Everyone who has child with a named disease or syndrome has had to go through some sort of undiagnosed journey. We all start at the same place...the beginning, which can feel more like the end. From the moment you see or sense something is not the way it should be is the moment it all begins.
There is the waiting for test results and thoughts of a bleak future that engulf all of the senses. These feelings are the same between the diagnosed and undiagnosed and yet the difference is so clear. The difference happens when you reach that proverbial Y in the road. At the point of a diagnosis there is a path for you. It might not be the expected path and it is usually overgrown with uncertainty but it is a direction.
Without a diagnosis none of those paths are yours. You are stuck and alone except for the very few other people who get stopped at the same place. Like the island of misfit toys, all that we have holding us together is our struggle. Nobody knows what to say because we just have a list of symptoms and no known cause. We lack that one term that could sum it all up providing clarity and validation...not necessarily a term that describes the state at which you exist on the giant spectrum of possibilities...but a term that says ok you belong here...here is what you can expect.
More than just a support group, it's going to doctors' appointments and knowing where to start the dialogue. With a name there wouldn't be the judgment that comes with the term undiagnosed syndrome; that it isn't a real thing or just something you made up. It's the explanation to friends and families or a new parent at the park who looks at you with questions.
I once had a person say to me that a friend of hers saw my daughter and with an element of disgust asked what was wrong with her. Not only was this a very hurtful comment but made me want to hide my child because I didn't know what to tell people.
I don't want anyone thinking and absolutely not telling me anything hurtful about my sweet and innocent little baby girl who I LOVE no matter what. In my mind, if I had only had a name, strength would follow. I would say it loudly ...This is the card we were dealt and we are going to play this better than anyone else. I seek the label that shouldn't hold people back but rather help them to progress forward. A road map of what we know but an open end of hope for a positive direction.
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