Part 3: After a Dying Week

I should be packing. I leave in less than 48 hours to join my oldest son, Claude, in Spain for two weeks of backpacking adventures. It usually takes me one to two weeks to write (and re-re-re-re-re-write) an essay before I’ll post it and yet this essay is the third this week that I’ve written, and posted, in a few short hours.

It’s those three babies.

Providence or Coincidence

It’s often mentioned in Down syndrome communities that remarkable coincidences happen with seeming regularity. For many, they seem providential. Under “Religion” on my Facebook profile, I have “rabid agnostic.” Yes, I’m a practicing Buddhist, but who am I to say one religion is more true than another. (As a religious studies major in college I was often asked, especially at parties, which religion was the most true. Truth is in the eye of the believer and followers of all faiths equally believe in what they believe.) One person’s God is another person’s universal plan is another person’s coincidence.

I work at World Market. If you don’t know it, think Pier One with food. I don’t work there often—a closing shift, one or two times a week. Then, for no explained reason, I was scheduled from noon to five the Saturday before Father’s Day. A woman came to my register with Father’s Day cards. One of them pictured little bare feet below the hem of a dress standing atop a man’s pair of shoes, presumably dancing. I took a quick glance inside the card. With every step, I love you more. Happy Father’s Day.

“Oh, my, I think I’m gonna cry,” I said and promptly teared up.

“Oh, you really are!” said the customer.

“I’m sorry. I have a daughter with Down syndrome and a baby I know died yesterday after her second heart surgery. Her family is planning a funeral now, on Father’s Day weekend.”

Yes, I chat with my customers all the time, but this was far beyond anything I typically reveal. Thoughts of Baby Fiona’s family, which had not left me since I had heard the news, did not leave me when I clocked in at work. Baby Fiona, who had a successful second heart surgery, was sent home, only to be rushed back to the hospital two days later. She died five days after her surgery. As I’ve written before, her family started Fiona’s Hope Totes a year ago after Fiona’s first heart surgery, packages for families unexpectedly spending extended stays with a child in the hospital.

“Oh, please don’t apologize,” said the customer who was about my age. She gently continued, “I had a sister with Down syndrome who died when she was only one because, back then, they couldn’t operate on their hearts like they do now. It stayed with my parents for the rest of their lives.” I looked her in the eye and apologized for her family’s loss, briefly holding the moment together before the world rushed back in and I began ringing the rest of her items while cheerfully talking to her like any other customer.

Of all people, I lost my composure with someone who intimately understood what Fiona’s death meant.

Carrying On

Baby Fiona was buried this past Friday. The day before, a member of my Facebook group (moms with babies who have Down syndrome who were born in 2012 and 2013) took a card and a check to Fiona’s family. In a couple of days, we had collectively donated over $800 for Fiona’s Hope Totes.

Baby Annie, She of the Golden Heart, about whom I also wrote in “A Painful Week in the Down Syndrome Community,” was buried yesterday. On her Facebook page her family posted pictures of her tiny, white casket. I first saw a photo of her large, guardianesque father standing near the small, white box that now holds his daughter instead of his strong arms. A photo of her mother, seated in front of the casket with one of Annie’s sisters standing next to her, showed a woman who has been through hell and isn’t sure she will ever leave.

It’s not clear whether Annie was wrongly denied a heart transplant or not. But what is clear is that people with disabilities, including Down syndrome, do not have the same access to transplant lists as people without disabilities. Discrimination against the developmentally disabled is illegal, yes, but it has been clearly established that subtle discrimination greatly affects who gets on organ transplant lists. At the core of the issue is the value of human life. Who decides and why? Is it economics? Is it academics? Is it how many widgets a person can make? What factors are weighed in deciding who gets to live and who doesn’t? Who has a chance to survive and who must die in the arms of his or her devastated family?

What a Week

Anyone need a drink after this week? TGIF. Love ya, ladies. ~a mom on (‘12/’13) Moms with Kids Rockin’ the Extra Chromosome

Gallows humor. This weekend, many of us raised a toast to the deceased babies, their families, and each other.

Meanwhile, another friend has been with her mom in hospice for weeks, posting photos of days when her mom was young and feisty, her adoring father in many of them. A good death is like a good birth; if you are lucky, you are midwifed in and midwifed out. When the mother of my heart, my father’s mother, lay dying, I could not be with her because I lived more than a thousand miles away. But I have been there for others as they lay dying and it is a gift and an honor to be there.

As sad as we are when our elders leave—I miss my grandma daily—it is not the same as losing a child. Losing a child is to completely upturn the natural order of things and never have them completely set right again. My grandma lost her only daughter, shortly after birth, due to the Rh factor. Her lifelong grief so affected me that I refused to have an amniocentesis when I was pregnant with Lyra. My grandma had four boys and I have four boys. If I had done anything to risk it, I might have lost my only daughter just as she lost hers. Magical thinking? Perhaps. Yet I have never regretted my decision.

Uplifting Site

“What can I expect with her cataract surgery?” a new mother asked me a few months ago. Like Lyra, this woman’s daughter had been born with Down syndrome and bilateral cataracts. The baby has the same team of ophthalmologists as Lyra, which means I felt comfortable telling this mother not to worry, though of course she would. Baby H did fine with her eye surgeries, though one eye needed a second surgery to remove scar tissue. Earlier this year I had been in a marketing group in which all participants had family members who are developmentally disabled. One mom explained that her daughter had once worked at a mainstream job but now worked at a county program, which was better for her daughter socially because she enjoyed being in a program where the other people were like her. Remembering that, I decided immediately upon meeting Baby H’s mom that Baby H was destined to become Lyra’s best friend because the girls have so much in common.

Baby H was scheduled for heart surgery in July. After nearly two years of living with a baby with Down syndrome, a population of which forty percent are born with congenital heart defects, and I’m used to other babies going in for heart surgery. Open heart surgery seems strangely routine, no matter whether it’s a hole in the heart or something else. Ultimately, however, Baby H couldn’t wait until July. She was hospitalized on Mother’s Day and declared too weak for her to undergo the surgery she needed to fix why she was so sick. Weeks passed and Baby H remained in Akron Children’s Hospital PICU. I asked a friend who told me after last winter’s hospitalization of my son, Jules, that her mom had a direct line to God, to please have her mom pray for Baby H.

Two weeks ago, Baby H was strong enough for surgery. The surgery took hours upon hours and when done, her heart was too swollen for them to suture her chest. They closed her up a few days later. This week, she was finally extubated and her family has held her in their laps for the first time in over a month.

I went to Baby H’s Facebook page this week to lift my spirits.

Gratitude

When we learned after Lyra was born that she has Down syndrome and cataracts, Max and I told each other, Well, at least neither is life threatening. We thought we knew what we meant and we did. Intellectually. These past ten days have broken us down. We feel connected to these children with Down syndrome, and their families, who did not make it and both of us have cried repeatedly, suddenly and at length. Lately when I look at Lyra, all I see is her her energy, pink color and robust health.

Our hearts ache for the families of Ryder, Fiona and Annie Golden Heart (she’ll never be just Annie to us). It’s not the natural order of things to bury a child and I have no doubt that these parents, like the parents of my customer at World Market, will carry their children with them all of their days. The siblings too.

Fully Human

Now what happens? Here I’ve been working on a book proposal about the need for a civil rights movement for people with Down syndrome and I had no idea that there was undeniable discrimination with regards to who is placed on the transplant lists. It just didn’t occur to me. Now learned, I will not forget. I’ll carry it with me all of my days and do what I can to end this discrimination by continuing to write about what it is we can expect from people with Down syndrome, which is far more than most people realize. Educate those who do not know what it really means to have Down syndrome, especially those in the medical community, many of whom are woefully and shockingly unaware of the facts and yet often have the power, both positively and negatively, to make a difference. Advocate for people with Down syndrome to lead full and productive lives. Defy discrimination and stereotypes with each and every success story, exploding false and outdated conceptions of Down syndrome. Educate. Advocate. Defy.

I will do it. The mamas at my Facebook group are doing it. The folks and families at the Upside of Downs are doing it. Rob and Ellen Snow at Stand Up for Downs are doing it. The Down Syndrome Diagnosis Network is doing it. Numerous large national organizations, like the National Down Syndrome Congress and the National Down Syndrome Society, are doing it. Please join us in ending discrimination against the developmentally disabled. If I haven’t convinced you yet, stay tuned. I’m on a mission.