Military Special Needs Network

Proudly Supporting all Military Families with a Special Needs Dependent

Raising Zebras

“When you hear hoof beats think horses, not zebras”
-Dr. Theodore Woodward

In May 2009 we celebrated Josie’s first birthday and a big move- not like a PCS, but a metaphorical move: one from Typical Childville to Special Needstown. At first I was in denial about the whole thing. I told myself that we just lived on the outskirts; my daughter only had a swallowing disorder.

The following year, my other two children were also diagnosed with a swallowing disorder. Now there was no questioning where we were- we were in the heart of the town. This was no longer an issue of underdeveloped throat muscles (the original assumption), there was something else going on. Something invisible. Something rare.

Year after year, test after test, doctor after doctor there was no answer.

One nurse accused me of making up symptoms for attention.

Family asked how much longer I was going to push these tests on my children.

Those that doubted what we were going through didn’t know my children like I did. As tiring as researching specialists, fighting insurance, and doing the tests was, I knew with every fiber of my being that there was something wrong. This wasn’t just a throat problem, this was affecting their whole bodies.

How do you stop pushing for answers when you know your children are sick?

In August, 2012 Josie was diagnosed with a rare brain abnormality. While this wasn’t the answer we were looking for because her siblings don’t have the same abnormality, it was a huge clue to what we were dealing with. A small finding from doctor #5 in 2010, another from doctor #8 in 2011 all began to fall into place.

Yesterday, 1,605 days after we left Typical Childville, we finally have our answer. I will sleep well knowing my instincts about my children were right.

miranda_stars

2 comments on “Raising Zebras

  1. motherofchaos3
    October 10, 2013

    I just wanted to say that our son also has a rare medical condition as well. I know it is hard and can often be frustrating and upsetting. From the start we were told he was just a “sick kid”. But luckily our doctor, in a rural town at a rural Army base, heard zebras; not horses. We were so lucky to have her. If I had not listened to my own thoughts, my son would not be with us. However, because I did, he was switched to a new doctor who was able to “hear” the right answer.

  2. Melissa Morse
    October 10, 2013

    Congratulations! I completely know what it’s like to have to argue with EVERYONE to include myself at times. It took a PCS before anyone believed me that there was something other than a developmental delay going on with our son. Unfortunately, as soon as I got the answer I knew was right the DSM changed and they decided it was in our best interest not to change his medical diagnosis to mild autism because we would lose all the services I’ve spent years trying to get him. The good news was that in the end I was right and I have found a lot of satisfaction and piece of mind. I swear I thought I was going crazy for the longest time because no one believed me.

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This entry was posted on October 9, 2013 by in All.
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