• The boys and I

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    I’m 44, married and live in a sewerless small town on the central coast of California. I am an Inflammatory Breast Cancer survivor. My passions are reading, knowledge, shopping and photography – in varying order depending upon my mood. Though I’ve always wanted to be really good at something, I find that I’m just pretty good at most things. I live with my husband, Daddy-O, and our sons, Ben and Danny who are 10 and 5. Ben has ADHD and enough natural energy to power the Pacific Time Zone… and he’s not afraid to use it. Danny has Norries – a rare genetic disease causing him to be born blind. It’s a crazy, hectic life but I can’t complain any more than usual.
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I find myself home again today with a sick kid.  There’s been a lot of that this winter.

Danny and Ben share a bedroom these days.  I cannot begin to tell you how wonderful that is, how many of our bedtime crisis have been solved.  One of these perks has been that the boys have had to learn to take turns with each other.  Being five years apart in age it doesn’t really come up otherwise.  At bedtime, however, they have to listen to the same music so only one can pick.  Last night was Danny’s night to choose.  He chose the new Zydeco CD his VaVa gave him for his birthday.  He made me turn the volume up to around 4 because he couldn’t hear it.  Bedtime music usually has a volume limit of about 2.5…

That’s just one of the symptoms of hearing loss Danny has exhibited recently.  When we try to talk to him we are peppered with a series of “what’s” and “what did you says”.  He mis-navigates his way through the house.  If I call to him from the kitchen I often find him half way down the hall angry that he can’t find me.  Last weekend he was two feet from the running dishwasher and couldn’t manage to find it.  And, of course, we’ve noticed a marked increase in his vocal volume.

Hearing loss is just one of the many symptoms of Norrie Disease.  It can be mild to profound.  Most of the males with Norrie start showing signs of hearing loss in their late teens to early adulthood.  I know of one boy from our Yahoo! Norrie Group who began wearing hearing aids at around 7.

The real question is whether Danny’s recent hearing loss is permanent or temporary.  Is it due to Norrie or if it’s because he’s had a non-stop head cold in varying degrees most of the winter?  Or is it a combination of both? I’m taking him to his regular pediatrician tomorrow morning.

Sigh…  I am so not ready for this yet.  I’m not ready to see my budding musician lose his greatest joy in life.  I’m not ready to condemn him to a life of silence.  Will I ever be ready?  Doubtful.  But I had hoped to cross this particular bridge later rather than sooner… perhaps when Danny is old enough to understand what’s going on and why.  Hell, I don’t even think he realizes yet that not everyone has “broken eyes”.

Broken eyes.  Broken ears.  Broken dreams.  Broken heart.


6 Responses

  1. Oh, Stell, this just breaks my heart. Praying doesn’t come easy to me these days, as it all just seems so unfair. But know I’m praying this is just a head cold or an ear infection and that he’ll be saved from this part of things for a while longer.

  2. Oh, Stell. There are no words… I just played the “Danny and the Heater” video for Victor and Anthony a few days ago, and they were amazed at his rhythym. Sometimes unfairness abounds, and sometimes it’s just a headcold – I’ll be praying for the headcold, and for stength for you and Ben and Daddy-O.

  3. Danny is a remakable boy…BOY being the key word here. Have you considered THAT to be the real issue at work here? With 3 sighted, hearing boys, I can tell you that they also can’t find things they are standing on (or even holding for that matter), nor can they find me or hear me when I yell for them down the hall. My life, too, is peppered with “what’s” and “I didn’t hear you” and there is very much volume…all the time!!! I am certainly not trying to make light of the pain you feel and anticipate, just trying to provide a possible other explanation…for now. I think of you and pray for you often!!! Much love…

  4. Joining those who find this post hearbreaking, and hoping the issue is the temporary head cold.

    Wishing for some delightful spring days to balance this bump for you and your guys.

    – Joan in PA

  5. And was it a head cold? What did the pediatrician say?

    We went through a phase recently of loud talking, whats, and such, and found it was just impacted ear wax. Clearly you don’t have that reassurance — but I can just imagine how frustrating it must be for you to make yourself understood, and how frustrated he must be, trying to understand you!

    Thinking of you, praying for Danny.

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