Why ask why?

Why was Dane the only deaf one?

She was a very smart mom. She read, asked questions, pursued every internet link. Still, the biggest question was the one that might never have an answer: Why did this happen? Why is my baby deaf?

So we talked about that, this new mom and I. Although I have had this conversation countless times over the years, my part in it has changed. The names and faces have changed, the technology has changed, the service providers have changed, the laws have changed, the decades changed, but the emotions remain remarkably unchanged. For those hearing parents who are stunned to learn their baby can’t hear, the hierarchy of need invariably begins with wanting to know why.

When Dane was born, we didn’t know he couldn’t hear. It would take 18 months to get a definitive diagnosis: bilateral/profound sensorineural hearing loss of unknown etiology. Since there was no sure way to know why, we shifted to: What do we do now? If you are reading this newspaper, you know that part of that answer would become known as Hands & Voices.

Honestly, the question of why wasn’t on my mind. I felt it was unproductive to think in those terms. What would I do with that information anyway? As urgent as the issue is at the time of identification, it usually becomes a non-event over time for most of us who can never know for sure. Far more pressing things needed my attention. Blessedly, I quickly arrived in a place of acceptance with a deep sense that Dane was meant to be exactly as he was. I mean that sincerely.

I didn’t know there would ever be any more to know. There would be.

Because Why

In the beginning, understanding why is the prime objective for most families for various reasons.

Janel Frost (Michigan H&V) certainly felt that way, “As a mom, I needed to come to grips with how much of this was my fault. Mason was a micro-premie—I was not able to carry him the entire pregnancy. That was very bothersome for me. Mason was born at 24 weeks. Took me a long time to let go of blaming myself for all of this and to realize that I did the best I could to keep him alive. Falling in love with my child just as he is helped me to be ok with whatever prognosis was to come. The doctors were pretty certain as to the cause of his loss (ototoxic drugs to fight a blood infection while he was in the hospital). Knowing this did help me to understand the diagnosis and what we could do moving forward.”

Tony Ronco (California H&V) recalled how their concerns were feed by the internet and the unknown. He and wife Jenny “wanted to assess how much we needed to plan and prepare for unforeseen challenges ahead. According to an internet article Jenny found, (our daughter’s) Usher Syndrome had a similar way of popping up into families with no known history of deaf members. Once the genetic test for the main Usher Syndrome markers came back negative, we could focus more on the task at hand,” Tony said.

When Karen Wisinski (Michigan H&V) learned her son was deaf, she also wanted to know if there were any related medical issues or syndromes. “I’m a ‘want to know everything’ kind of girl for education reasons. I wanted to know the likelihood of progression so I could make good decisions regarding communication. Also, now that I know what the gene mutations are, I have Google notifications set up to tell me whenever new research comes out.”

Like Janel, Karen acknowledged the concern many parents have that they did something wrong that caused their child’s hearing loss. “It was nice for us to know because it turned out that a mutation likely came from each one of us, so we never blamed each other or ourselves after we got that info,” Karen said. “And I was relieved that I didn’t have to worry about other serious medical conditions.”

Helen Cotton-Leiser (Oregon H&V) was glad she knew first baby Ashlin’s deafness was genetic. “It was important to know as it gave us knowledge and understanding. I didn’t have to wonder if it was something I did during my pregnancy,” she explained. With this information in hand, hearing the news the second time was much easier, “We actually wanted our next child, Mikaylin, to also be deaf so Ashlin wouldn’t be the solo in her family.”

Cause and Effect

Reactions to getting the news that one’s baby is deaf vary greatly depending on the cause. While hearing parents are often laser-focused on cause, not so much in the Deaf Community. When a baby is born deaf to a Deaf family, there is usually joy at their common identity that is now being carried forward another generation. Ah, you are one of us! The etiology is almost certainly genetic, but in deaf of Deaf families, the cause feels anything but diagnostic or clinical. It’s about pride in their identity; it’s about something that feels good and right. It’s causal but a different kind of cause: because we are that kind of family—a Deaf family.

When you’re not that kind of family and you and everyone in it moves through the world with a heavy reliance on the sense of hearing, the cause can be perceived as something that went wrong—that’s how you would feel if you lost your hearing. Further, your baby is being identified in a clinical and diagnostic context which can be intimidating. It is understood that parents’ reactions can range from confusion to shock to disappointment to grief. Hearing families have to learn a whole new identity. For some, the process takes moments, for others, years, if ever. Regardless, all families need good, non-judgmental support to navigate this new and unknown terrain to get to a place of acceptance and assimilation.

Cause and Closure

For years and years, the “etiology” (cause) of Dane’s hearing loss remained unknown. We were typical in that regard, hearing parents with no other deafness we knew of in the family, not counting Tom’s great aunt who died over 80 years ago. His mom recalled her deafness had been caused by an illness, but no one knew for sure. Actually, there was one account of possible deafness on my side of the family that went back to the 1880s. In a discussion of genealogy, my Grandma Ross recounted the story of my paternal great-grandmother’s baby brother. “Wee Donald McGeachy” got lost and froze to death one hard winter because he couldn’t hear anyone calling him. Right when she came to that part, Grandma took a full-stop breath then exhaled, Oh Leeanne, do you think that’s where Dane gets his deafness?

How could we ever know?

This marked the era of Leeanne’s even more enthusiastic “It Just Doesn’t Matter” perspective. I steadfastly believed that the sooner one got through the colicky stages of denial—typified by “why did this happen?” self-pity—the better for everyone concerned, especially the child. During those years, I was in full H&V family support mode, but I would more likely be found on the front-lines of IEP advocacy than engaged in discussions of deaf etiology. I just couldn’t relate.

Fast forward to 2015 when I got one of those 23andMe™ DNA-testing kits for Christmas. I couldn’t wait to get the results showing how Scottish I was, and to learn what else might reside in my genes. Well, there it was under “Carrier Status”—a marker for deafness known as Connexin 26. H&V had a lot of resources about this, I was certainly familiar with it, I just didn’t know I had it. This meant Tom carried this mutation, too, since it takes two little ‘r’ recessive markers for this trait to cause deafness. Indeed, each of our babies had a 25% chance of being deaf. Both of our hearing children might carry one marker for deafness. Dane got two.

So a new conversation began. This time everyone was part of it—Dane’s siblings, the cousins, extended family on both sides, my parents, Tom’s family. I went to a relative’s wedding and saw a little boy with hearing aids so I chased his parents down during the reception and opened the discussion with them, too. (Awkward!) But all of the sudden, it mattered very much that deafness ran in our family, even if it only showed up every once in a century!

So why does it matter now when it didn’t before?

Ironically, it didn’t matter until we knew why. Then how it mattered became clear. We know this is not just about Dane—it’s about the deafness in all of us. It has made us feel closer to Dane on a cellular level. I even feel closer to wee Donald McGeachy, and his parents whose anguish still resides in my DNA five generations later, I mean that sincerely.

What if I had known all of this when Dane started asking me why he was deaf—and all I could say is, “I’m sorry, honey, we just don’t know.” By adolescence, his growing self-awareness that he was different from the rest of us caused such anguish for him. Why did he have to be the only deaf person in our family, he would ask with this loneliness and confusion and resentment in his eyes. What if I’d been able to say, “Oh, you’re not, my love. Your dad and I both have a gene for deafness. Deafness runs in our family on both sides. In every generation that we know of, someone has been deaf on either dad’s side or mine.”

Knowing why matters because it mattered to Dane, who is still perfect exactly as he is.

And it matters because another mother is trying to wrap her brain around this astonishing information about her new baby. She asks if I ever wondered why. Oh yes, I tell her, I can understand that. I mean that sincerely.

 

© Leeanne Seaver 1/2018 as featured in her regular column for The Hands & Voices Communicator.

character study

The grove of pecan trees had been planted generations earlier, long before Hodge was born in the shelling shed to Esperanza, who left him there when it was time to move on with the crew to pick the next farm. His mother gave him his first name, although he never used it. Also, the umber cast to his skin that set him apart in Missouri in 1927.

From Grigg Hamblin, Hodge would inherit the land where the trees had been set out in orderly rows along the floodplain.

From the trees, he got both a living and an identity. As if he’d been bred for it, and perhaps he was, Hodge was the special kind of being that is a pecan farmer. Atop sturdy, straight legs, he was mostly trunk supporting a thick V of shoulders, muscles knotting his arms down to long fingers. A head of nut-brown curls went uncut during the harvest season when he didn’t even bother to return to the house at night.

Arizona Hodges Hamblin belonged only to the trees, and that’s how it went until he was almost 30.

© 10/18

What’s in a Name

Currently editing my client’s book about 30 years in Indian Country (after 30 years growing close as family to a tribe, you get to say Indian Country, I’m told). Loved this story:

When I first met Dani Not Help Him, I asked about her surname: Not Help Him. I assumed that it was a name depicting someone who had somehow been shamed and not deserving of help. I did not understand “Not Help Him,” so I asked Dani to explain the meaning. She told me that the surname is derived from members of one of the warrior societies among the Lakota comprised of men who were destined to be the first line of defense against invaders or other tribes who might raid or battle the Lakota.

A warrior designated as Not Help Him was said to be so brave and so dedicated to the safety of the village that he would lay down his life for the tribe or village and nobody was supposed to help him as he performed his sacred duties to protect the village. She said that some Not Help Him warriors would go so far as to sink a stake into the ground and have another warrior lash their leg to it so that they could not retreat in the face of certain death. You were not to help him, Dani explained, because his death was in furtherance of the protection of his people. Just thinking of this, the dignity, the courage, and the generosity of these warriors brings a lump to my throat, to this day.

*(The man with the drum is a Nottawaseppi (the people who can hear the river) singer. This tribe has lived for generation upon generation in the Michigamme/Michigan: the place where food grows on water–a reference to wild rice. If I had a picture of a Lakota Not Help Him, I’d use it. My pictures are from Pow Wows in the Michigamme and markets and mountains in New Mexico where I love to walkabout listening with my lenses.)

What an incredible name. I had to see if I could find Dani Not Help Him by GTS (google that shit). I couldn’t, but I did find this obituary with a name even more incredible: http://www.lakotacountrytimes.com/news/2014-04-24/The_Holy_Road/Marie_Theresa_Not_Help_HimFox_Belly.html

“I told him about chairs but not about bushes.”

Plans are underway for an international conference set for this June in the lovely resort town of Bad Ischl high up in the Alps. I’m on the planning committee for this event and had to go looking this morning for some photos to use for promotional purposes. Here’s a shot I took and will use, along with what I wrote in 2016 that won’t make the promo:

I can’t recall why she said it, but the woman who said “I told him about chairs but not about bushes” is from Lithuania and struggles to express herself in English . . . so does the man from Mauritania who always smiles and has an enthusiastic YES down pat, but little else. He is a medical doctor in his world, but in this country he can barely order schnitzel. He greeted me over midmorning tea with, “How fine are you?”

The communication misfires are nothing short of poetic at times. I’m at a conference where at least 39 countries are represented, many of them small developing nations. I’ve rarely felt so ethnocentric (and ashamed of it). Elvira from Herzegovina says the flowers are so smelly here in Austria. Yes, I nod in agreement, they certainly are.

BECOMING MARJORIE launched!

Sharing the stage with (left to right) Rainy Day Books founder and owner, Vivien Jennings, Marjorie’s daughters Barbara and Debbie, the author (me!), and Marjorie’s friend and colleague, Janice Kreamer, Chair of the Kauffman Foundation.

More than two years ago, I began a book commission to capture the story of one of our nation’s unsung feminists–the sort of woman who wouldn’t have even called herself a feminist. It all culminated with an incredible launch week for me full of media interviews and promo stuff from September 19 to 24, 2017.  All those spoon-bending, how-in-the-heck-am-I-gonna-do-this hours spent (and will experience again–I’m already into the next commission) do somehow grow from an idea into the words and they find their pages and get beautifully bound and into the hands of readers.

The NPR gig: now to remember everything I wrote!

I’m going to give enormous credit to the most amazing artists who comprise 94 Design–Paul and Laura Adams. Their exquisitely art-directed style turned boxes of artifacts into thoughtful visual assets. This is our second book together and I really don’t want to ever try this without them. They make my concept real, and then they make even better than I hoped it could look.

Paul and Laura Adams of 94 Design are the consummate professionals behind the art-directed look.

If you’d like to learn more about the woman who prompted a book to be written about her amazing life and legacy 25 years after she died, she’s here:

BECOMING MARJORIE

http://www.rainydaybooks.com/search/site/Becoming%20Marjorie

 

more than words

Finally, we reach the part of the lake where sandy shallows wrap around a small peninsula. We tie the canoes to branches hanging low over the water. The big boys launch noisily in the direction a Frisbee is thrown. The other mothers call for life preservers. But the boys are already gone . . . drenched in a watersong. And I am drowning in it.

My son is not yet a very big boy. He’s a little blonde glint of a different world. He flips out of the boat like a sunfish off a line. He doesn’t hear his cousins calling him to join in because he can’t. He’s deaf . . . a Seer. Off he goes, enthralled in the company of many things only he is noticing.

I, too, am in a place apart. The lake is quicksilvering in syllables of light . . . the minnows tasting my toes. I write more than words across the water with a fingertip. Things I don’t say to the others.

All the girlfriends I had before are the other mothers. Even my sisters are the other mothers; my mother is one of the others, too. The world is now divided into the others and us . . . hearing and Deaf. And I don’t belong in either place but to the space between them. A bridger. It will be years before I can accept this as the Divine gift that it is.

The breeze writes back unintelligibly  in light ripples over the surface. Whatever it means gives me comfort.

Looking up, I see my little boy bending as far as possible until his ear touches the surface of the water . . . as though listening intently to it. His eyes closed in concentration. He reaches deeply for something. Half of his face submerges, the other half glows with feeling. He brings a clamshell like sunken treasure to the surface . . . checks it for a pearl.

~ Leeanne Seaver © 2014

 

$26 for the happiest day of his life

He knocked on my front door, needing money . . . the exact amount to the penny for a bus ticket to Chicago: $25.65

Did I have any odd jobs he could do?            (this got my respect)

Overcoming my default NO, I said I figured I had $5 for pulling weeds out of the cracks in my driveway.

It’ll help, he said. And he started yanking at the crabgrass.

After about five minutes, I couldn’t stand the white privilege roiling off me; I approached him with a better idea.

OK, I’ll cover the full price of your ticket if you write about the best day of your life.

He just stared at me, confused.

How do I do that, he asked.

So I handed him a can of Cherry Pepsi, something to sit on, a notepad and paper.

Just tell me what happened that made it happy, I said. Write what you remember.

I went back into my house. Every time I peeked through the curtain or around the door frame, the boy was writing intently.

After 20 minutes, I went to see how he was doing. I asked if he would read it to me and said he would, but it made him shy. Shyly, he read. Sensei-ish, I listened.

I liked his theme and told him so. He said he wasn’t done yet, so I went back to my work. Maybe 15 minutes later, he was ready. Did I want him to read it out loud again? I said no, you don’t have to.

He returned the notepad and pen. I shook his hand and gave him an envelope with $26 cash in it.

Congratulations, I said, this is your first paid writing project. You are now a writer. Don’t let anyone tell you otherwise. Go to Chicago and keep writing even if no one is paying you. One day they will. You’ll be amazed by your life one day.

I’ve no idea why I felt authorized to say that, but that’s what I said. I think I just always wanted someone to say that to me when I didn’t know who I was.

Then he smiled awkwardly, trying to hide his broken front teeth. He thanked me and walked off.

Later in the early evening, I was walking Nessy and saw a nearly full can of Cherry Pepsi sitting on the curb just up the next block from my place. It wasn’t thrown down, not even dented; somehow politely, it was just sitting there, punctuating the end of our exchange.

It charmed me.  It embarrassed me.  It was something I would have done at his age when I wasn’t brave enough to say no thank you . . . decades before I learned how to be the person  I myself needed when I was 17.

of the Moon

Last night, Kit and I went to the Full Moon Drumming, which was particularly wonderful during this, the Blood Moon. There was a big turnout. Instruments of all kinds were spread out on the ground for any newbies (like us) to borrow—fully engaged participation is the unspoken expectation. Interspersed were various art supplies that had presumably been used to put up promotional posters about the event, at least that’s what we figured the markers, scissors, etc., were beside the tambourines and maracas. Yet there was a tin can, fly swatter, knitting needles, and a knife sharpener, so who could be sure?

I’m not a musician but I can keep a beat, at least I thought I could. Then the tattooed guys with pony tails started beating rhythms out of the congas, snares, steel pans and African drums that were powerful and primal. Everything I tried to sync to that skewed highchair-baby-with-spoon. As soon as the first session winded down, I switched to cow bell and spent the next session trying to keep Will Farrell/SNL images out of my mind.

Maybe the fourth or fifth “drum conversation” in, I was finally getting the hang of it. I had settled at last on the triangle because…well, I just didn’t think you could mess up on the triangle. It always sounds nice. After a while, Kit gave me a look that inferred otherwise.

“Play something different,” she hissed.
“This is the only song I know on the triangle,” I replied.
“No, I mean a different instrument…anything…like a skein of yarn.”

She looked around desperately then handed me a glitter-glue stick, but I just tuned her out.

4/2014

the land of enchantment

Not that I could forget even for a moment, but this is Nuevo Mexico–the land of enchantment. Here the light is different. Brown is coral with copper and slate with pearl in bronze with smokey specs of silvery cerulean. My college friend Dan once said no one knows what is really happening inside brown until he’s gone to the desert.

Of course, it doesn’t stop there. New Mexico also blends blue and green in a thousand ways . . . even the swimming pool water is turquoise. It’s like the lens I’m seeing everything through has also altered the function of color . . . color is not just what it looks like but what it feels like here.

Yesterday, my friend gifted me with a 90-min massage with a shamanic man I’ll call Merlin. It hurt so bad I cried . . . I mean he wasn’t going to stop pressing his point until I cried, and once I started, I couldn’t stop even when I tried. It wasn’t even about physical pain any more. He put his hand over my eyes and I saw those bright lights that happen in false darkness. Then Merlin traced my tears with his fingers across my forehead and up into my hair. Next, he cupped his palm over my eyes and said see the vision now. That’s when his hand became a night sky . . . a coyote started howling out of my own voice. I was both in that room and somewhere out in the desert under a dark cloth of stars and I wasn’t me.

This is, after all, the land of enchantment . . . it’s not like they try to keep that a secret in New Mexico. Says so right on the license plates.

– September 2014, Albuquerque NM

a common wicasa

Young Bear would not let me take a picture of his hands.  He was self-conscious about missing a finger, but not over the way it looked.  It was because he had cut it off during a Sun dance, and that was a sacrifice, not a photo opp.  He said I am going to tell you things you cannot speak about later.

I do not share those things . . . they are for sacred knowing not blogposting.

So I spent the next hour with him, who pointed out many times that he was not a Wicasa Wakan, a Sacred Man, but just a common wicasa.  Still, he was working to elevate his people on their spiritual path; he was the man who bridged them at Death (which is not real, he pointed out) over the North Star down the Milky Way to the Death Star.

At the end of the Milky Way is the place where the spirits face the Smokey Mirror for judgment.  But the judgment is not from the Creator, who loves and accepts all wicasa.  It is the reflection of our own fears, shames and beliefs about ourselves that judge us.  We judge ourselves.  He knows this and his function with the tribes is to teach the people self-love.  If they know self-love, then they can face the Smoky Mirror and accept the Gift of their Life.  He gave me this Knowing to share.

Then he said that he would give me a gift, too, that would help me.  What did I need?  So I asked him if he could tell me about the Eagle Dream I had.   He nodded.  After I told him, he kept his eyes down on his hands, on the finger that wasn’t there, and after a while he started talking.  He told me things about it that were not given to me before, but still entirely synced to what I knew about this Dream.  He added some things I didn’t know, and my heart swelled with the Truth of what I’d been given…how it was instantly known to this man, the common wicasa.

Then he told me that if I want to keep the Gift of my Dream, I must give him a penny.  An exchange of things of value must be made before I could own it, before the Dream was really mine.  Except that I didn’t have a penny, so I gave him the compass I bought in Australia last fall that was hanging on my camera bag.  He studied it, then nodded approvingly.  He took it ceremoniously and hung it on his keychain.  Now the Dream is mine, and it will now come to pass, he said.  Then he told me more things I can’t speak about, although I do not know why…why extraordinary things like this happen to me, an even more common wicasa.

(This happened to me in North Dakota, Summer 2012; reposted by special request of BJHM)