Proudly Supporting all Military Families with a Special Needs Dependent
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.
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