A Fork in the Road

Mothers Day 2013

Mothers Day 2013

Our daughter is deaf.

Well technically she has “severe to profound sensorineural hearing loss”, but what that really means to us is she is completely deaf. Not partially deaf, not hard of hearing – flat out deaf. No sounds, no frequencies, nothing.

I know almost nothing about hearing loss – it doesn’t run in my family, I didn’t grow up with it, I don’t know anyone with hearing problems. Same is true for my wife Eliza. Sure I remember the occasional kid in grade school with hearing aids, but it was never a part of my day to day life. I was never mean to those kids nor had any ill will, it just simply wasn’t a part of my world. To say this was a surprise is a fantastic understatement.

I’m not even sure if I should call it “deaf”. Our audiologist never said the word – we couldn’t tell if she was just being nice, or its just not politically correct to use it now. I guess we’ll find out soon. “Hearing Loss” just doesn’t seem the right words – how can you lose something you never had?

So here we are 3 days after the diagnosis and still coming to terms. We’ve had the entire range of emotions: disbelief, denial, anger, humor, confidence and despair, often repeating in random progressions. Its almost like that funny scene in the movie Airplane where Leslie Nielson describes the various stages of food poisoning (“first they will vomit, then be confused, then have uncontrollable flatulence…”), all shown in ridiculously far-too-quick transitions from one to the next.

So here I am starting up a blog. I’ve never done this before, but felt strongly compelled.

Why? Many reasons and no good reason. I want to attack this problem and get strength from numbers. I want to share news with those who want to know, without upsetting those who don’t. I want to learn more about this condition and maybe, just maybe help others like me learn a tiny bit more. I want to (perhaps selfishly) have an outlet for my thoughts and feelings.

But I think above all I want to give Fiona the best shot of kicking ass in life, and I think sharing her story will help make that happen.

What I don’t want this to become is a “woe is me” outlet. We just don’t work that way. Sure there is some of that right now and I can’t promise it won’t resurface from time to time, but I really want this to be a productive, enlightening and (if I don’t F it up) an inspiring story we share along the way. I know Fiona is very lucky to live in the age we do now – there are many great technological and social resources available, and we have hands-down the BEST friends and family there is.

It really takes a village to raise a child. If you’re willing, come join us on this trip and I promise you you will grow with us as part of this journey.

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7 thoughts on “A Fork in the Road

  1. Muriel Lindsay

    It is a privilege to be one of the ones on this journey with you and Eliza and Fiona via your blog Mark. I sense it is a very purposeful journey and that the longer you are on it, the more the purpose will reveal itself. Fiona is leading a merry chase, and we all will learn and grow as a result. All blessings to the three of you. Color me following every step of the way.

  2. Natasha Siso

    Sitting here and tearing up right now…not because I’m sad but because that was so beautifully written and inspiring. Fiona is a blessed little girl to have such great parents. Love you guys and will keep you in my prayers.

  3. Angie Cruce

    You guys show a huge amount of courage and faith in each other by starting a blog. Tami and I will be on this journey with you, Eliza, and Fiona the whole way through. I have many helpful connections and lots of resources to help you guys in multiple ways so please, only when you are ready, just ask and we can talk about it!
    Much love to you all

  4. Aunt Florence

    Love, love, love that picture. Fiona, good luck with your journey. Your mommy and daddy will get you where you need to be.

  5. Amie Amacher

    As long time friends and colleagues of Bruce and Penny, and also parents of two girls, you all have been in our thoughts and prayers. Miss Fiona is blessed to be the center of such a caring family.
    Amie and Zack Amacher

  6. Michelle Tabako

    Mark and Eliza,
    Thank you for sharing your story. I am sad to learn that Fiona does not have hearing. I know you must be grieving the loss of what you hoped and expected when she was born. It is usually harder to adjust and accept something when it comes as a shock, such as this has. I hope you allow yourselves time and permission to grieve the loss of what you expected. It is completely normal and expected and an important part of healing. I see that you have already begun to adjust and accept in these few days. I can feel your strength on these pages. Fiona will show us her strength and she will thrive with your strength, love, guidance and even mistakes.

    I can also feel your anguish as you are tasked with making these profound decisions for Fiona. I can only imagine how difficult it must be. I do not have any personal experience with those who can not hear. Professionally I have worked with some families where family members are deaf. There is a culture among some deaf people where they do not view being deaf as a problem and they shun hearing culture. Personally I do not see any downside to using sign language. We taught and learned sign language with Sam and Nicholas when they were babies. It greatly helped us and them to be able to communicate before they had language. It was very empowering for them to be able to communicate. It also reduces frustration for them, and also for us. I have not seen any evidence that sign language inhibits language. I think it helps empower all involved to be able to communicate more clearly.

    This blog is wonderful in so many ways. Thank you for allowing me and others to be a part of your journey. I know you will have strong days and not so strong days. My thoughts and admiration are with you on all days. I am truly inspired by the way you have embraced this challenge. I know Fiona will inspire everyday!

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