-Webster defines it, “something invented by our imaginations,” are we going to restrict our reinventions? So, people are upset that she wasn’t honest about her alias? Seems rather oxymoronic or, at the very least, headache-inducing.

Female writers have hidden themselves under gender neutral or male names for centuries, even as recently as our own with Nora Roberts reinventing herself as J.D. Robb. Mary Ann Evans used George Eliot so that her work would be taken more seriously, Amantine Lucile Dupin published as George Sand, and even Harper Lee dropped her first name, Nellie. The author of The Outsiders, Susan Eliose Hinton, preceded Rowling as an author using only her initials, S.E.  Publisher’s Weekly wrote an article about male writers using women’s or gender-neutral names when writing romance.

It seems writers reinvent themselves because of reader perceptions, pre-conceived notions of males writing erotica or females writing grisly crime and detective stories. Or, as in centuries ago, readers not embracing women as writers. Sometimes it’s self-preseveration with publishing houses or even careers. When I taught high school, I don’t think parent conferences would have gone well if my name had been on the cover of Fifty Shades of Gray. Then again, if it had been, I wouldn’t need to be sitting in parent conferences…

I wonder, though, what our perceptions as writers are of readers that cause us to want to reinvent ourselves.

What happens when I decide to write outside of the genre that’s defined me for the five novels I’ve already written?

I’ll let you know.

In the meantime, do you feel duped by author pseudonyms? Would you follow a favorite author into any genre?

Post Formats is a theme feature introduced with Version 3.1. Post Formats can be used by a theme to customize its presentation of a post.

Lorem ipsum dolor sit amet, consectetuer adipiscing elit. Aenean commodo ligula eget dolor. Aenean massa. Cum sociis natoque penatibus et magnis dis parturient montes, nascetur ridiculus mus – more on WordPress.org: Post Formats