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Wednesday was a day I had dreamed about for months; it was the day the geneticist was going to solve our medical mystery. After 4 years and 13 specialists, we would finally have a name to what we were fighting. I walked into the hospital with my head held high and the invisible weight on my back didn’t seem so heavy. That day was going to be glorious.
Until it wasn’t.
Until we didn’t get our answer.
Until I had to walk out of the office knowing that therapies and life altering tests will need to wait because we don’t have a diagnosis.
While the diagnosis was not rejected, it just wasn’t confirmed. In a way, that is harder for me to process. Over the years, I have made 27 walks out of the hospital without answers and while it wasn’t easy, it was never this crushing. Because those times, we crossed a disorder or two off the list of possible diagnoses.
How do you fight ‘I think this is what your children have, but I won’t give you a diagnosis until after this test that could take a year to complete and may not even give a concrete finding?’
That night, I couldn’t imagine fighting any longer. I wanted to throw in the towel and admit defeat.
But then something changed. After a night of gorging myself on Whoppers and HGTV, I was able to find the resolve to not only continue, but to almost start anew. I am not going to go back to the doctor we saw for her ridiculous test. I don’t care that for the past 3 years she has been our Geneticist; she is fired.
Much to our pediatrician’s chagrin, I am going to a new geneticist. Who knows, maybe even two new geneticist. That way I can pick which one goes with my outfit. (I am somewhat kidding, I am not THAT vain)
I don’t care how I get there, but one of these day, I will be able to walk out of the hospital, diagnosis in hand. It might not be this week or this month, but you can be damn sure it will not be a year from now.
Miranda is a Navy wife and mother to three kids: Hailey, Josie and Teague. All three have a swallowing disorder, Teague has ASD and Josie has Chiari. She was recently diagnosed with Ehlers Danlos syndrome. Miranda is the VP of Community Outreach for the Military Special Needs Network. You can contact her at MirandaFort@MilitarySpecialNeedsNetwork.com
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