Failure: From the other side


Fail.

The other “F” word.

My New Definition of the word …Fail: to be humbled; to give up control to God; a challenge; to accept

Failing is something that I have dealt with in life whether it be failed friendships, a failed test or two in college, failure to complete a project or my knee rehabilitation, failure to admit when I’m wrong…  ect… but I am 25, I can handle it and when I couldn’t I could accept responsibility and with time work past it, not to mention correct it if possible. For example: begging my college professor to allow me a retake, picking up a project three years later and finally completing it, or asking for forgiveness in that friendship I let slip away. Sometimes I was able to “fix” the failure.  And the power of control that came from my attempts brought peace to any situation.

So today I am humbled by the word “fail” as never before..

Failure looked differently today. It was but one of the first examples before my life where I have to be open to the idea that God is in control of Grady’s body. Post-natal.

We had our Hearing Screening Re-check. At the hospital he failed in his left ear, they assured me it probably was fluid and with a re-check he would most likely pass. As a I sat there in the audiology sound booth today, I looked over at the Dr.’s notes as he hurridly wrote them down as the computer was spitting out results. Then there it was, first the left ear then the right ear: Failed written down. As a new mother holding her precious baby boy, I couldn’t help but feel a sense of helplessness. This wasn’t the type of failure I was familiar with when associated to something so near and dear to my life.  I had no control over his pass or fail, I could not fix it, I could not will it away, or beg for a passing grade for his ears. I just sat there with Grady sound asleep in my arms thinking to myself how he was  so unaware that he just took a test all he wanted to do is sleep.

Just as the test was over the Dr. placed his clip board down next to where we were seated, and the sound made Grady Jump! Ha, he can hear.  Ha, this story isn’t over yet.  Take that audiology machine dated from before I was born. Ha.

We have been pretty lucky so far when it comes to Grady’s health, besides clog tear ducts and a little bout with jaundice, the last two weeks have been full of Blessings. First the Genetics doctor told us he was extremely alert and aware for his age &  diagnosis, then the Pediatric Cardiologist gave us the 2 thumbs up for a perfectly healthy heart,  then the pediatrician said he was a spunky healthy kid…

Grady’s hearing could have failed because his ear drums are so small that the sound is fully unable to get to the ear drums. So next week we go back for an EEG to measure how is brain waves react to sound.  That is one week for prayer, one week of hands to be laid on his tiny little ears. One week to be humbled before God.

It is a different kind of failure, my first to deal with given his diagnosis, and possibly not his last.  It comes as a challenge to me and my control issues, it comes as a challenge to my heart as a mother. But, God works wonders, and his Will will be done on his little ears.

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8 thoughts on “Failure: From the other side

  1. Leah says:

    NO NO NO NO NO!!!This was a BOOTH TEST??? NO NO NO! You need to find a new doctor!! Babies with DS should not be tested in a booth! Their responses to sound cannot be relied upon as accurate, and any doctor VERY familiar with DS would know this. Here is your baptism by fire, where you get to learn that having a medical degree doesn’t mean “all knowing” when it comes to DS! I’ve had a doctor tell me, “I’ve treated lots of kids with DS who have….” Well, “lots” isn’t a very good qualifier, put a number on it! Turns out “lots” was 4 or 5! GAH! That doesn’t count as highly experienced in my book.

    An ABR is the ONLY definitive hearing test for newborns with DS. (and really it should be done sedated, and in an absolutely SILENT environment!) The fact they even bothered with the booth test infuriates me, because it puts unnecessary fear into parents! As you have experienced today!

    So, don’t even waste another moment on today’s test! Ok? Promise me that! LOTS (there’s that non-qualifier again) of babies with DS don’t pass their hearing tests! Part of the problem is their canals are soooo tiny, and often collapse, mimicking a conductive hearing loss. Then there is the problem with fluid. An ABR tells you EXACTLY what’s going on, and where, if any, the problem is.

    Not only am I parent of a child with DS, but I work with kids who are deaf/hard of hearing, (I’ve been a sign language interpreter for 25 years) and my daughter with DS has a moderate bilateral hearing loss and has worn hearing aids since she was 12 months old. Let me put hearing aids into perspective a bit…Really they are NO DIFFERENT than if she needed glasses! No more serious that that! She has a hearing loss at a level that means she hears, but she doesn’t hear CLEARLY. Most kids with DS who have have hearing loss, their loss is at this same level. It is no different than SEEING but not seeing CLEARLY and wearing glasses to help clear things up. It’s VERY COMMON for parents to just kind of shrug their shoulders when their child needs glasses, but when they find out they need hearing aids they freak out, when really…they’re no different.

    But you’re a brand new parent in this walk, and EVERYTHING is going to seem like a big deal! Which is partly why I’m irritated with this doctor, because he clearly doesn’t test every many babies with DS, or he wouldn’t have BOTHERED you with the booth test!

    Ok, stopping my rant now….

  2. Tara says:

    Hee, hee! Leah cracks me up! 🙂 Hang in there, momma! I found the first year to be a whirlwind, but we (at 13mos.) have slowed way down and have hit our stride.

  3. Miriam says:

    I am SO enjoying your blog, and the spiritual depth you bring to your posts. It IS so hard when they point out the failings… it is hard not to take it personally.

    My story about hearing and ear fluid in my child is here:
    http://einstein-syndrome.com/2009/04/22/13-aggressively-treat-ear-fluid-and-upper-respiratory-infections/ Our path included a booth test (I agree with Leah: useless), and ABR. My experience is that the most helpful ear screening is the quick and easy tympanogram. My daughter passed the ABR, but still failed the tympanogram.

    And yes, I took it personally when the tech judged my daughter with her toneless comment about the tympanogram, “Flat.”

    Still, I think that the article above will have some helpful information for you (lots of info in the links as well as the comments).

  4. Carrie says:

    Miss B failed her newborn screen, failed the booth test (I agree with everyone else–both of those were completely pointless!) the audiologists had me freaking out that she was unable to hear though and I kept doing little “tests” to draw my own conclusions (slamming the door, talking to her from behind so she’d have to turn to hear me, etc.). Finally had an ABR done and she passed with textbook-perfect results! Hopefully you’ll find another dr or audiologist that will just do the ABR and give you some peace of mind!

  5. skiingthroughlife says:

    I am going to look into a pediatric audiologist to look into this further. your wisdom to the situation is so appreciated.
    I will take Grady whatever way God Made him, I am not scared, I am open and ready to whatever comes next, I am excited to see what God will be doing here in our home when it comes to Grady, if it means future ear devices, speech devices, sign language, we will move forward from there. My post is more of a initial, internal reaction to the situation… coming from my personality and history…. I didnt loose any sleep over it, because I know God’s Place in it all….

    thank you sooo much!

  6. Leah says:

    I have to appologize, because I was on a roll with SEVERAL issues yesterday, mostly related to medical professionals telling new parents JUNK information, and yours was the 4th such story! (the other 3 were phone calls from new parents in tears over what they’d been told.)

    And yes, the tympanogram is also very important, as it measures the movement of the ear drum, which can tell you if there is fluid in the ear. I’m of the belief that the VAST majority of kids with DS should get tubes in their ears. In my opinion (for what that’s worth! LOL) DS + Fluid in the ears = tubes. No messing around to see if it goes away on it’s own six months later! (which is far too long too wait.) Unfortunately, for newborns with DS the tympanogram is also often inaccurate because of the small/soft canals that can collapse and give a reading indicating fluid when there really isn’t. But, usually by 6 months to a year old it’s reliable.

  7. skiingthroughlife says:

    Leah
    Grady’s tympanogram to measure fluid came back perfect, his ear drums supposedly were working great and their was no fluid detected in his ears!! I think the test we are scheduled to do next week is the ABR, he said he would be hooking up little sensors around his head and would be measuring his brains reaction to sounds.
    In the mean time i called the specialty hospital that delivered him to see if perhaps I can see an audiologist familiar with DS. The local Dr we saw yesterday wasn’t!

    No need for apologies your wisdom is appreciate, this is all soo new to me. Thank you again Leah!!

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