What They are Missing

When Henry was a baby, he had the most beautiful copper colored curls and there didn’t seem to be a person that walked by that didn’t comment on them.  They would gawk at him, and it didn’t hurt that he was as cute as a button, either!  He had enormous blue eyes, and he was a round little cherub.  I could hear them as we walked by, “Oh would you look at that hair.  What I’d pay to have that hair!”  and “Oh what beautiful hair.”  It never failed.  And they would start conversations with me, wondering where he got his hair color…”your husband must have red hair” or “Did you have red hair when you were younger?”  Complete strangers connected for a few minutes by a little redheaded baby boy. 

And then when Henry was two years old, he was diagnosed with a severe hearing impairment bilaterally (both ears).  I sat there in the booth with Henry, as the audiologist played the various tones that he was supposed to respond to.  My heart sank in my chest as I watched him completely ignore the majority of them; he hadn’t heard them.  I came out of the booth, and tried to listen as she gave me the diagnosis.  I don’t think I heard a lot of what she was saying because I was trying so hard not to cry in front of her.  I’ll never forget the audiologist (who also had a hearing impairment), said these exact words when she diagnosed him “It’s not the end of the world.  He’ll wear hearing aids, and he’ll be fine.  No big deal.”  No big deal?  Really?  Cause I’m not feelin’ that part of it. 

When you first think that your child is not “perfect,” it is crushing.  It is crushing in a way that you can’t explain.  I was afraid and angry, SO angry, and alone.  More than anything though, I was so very sad for Henry.  I was sad that all this time he had been trying to live in this hearing world, without hearing very much at all.  He had never heard the birds, or the rain, or the wind in the trees.  He didn’t know what Woody and Buzz sounded like though he had watched Toy Story 100 times.  He hadn’t heard the Christmas music we were playing, or the fire crackle, and he probably never heard the words of the lullabies I sang to him at night.  Had he ever heard our voices?  Did he ever hear me tell him “I love you, Henry?”  Did he know what it sounded like when popcorn popped or when the garage door opened for Daddy to come home? 

A couple of weeks after his diagnosis, we got Henry his hearing aids.  And he liked them.  Because he could hear us.  He could hear the birds, and the phone ring, and the washing machine and the microwave.  For the first time in his life, he would sit and listen to a book, because he could hear it.  And he loved it.  His speech took off and we were thrilled with how well he was doing. 

And the comments about Henry’s hair kept on coming.  But they changed.  A stranger would see him from afar, and say something about his hair, and as they came closer you could see the realization wash over them–that he wasn’t perfect.  That he had something wrong with his ears.  And rather than linger to chat about his hair, they would press on with their business.  Oh how I wanted them to ask me about him.  I wanted to share how proud I was of him and how much he is learning!  And that it is okay that he has hearing aids.  And that he IS perfect.  He is Henry. 

It has taken a long time for children to begin to notice the hearing aids.  But as Henry gets older and becomes more interested in other children socially, they ask about them.  “What are those things on his ears?”  And I explain to the child that he needs those to help him hear.  And that is just fine with them and they keep right on playing.  It is the parents that always act nervously about it.  I remember being at a party when a little boy asked his mother why Henry had “those things on his ears.”  And his mother shushed him and said not to talk about it and then moved away from us.  I wondered why she didn’t just explain that they were hearing aids, and that they help people to hear better.  It broke my heart to see my little boy standing there, watching them walk away from him.  And it made me angry.  I wanted to shout out loud that there is nothing wrong with him.  And that I would love to tell you about my boy, who I am so very proud of.  And “Why don’t you just ask me?!”

They are missing who he is, because they see a piece of blue plastic around his ear.  They are missing his freckles, and the beautiful blue-green color his eyes are turning, and the way the sun glints in his hair.  They are missing his enthusiasm, and his sweet demeanor.  They are missing his curiosity, and how he always wants to help you with what you are doing.  They don’t hear his incredible laugh, the kind that makes you laugh in response, because they are focused on what is “wrong” with him.  They don’t see that he is just like their little boy, perfect.

***

If you want to read more about Henry (who wouldn’t?!):

Copy Cat

Boogers

Hearing the Rain

Hearing Aids Do Have Some Advantages

4 1/2

Language Sample

baseball

or click on “Henry” in the sidebar categories. 

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What They are Missing

24 thoughts on “What They are Missing

  1. Words escape me Kristen. I’d never have realized that you felt that way, because I would be so busy trying to teach my child not to be politically incorrect. I think every mom fears what might come out of her child’s mouth next. Maybe in the future, this will hep me learn to laugh about it instead of tense up. That picture is absolutely gorgeous! Henry is adorable.

  2. Marcy says:

    Ahhh…Kristen that made me cry. You are right…they don’t know what they are missing. Henry is one of the sweetest little boys I know. Sweet with just a touch of imp in him.

    You are so right about it being the parents who are nervous, not the children. I’m not even sure Tim has really even questioned Henry’s aids…he just knows they are a part of Henry. Knowing Henry has been a blessing to our entire family. I’m glad we aren’t missing anything 🙂

  3. Oh my. Let me attempt to write this through the wells of tears in my eyes…

    I’ve been there. I know all too well what it feels like to hear the innocent questions squashed and hushed. The uncomfortable smiles and averted eyes.

    Oh but I hope beyond hope that this generation of kids we’re raising, those who have special needs kids sitting next to them at their lunch tables and reading groups, will learn an acceptance unlike anything we’ve known before. And judging from what you said Henry’s friends think of his hearing aids, and how Cassidy’s friends at school accept and love her for who she is, I think we might just get there.

  4. Beautifully said! He is a gorgeous boy who is perfect in God eyes no matter what.

    We were at the park the other day and there was a young girl with hearing aids. Dennis asked what they were and I explained, he thought they were the neatest things ever.

  5. The precious subject of that photo, the moment captured in the heart’s eye, and your words are amazing – thank you for sharing. I am the other (not the mother, but the other – I like this better than “guardian!”) of a special needs adolescent who incurred brain damage at birth, and then endured the divorce of his parents that wouldn’t end, being terribly misunderstood by step-parents – so much turmoil and politics beyond his understanding. It is tragic on so many levels, and ultimately he was left behind as other families formed. I took him in, my comfortable life turned upside down in a heartbeat, and we’ve never looked back. God is with us and love prevails.

  6. Great blog! I hope you’ll consider adding it to the aggregator at Deaf Village (www.deafvillage.com) — we’d love to have you as part of our community!

  7. Rebecca says:

    Kristen,

    Your experience of Henry’s journey is so touching. I applaud you for sharing it, and for seeing that Henry IS perfect! You have a gift of putting into words the feelings that you and so many other parents experience…I do hope you will consider Elizabeth’s request! I want you to know just how incredibly amazing you and David are as parents to Henry. He could not have asked for better and is SO lucky to have you. It was a joy to experience Henry, if only for a short time, and I look forward to reading more updates from you in the future! You are an incredible mother and Henry is perfect because of you and David!

  8. Kristen – What a lovely touching post! You have such a way with words and I have felt so many of these very same things. It always broke my heart to see people walking over with an engaging smile and then abruptly turn the other direction with a shocked look on their face when they saw that my child was different. Henry looks like such a wise and beautiful little soul — even in black and white, those eyes just pull you in! 🙂 I think you’re both perfect and I’m so very glad you joined in with Beyond Ordinary!

    ~Michelle @ 5MFSN

  9. DANA says:

    Henry looks like a little angel! Thank you for sharing your thoughts… I was viewing blogs to help create a blog for my neice who also is hearing impaired and a perfect little angel. Your words were very inspiring, spoken right from the heart of a loving mother. I hope I can convey my feelings just as well in my neice’s blog. Enjoy all of your little buggers and always remain grateful for your wonderful life!

  10. Hi there,

    My name is Aaron Bateman and I am a copywriter for a Danish advertising agency called Advance. http://www.advance.dk

    One of our clients is a hearing aid manufacturer called ReSound. They are currently introducing a range of hearing instruments for children (something they have not done before) and have asked us to handle the communication for the launch.

    We have proposed that ReSound write a guide for parents just getting to grips with the news that their child has a hearing impairment which features first-hand accounts from families like your own. We believe that parents can get more valuable insight from real accounts such as you recounted in this beautiful piece.

    Would you be interested in discussing this further? We believe strongly that a guide featuring accounts such as yours would be a lot more meaningful and valuable to parents than anything I could write.

    Please do get in touch if you think this appeals and I would be happy to send you more details.

    Many thanks,

    Aaron Bateman

  11. La says:

    I had a sister who had cystic fibrosis and it was obvious she was sick. She was very skinny and her eyes were so tired looking. I learned from her life that usually parents or family members want to talk about these things. Most people just ignore it and act like nothing’s wrong and that can hurt feelings. I’ve learned to ask questions and show interest in a sensitive way. People just don’t understand…..

    This was a beautiful post. =)

  12. This is so timely for me. I believe my 2 year old has a pretty profound speech delay and I’m afraid to have it diagnosed because then, her quirks and the things that make her special could be just a part of an “imperfection” and I don’t want ot see her that way.

    Thank you for this post.

  13. Hello, I am visiting from Heather’s blog, and although my son does not have hearing issues, I am going through the exact same thing.

    I have a bald 2 year old with cancer who used to have beautiful curls that people always commented on. Now adults look at him and you see that look cross their face…I don’t think I have to explain..sounds like you know the look.

    Ironically people still comment on his hair, even though he just has wisps left…its usually old ladies, who tell me they love his hair. Which is so confusing…what do you say to that?

    Nice meeting you. – Beth

  14. I’m visiting from The EO, and this post was truly touching. Heartbreaking too. One of my greatest fears is that one of my children will be sick in some way or have some noticeable thing that sets them apart from others to make them feel ashamed. And I think I’m one of those people who tries really hard not to shy away from differences in others, but still – I sometimes don’t know what to say. This post is so wonderful because it shows how *normal* we all are, despite our differences, while showing me how to be a better human in reacting to such situations. “They don’t see that he is just like their little boy, perfect.” What a beautiful post.

  15. I hadn’t read this one before, since I hadn’t blog-met you yet. And now I’m thinking that I can’t believe how much i love you.

    Wait…that could scare you…

    But really, I appreciate your kindred heart for your child. I wrote once about how people stare at Asher’s shunt (the bump that sticks out of his head, I should say) How I don’t get why they gawk and then slink away. I want them to ask me. Even if I understand why they don’t, I want them to ask me. Because he’s Asher, and it’s best to stay near him, rather than slinking away…cause he’s just the best. I’ll stop rambling now because I know you know what I’m saying 🙂

  16. Hi, I came over from Heather’s. This was beautiful and touching. I have a daughter with epilepsy and one with a heart defect facing her 2nd open heart surgery very soon. These things are not as visible as hearing aids, but I understand the desire for people to look past these issues and see the perfection that is your child. I talk to my kids a lot about the way people are made differently but no better or no worse, whether they are missing a limb, or walk with a limp or can’t see or hear. Kids can be accepting if things are just explained! Thanks for sharing this.

  17. I try to take my cues from the fact that nothing fazes my daughter. I used to think she was naive to brush off another kid if they were being less than kind. Now that she’s older I know that it’s her nature not to let another person ever get her down. There’s so much I can learn from her and not just about wearing “magic ears”.

  18. Beautiful blog post. I felt similarly crushed when my beautiful five year old was diagnosed with unilateral loss due to Enlarged Vestibular Aqueduct. 18 months later, and, just as your audiologist said, “it’s no big deal.” But at the time, it felt like someone took the breath out of me, and I had to mourn the loss of how I imagined her life would be. It took me a few weeks to realize that just is perfect just the way she is, and it’s how she was intended to be. Thank you for sharing your feelings so eloquently.

  19. janette says:

    At the time of my sons hearing loss diagnostic we felt alone…and reading your blog, its as if i am reading feelings and situations we are going through… THANK YOU for sharing your moments.

  20. Katie says:

    Thank you so much for sharing your story. You have really helped me tonight to gather my thoughts on my little girl who has suddenly lost her hearing 6months ago an now has implants. I have noticed people don’t comment on her and how pretty she is anymore and in my eyes she is prettier than ever. I love her new ‘hearing aids’ and am proud of her in every way. Ur blogs really seem to read every emotion and thought I have gone though. Thanks

  21. I just found your blog while searching desperately for a person to connect with over my sons moderately severe bilateral sensorineural hearing loss. He is 3 months old. I am so happy to have found your blog and really want to be connected with other families with a child with similar abilities. Your words made me cry. I feel such a connection to how you described feeling over Henry’s hearing loss. Thank you for writing. Are there any online communities you can recommend to me? I’m not having any luck finding anything. Any Facebook groups, etc. or other blogs?

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