To the Parents of A Newborn Recently Diagnosed With Hearing Loss

You are fearful. You don’t know what this means for your child’s future, for your own. I want to promise you that it will be okay. Try not to let any of the joy over your newborn be drown out by worries for the future; the future will arrive with or without your worry; the future will take care of its own–you only need take care of your child, today.

When my son was diagnosed with bilateral hearing loss eight years ago, I sometimes let fears about his future drown out the joys of his babyhood. If only someone could have told me:

  1. Your son will be able to communicate with you–whether through ASL or spoken language or both. Audiologists, speech therapists, schools, even occupational therapists all will help you along the way. Just take it one small step at a time;
  2. Your son will have friends. He will. This is not something for you to be fretting about when he’s still small enough to rest in your arms. You will be his first friend;
  3. Your son may not be able to hear the rain on the roof, but he’ll probably be the one to notice the rain outside the window when it is first falling, when it looks like hazy vertical lines, barely perceptible to the human eye;
  4. Your son will play piano. Yes, he will! Stand ready to be amazed;
  5. Your son will be one of the best spellers in his second grade (mainstreamed classroom);fullsizeoutput_3ce2
  6. Your son will take a little longer to develop spoken language than your two older (hearing) children did, but he’ll learn to read earlier due to all of the speech training he had as a preschooler;
  7. The kids at your son’s school will mostly think his blue and yellow hearing aid is cool. Sometimes he’ll be asked questions about it, but he’s never been teased.
  8. Your son will be really into comics and he’ll read El Deafo by Cece Bell (after you bring it home from the library to read yourself) just after he turns eight. He’ll relate to how the artist expresses her issues with hearing loss; he’ll be grateful for advances in hearing technology.
  9. At age eight, your son will receive his third hearing aid. In just eight years, the technology has already improved vastly. There is reason to continuously hope for miraculous advances in hearing technology.
  10. Your son will have bad days, just like everyone else. He’ll also have times of life that are more difficult than other times (typically at points of high transition). But those bad days and hard times are rarely connected to the fact that he was born with bilateral mild to moderate hearing loss (now moderate to severe in his left ear).
  11. Your child’s hearing aids or other hearing assisted technology (like CIs) might be a hassle at first, might seem scary at first, might seem a whole bunch of work at first (you might even resent them at first), but you will, one day, see this technology as just an extension of your child and you may even love that technology (because it is so helpful to your child and because it has simply become another aspect of your beloved child); and finally,
  12. It is going to be okay! Try to believe this so that you can get busy enjoying your son (or daughter) for the unique and wonderful little person he (or she) is, right now!

 

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Flu 2018: How it Progressed

Embracing winter mind is all well and good until the smallest member of your household contracts the very bad, horrible, no good, really quite awful flu of 2018. Here’s how it progressed (to date):

  1. Sunday (2/4)–Flu came on suddenly with sore throat, chills, extreme fatigue, lack of appetite and low grade fever.
  2. Monday (2/5)–Fever climbed from 101 degrees to 104.2 later in the day. My child, who never naps, slept almost all day. No appetite whatsoever. Difficult to get fluids in him but I roused him periodically for sips of water. Still, I saw his lips getting dry. As the fever crested over the 104 point, I finally gave him Tylenol. This child has a mild clotting disorder (in addition to bilateral hearing loss and asthma), so Ibuprofen is not an option. In general, I let fevers run their course, but above 104 (and climbing), I was ready to move into action with a fever reducer. Tylenol brought the fever down to about 102 within two hours. With his sleeping schedule so off and feeling better on fever reducer, he was up for a few hours in the middle of the night. He urinated two times this day. Very dizzy. Needed help walking to bathroom.
  3. Tuesday (2/6)–Wakes feeling a little better. Fever hovers around 101 to 102 all day without fever reducer. At 8:10 am, while lying down, a nose bleed starts. Nose bleeds are difficult given his clotting disorder (not hemophilia). It took one hour to quell bleeding. Two times in the two hours thereafter, the clot was disrupted and we had more bleeding, but both were resolved in 20-30 minutes. This took us up to about 11 am. Slept most of afternoon. Woke up with fever down to 100 degrees. Yay. My husband came home from work early to spell me. Yay. And was here in time to witness and clean up the vomit of mostly blood and water. Child spends evening panicked about throwing up again. 3rd day with virtually no food.
  4. Wednesday (2/7)–Sleeps in as possibility of school is still out. Nose bleeds starts almost immediately upon waking. Bright red blood all over our light colored, eco-friendly wool carpet. My husband had only just pulled out of driveway. Called him back to deal with nosebleed while I scrubbed all of the blood spots on the carpet with mineral water (very very useful in getting out blood stains). Fever down to 99.0. Mostly a better day with some appetite returning. Cough begins late in day. Because my son has asthma, we started him using his nebulizer. Anxiety about potential of returning to school the following day (yes, this child also suffers from anxiety) and so he was very late falling to sleep. Peaceful sleep, however, once sleep comes.
  5. Thursday (2/8)–at least so far. Wakes up late. I let him sleep in (for him, this is 7:45 or 8). Wakes up with quite a cough. No fever. Use nebulizer. Almost normal appetite. No nose bleed. Yay! Epsom salt bath in warmest water he can tolerate to help start clearing toxins out and loosen lungs.
  6. Friday (2/9)–Cough begins and lasts about one week
  7. Thursday (2/15)–Josh comes home with plugged right ear (surgery ear) and cannot hear out of that ear.
  8. Tuesday (2/20)–See ENT. Ear looks fine from outside. She wants to order MRI if his hearing doesn’t return in a week or so.
  9. Monday (2/26)–Ear begins to clear up.
  10. Monday (3/3)–decent enough hearing test. No MRI ordered.

 

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I’ve been very mindful this week that my Great Aunt Teresa died 100 years ago, of the 1918 flu epidemic. I’m grateful for life, mine and my lovelies.

 

January 2016: Gratitude

I know it’s only the 21st, but I am already eager to put this month behind me. It’s been another month of ear issues (both ears this month) for Josh and we are not sure exactly what’s going on. We haven’t been able to get his ears stable enough/healthy long enough for even an audiology evaluation since October. He just finished up another course of strong, broad spectrum antibiotics. I have an essay coming out soon in The Mighty that will shed some light on how I feel about our latest run in with antibiotics.

In light of all of this, it is time for some mood-boosting gratitude.

  1. There is an owl living in one of the large pine trees behind my house. I hear him hooting each night at about 5:30 pm (dusk here in Minnesota in January) and sometimes just before dawn. I went out into the woods behind my house on Sunday, with my long wool coat over my PJ’s–it was ten below zero at the time, and I listened just below the tree. I cannot tell you what a singular thrill it is to hear an owl up close. But then, he decided to swoop down on some prey and I saw his wings spread over me (I wasn’t the prey). It will likely be one of the most awe-inspiring moments of my life. I feel most protective of this owl and sometimes I fancy the owl is protecting me.
  2. I’ve finally set up my own writing room in the upper level of my house. It is a light, airy space. It is a piece of heaven in my own home.
  3. Trampled by Turtle’s song “Duluth,” which gets me through these cold winters. “Still I like the quiet/Of Duluth in the winter/In the sacred bond/There’s no place like home.”
  4. The rosary. I’m not Catholic, but I’ve had lots of Catholics in my life, including my dad’s whole family. All of my kids have spent time in Catholic schools; now, Josh joins the ranks. He’s learned to pray the rosary. I’m learning too. I’ve thought much about how Mary was acquainted with this experience of watching her child suffer. I feel a kinship with her when I pray the rosary. Although, I’m not sure I’m doing it right, maybe “right” doesn’t matter so much as the act of saying this prayer with a willing heart.
  5. I was given the guidance to get my hands on a copy of Paul Kalanithi’s book When Breath Becomes Air. I elevated this book above the waiting 25 or so books on my “to read” list. I read this book in less than 24 hours; I will read this book again. It is a magnificent, life-changing read. I thank Paul for leaving behind surgery to write before he passed away last March. God be with you, Dr. Kalanithi. You’ve made a huge difference in how I view life, God, vocation, the act of writing, and how I view my son’s doctors and surgeons (I think I wanted them to be small gods–now I realize it can never be so; God can use members of the medical profession, but they will never be perfect, as life will never be perfect).
  6. My thesis project seems to be falling into place, during this second semester of thesis writing; and I have a new blog to support the putting of my thesis out into the world, when it is time. See www.heidifettigparton.com.
  7. I get to see the below view when I leave my local food co-op; even beautiful on cold winter mornings.

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Birthday Letter to My Five-Year Old

Josh at 5
Josh at 5

Dear Josh,

Someday, perhaps, you’ll read this blog that I’ve been keeping since just before you were born; you may also one day question why I completed baby books for your older siblings and have not written one word in your baby book. From the blog, you’ll surmise that, during the first five years of your life, I was immersed in worry and fear. From the empty baby book pages, you’ll perhaps ask why I failed to celebrate your milestones.

Just one month ago you turned five. I won’t lie; getting to age five was a bit like pushing a stone up the mountain. When you were born, I had just one night ensconced in the dreamy future before learning of your failed newborn hearing screening. After many bouts of false hope, you were definitively diagnosed with mild to moderate reverse-sloped, bilateral, conductive hearing loss at ten months of age. Back then, I grieved for you and the extra challenges you would face in life. I had no idea whether you’d join us in the world of spoken language. I knew, of course, that if you didn’t ever speak our language, we would learn how to speak yours.

Thanks to early intervention and hearing aid technology, at age five, you are fully lingual: a highly verbal, extraordinarily intelligent little boy. Lately, I’ve been thinking that perhaps you hit the “jackpot” of disabilities. Indeed, it was only because of your hearing loss that you received extensive speech therapy early in life. When your observant speech and language pathologist noticed issues with tongue weakness, she referred you to an occupational therapist. The occupational therapist further recognized and diagnosed Sensory Processing Disorder in you. This diagnosis allowed early and robust therapy with a disability that may have remained “hidden” and hindered you even more than your hearing loss. Because of your hard work with this same occupational therapist, most of your sensory issues have lessoned: some have disappeared.

My joy in you at age five is immense. To see you going down a slide or riding your bike, for me, borders on the miraculous. To hear you say to me yesterday, in your cowboy duds, “Now I’m going to wander the Wild West” makes me smile. I love how your words provide us glimpses into your vibrant “imaginated” (a Joshy word) world. Challenges have abounded in your short life and I know more challenges will come. Still, I am enjoying the view from the top of this particular mountain. And I am experimenting with a softer grip for the journey ahead because you’ve already shown me just how good you are at climbing mountains.

I love you so,

Mom

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Josh with big brother Ethan

15 Things: Gratitude With Photos

I was nominated by my dear (and long-known) friend, Julie, on Facebook to record three things I am grateful for each day for five days. It’s been sort of a wild and crazy past few days, so instead, I’ve decided to record 15 gratitudes all at once. I have many gratitude lists on this blog and so I’ve decided to change things up a bit today with a photo list. Indeed, thanks to the iPhone, I always have a camera at hand these days and tend to take photos in some of my most grateful moments; moments when I can truly let myself into the overflowing joy and abundance that, while always present, often gets choked out by my affinity for worry and mindless clamoring after the ever-elusive sense of control.

15 Gratitudes:

The Stone Arch Bridge
The Stone Arch Bridge

One: I am immensely grateful that I live in a place where there is such an abundance of accessible green space, even in the heart of the city.

The Guthrie Theater
The Guthrie Theater

Two: I am grateful for the depth and variety of cultural experiences available in the Twin Cities area.

Presiding over the Mill City Farmer's Market
Presiding over the Mill City Farmer’s Market

Three: I am grateful that on any given day from May to October, I can purchase locally-grown organic produce at countless Farmer’s Markets available throughout the Twin Cities area.

They're Always Waiting for me

Four: I am grateful for books. They are always waiting for me, no matter how much time has elapsed since we last had time together.

snow dog
snow dog

Five: I am grateful that I spent so many years in the cold, frozen tundra of North Dakota. Now Minneapolis winters are (mostly) a breeze (except last winter–that was truly a North Dakota kind of winter).

Superior Hiking Trail
Superior Hiking Trail

Six: I am grateful for the preservation of wild places; places where people can hear their soul speak.

From The Minnesota History Center's Currently Running Toy Exhibit
From The Minnesota History Center’s Currently Running Toy Exhibit

Seven: I am grateful that “my past” is now being preserved as history. The Minnesota History Center’s Exhibit on toys from the 50s, 60s, and 70s is extremely well curated and so worth seeing. I hail the efforts of all historic preservationists everywhere.

Wild Flowers
Wild Flowers

Eight: I am grateful that beauty erupts of its own accord. Life is celebrated daily by all of creation. Sometimes, finding this beauty is just a matter of changing one’s point of view. In this photo, if I turned the other way, I’d see a broken old highway.

Cottage Flowers
Cottage Flowers

Nine: I am grateful that we have been given the tools to help cultivate beauty in this world, if we so choose.

Vintage bowling pins and croquet balls.
Vintage bowling pins and croquet balls.

Ten: I am grateful for the thrill of the hunt. Wooded trail or estate sale? Tough decision. Either place, I touch down into the soft, unexposed underside where my dreams, hopes, and greatest love resides.

A Room of One's Own Cottage.
A Room of One’s Own Cottage.

Eleven: I am grateful for this little yellow cottage; a place where my voice has found it’s way to paper this past year.

Olson Family Cabin (photo credit: Tiffany Rae Fettig).
Olson Family Cabin (photo credit: Tiffany Rae Fettig).

Twelve: I am grateful for this little brown cabin that my Grandpa Roy built; a place that contains most of my very best memories (because, like Neil Young, “in my mind I still need a place to go”–from Helpless).

La Jolla, Ca.
La Jolla, Ca.

Thirteen: I am grateful for the deep love I’ve had in my life, as well as the joy found in letting go, repeatedly, of that which I love.

A place where Deaf and Hard of Hearing children learn to listen and speak
A place where Deaf and Hard of Hearing children learn to listen and speak

Fourteen: I am grateful that Minnesota mandated newborn hearing screening by the time Josh was born; I am grateful for early intervention so that now I can hear my four-year old tell me that he “might get carried away and decide to be Darth Vader” this year for Halloween. I am so grateful I get to hear all of the funny little things Josh has to say everyday.

The One (who gets me)
The One (who gets me)

Fifteen: We risked a good deal for this love; in return, it gave us everything. Gratitude.

The Itsy-Bitsy Cabin Brought Forth my First Draft

I’ve been busy this path month. I finished the first draft of my manuscript at 2:05 pm on July 9, 2014–just one day shy of my 44th birthday. At present, the manuscript comes in at just under 100,000 words. I completed the first draft at the itsy-bitsy cabin that I rent on the north shore of Lake Superior. After completing the manuscript, I danced all wild and crazy, alone in my hermitage, to DMB’s cover of Watchtower. I danced to celebrate a goal achieved. I danced all a burn with the fires of creative energy. I’ve worked three years writing this first draft and there were many times I almost quit writing (and I did, sometimes, for months at a time). Even if this particular book never publishes, at least I did it. It is written. The story has been told.

While up north, I was also gathering together the final pieces of my application for graduate school. It’s now official. I begin my MFA in Creative Nonfiction on August 25. Not sure if I’ll begin the editing process before I begin my MFA. I am sure my MFA program will be all encompassing for the next two years and so, if I don’t get back to revising this book until I graduate, it’s okay. I am sure it will end up being a better book for the time spent further developing my writing craft and skills; sculpting my editing and rewriting legs.

Unlike my previous attempt at graduate school in art history (Jan-March 2013), I really believe this is the right program for me at the right moment in my life. My writing never releases me to other endeavors; it’s had me all along. I just had to sit up and recognize that I cannot run from this path. I am both terrified and excited for my encore career. Bring it on.

Gratitude. Immense gratitude.

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Abandoned building in Grand Marais, MN.