Monthly Archives: June 2014

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.

Part 2: Defining and Defying: Discrimination of the Developmentally Disabled

Yesterday, I wrote about three babies in our Down syndrome community, all the same age as our daughter, Lyra, who died in the same week. One of the deaths sparked many national discussions on the issue of organ transplantation and whether or not people with disabilities are equitably placed on transplant lists. While touching on the issues of soft bigotry, I want to follow up and dig a little deeper on the issue of discrimination against the developmentally disabled. Though it is illegal to discriminate against a person with a developmental disability, it is undeniable that discrimination still occurs, which should come as no surprise. Ask any person of color if the illegality of racial discrimination has provided him or her with a life of equal treatment.

Discriminating against a specified group of people is to deny that they are fully human. To have those who make important decisions—medical professionals, law enforcement officials, teachers, employers, politicians, to name a few—deem a population as lesser human inevitably results in unequal access to medical care, justice, education, jobs and protection under the law as provided to those groups who are considered fully human.

A friend reminded me this morning of the American civil rights heroine, Ruby Bridges:

Ruby Bridges, a brave little African-American girl, entered an all-white school on November 14, 1960.

As soon as Bridges entered the school, white parents pulled their own children out; teachers refused to teach while a black child was enrolled.

Only one person agreed to teach Ruby and that was Barbara Henry, from Boston, Massachusetts, and for over a year Mrs. Henry taught her alone, “as if she were teaching a whole class.”

Every morning, as Bridges walked to school, one woman would threaten to poison her; because of this, the U.S. Marshals dispatched by President Eisenhower, who were overseeing her safety, only allowed Ruby to eat food that she brought from home.

Another woman at the school put a black baby doll in a wooden coffin and protested with it outside the school, a sight that Bridges said “scared me more than the nasty things people screamed at us.”

Though it was over 50 years ago, the openly vicious hatred of a little girl simply for the color of her skin doesn’t seem so long ago (perhaps because I was born only five years later). Yet today, who would question that this was unmitigated racism or that clearly Ruby was not seen as an equal human being in the eyes of many of the white citizens of her town? And  while there are those who still believe that black children should not attend schools with white children, they are not likely to stand screaming about it on the curbside with casketed effigies of black children.

No, today discrimination is subtle, which, in some ways makes it more pernicious than what Ruby Bridges faced. For one thing, it’s harder to identify and easier for the perpetrators of discrimination to genuinely believe they are not biased against a particular group of people. Such is clearly the case with developmentally disabled Americans in need of an organ transplant. As pointed out in this article (published in 2004), in light of the Americans with Disabilities Act becoming law in 1990, developmentally disabled Americans have “moved from automatic exclusion to selective inclusion” in organ transplantation, often meeting many barriers along the way that organ transplant candidates without developmental disabilities do not face. The methods are so subtle as to be unrecognizable even by the perpetrators themselves:

There is certainly a sense…that these negative attitudes often have as much to do with not being as energetic in treating people with disabilities as it does with being actively resistant to treating them. People have been and are the victims of both benign neglect and active denial of treatment. Many respondents have been told that surgery or transplantation was just not offered to people with disabilities.

So why are some medical professionals less energetic in treating people with developmental disabilities? In many articles I have read, patients and their families report being told by their medical professionals that persons with developmental disabilities are not capable of following the intensive post-transplant care regiments or that they do not physically handle transplant surgery as well as the typical population, yet the very opposite is true.

Maybe it is obvious, but the question needs to be asked: Why are people with developmental disabilities discriminated against, which by definition means that significant (and often powerful) members of society do not see the developmentally disabled as fully human? Personally, I believe exaggerated value is placed upon one component of being fully human—cognitive ability. That people with greater levels of intelligence are considered more valuable to society and their lives worth saving more so than the lives of the developmentally disabled. Never mind that the range of cognitive abilities in people with Down syndrome is wide, never mind that any threshold of intelligence is never a predictor of a productive life. And by productive, I mean many things beyond economics, for while it is true that more and more adults with Down syndrome are entering the workforce, there is immeasurable value in how one person affects the lives of so many others.

Which brings me back to the three little ones who died in the past seven days. Their lives have touched countless people. Perhaps those of us who have had intense discussions about organ transplant policies this week will carry on the work of defeating the discrimination against those with developmental disabilities so that instead of “selective inclusion” there will be equal access to organ transplants. I sure hope so.

However, if discrimination were removed entirely from the scene, people with disabilities would still have a problem getting life saving transplants because there are not enough organs.

SIGN UP TO BE AN ORGAN DONOR RIGHT AFTER YOU FINISH THIS ESSAY.

 

 

Part 1: A Painful Week in the Down Syndrome Community

Real Community, Virtually

When Lyra was four months old, I met a woman at a meeting for new parents of children with Down syndrome. A few weeks later, she sent me an invitation to join a Facebook group titled “(’12/’13) Moms with Kids Rockin’ the Extra Chromosome.” I remember thinking the title was a bit cumbersome, but I don’t recall what I expected when I clicked the “join” button. Not much I suspect for, at first, I hardly looked at or commented on the page. I was busy with my family, my baby and her diagnoses of Down syndrome and bi-lateral cataracts and all the adjustments that go along with any new baby. Today, I have a list of all I did not know or anticipate:

  • I thought the group was local, but it is not. Though most members are Americans, the group has families from all over the world.
  • I had not anticipated the value of an immediate and large group of moms whose kids with Down syndrome were the same age as my child and, therefore, will go through the same stages of development at roughly the same times as my child because…
  • It did not occur to me at first that this would be a lifelong group, but once it did I was floored that something like it hadn’t been created before and reminded that, for all its distractions, the Internet’s impact can be profoundly positive.
  • I could not have imagined how close I would become with some of the other moms. Back in the old days, before Facebook, I never participated in chat rooms. Even today, I do not belong to many Facebook groups. Yet there are women I have only met through this group whom I regularly turn to for input. Recently, one of the moms with whom I corresponded almost daily has largely dropped off due to a difficult pregnancy. I miss her as much as if I had a best friend living next door who moved to another state.
  • I did not know how much I could cherish the children who give us reason to have a Facebook group nor how invested I would feel in their developmental milestones. Videos of crawling, walking, talking, straw-sipping babies have me cheering in my seat at my computer as if I was watching the Chicago Cubs win the World Series.
  • I certainly did not expect my heart to be broken.

Then one week, in June of 2014, three babies died. Baby Fiona died after complications from her second heart surgery. Baby Ryder was fine when he went to bed, had a fever and rash in the morning and was gone by two in the afternoon. And Baby Annie. Baby Annie was not given a heart transplant, for reasons that remain unclear, and her family—mother, father, and two older sisters—have watched her progressively become weaker and bluer. She died early this morning.

Bad things happen all over the world each and every day and it is not humanly possible to feel the appropriate amount of grief for each loss. The deaths of these three babies hits home, however, and I do not recall a week in which I have cried so much and so hard for people I have never met, other than on Facebook.

“Why so many all at once?” my 13-year-old son, Jules, asked me as I wept over Baby Annie’s last photos. I told him I don’t know, but if a heart cannot be fixed, perhaps two years is a typical life expectancy.

The Hearts of Our Children

Forty percent of babies born with Down syndrome have some form of congenital heart disease. Some are easy fixes such as small holes that today can be surgically patched or sometimes even close on their own. Others are severe and may be beyond surgical repair, in which case the only option for survival is a heart transplant.

Baby Annie’s Facebook page stated the only thing that would save Annie’s life was a heart transplant but because she had Down syndrome, she was not placed on the donor list. The outrage of families whose children have DS has been potent. A petition appeared on Change.org asking President Obama to outlaw transplant discrimination for those who have developmental disabilities.

A day or two later, the National Down Syndrome Congress posted the following:

In 1996, Sandra Jensen, a 34-year-old woman with Down syndrome, needed a heart-lung transplant to survive. As far as anyone knew, she would be the first patient with Down syndrome to receive an organ transplant, and initially she was denied. Along with her doctor and her family, Sandra had to fight for the right to receive a transplant. The case gained nationwide attention, arguing that Down syndrome should not be enough to automatically deny a patient a transplant. Sandra won. In January, 1996, she received the requested transplant at Stanford University Medical Center. Her case was seen as a test of whether hospitals could use blanket categories to deny treatment. Since the passage of the Americans with Disabilities Act and the establishment of related federal regulations, discrimination against people with disabilities in medical treatment is prohibited.

Today, there is an internet petition (change.org) asking the President of the United States, “Why are children with Down syndrome not considered for organ transplants?” While we love grass roots advocacy, we want to set the record straight by saying it is not true that people with Down syndrome are automatically denied life saving treatment based on their diagnosis of Down syndrome today.

Making decisions around organ transplantation is a terribly complicated process, and the supply of organs for donation is quite limited. People are denied transplants for a variety of reasons. A patient who feels he is being denied solely on the basis of Down syndrome needs to appeal through the hospital system.

Make today the day you sign up to be an organ donor, and help more people receive the organs they desperately need.

Yes, organ transplantation is a complicated process with many factors necessarily taken into consideration. Yet there seems to be ample evidence and agreement that “soft” bigotry exists when it comes to placing a person with a developmental disability on a transplant list. Anecdotally, more than one mom on my Facebook group has had a cardiologist tell her that should all other options fail, a child with DS would not make it on the heart transplant list because a person with a developmental disability cannot be expected to follow through with the extensive post-operative care. (Hello? A two-year-old with or without Down syndrome is not the one responsible for the post-operative care, the caregivers are.) Yes, it is illegal to discriminate but at the end of the day the facts overwhelmingly point to inconsistencies in how doctors decide who to place on the donor lists and given the high proportion of congenital heart defects in children with DS, a disproportionately low number of people with DS make it onto the lists.

When we attended last summer’s NDSC convention, one of the biggest takeaways for me was how so many medical professionals in the United States have arcane and patently wrong notions about what it means to have Down syndrome. In the days after the convention I wrote “Fully Human and in Need of a Civil Rights Movement,” highlighting, in part, the existing discrimination against the developmentally disabled. It has been nearly a year since we attended our first NDSC convention and I have only become more aware and, yes, outraged, at the discrimination against people with developmental disabilities that continues largely unquestioned.

Max, whose professional paths, first as an English professor and later as a lawyer, have made him a stellar researcher, was on the computer until very late last night, trying to make sense of the organ transplant list issues. When he came to bed, he said, “Baby Annie will be the Rosa Parks on this issue, Holly; she will not die in vain.” I hope he is right and that the numerous conversations begun during her prolonged suffering and now, after her death, have infused momentum into individuals, groups, and national organizations to end disability bias in organ transplants.

There are so many details about Baby Annie’s medical journey that are unknown to the public. I read that a national Down syndrome organization was ready to advocate for her to be put on the list until they learned of further medical complications in her case. However, the fact that a national Down syndrome organization has as part of its mission the advocacy of organ transplants for people with DS underscores that soft bigotry is a pervasive and ongoing problem, which kills our children.

What We Can Do

Awareness is the first step to solving any problem. Please share this post, the posts of others and, certainly the articles linked here. And, as always, speak out to your politicians, many of whom may not even be aware a problem exists, just as I was unaware until these sweet babies left us.

Baby Fiona’s family started a wonderful non-profit after one of Fiona’s earlier hospitalizations. Fiona’s Hope Totes are care packages for families experiencing an unexpectedly extended hospital stay with a sick child. As of now, I believe the program is just in Minneapolis-St. Paul, Minnesota where Fiona lived with her family. I can easily imagine it becoming a national non-profit. Please consider donating to this charity to honor Fiona and help other families as they face medical odysseys.

Baby Annie was in hospice care for the last several weeks, surrounded by her family, who needless to say, did not leave her side. A fundraiser has been established to help her family. Please consider contributing to this family who has loved so hard and suffered so deeply.

And, finally, please, please, please become an organ donor today, if you have not already.

(Kimchilatkes I miss your sagacious ability to tease through complicated issues now more than ever. Your voice is sorely missed and will return, I hope, very soon.)

Lyra’s Latest: In Need of the Next Map

Our home has been temporarily rearranged. The water bowl for the dogs and cats is now commonly found on the kitchen counter while the bathroom trash cans currently reside atop the closed lids of the toilets. A paper grocery bag containing paper recycling was handily located in the kitchen. Lately it can be found a few feet away in a lower level vestibule, which is inaccessible to the littlest resident of our home who knows how to climb up, but not down, stairs. She mastered stair ascension when she discovered the bin of bath toys hidden in the empty tub, alongside of which is a single step.

Lyra reorganizesLyra, our curious baby, is on the move and eager to exercise her self-determined mission: find all containers, empty them of their contents and, before spreading said contents far and wide, taste as many of them as possible. Hence, the reorganization of our home, something I have had to do four times before when each of my boys were curious and accomplished crawlers. She may be older than they were at this stage, but she doesn’t look it. Furthermore, her mind works just as theirs did—once a container full of clean diapers or dirty trash, toys or recycling (all equally appealing it seems), has been discovered, the site is frequently revisited.

From my earliest conception of Whoopsie Piggle, I planned to write about our entire family and not just our youngest child, Lyra, and her diagnosis of Down syndrome because her diagnosis neither defines who she is as a person nor who we are as a family. Yes, her diagnosis helps us to understand her needs in order to better meet them, just as the diagnoses of dyslexia helped us to meet the needs of her older brothers, Claude and Jules. In fact, in the past few months it has been harder to write essays isolating the latest in Lyra’s life. On occasion we have bigger issues to address, but most days are entirely mundane and typical of any household with a crawling baby. Lyra is no longer brand new. She exhibits a fully formed personality with many things that make her giggle (her brother Leif, getting tossed in the air, singing to the pretty baby in the mirror, kisses on her neck) and others that make her howl (diaper changes, bedtime, hunger, blood draws, contact lens changes). Lyra is an integrated and integral member of our family. Certainly she has made great developmental strides thus far this year and yet this fact makes her seem all the more typical and her accomplishments less, not more, noteworthy.

A Babyhood of Appointments

The first few years of life for a child with Down syndrome often require regular interventions in order to acquire well-developed gross motor skills (sitting up, crawling, walking, running) and fine motor skills (i.e., purposeful hand skills such as self-feeding), and speech. The common culprit underlying these delays is not necessarily a cognitive issue, but hypotonia, or low muscle tone, which affects almost all babies with Down syndrome. In talking with parents of older children with DS, including adult children, many recall the constant work in the early years of their child’s life. Since she was three months old, Lyra has had regular therapies (speech, physical and occupational). For the last six months, she has gone twice a month to Akron Children’s Hospital for what they call an “infant block” in which all three of her therapies are conducted back-to-back by a team of therapists who discuss and coordinate her care.

When older children and adults receive therapies, as many people do after an injury or medical event, the therapist trains the individual. But when the client is a baby, the therapists train the caregivers more than the client. Yes, Lyra recognizes her therapists and knows her way around the room where they conduct her appointments. But to Lyra therapy must seem like a play date. The occupational therapist blows soap bubbles for Lyra to pop with her forefinger, the speech therapist looks into a mirror with Lyra as together they sing songs and practice sounds, and the physical therapist pulls out toys that engage Lyra so deeply she doesn’t notice she had to climb a small hill or stand up on her own to reach whatever bright, noisy (and oh-so-non-Waldorf) plaything the therapist uses as bait. And then we try to replicate it all at home.

Meanwhile, back at home, Lyra is also visited by her Summit County Developmental Disability Board caseworker and her Cleveland Sight Center caseworker, both of whom observe her progress and also make recommendations, generally taking into account our home environment. For example, instead of buying an expensive Little Tikes climbing wall, as Lyra’s pediatrician had urged, they helped me arrange the tumbling mat we own over some pillows, which Lyra now repeatedly climbs up and over.

Sometimes the folks coming to our home tell us the very same thing I hear at the hospital. Other times, they do not. For example, after Army-crawling for three months, Lyra began crawling on her hands and knees and soon thereafter she started what we call “bear-walking,” or walking on her hands and feet. And even though it has given Lyra a speed and facility at dumping out trash, recycling, toys and whatever else she can find, we have been rooting her on. It’s thrilling to see her motor around and the hospital’s physical therapist agreed. Her caseworkers were less excited. Sure, it’s great that she’s getting stronger and moving. But her back legs were being held too far apart, like an upside down wide V, putting pressure on her hip sockets. Along with hypotonia, people with Down syndrome commonly have ligament laxity and by stressing the exterior of her hip sockets, the caseworkers explained, Lyra can wear down her ligaments thereby opening the door for a host of other issues, including chronic pain.

The solution? Hip Helpers. We used these many months ago, when Lyra was learning to sit up on her own, but they were all but moth-balled since Lyra took off Army-crawling in January. Like a pair of tight spandex shorts, Lyra’s daycare provider and I both refer to them as Lyra’s “Spanx,” the modern day equivalent of a girdle. Hugo calls them Lyra’s “mermaid thingies” as they keep her thighs together like a big fish tail. Under her dresses and skirts, Lyra’s Hip Helpers look like baby shorts, stylish even. With them on, however, she cannot zip around as easily. For now, that is. The goal is to retrain Lyra’s legs to move correctly, and not splayed out, as she ambulates, something she is highly motivated to do (so many trash/toy/recycling bins, so little time).

For two weeks, Lyra wore her Hip Helpers all day, every day. Then we had our next Infant Block appointment at the hospital where the physical therapist pointed out that Lyra locked her knees more when wearing the Hip Helpers. Also important, the hospital therapist questioned making Lyra struggle with a skill she had just acquired (bear crawling). And so, we agreed upon the middle path (or the Buddhist take on pretty much everything)–not too much, not too little and, as of this week, our busy monkey spends about half her days in her Hip Helpers.

Speaking with a Star

I just saw an adult with DS at the movie theater and I wanted to run up and hug him. It was like a celebrity sighting LOL. Is that just me?

~A post on a Facebook group for mothers with babies born in 2012 and 2013 and diagnosed with Down syndrome.

Comedian Rob Snow and his wife, Ellen, who live in Northeast Ohio, founded the non-profit organization, Stand Up For Downs. In his routine titled, “We Need a Sign,” Snow describes a walk he took shortly after his son Henry was born with Down syndrome. When Snow saw a family of children running and playing in their yard, including a girl with Down syndrome, he was momentarily riveted as he watched the girl doing and being everything any other child her age would do or be. When the children ran off, Snow noticed a woman, presumably the girl’s mother, looking at him with irritation, if not outright anger. She thought he was a rude gawker. The moment was awkward and Snow quickly walked away without explaining that he had a newborn son with Down syndrome. We need a sign to let one another know, “Yeah, me too, my child has Down syndrome.”

I laughed throughout most of Snow’s routine at a new parent event sponsored by our local support group when Lyra was only a couple of months old. But as he described staring at the girl and not finding a way to talk with her mother, color rose up my neck and my ears became hot with embarrassment. When Lyra was perhaps a week or two old, we had taken her and the boys to Five Guys Burgers for lunch. Asleep in her car seat, Jules sat with Lyra at a table while the rest of us got in line. Behind us, but separated by another group of people, was a family that reverse-mirrored our own—instead of four boys and a baby girl, they had several daughters and little son, who appeared to be about Leif’s age, which was two-and-a-half at the time. Leif and the little boy pushed the red cordon, hung between posts to form an orderly queue at the restaurant, with their hands to make it swing back and forth. The two little boys were twin-like–they stood at the same height, had equally white-blonde hair, and deep blue eyes. But the other little boy’s eyes had the characteristic shape associated with Down syndrome. Staring does not describe my behavior. I scrutinized the child, who had on a red zip-up hoodie from the Gap and blue jeans, an outfit nearly identical to Leif’s, and only tore my eyes away to shyly smile at the child’s father, a big man with a beard who smiled in return. I wanted desperately to tell him and his wife that my new baby had been diagnosed with Down syndrome but I was uncharacteristically struck speechless.

In the first few months after Lyra was born and we learned she has Down syndrome, I regularly wondered how having an extra chromosome would effect Lyra. Would she talk? Would I be able to understand her? Would she develop like other children or would she be a perpetual infant? I did not know and nobody could tell us. Sighting an older child, even one who was only two or three years old, when Lyra’s life had just begun, loosened my mind’s grip on my worst fears by showing me: This too is possible, a child more alike than different.

Last weekend, we were seated in the waiting room of the lab at Akron Children’s Hospital where we take Lyra quarterly to have her blood drawn for a thyroid level check. A woman and teenaged girl with Down syndrome walked in and I (rudely) listened to the mother give her daughter’s date of birth to the receptionist. The girl had recently turned fourteen, which makes her only a couple of months older than our son Jules. With Lyra in my lap, the mother and daughter began talking to us before they sat down.

“She loves babies,” said the mother.

“Yes, I do!” said the daughter.

When the phlebotomist called for Lyra, Max took her back while I stayed and talked with the two women, and a pattern I’ve now seen many times emerged: the daughter spoke and then the mother repeated and/or clarified what her daughter said.

Me: I love your nail polish.

Girl: My mom did my toes, but I did my hands.

Mom: I did her feet, but she did her fingers, well, most of them I see. She’s so             independent; she tells me all the time, I’ll do it myself!

Me: What grade are you in?

Girl: Seventh grade. I love school, I’m a cheerleader.

Mom: She’s in the seventh grade; it’s a great school. They have a cheerleading squad called the “Sparkles.”

Girl: Yes, I’m a cheerleader.

Mom: She’s like a rock star at her school, seriously.

We stopped talking when Max brought out a sobbing Lyra with both elbows wrapped in Day-Glo pink cling tape, used these days instead of Band-aids to hold a gauze compress at the site of the blood draw. They had not been able to get a sample of Lyra’s blood and Max described a scene I’ve witnessed all too often in which the phlebotomist sticks Lyra’s arm with the needle but cannot find the vein and begins grinding the needle around in her arm in an attempt to locate the vein. We were told to bring her back on another day for another round of this torture.

As I begin comfort-nursing Lyra, the girl I had been talking with was called back for her blood draw and in what seems like less than a minute, she’s back out, tear-free.

“Wow, that was fast!” I told her.

“Yeah, I’m a big girl,” she said and Max slapped her a high-five.

Right Before Our Eyes—What We Did Not Know

“20/270, that eye is legally blind and 20/180, that eye is what they call ‘legally visually impaired’ but any school district would categorize her as legally blind,” said Lyra’s vision specialist.

“That’s with her contact lenses in?”

“Oh, yes. Without the contacts—well, she has no lenses inside her eyes, as you know, and without the contacts, it would be much worse.”

“But how can this be? Every time we see the ophthalmologist, he tells us her eyes look great and that he couldn’t be more pleased. And she sees us, the things she plays with. I mean, she certainly moves from one side of the kitchen to the other to get to the bag of paper recycling. Is it just that she remembers that it’s there?”

“Well, certainly her memory is helping play a role in how she uses her vision. This is a very non-medical explanation, but imagine what you see at 270 feet, she would need to be only 20 feet away to see the same thing. And I like to tell my parents that it is like a big funnel. Right now, Lyra is looking at the big world around her, but as she begins to focus on holding a crayon, writing, reading—really narrowing her field of vision for specific tasks, her visual limitations will become more apparent.”

I paused and thought of something I had long noticed: when Lyra is in my arms, her eyes are wide open, big and blue and often staring into my own. But when she is more than a couple feet away, she squints. I have a hard time capturing her in photos without her squinting, but usually when I am taking her picture, I am more than a couple of feet away. Just as when I try to read the clock in the morning without first putting on my glasses, Lyra squints in an effort to see more clearly.

“So what I want from you now,” I said, my voice becoming husky as I grabbed a tissue to mop the tears suddenly springing out from behind my glasses, “is for you to look into your crystal ball. Like, does this mean she’ll walk with a cane?”

“Well, first of all, I think her left eye is already better than when this last test was taken. And we have until she is about age five or six for her eyes to improve. Now when she starts walking, she’ll probably have glasses as well as her contacts because she’ll need the glasses to give her the ability to see in the distance, like a bifocal.”

“Okay.”

“But it’s good she’s crawling for so long because she is learning where all the bumps are in your floors.”

“Wow, so I guess we can never move from this house.”

“Nope,” said the vision specialist and smiling playfully she added, “Nor can you ever move the furniture.”

“So what about when she’s out? She will need a cane then?” The notion of Lyra walking with a cane suddenly became emblematic of everything I feared about her being blind: With just a glance, anyone would recognize her two disabilities for which she may be unfairly assessed as not capable of any number of things she deserves, including employment, housing, and civility.

“Well, I can’t say for sure, but I don’t think so. However, we will teach her techniques, such as sliding the outside of her hand, with her fingers cupped so they don’t get caught behind things like fire extinguishers, alongside the wall of a room she’s unfamiliar with so she’ll not run into things.”

“Ahh,” I say as it all starts to click.

All We Can Handle

I’ve long known that Lyra’s ophthalmologist does not like to talk about Lyra’s vision, or about what procedures, or outcomes to anticipate. I know this because he’s told me as much. I chalk it up to needing to wait and see how Lyra develops. If she does great with contact lenses, stick with contacts and avoid more surgery. At her strabismus surgeries last summer, her ophthalmologist told us that as she got older he would be able to put her in different, less bulbous, contact lenses. Her vision was corrected for the world of a baby, roughly up to two feet away, but he said that he’d change her correction as she got older and began walking.

Because of these conversations, we believed all along that Lyra was seeing, well normally, like most any other baby. Instead she’s legally blind. I only worried about it when another mother wrote to me, a woman I do not know but who recently was put in touch with me by a mutual friend. This woman’s son, who is a few months younger than Lyra, was also born with bilateral cataracts and now sees at 20/60 and 20/90 and she was worried about what his future would be like. I wrote and told this mother what we are doing for Lyra but never heard from her again and I wonder if it isn’t because Lyra’s vision is substantially worse than her son’s vision. Her letter inspired me to call Lyra’s vision specialist and ask her to sit down and tell me what a vision acuity score of 20/180 and 20/270 mean for Lyra long term.

I imagine had the ophthalmologist told me in detail at Lyra’s first surgeries, more than a year and a half ago, what we would be facing when she was older, it would have overwhelmed me or, at the least, been so much information on top of the information we needed in the immediate moment, that I would have forgotten much of what he said. To be honest, perhaps he did tell us much of what we now need to consider and it did slip into the cracks of my overloaded brain.

Climbing mountains, no matter how high, happens one step at a time.

Normal Is As Normal Does

Lyra will turn two in August. She talks, uses sign language, plays with her brothers and her daycare friends, sings songs, makes animal sounds on her own and when asked, crawls, “sorts” laundry, pats my back just as I pat hers, just as all my babies often patted my back when held up to my shoulder because that is what I do to them. Lyra’s daycare provider could not love Lyra more if she were her biological niece. Everyday of her life, everywhere she goes, Lyra is encouraged to move her body in ways that will protect her health long-term, and avoid issues such as displaced hips and pronated feet.

We did not anticipate how musical Lyra would be when we gave her a name related to the word “lyrical.” Perhaps the name was providentially chosen for nothing pleases Lyra more than singing. Much of her speech has developed through song, she is calmed by song when sad and I even use it as part of my arsenal to distract her when need be. Placing her in front of the mirror on my dresser, Lyra and I sing together while pulling her hair back into a ponytail, something she otherwise resists.

For several weeks, Lyra’s team, including everyone in the family, her therapists and her daycare provider have talked about how it’s coming together beautifully for Lyra and all the progress she has made and continues to make. At Akron Children’s Hospital, the therapists tell me, each and every visit, what a thrill it is for them to see what new things Lyra has learned since her previous visit.

Learning Lyra is legally blind was not devastating, but to use a cliché, I felt the wind drop from the sails of all that wonderful momentum in Lyra’s development. This too? Isn’t Down syndrome enough? But that is me feeling sorry mostly for me and not Lyra who, after all, only knows what she knows. For her, life is full of loving people and good times. She’s as happy as a baby should be and not moping about because she has to work harder to crawl and can’t see as well as anyone else she knows. Again, for now at least, she isn’t aware of any differences. Who knows how she’ll feel one day when she does realize how her life is different? My personal experience now having met so many people of all ages with Down syndrome, as well as the scientific research, gives me every reason to believe Lyra will be happy with who she is.

So we breathe in, breathe out and pick up the phone. First call: The ophthalmologist to learn what we can do to improve Lyra’s vision before she turns five years old. Second call: The vision specialist to learn what compensatory techniques Lyra can begin learning now.

And, as with all things, our journey continues. One step at a time.