Seizure Moms

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2 Responses

  1. trevorsmommy says:

    Seizures were the first symptom that Trevy displayed. Well, actually, it was his early onset left-handedness…but the doctors dismissed my concerns until the seizures. The seizures brought the diagnosis – Infantile Spasms. I had something concrete. Only…I didn’t. Because, as I learned, seizures are really just a symptom of something else. Under the Seizure Umbrella live many, many underlying causes…both known and unknown. I ignored the unknown part and was determined to find something…anything…I could put my hands around (I must have thought I could strangle it that way?). And so we chased testing of every variety (and also entered several studies). Each new test leading us down a new path. At the end of each path…yet another diagnosis. ARX mutation. Mild Cerebral Palsy. PVL. Gray Matter Heterotopia. Hemispherectomy. Left Hemispherectomy. Subtotal Left Hemispherectomy. And more…but I have foggy brain lately!

    I have met new and wonderful families under each smaller umbrella. Some were friends for a season…some still…

    I’m not sure I can really pin-point what knits my heart together more with some than others? Not all of the friends I’ve made have children with the same layers of diagnosis…I suppose it’s because like our neurologist says…there probably isn’t another child just like Trevy! But I do know that these friends (I always want to say moms…I guess it’s because I have more mommy friends than daddy?) are like soul oxygen for me! I NEED them. And LOVE them desperately…

    Anyway…clearly you have a way of stirring up thoughts in my heart! And then I can’t stop rambling! 😉

  2. Wow Danielle, I hadn’t stopped to consider the different paths leading to many different diagnoses. Aidan has different medical descriptions but I’ve never felt that they were the whole thing. I do totally connect with moms not based on medical particulars because I feel that we all get the generalities of the struggle and I appreciate learning from others. And yes, soul oxygen….you are my people and I need to be part of this community as a whole. Another mom described this community as the best friends you wished you hadn’t made. So true. Thanks for sharing.

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