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.

Dream Come True

One of the dreams I’ve had for Riley since she was born came true Saturday. She played her first softball game. I’ve been waiting 6 years for this day, and it was worth it. Seeing her swinging that bat, running the bases and stopping and throwing the ball made my heart so full. And except for a little trouble with the batting helmet, we had no problems with her cochlear implants, and she was able to hear the coaches telling her when to run and when to stop.

I started softball when I was 6 and played for 20 straight years, until I started working nights as a sportswriter. My mom and dad both played; heck, my little brother and I practically grew up on a ballfield. While they played on the field, we played behind the bleachers, using a wadded up paper cup as ball and our hands as the bat. My husband played baseball for years, too, and we both ended up with college scholarships.

Yeah, it’s a little selfish that I want her to play because I get such enjoyment from it, but I have other reasons. It’s healthy, it will keep her out of trouble and it will help her make friends and give her confidence.

The only trouble we had with her Freedoms was when she tried to put on her batting helmet the first couple of times. She got nervous and rushed and kept knocking the magnet coil off. Thankfully, on her third at-bat, she had figured out the way to do it and was ready to go.

This is her first at-bat; she went 3-for-3 in an 18-17 loss. In T-ball, each team bats until it scores six runs or makes three outs.

Here’s Riley taking third on a basehit by a teammate. She didn’t score this inning, she did after her final at-bat.

Here’s Papa making an emergency glove repair in the second or third inning. The lace along the thumb came out and had to be restrung and tightened. It worked because Riley stopped a ball later in the game when she was playing centerfield.

After the game she said, “The Pink Panthers didn’t win, but maybe next time.” Except for the nervousness over the helmet with her first two at-bats, everything went smoothly. She knew where to run, how to stop the ball and where to throw it. It was an awesome experience. Even if she decides she doesn’t want to play again, I will treasure this season with my little softballer. Go, #17! Go, Pink Panthers!
http://www.blogger.com/img/videoplayer.swf?videoUrl=http%3A%2F%2Fv1.nonxt3.googlevideo.com%2Fvideoplayback%3Fid%3Dc55e452e8e949fdf%26itag%3D5%26begin%3D0%26len%3D86400000%26app%3Dblogger%26et%3Dplay%26el%3DEMBEDDED%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1266314959%26sparams%3Did%252Citag%252Cip%252Cipbits%252Cexpire%26signature%3D32F0A3CD3DF209963ADBC684DE50B36A4200416B.409D134BAA305BF79F897F4183608F05D53E3CA8%26key%3Dck1&nogvlm=1&thumbnailUrl=http%3A%2F%2Fvideo.google.com%2FThumbnailServer2%3Fapp%3Dblogger%26contentid%3Dc55e452e8e949fdf%26offsetms%3D5000%26itag%3Dw320%26sigh%3DbMtmsq9S5ElJZMBQ-YxC1AC6dX0&messagesUrl=video.google.com%2FFlashUiStrings.xlb%3Fframe%3Dflashstrings%26hl%3Den

Sound Check Mama

Interesting name for a blog, isn’t it? I chose it for two reasons: because we have to check that Riley is hearing with her implants every day and because we love music.

We use the Ling 6 Sounds to make sure her implants are working properly and that she is hearing all the sounds she needs to to understand what’s being said. Daniel Ling, an expert in audiology and hearing loss, developed the system.

Ling 6
ah
ee
ooh
sh
sss
mmm

Of course, sound check also refers to what musicians do before a show to make sure their instruments, amps, microphones, speakers and voices work properly.

Hear now. And always.

I hope Cochlear’s tagline fits my daughter, Riley. She has bilateral cochlear implants – the first in October 2003, the second in April 2007. She was diagnosed with severe to profound, bilateral sensorineural hearing loss at 18 months, which is a long way of saying she could hear virtually nothing because of damage to the cochlea in each ear.

Today she is 6 and is excelling in kindergarten. She plays soccer and softball, loves to dance, sing and swim, and except for her brightly colored ear accessories, she’s a normal little girl.

This blog will tell about our journey from silence to sound. And since I’m starting five years into the process, “flashbacks” will appear as I dig through old journals, photo albums and videotapes.

The work is hard, but the frustration and fear are all worth it when I hear Riley’s sweet voice saying, “I love you, Mommy.”