Hunting hope

Life with a chronic incurable illness is hard AF. Societal standards tell us to downplay our struggles for a variety of reasons, to focus on the good. Somedays that's just not possible. Recently we've found ourselves in a rut with Adelaide's care and honestly, I'm just really tired. When there is no light at the end of the tunnel how do you hunt down hope? 

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What about CBD?

After watching this week’s “Seizing Life” podcast episode on CBD, I felt the need to breakdown my love/hate relationship with this seizure treatment. It’s, um, complicated. I love the attention CBD brings to epilepsy but I hate the misinformation that comes along with it. This post reflects our personal experience and may be a little rougher around the edges than usual. What can I say, I’m nothing if not honest 🤷‍♀️

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Mast cell 101

It should come as no shock that Adelaide's body likes to keep us on our toes. Just over a year ago we added a new rare disease to Adelaide's growing list of diagnosis: Mast Cell Activation Syndrome. With Rare Disease Day shining a light on so many conditions yesterday, today seemed like the perfect opportunity to share a little bit about Adelaide's other not so fun disease. Who's ready for mast cell 101?! Don't worry I explain it all in typical Kelly fashion: a little bit of science with a lot bit of sass. 

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The Adelaide effect

At the end of the day I’m a woman who is a mom with a child that happens to have special needs. Those descriptors should make us more interesting not make those around us uncomfortable. This week I discuss how as Adelaide gets older, and in turn her disabilities more visible, the way people treat her is changing. How do I recommend you interact with a caregiver and her child with disabilities? Read on to find out!

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Chatty Addy

As Adelaide grows more alert she is starting to communicate with us again. After months of near silence from her, I feel like a new mom getting to know my baby... except she's three and a legit medical mystery. During a recent hair drying sesh she let us know she was still herself by giving us some classic Miss A side eye... she's just much, much, louder.

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It's in the bag

Anymore, Adelaide does not leave home for much more than doctors appointments and maybe the occasional lunch date with mom and dad. One of the big reasons is due to the amount of STUFF that has to accompany us. As her condition has worsened the list of supplies and equipment that must always be with her has grown. This past Christmas Miss A received a duffle bag to replace the backpack we had been using. But what in the world does a little girl need that requires a duffle bag to contain it all? Who is ready to play the Adelaide Cervantes version of “what’s in her bag?”. Hint: no fancy eye creams here but I do have some lube if you need it!

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