Thursday, October 02, 2008

18 Years Ago Today

I gave birth to my first child.

~ Hilary Ann ~

The day Hilary was born, I checked into the hospital around 7am to be induced. As soon as the pain became more than I wanted to bear, I got an epidural and delivered Hilary around noon. Piece of cake!

(My mom and Hilary. My mom was nurse manager of Labor & Delivery at the hospital where Hilary - and Mary and most my siblings' kids were born)

I returned to work after taking a three month maternity leave and Hilary went to Nanny Marlene's for child care. Our first year as new parents was fairly uneventful. Hilary was an easy and, in retrospect, quiet baby. When Hilary turned a year old, we had to find a new place for day care because Nanny Marlene only watched babies until they turned one. My Aunt said she would watch Hilary for us. About a month after my Aunt started watching Hilary, I got a phone call that rocked our perfect little world off its axis.

I still vividly remember the day my Aunt called me at work and told me - point blank - "I don't think Hilary can hear". I asked her why she would think that and she told me because just before she called me, someone had come to her door and the dog started barking really loud and everyone jumped, except Hilary. My Aunt noticed that Hilary never turned to see what the commotion was. After noticing that, my Aunt did the "banging of the pots" hearing test and, again, got no response. So, she called me.

I immediately made an appointment with my pediatrician. He tested Hilary's hearing by holding a bell by her ear and then watched to see if she would turn when he rang the bell. She did (because she could see the bell.) He said she could hear. My gut said she needed further testing, so I made an appointment with an ENT for a hearing test. I sat in the sound booth with Hilary on my lap and, to be honest, I had no idea what they were looking for, so when we came out of the testing I didn't have a feeling one way or the other if she could hear. Apparently, Hilary didn't do so well because the ENT ordered an ABR. I remember him telling me - "I think your daughter hears just fine, but let's double check for sure".

Hilary had her ABR in the afternoon as an outpatient procedure. After the test, the tech came out and told us that Hilary had a profound hearing loss in both ears. I felt like someone sucked the life out of me, right then and there. We left the appointment devastated and in complete shock.

The next day, I received a phone call at work from a woman with the Phoenix Day School for the Deaf Outreach Program. I laugh at myself now, but I told her that I wasn't sure that we would be needing their services because I hadn't yet received an official report from the doctor regarding the results of the ABR. The woman graciously didn't push and left me her telephone number in case I needed it. Little did I know that immediately after we left the ABR testing, they had called the Outreach Program based on the results. The following day, the same ENT who told me he thought my daughter could hear just fine, called to give me Hilary's official diagnosis: bilateral, severe to profound sensory-neural hearing loss. Hilary was deaf.

I picked up the phone and called the woman from the Outreach Program and, with defeat in my voice, said to her - "I guess I need your help".

A lot has happened over the last 17 years since Hilary's diagnosis. Initially, we all (my entire family, including my 70 year old grandmother) learned sign language. Hilary received homebound services until she turned three and then she attended Phoenix Day School for the Deaf preschool in their total communication program (both sign and spoken language).

Because Hilary's hearing loss was so severe, she received little to no benefit from hearing aids. After much discussion, Hilary received a cochlear implant when she was 4 1/2 years old. After being implanted, it became clear that the services Hilary needed to maximize the benefits of the cochlear implant did not exist in Arizona. I did my research and talked to other parents of children with cochlear implants and decided that we needed to move to St. Louis so that Hilary could attend the Central Institute for the Deaf - one of the best oral schools in the country and a place where a lot of research on cochlear implants was being conducted. Hilary would spend the next 6 years attending an oral school for the deaf. Hilary learned to "hear" with her implant, she learned to talk, and she learned to function (for the most part) in a hearing world.

Today, we celebrate 18 years of Hilary, in all her uniqueness. Hilary is very much an introvert and a loner and she is happiest being at home, in her room, pounding out a story on her laptop or drawing her latest cartoon. Hilary says she wants to be an animator. We aren't sure if traditional college is the place for Hilary because she sees most school work as a complete waste of time. Hilary has a gift for writing and drawing and hopefully, some day she will find her place in this world doing what she loves to do.

Happy Birthday Hilary ~ we love you!


Marissa said...

Hi Ann,

I "know" you through the trach message boards and have "lurked" there and on your blog for some time now.

I just wanted to write and let you know that you are an inspiration to me. You have such a beautiful family and I am blessed to find out more about them as I go along. I am a relative newbie at this life of being a special needs mommy and I can tell I have much to learn. Thank you for being so open and honest in your journey with not only Jack but your other children as well.

Feel free to stop by my daughter Marissa's blog:

Happy Birthday Hilary!!


Anonymous said...

Happy Birthday to you Hilary!

You are gifted and beautiful and have a bright future :o)

Enjoy your special day....

xo christina

Faith said...

Happy Birthday Hilary! You have over come so much and YOU are an inspiration to us. Thank you for letting your mom share your special story. You are a precious, beautiful, gift to this world!

Ann said...

Thanks for the birthday wishes for Hilary. I'll be sure and share them with her.

Marissa - thanks for introducing yourself. I'll be sure and check out your blog.


Ann said...

I mean "Alicia" thanks for introducing yourself.


julie w said...

Happy Birthday Hilary. Thanks for sharing her story. It sounds like she shares her mom's passion for the written word. If she can write as profoundly as you, Ann, she will go far. xx

Anonymous said...

I hope that you had a wonderful birthday Hilary. All the best,

betty said...

Ann -

My mother-in-law always thought the Moms should get the birthday presents after what they go through! She should know, since she had 10 full term pregnancies. So, Happy Birthday to Hilary and Happy Birth Day to you too.

Your recollection of learning of your first child's hearing loss really reminded me of when Will was diagnosed with the blindness around 6 months old. I remember the doctor, who was checking the vitrious bleeding from high intraventricular pressure for the 3rd and we thought last time, said "There's no visual response". I must have looked like I was to faint, since he backed off with jargon with words like "premie", "unsable neurologically". Your description of your reaction was so similar, it took me back.

Your posts about your daughters are always so nice. Both of the young ladies have a distinct voice, and I hope they both get what they want.

Have a great trip to St. Louis.

Dana said...

Just reading this post and I can't help but post. Happy belated Birthday Hilary. Ann your so wonderful with your kids!

Susan said...

Good God Ann! I had no idea about Hilary. I cannot believe you've also been through all that. Your strength and stamina is inspirational. I know you're sick of hearing that and wouldn't mind being able to be regular and "weak" but I just had to say it. Hilary is beautiful and I'm sure like any other 18 year old she will struggle through the next few years to find her place in the world, but it will happen. You've raised some wonderful children. Hugs.