Opening Up

Last night was kindergarten registration. We took Norah, who is almost 5 and she was so excited. I was excited, but mostly scared. Scared because I can't control the future, the world, the noises around her, I can't make her hear everything that I hear.
Norah was diagnosed as hard of hearing at 3 1/2 years old. Norah wears hearing aids.
Some of you may be wondering how we could have missed something so important as hearing, but we were so focused on Norah's brain development, Norah's milestones declaring her normal, her tone, and being seizure free and off seizure medication. The fact that she talked less than her sister and was naughtier than most seemed like little things in the trade off.
Norah was a VBAC gone terribly wrong. If you don't know that term I'll let you look it up yourself. My pregnancy was uneventful, my prenatal care was 2nd to none, and we were financially ready for an addition to our family. What we didn't count on was poorly managed labor and delivery and a helicopter ride to the Mayo Clinic for a baby with Apgar scores of 1. We certainly didn't plan for the seizures that followed an the scary diagnosis of hypoxic ischemic encephalopathy. Statistically Norah is a miracle that she is alive. More miraculous is that she is not severely disabled.
When Norah was 3 we were told our naughty girl was by all pediatric neurologists criteria beautifully, perfectly normal and she had passed her newborn hearing screening. Why would we suspect anything?
When we went to the MN mandated preschool screening Norah did exceptionally on all the academic testing. Then came the hearing tests, she raised her hand for some of the beeps but after awhile decided she was bored and started misbehaving. I sat lamely next to her trying to coax her to raise her hand when I (without headphones on) could hear the beeps. Why was she being such a brat? The person performing the test suggested we come back in 6 months and retest her when she was more mature.
At this point I took matters into my own hands, I wasn't waiting 6 months for my miracle child to pass a hearing test. The first pediatrician told me she must have fluid on her ears. We should give her an antihistamine. We tried that for a week and I came back. Still Norah was awful after the first few beeps. The pediatrician said we should take her to an audiologist, so I made an appointment. When I went to the appointment I was fully educated on ear tubes. I was completely blindsided when the audiologist very flatly told me "Your daughter has severe high-frequency hearing loss and will need hearing aids." Then she told me to make a follow up appointment and sent me on my way.
After some stops and starts we finally found our way to Dr. Jennifer at the U of MN. She changed our worlds from Norah on up. Pediatric audiology is a specialty I never knew existed, but am thankful for everyday.
The day Norah began wearing hearing aids was the worst day of my life. She was getting a lot of new information that she wasn't sure she wanted. She must have pulled them out 500 times and I put them in 501. I was crying she was crying. The next day we were down to 200 times, then 50, and on the fourth day she told us "I think I love my hearing aids." They have been in ever since except bedtime.
Sometimes at bedtime, when Norah is asleep I go into her bedroom and hold her. I look at her little perfectly formed ears without their hearing aids and I feel sad. I feel sad for her, I feel sad for me. I feel afraid for the future and I feel angry. Angry that her hearing loss was preventable. The 15 minutes after her birth where she wasn't breathing damaged her ears and I didn't know and I couldn't stop it.

Note to readers: Thank you for letting me share this with you. It is hard for me to write, but I am hopeful for Norah's future and need to get this stuff out of my system for my own future.
We have a wonderful family and support system. Norah has amazing teachers and a world class audiologist. Thank you for reading.

That's It!

When I was in high school the school began requiring notes from the doctor or dentist when a student was going to be out of school for an appointment. I would never describe my mom as someone who is a rule breaker, but the idea that the school didn't trust a note from her, and required documentation from a doctor really ticked her off. I recall a note she wrote to the school saying I would be leaving school midday for a dental appointment and the note went something like this:

"Sheridan will be leaving school at 11am today for a dental appointment and THAT'S IT!"

At the time I thought little of it, but somehow the "THAT'S IT!" part of the note really strikes a chord with me today. It's a simple way to say, I don't want your opinion on the topic, I have made the final ruling, there will be no further discussion.

Dinner tonight is chicken pot pie, and THAT'S IT!
If your laundry isn't in the laundry basket it won't get washed, THAT'S IT!
Bedtime is 7:30, THAT'S IT!
No, I don't feel like cuddling tonight and THAT'S IT!
Yes, you need to pick up (insert child name) from (insert activity) and THAT'S IT!

Today I used these magical word when calling our health insurance company regarding hearing aid coverage for children, which no one seems to know about. When the nice lady offered to look into it and "get back to me real soon," I responded sweetly "That would be great, I expect to hear from you today though, and THAT'S IT!" It worked, she called me back 30 minutes later with loads of information. I firmly believe my "THAT'S IT!" made all the difference.

I recommend you practice different tones when you say these power packed words, play a little with volume and force and even tone, and be careful not to abuse them thus diminishing their effectiveness.

If you have some "magic" words that work for you, post comments and tell me what they are.

Salsa Joe's

When reflecting on the past year of my life I've realized that ears have been a primary theme. Yes, ears. Some of you may know that after a very difficult and traumatic birth and a few years of thinking everything was AOK we found out our middle daughter, Norah, was hard of hearing. What a journey this has been and a loud one at that!

I should mention that she did pass her newborn screening, but has had hearing loss since birth, so while the newborn screening has been very beneficial for some, it isn't perfect, so when it comes to your babies, trust your gut.

In the past year I have spent a lot of time crying, feeling guilty, sad, angry and sometimes downright furious that my child has to wear two hearing aids that are an outward sign of imperfection.

In this society, no matter how evolved with think we are, people notice things like hearing aids. At first I struggled when Norah wanted to wear her hair in ponytails, or buns, and then I realized I was putting my hang-ups on her. Norah wears little golden hearing aids (the part behind her ear) with purple sparkly earmolds (the part that goes in her ear). We also found something great called Tuberiders to help her accessorize even more. She wears her hair up most days because she is very proud of her hearing aids and likes to show them off. While Norah attends an oral school called Northern Voices for deaf and hard of hearing kids, she has recently began attending an early childhood class to help ease her transition to kindergarten next year and I am happy to report several of the children want hearing aids like Norah's!

This past year we have seen more happiness and successes than I ever imagined, and all of our children are developing a tolerance for diversity that I never could have taught them. My husband and I are developing a gratitude and understanding for those that have gone before us to advocate for their children. We are working to advocate for Norah everyday and make the needed changes to our daily lifestyles to accomodate her needs, sometimes small things like a little book light in the car so she can talk to her sister on dark car rides with the assistance of lip reading. I repeat myself a lot for Norah, as we all do, and when we listen to music we really turn it up. We don't have the TV all the time at home, because that causes a distraction for her.

Most of all we've learned to listen. Listen to Norah when she talks, because her language has seen a major explosion this past year, listen to our older daughter when she talks about her day and realize that being Norah's older sister is no easy task, and listen to our little Henry when he points to his ears and says "hearin' aids" and then we all have a laugh. How many 21 month olds can say that?

I will leave you with a list of some famous folks with hearing loss that wear hearing aids.

How many surprise you?

• Ronald Reagan
• Bill Clinton
• Lou Ferrigno - The Incredible Hulk
• Ludwig van Beethoven
• Rush Limbaugh (has a cochlear implant)
• Arnold Palmer
• Thomas Edison
• Mike Singletary - Go Bears!
• Leslie Nielsen
• Al Unser - Race Car Driver
• Bobby Unser - Race Car Driver
• Huey Lewis
• Juliette Low - Founder of Girl Scouts

Meat Circles

Dinner is in the oven, the kitchen is clean, no one is fighting, I have gone through the backpacks, marked new activities on the calendar. Now I just need some energy to propel me through the next 2+ hours until bedtime.

I wrote my first blog post last night and then had a huge panic, I should delete this, I don't want to put myself out there for everyone to read, especially when I have stuff of such little importance to share. Then I decided, to heck with it. This is about me, not you.

Some of you know, some of you don't but we have a child with a disability. I have somehow rationalized in my head that my daughter doesn't really qualify under the disabled umbrella, because she isn't "that disabled." Really, professionals have told me that, school professionals. Granted they maybe said it so they don't have to fund my child who isn't "that disabled." My daughter, N (age 4) is hard of hearing, I still can't make myself categorize her as deaf, like so many of the people do. Her hearing loss is from her birth, which was very traumatic, I may write about it someday when I am either very drunk or deep in a pity party. Although I don't drink so just wait for a pity party day.

So my perfect daughter wears hearing aids. They are very cute, she wears them with style and they help. We do not sign with her, we have her in a special school for deaf and hard of hearing kids, Northern Voices is the name of it. This school has changed our world. Our family is better because this school exists. The primary focus of this school is oral education for hard of hearing/deaf kids. N also has begun attending the school districts offerings too, partly as a way to work with them to get funding for Northern Voices, and partly to help N transition into kindergarten in a world that isn't filled with hearing aids and cochlear implants.

That's all I am going to write for today, except I should explain the title of today's post shouldn't I? I feel like I need some sort of theme for them, so until I come up with a good theme I am just going to title my posts with the dinner menu for that night at our house. Meat Circles are actually turkey kielbasa (you know, ring bologna?) that's what my kids call it, that's what it is.