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New Diagnoses are Hard, How to Find Peace in the Storm
New diagnoses are downright scary. Finally getting answers to all our questions shouldn’t be. Finding answers should be reassuring and bring some measure of peace. But it rarely does. I learned this the hard way, as one child after another gained new diagnoses over the years. I was sure nothing could scare me anymore. But…
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Rare Disease Day – Awareness and Action
I don’t always put a lot of stock in awareness “days” or limited awareness campaigns. I used to want to participate in every single one – somewhere along the line I lost a little of my passion. So I am excited about Rare Disease Day not because it’s ONE day of awareness and, hopefully, action;…
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Epilepsy, Rare Disease, and Logan – when Disappointment Strikes
Logan’s Epilepsy and new Rare Disease Diagnosis I’ve written often about Logan’s epilepsy and the breakthrough seizures he has. Late last week, in the midst of a week of multiple breakthrough seizures for Logan, we began another journey into rare disease diagnosis for him as well. To say there is a bit of disappointment would…
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My children have overcome …
My special needs children have conquered the world Not really, though it does sometimes seem like it. It’s both the curse and the blessing of having special needs children, this reality we live in where everything is harder. Our friend’s kids crawled, walked, and talked ahead of schedule. We were overjoyed when ours rolled over…
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My Children have Overcome, Part 2 (Part Andy!)
My special needs kids have overcome the world, part Andy Like most special needs families, we have dealt with many specialists, therapists, emotional turmoil, challenges, and blessings. And, like many other special (awesome!) families, we’ve dealt with it for multiple kids. And, like so many other special needs families, my family’s story can’t easily be told in…
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Rieger Syndrome – Neat Resource for Parents and Researchers
I don’t often find a new resource worth getting this excited over. Though I am waiting for a response back from the folks at this site, I would like to encourage anyone looking for a snapshot search of the information available on their diagnosis to check out WrongDiagnosis.com – Here’s why:
