15 minutes of fame … sort of

My story on hosting a playdate with a friend with special needs is in this month’s Parenting (School Years).
And my piece on cochlear implants and sports is in the July/August issue of Volta Voices, which should be arriving in my mailbox any day now. I also just got another assignment from VV for its back-to-school issue.

Another national magazine, this one published by a major medical association, is considering a pitch for its fall issue, too. Crossing my fingers that it comes through.

My freelance work is cruising along, and I am grinning and grateful!

You throw like a girl

Saturday at Riley’s softball practice, a different coach was running things because our regular coach was out of town.

As he was hitting grounders to the girls, this other dad walks by and jokingly says, “That guy in the red shirt throws like a girl,” and our coach turned around and tossed the ball at the fence where the other guy was.

First of all, what a STUPID thing to say in front of a team of 7- and 8-year-old GIRLS! Most of them can throw and throw well. And those who can’t are just learning.

Second, why does that putdown have to reference a girl? Why can’t they say, “You throw like a sissy”?

Third, I wanted to say, “And you sound like an idiot.” But I didn’t. I did say fairly loud, “Nothing wrong with throwing like a girl.”

It bothered me mostly because the guy saying it was obviously a dad (probably to boys) and the guy taking offense is a dad to GIRLS. I wish he’d said, “Yeah, and I’ll throw you out at the plate anytime.”

Girls are trashed for “throwing like girls,” and they’re trashed for being tomboys. We just can’t win.

That’s why I tell Riley she can play with Barbies and trucks. And there’s nothing wrong with a boy playing with trucks and dolls, either. They’ve got to learn how to care for children somewhere, right? 😉

Try to hit off this girl: Olympic gold medalist Jennie Finch

President Barack Obama sounds good

I blogged about our trip to see Obama when he was in Birmingham nearly a year ago. We had high hopes that day:

I’m glad we went, and I hope Riley will remember the day she danced and clapped and shouted and cheered for the person who could be the next president of the United States.

And today those hopes are on their way to being fulfilled. It wasn’t only about Obama becoming president; it’s about what he can and will do as president. It’s about what this country can become with him as president and the nation heading in the same direction, for the same purpose, to make this country the best it’s ever been.

Happy Inauguration Day! Now let’s get busy making changes in our own communities.

Bilateral CI daughter sings

Nothing is sweeter than hearing my bilateral CI daughter singing The Chipmunk Song and Jingle Bell Rock. Especially considering there was a time when we weren’t sure she’d even talk.

Yeah, she misses and messes up a few words, but when I was 7, I didn’t get “snowing and blowing up bushels of fun” either. She also loves to belt out We Wish You a Merry Christmas and Jingle Bells. We’re still working on Silent Night and Away in a Manger.

And, thanks to A Charlie Brown Christmas, she knows Hark! The Herald Angel Sings. And she sings it exactly as kids do in the cartoon: face upturned toward the heavens and mouth wide open!

This was her first Christmas to hear! She was 2 and loved everything, except Santa.

Remember When

Five years ago today, Riley heard our voices for the first time. One of these days I’m going to upload the video of her activation and make everyone else cry with me. 🙂

After her implant was turned on and we were given a lesson in our to work all the buttons and accessories (lots!), we went to eat lunch at O’Charley’s.

Which reminds me of a project I need to get started on: scanning in all the surgery and activation photos and uploading the videos.

Anyway, Happy Hearing Anniversary, Riley!! I love you, my girl, and I am so very proud of how hard you’ve worked and how far you’ve come.




It’s My Life

From world of silence to high-tech hearing
Tuesday, May 20, 2008
By Tiffani Hill-Patterson
The Huntsville Times

Complete silence. Can you imagine? Turn off the television. You probably can still hear the refrigerator hum in the kitchen.

Insert earplugs. You can still hear your own breathing.

But for 12,000 children born deaf each year in the United States, there are no lullabies, no birds singing, no comfort from mommy’s voice.

Just silence.

Silence was the world of our daughter, Riley, until she was nearly 2 years old.

We had suspected something for a couple of months, but we preferred to embrace denial.

How could anything be wrong with our sweet baby? Family and friends said there was no way she could be deaf. She turned her head toward us, she responded appropriately, and she babbled.

She was so good at feeling vibrations and reading our faces that she had all of us fooled.

May 7, 2003, changed our lives.

Grief, guilt and anger

“She’s never heard your voices. She doesn’t even know her name.”

The audiologist’s words knocked the wind out of us. We were devastated and in shock. Even though we had concerns, we weren’t ready for the diagnosis. Our perfect little girl was deaf – severe to profound hearing loss.

Our hearts were crushed. It was like the child we thought was ours didn’t exist.

Grief hit us hard. All the songs we had sung, all the “I love yous” we had whispered – she had heard none of them. That was the hardest thing to take. Did she even know we loved her?

Then came the guilt. How could we not know that our child was deaf? We knew people wondered that about us, and some even said it out loud. We just didn’t know. How could this have happened? No one in our family was deaf. Was it something I had done while I was pregnant? Had we done something wrong after she was born? Why had we waited so long?

The anger was next. Why had the nurses dismissed the second failed hearing test so easily? Why hadn’t her pediatrician noticed anything? C’mon! A little help here, please?

Finally acceptance came. We channeled our guilt and anger into providing Riley whatever she needed to hear and communicate. We set up appointments with a geneticist, an Auditory-Verbal speech therapist, an Early Intervention specialist, our insurance representative and an ENT surgeon. The time for tears was over. We looked ahead to Riley’s future with our chins up and shoulders squared.

Cochlear miracle
Two weeks after her diagnosis, Riley was fitted with high-powered digital hearing aids, and she started A-V therapy, which teaches children to listen and talk.

We also met with a geneticist at the University of Alabama at Birmingham, who told us after testing that Riley’s hearing loss was caused by the Connexin 26 gene. Both my husband and I carry mutations of the recessive gene. Finding out the cause was a relief, and knowing it wasn’t our fault freed us from a lot of our guilt.

After seeing that the hearing aids were not powerful enough, we began the process of getting a cochlear implant. On Sept. 16, 2003, Dr. Audie Woolley at Children’s Hospital in Birmingham did the surgery. On Oct. 9, 2003, our little girl heard our voices for the first time.

I wish you could see the video: She turned bright red, looked around, found us and started clapping and laughing. It was the most amazing thing I’ve ever witnessed.

Five years later, Riley has two cochlear implants and is about to finish kindergarten. She understands almost everything, and her language skills are catching up with normal-hearing peers. She plays soccer and softball, loves playing with other kids and loves to read.

Our daughter is a normal 6-year-old – she just has some colorful ear accessories.

Tiffani Hill-Patterson is a Times copy editor. Reach her at tiffani.patterson@ htimes.com.

© 2008 The Huntsville Times
© 2008 al.com All Rights Reserved.

Bilateral anniversary

Today is the first anniversary of Riley going bilateral. We sent Dr. Woolley a photo and note thanking him for helping her hear. He sent a nice one back. I also sent a card to Riley at school to mark the day.

I can’t believe it’s already been a year. The left CI has made such a difference in her speech recognition and expressive language skills. Yes, we still have work to do, but she catches on so much faster now. Why, it’s like having two ears! (almost)

And even though you’ve probably seen these photos before, I’m posting them again. 🙂

Leaving for the hotel the day before surgery

Family Portrait while waiting to go to OR

Just after surgery: I want a drink

Family Portrait after surgery

Our sleepy girl

Comforted by her Disney Princesses

“I’m going home, back to the place where I belong …”

At last, home in the big bed

We have a photo where I’m holding a days old Riley like this; she wanted to re-enact it, so we did.

Artwork while in recovery

My folks brought her the Barbie Big Wheel that was supposed to be a Christmas present, but because there was trouble putting it together it was delayed until now. 🙂

Taking a break from cruising on her Big Wheel in her Dorothy the Dinosaur hat, 5 days after surgery.

Thanks for reading … again!

Flashback: Roll over (January 2002)

Friday, Jan. 4, 2002
Riley rolled over from her tummy to her back. Earlier in the day she started really playing with her toys on her bouncy chair. She fussed, kicked and squealed at them.

Wednesday, Jan. 9, 2002
She was playing in her bouncy chair and I leaned over to talk to her. She reached out and grabbed by face and kept reaching to touch it. (How precious is this memory?)

Thursday, Jan. 10, 2002
She eats 5.5 oz every 3-4 hours and afterward she likes her paci as dessert; she will usually fall asleep. If she doesn’t, she likes to play in the bouncy and grab at her toys.

Friday, Jan. 18, 2002
Riley sees her hands and studies them. She watches as she moves them in front of her face, and she’s excited about it.

Wednesday, Jan. 30, 2002
Riley laughed out loud yesterday at Pansi.

Thursday, Jan. 31, 2002
I made her laugh out loud by making faces and talking to her. It was beautiful!

I love blogging about these little vignettes. They bring back such sweet memories, and I’m so glad I wrote them down as they happened. And kept the notebook!

Even though it brings back some sad memories, too, I’m getting so much enjoyment out of putting our journey into words and pictures. I’m remembering cute things Riley did as well as dumb stuff we did. But it’s all good, and it’s all led us to the place we are now, exactly where we’re supposed to be.

Smaller incisions, less shaving


The first two photos were taken after Riley’s first cochlear implant surgery (right ear) on September 16, 2003. The first picture shows the incision: a large cut shaped like a question mark. The red ribbon covers a bit of the cut. The second picture shows the first earpiece and coil, which were connected to the Sprint in the third photo.

The fourth photo is from her surgery (left ear) on April 16, 2007. The cut is much smaller: an “S” shape. Dr. Woolley left more hair on the top layer this time, too.

I need to snap a photo of Riley’s left ear with her Freedom and add it later.

Heartsick

I know it’s not doing me any good to go back and relive the “whys” and “whens” and “ifs,” but I’m doing it anyway and what I just found breaks my heart.

Nov. 5, 2001 … She wasn’t even a month old yet and we’d taken her for a follow-up hearing test because she failed the newborn test. I wrote in my calendar that year “Riley has to have another hearing test.”

“Riley has to have another hearing test.”

“Riley has to have another hearing test.”

What the … ? Why didn’t we get another one? Did we ever even think about it again? Oh my Lord. What have we done? Why did we wait? I truly don’t remember the hospital nurses telling us to get another test – I remember them telling us it was probably nothing and not to worry. Or maybe that was my way of coping after we did get the diagnosis, shifting the blame elsewhere? Because it’s just too painful to think I could’ve caused Riley to wait needlessly.

We could’ve known and got her treatment so early, instead of letting her go 18 months without hearing a sound. Eighteen months!!! She could’ve been fitted for hearing aids then and had her first cochlear implant surgery at 9-12 months. She wouldn’t have lost over a year of language input! My baby … I’m so, so sorry. How could I have forgotten another hearing test? How?

A week later she had a check-up with her pediatrician, who declared, “She’s doing great.”

And she was, except she couldn’t hear.

I write this not to make anyone feel sorry for us – most anyone would be angry with us for being so stupid and naive. I’m angry at myself. But I’m writing this for anyone else who is in the same situation.

If your baby fails a hearing screening twice, MAKE AN AUDIOLOGIST APPOINTMENT IMMEDIATELY! Don’t wait. You’ll either find that your baby is OK, or you’ll be able to start treatment sooner and your baby will have a much better, much easier time learning to communicate with spoken language.

I haven’t told anyone else about this, but I wanted to share it here in case anyone needed some prodding to make the appointment.

Keep listening …

One Small Voice from Tiffani on Vimeo.